Introduction to conceptual explorations on person ...

International Journal of Integrated Care – ISSN 1568-4156 Volume 10, 29 January 2010 URL: http://www.ijic.org Publisher: Igitur, Utrecht Publishing & Archiving Services Copyright:

Editorial

Introduction to conceptual explorations on person-centered medicine The Geneva Conference on person-centered medicine represents the beginning of a process, the precedents of which included WPA Conferences on Person-centered Psychiatry in London, October 2007 and Paris, February 2008, and that is now extended to medicine at large and is inter-institutionally collaborative. In fact, the Geneva Conference on Person-centered Medicine took place on May 29 and 30, 2008 under the auspices and on the premises of the University Hospitals of Geneva, organized by the World Psychiatric Association (WPA) Institutional Program on Psychiatry for the Person (IPPP), in collaboration with the World Medical Association (WMA), the World Organization of Family Doctors (Wonca), the World Federation of Neurology (WFN), the World Federation for Medical Education (WFME), the Council for International Organizations of Medical Sciences (CIOMS), the World Federation for Mental Health (WFMH), the International Council of Nurses (ICN), the International Alliance of Patients’ Organizations (IAPO), and the Paul Tournier Association. The conference was aimed at presenting and discussing the experience on person-centered principles and procedures gained under the WPA IPPP as well as the conceptual bases of person-centered medicine, engaging interactively major international medical and health organizations, and identifying promising organizational steps for the further development of person-centered medical and health care. The conference was presided by Juan Mezzich (IPPP Chair and WPA President), with Michel Botbol as Conference Coordinator, Ihsan Salloum and Tom Sensky as Rapporteurs, and with the organizational support of the IPPP leadership (J.E. Mezzich, G. Christodoulou, B. Fulford, I. Salloum, R. Montenegro, A. Tasman, T. Sensky, H. Herrman, M. Amering), a Geneva Task Force (J. Cox, F. Ferrero, O. Kloiber, B. Ruedi, H.-R. Pfeifer, A. Engstrom, P. Atiase), the Office of the WPA President in New York (E. Millan, Executive Assistant; M. Han, research associate), and small unrestricted grants from Johnson & Johnson and the International Federation of Pharmaceutical Manufacturers and Associations. The conference was opened by the WPA President, the Chief Executive of the University Hospitals of Geneva, and the Rector of the University of Geneva, in the presence of the representatives of the collaborating organizations. The tradition of Geneva as being a setting for encounters of ideas was pointedly noted and celebrated. Part 1 of the supplement corresponds to the first scientific session, which involved presentations of the leaders of the nine participating organizations on the meaning of person-centered medicine from the perspective of their respective institutions. Part 2 presents four special initiatives relevant to person-centered care. These included the World Medical Association’s Caring Physicians of the World, the UK Health Department’s Shared Vision Project, the patient/family/professional trialogs initiated in Europe, and an innovative Geneva University educational project.

Conceptual Explorations on Person-centered Medicine

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International Journal of Integrated Care – Vol. 10, 29 January 2010 – ISSN 1568-4156 – http://www.ijic.org/

Part 3 reviews the conceptual bases of person-centered medicine, including historical, philosophical, and ethical perspectives. They highlighted the articulation of science and ethics as the core of person-centered medicine. Part 4 deals with key experiential factors. The rich and empowering concept of personhood was analyzed, followed by the value of communication and narratives in medical healing, and the crucial framework of culture and spirituality. Part 5 presents a session in honor of Paul Tournier, where the man and his vision were inspiringly reviewed. The crucial role of personal encounters leading to creative scientific and professional contributions were highlighted. Part 6 contains a penetrating analysis of the key domains in the patient’s overall health. Specific attention was paid to illness, suffering, disabilities, and the various aspects of positive health. Part 7 covers clinical care, which was discussed in terms, first, of person-centered diagnosis that would describe ill health as well as positive health by employing categories, dimensions and narratives generated through the clinician, the patient, and family interactions. Also discussed in the seventh session were key elements of personcentered clinical practice and services. Part 8 deals with person-centered public health by examining the patient’s protagonic role in health care, and the enhancement of prevention and health promotion activities by attending to the whole person of the subject. Some contributors came to the Geneva Conference assuming that clinicians always practice person-centered medicine and that no novel initiative was needed. The excellent quality and depth of the presentations and discussions, and their thoughtfulness, highlighted how much there was to share and to learn. The meeting also highlighted the relevance to general medicine and health care of the work already started by the WPA Institutional Program on Psychiatry for the Person (IPPP). The emerging challenge is to develop specific concepts, competencies, procedures, and resources to facilitate the application of a truly person-centered approach in everyday clinical practice. The Geneva Conference demonstrated the great benefits of collaboration in this venture among different medical specialists and across health professions. Presenters were invited to upgrade their papers to extend the value of the conference, with the feedback and guidance of the monograph editors. Juan E. Mezzich, Prof., WPA President 2005–2008 Jon Snaedal, Prof., WMA President 2007–2008 Chris van Weel, Prof., Wonca President 2007–2010 Iona Heath, Dr., Royal College of General Practitioners President 2009–2012


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Section on International Organization Perspectives on Person-centered Medicine

World Psychiatric Association perspectives on person-centered psychiatry and medicine Juan E. Mezzich, MD, PhD, Professor of Psychiatry and Director, International Center for Mental Health, Mount Sinai School of Medicine, New York University, USA; World Psychiatric Association President 2005–2008 Correspondence to: Juan Mezzich, E-mail: [email protected]

Introduction The status of psychiatry around the world, as perceived during the first decade of this millennium reflects the great opportunities and challenges for understanding the human mind. We have learned much about neurotransmission, learning, memory, and brain development, and these basic insights have made possible the design of several classes of psychoactive drugs and psychosocial techniques for treatment [1]. Nevertheless, mental disorders remain the greatest source of burden and disability to people around the world [2]. The classification of mental disorders is still based on behavioural descriptions that do not correspond to basic mechanisms and are not as prescriptive of treatment methods as it was once hoped they would be. There is little data to guide the combination of multiple treatments for particular patients. People with mental disorders feel stigma and discrimination, which reduces their access to methods that promote recovery. The status of practicing psychiatrists is being diminished by managed care systems that reduce patients to diagnostic codes and reduce psychiatrists to technicians who just prescribe drugs. And understanding of the clinical condition and contextualization of care are still largely underdeveloped. The challenges facing psychiatry are similar to those facing general medicine in the treatment of all common and complex disorders like diabetes and cardiovascular conditions. The recovery movement starting in the rehabilitation field has pointed out the need to consider both the positive and negative aspects of health and a substantial change in perspective, particularly for long-term care. There is urgency to involve all stakeholders in diagnosis and treatment processes and to emphasize hope, empathy, and respect for the needs of the whole person, as described by Alanen and colleagues [3].

Background Ancient Greek philosophers and physicians, like Socrates, Plato and Hippocrates, advocate holism in Medicine [4]. Socrates taught that “if the whole is not well it is impossible for the part to be well” and that “everything comes from the psyche, bad things and good things for the body and the whole person” [5]. It is striking that these perspectives are re-emerging with renewed vigour in today’s world through assertions that there is no health without mental health and by focusing local and international health efforts on the totality of the person [6–8]. And here the person is to be thought of in a contextualized manner, in the words of the philosopher Ortega y Gasset, I am I and my circumstance. In addition, evidence is growing for the value of integrating mental health into general health and public health practice [9]. These concerns are emerging in response to many deficiencies in health care recognized in both developed and developing countries, including neglect of the needs of real people and the fragmentation and inadequacies of health and social services [1, 10–13]. A major perspective to deal with these limitations emphasizes a comprehensive and holistic concept encompassing ill and positive health as well


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as a biological, psychological, social, cultural and spiritual framework [14–18]. The mental health care field in many countries is being stimulated by a recent movement emphasizing recovery and resilience [19, 20] which promotes the fulfilment and empowerment of patients as active participants in their own health care. Also, increasing interest is appearing towards clinicians applying themselves as whole human beings, and not as impersonal providers of care [21, 22]. All these perspectives reflect growing aspirations towards meeting scientifically, humanistically and ethically our responsibilities as psychiatrists and health professionals [23–25].

WPA institutional program on psychiatry for the person The institutional program on psychiatry for the person: from Clinical Care to Public Health (IPPP), approved by the 2005 General Assembly, involves a WPA initiative affirming the whole person of the patient within his context as the center and goal of clinical care and health promotion, at both individual and community levels. This involves the articulation of science and humanism to optimize attention to the ill and positive health aspects of the person. As care is basically a partnership experience, the program involves the integration of all relevant health and social services. Furthermore, the program also involves advancing appropriate public health policies. Garrabe and Hoff (in press) have noted that the principles behind psychiatry for the person could be already detected at the very beginnings of the WPA. As an introduction to the whole Institutional Program, two editorials were published in World Psychiatry, one broadly focusing on articulating medicine’s science and humanism [26] and another on the dialogic basis of our profession [27].

Conceptual component This component deals with analyses and delineations of the conceptual bases of psychiatry for the person. It has produced an editorial and a paper in international journals presenting the objectives of this component [28, 29]. Additionally, a monograph on the conceptual bases of psychiatry for the person is being prepared with the following table of contents: Introduction, 1. Historical perspectives, 2. Philosophy of science perspectives, 3. Ethics perspectives, 4. Biological perspectives, 5. Psychological perspectives, 6. Social perspectives, 7. Cultural perspectives, 8. Spiritual perspectives, 9. Users perspectives, and 10. Literature and art perspectives.

Clinical diagnosis component There are two work objectives in this component. The first one involves collaborating with WHO towards the development of ICD-11. There was a preliminary background phase in this process during the first half of this decade involving principally the WPA Classification Section and the WHO Classification Office and leading to two monographs [30, 31]. A full development of the ICD-11 Mental Disorders Chapter has started in early 2007 under the direction of the WHO Mental Health Department. The second and main work objective of the IPPP clinical diagnosis component is the development of a personcentered integrative diagnosis (PID). At its heart is a concept of diagnosis defined as the description of the positive and negative aspects of health, interactively, within the person’s life context. PID would include the best possible classification of mental and general health disorders (expectedly the ICD-11 classification of diseases and its national and regional adaptations) as well as the description of other health-related problems, and positive aspects of health (adaptive functioning, protective factors, quality of life, etc.), attending to the totality of the person (including his/her dignity, values, and aspirations). The approach would employ categorical, dimensional, and narrative approaches as needed, to be applied interactively by clinicians, patients, and families. A starting point for the development of PID would be the schema combining standardized multiaxial and personalized idiographic formulations at the core of the WPA International Guidelines for Diagnostic Assessment (IGDA) [32–34]. As an introduction to this IPPP component’s work, a broad ranging volume on psychiatric diagnosis: challenges and prospects [35] has been prepared. A paper on “Towards innovative international classification and diagnostic systems: ICD-11 and person-centered integrative diagnosis” has been published by JE Mezzich and I. Salloum


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as an invited editorial in Acta Psychiatrica Scandinavica [36]. Other papers pertinent to this developmental work include an editorial on Clinical Complexity and Person-centered Integrative Diagnosis [37] and On Person-centered Integrative Diagnosis [38].

Clinical care component The thrust of the work of this component has been educational efforts towards achieving person-centered care. The two main developments being planned are an approach to person-centered clinical care and a curriculum to carry out training of the above-mentioned approach. The teaching of medicine and that of psychiatry in particular, has experienced many changes lately. There was a time when the core curriculum in psychiatry, written by the WPA together with the World Federation for Medical Education, became a landmark because it did not only define the competencies in psychiatry that every physician should be taught, but mainly because it called our attention on prevention of illness and promotion of health. Once these two concepts have been widely accepted, and after a period of revolutionary scientific and technological advances which include outstanding molecular and genetic research, and the articulation of bio-psycho-social, cultural and spiritual approaches with interdisciplinary collaboration in partnership with patients, families and advocacy groups, the time has come for another major change in our approach to psychiatry: considering the whole person of the patient in context as the center of our work.

Public health component Public health in modern times has a broad scope as the organized global and local effort to promote and protect the health of populations and reduce health inequalities. This ranges from the control of communicable diseases to the leadership of intersectoral efforts in health [39]. Evidence is growing for the value of integrating mental health in general health and public health practice [9, 40]. Despite this, public health programs in many countries around the world have yet to recognise and include mental health and mental illness as areas of relevant action. Psychiatry for the person is a basis for advocacy that emphasises the value and dignity of the person as essential starting points for public health action. This includes development of policies and services, and the research and evaluation supporting these. Failure to recognise the humanity and dignity of citizens living with mental illness as well as the value of mental health to the individual and community have resulted in abuse and neglect of the former and lost opportunities to improve mental health through population-based and person-based initiatives. The neglect of individual needs and the fragmentation and inadequacies of health and social services are matched by patchy policy development [10, 12, 13, 41]. Public health actions to promote mental health prevent illness and provide effective and humane services benefit from and contribute to the development of psychiatry for the person.

IPPP events 1. London Conference on Person-centered Integrative Diagnosis and Psychiatry for the Person: It was organized on October 26–28, 2007 by both the WPA IPPP and the Health Department of the UK. It represented a powerful opportunity for synergism between person-centered care and Britain’s Shared Vision Project. 2. Paris Conference on Psychiatry for the Person: This was organized on February 6–8, 2008 by the WPA IPPP, the French Member Societies of WPA, and the five WPA European Zonal Representatives. The city and the professional community that served 58 years ago as the cradle of WPA, sponsored a special type of conference, clearly focused and intensely interactive, without commercial accompaniments. 3. Philippe Pinel Prize on Psychiatry for the Person: Articulating Medicine’s Science and Humanism: In 2007, the WPA Executive Committee established this Prize to honor Philippe Pinel, a pioneer in the quantitative systematization of clinical psychiatry and an inspiring humanist who broke the chains of mental patients. The winner in 2008 is Prof. Yrjo Alanen of Turku, Finland, world-acclaimed for his innovative work on Need Adaptive Assessment and Treatment integrating scientifically valid therapeutic techniques with attention to the experience and views of patients with psychotic disorders.


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Collaborative extension of the person-centered approach to general medicine Over the past few years, the leadership of the WPA started to cultivate close relations with the leaders of major international medical and health organizations. In the course of these interactions, a topic that attracted considerable common interest has been the person-centered approach to medicine. This led to the preparation of a Geneva Conference on Person-centered Medicine on May 29 and 30, 2008. It took place under the auspices and on the premises of the University Hospitals of Geneva, organized by the WPA IPPP, in collaboration with the World Medical Association (WMA), the World Organization of Family Doctors (WONCA), the World Federation of Neurology (WFN), the World Federation for Medical Education (WFME), the Council for International Organizations of Medical Sciences (CIOMS), the World Federation for Mental Health (WFMH), the International Council of Nurses (ICN), the International Alliance of Patients’ Organizations (IAPO), and the Paul Tournier Society. The conference was aimed at presenting and discussing the experience on person-centered principles and procedures gained under the IPPP as well as the conceptual bases of person-centered medicine, engaging interactively major international bodies, and identifying promising organizational steps for the further development of personcentered medical and health care.

Colophon The efforts for person-centered care that started in the World Psychiatric Association and other institutions and groups are now productively unfolding through collaboration with major international medical and health organizations.

References 1. US Surgeon General. Mental health: report of the Surgeon General. Rockville, Maryland: Department of Health & Human Services, US Public Health Services; 1999. 2. Murray CJL, Lopez AD. A comprehensive assessment of mortality and disability from diseases, injuries and risk factors in 1990 and projected to 2020. Cambridge, MA: Harvard University Press; 1996. (The Global Burden of Disease Series). 3. Alanen YO, Lehtinen V, Lehtinen K, Aaltonen J, Räkköläinen V. The Finnish integrated model for early treatment of schizophrenia and related psychoses. In: Martindale B, Bateman A, Crowe M, Margison F, editors. Psychosis: psychological approaches and their effectiveness. Glasgow: Gaskell (ISPS); 2000. pp. 235–65. 4. Christodoulou GN, editor. Psychosomatic medicine. New York: Plenum Press; 1987. 5. Plato. Harmidis Dialogue, 156 E. Athens: Papyros editions; 1975. 6. WHO’s new global strategies for mental health. Geneva: WHO; 1999. (WHO Factsheet 217). 7. U.S. Presidential Commission on Mental Health. Achieving the promise: transforming mental health care in America. Final Report. Rockville, Maryland: US Dpt. Health and Human Services; 2003. (DHHS Pub N: SMA-03-3832). 8. WHO European Office. Mental health action plan for Europe: facing the challenges, building solutions. Helsinki: WHO European Ministerial Conference on Mental Health; 2005. (EUR/04/5047810/7). 9. Herrman H, Saxena S, Moodie R. Promoting mental health: concepts, emerging evidence, practice. Geneva: WHO; 2005. 10. Strauss JS. The person – key to understanding mental illness: towards a new dynamic psychiatry, III. British Journal of Psychiatry Suppl. 1992 Oct;161(18):19–26. 11. Bloch S. The art of psychiatry. World Psychiatry 2005;4(3):130–4. 12. Sharfstein SS. Response to the presidential address: advocacy for our patients and our profession. American Journal of Psychiatry 2005 Nov;162(11):2045–47. 13. Fulford KWM, Dickenson D, Murray TH, editors. Healthcare ethics and human values: an introductory text with readings and case studies. Malden: Blackwell; 2002. 14. Antonovsky A. Unraveling the mystery of health. San Francisco: Jossey-Bass; 1987. 15. Ricoeur P. Time and narrative. Chicago: University of Chicago Press; 1990. 16. Sensky T. Patients’ reactions to illness. British Medical Journal 1990 Mar 10;300(6725):622–3. 17. Cloninger CR. Feeling good: the science of well-being. New York: Oxford University Press; 2004. 18. Mezzich JE. Positive health: conceptual place, dimensions and implications. Psychopathology 2005 Jul–Aug 38(4): 177–9. 19. Anthony W. Recovery from mental illness: the guiding vision of the mental health service systems in the 1990s. Psychosocial Rehabilitation Journal 1993;16:11–23. Conceptual Explorations on Person-centered Medicine

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20. Amering M, Schmolke M. Recovery – Das Ende der Unheilbarkeit [Recovery – the end of incurability]. Psychiatrie-Verlag: Bonn; 2007. [in German]. 21. Borg M, Kristiansen K. Recovery-oriented professionals: helping relationships in mental health services. Journal of Mental Health 2004;13(5):493–505. 22. Cox J, Campbell A, Fulford KWM. Medicine of the person. London: Kingsley Publishers; 2006. 23. Becker RE. PTSD: a disorder and a reaction. Editorial. American Journal of Psychiatry 2005;162(12):2215–19. 24. Mezzich JE. Comprehensive diagnosis: a conceptual basis for future diagnostic systems. Psychopathology 2002;35(2–3): 162–5. 25. Schaffner K. Behaving: what’s genetic and what’s not, and why should we care? Oxford: Oxford University Press; 2004. 26. Mezzich JE. Psychiatry for the person: articulating medicine’s science and humanism. World Psychiatry 2007;6:1–3. 27. Mezzich JE. The dialogal basis of our profession: psychiatry with the person. World Psychiatry 2007;6:129–30. 28. Christodoulou G, Fulford B, Mezzich JE. Psychiatry for the person and its conceptual bases. International Psychiatry 2008;5:1–3. 29. Mezzich JE, Christodoulou G. Psychiatry for the person and its ethical perspectives. South African Journal of Psychiatry 2007;13:71–3. 30. Mezzich JE, Ustun TB, editors. International classification and diagnosis: critical experience and future directions. Psychopathology 2002 March–June;35(2–3):59–201. (Special Issue: Proceedings of a symposium. London, United Kingdom, July 2001). 31. Banzato CEM, Mezzich JE, Berganza CE, editors. Philosophical and methodological foundations of psychiatric diagnosis. Psychopathology 2005 Jul–Aug;38(4):155–230. (Special Issue). 32. World Psychiatric Association (WPA). Essentials of the World Psychiatric Association’s International Guidelines for Diagnostic Assessment (IGDA). British Journal of Psychiatry 2003;182(Suppl. 45):37–66. 33. APAL. Guia Latinoamericana de Diagnostico Psiquiatrico [Latin American Guide of Psychiatric Diagnosis] (GLADP). Guadalajara, Mexico: Editorial de la Universidad de Guadalajara; 2004. 34. Mezzich JE, Banzato CEM, Cohen P, Cloninger CR, First MB, Goldman HH, et al. Report of the American Psychiatric Association Committee to Evaluate the DSM Multiaxial System. Presented to the APA Assembly; 2005 May 21, Atlanta (Georgia), USA. 35. Salloum IM, Mezzich JE, editor; Psychiatric diagnosis: challenges and prospects. Chichester, UK: Wiley-Blackwell; 2009. 36. Mezzich JE, Salloum IM. Towards innovative international classification and diagnostic systems: ICD-11 and personcentered integrative diagnosis. Acta Psychiatrica Scandinavica 2007;116:1–5. 37. Mezzich JE, Salloum IM. Clinical complexity and person-centered integrative diagnosis. World Psychiatry 2008;7:1–2. 38. Mezzich JE, Salloum IM. On person-centered integrative diagnosis. Die Psychiatrie 2007;4:262–5. 39. Beaglehole R, editor. Global Public Health: a new era. Oxford: Oxford University Press; 2003. 40. Rutz W. Social psychiatry and public mental health: present situation and future objectives. Time for rethinking and renaissance? Acta Psychiatrica Scandinavia Suppl. 2006;429:95–100. 41. WHO. The World Health Report 2001: Mental health: new understanding, new hope. Geneva: World Health Organization; 2001. Available from: http://www.who.int/whr/2001/en/.


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World Medical Association perspectives on person-centered medicine Jon Snaedal, Prof., President of the World Medical Association 2007–2008, Reykjavik, Iceland Correspondence to: Jon Snaedal, E-mail: [email protected]

In countries with well established health systems, the acute service is by and large acceptable with fairly good access to acute medical transportation and emergency service. Acute surgical and medical intervention is provided for in a timely fashion. The service is based on a system which is technically well equipped and provides health care personal around the clock, all days of the year. The service is task oriented and its professionals are well trained in sorting out the health problems. As a result the right type of service is delivered to the right patient by doctors and other health professionals specifically trained for each particular task. However, the most common tasks of modern health services are the chronic conditions and they are not dealt with inside the acute service. To meet that challenge, various systems for services have been established in a task oriented manner such as outpatient clinics for diabetics, hypertension, psychiatric disorders and many others. These systems have been established using the same principles as in the acute service by sorting out the patients in order to deliver the right type of service to the right type of patient. The service for chronic conditions is basically planned and provided for during office hours with some exceptions. The challenges are however very different from those in the acute service and this has only partly been recognized. The major challenges for delivery of service for chronic conditions are to provide for long time commitment on behalf of the doctor and to use a holistic approach to the patient and his problems. These different challenges are closely linked. Long time commitment of a doctor to a patient’s chronic condition is one of the most valued forms of health service. The cornerstone of this is the doctor-patient relationship based on trust and mutual understanding of their roles. This is therefore not only a matter of how the work is organized as it has its basis in the ideology of providing the service in a personalized way. It can be argued that today this ideology has not been valued as before. Health services are organized by schedules that do not take into account the importance of this personal commitment and the patient attending the service has limited choice of a doctor. It is one of the major challenges inside our health care systems to change this and for that we need to begin within our mind and to change our attitude. The other aspect, the holistic approach is in a way linked to the former aspect. By establishing a long standing relationship by the commitment of the doctor, he will come to know the patient more as a person than as ‘a case’ as is usually done in the acute service. The classical example of this is the family doctor. In some settings their service has however been changed and the system in which they work does not take into account the importance of the personal commitment. Another way of delivering long time service is by using the team work approach. A team is traditionally lead by a doctor but the role of other team members might differ. They attend to other parts of the patient’s problem than the doctor and when a team is effective, a holistic picture not only of the patient but also of his family and social situation is made. The team approach has been established in some disciplines more than in others, notably in rehabilitation and in geriatrics. There are however great differences in how teams are functioning. In an interdisciplinary team every member of the team collects his type of information and the team chaired by a doctor comes to a mutual conclusion of the nature of the problems and how to deal with them. In a multidisciplinary team the members are more independent. Each


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and every member of the team acts independently taking into account the information received from other team members. These teams are only loosely chaired and the team is usually not coming to a mutual conclusion. It is therefore important not only to advocate team work in the services for chronic conditions but it is also important to realize what kind of team is to be formed. The World Medical Association (WMA) has addressed the person-centered medicine to some extent but to be honest, this has not received too much attention of the profession and in the association. One of the most important declarations of the WMA is the Declaration of Lisbon on the Rights of the Patient, first accepted in 1981 and last amended in 20051. It is of interest to see that the person-centered medicine is not very obvious in this declaration. Only two paragraphs directly related to this issue can be found in the Declaration of Lisbon: •• 1f. The patient has the right of continuity of health care. •• 2a. The patient has the right to choose freely and change his/her physician etc. These are however very important parts of the right of the patient and are directly related to the need of long-term commitment as well as the need for personalized care. In another paragraph (1c), it is stated that the patient shall always be treated in accordance with his/her best interest but it is not stated that this should be done in a personalized way. It can be argued that in most instances this means that the best interest of the patient is to be able to have access to his own doctor that knows his problems and to which the patient has the greatest confidence in. The Declaration of Ottawa on the Right of the Child to Health Care2, accepted in 1998, is to great extent based on the Lisbon declaration and in this statement there is also a paragraph on the right of the child to continuity and quality of care. This declaration is now up for major revision inside the WMA and it will be interesting to learn to which extent the person-centered care will be visible in the document. This is of importance as this declaration like many others of the WMA is considered a basic document for all doctors to adhere to. A few years ago there was an initiative of the WMA to focus on the personal care of the doctors of the world called “The most caring physicians of the world” [1]. The WMA stressed that the prerequisites to be chosen in this initiative were the virtues of doctors treating and caring for patients but not for research, teaching or leadership. This initiative was very well received in all parts of the world and it was a difficult task to choose the doctors to be presented in the book that was published as a result of the initiative. Person-centered medicine is therefore a timely issue to be discussed and to be taken into account by health professionals as well as those organizing the health services throughout the world.

Reference 1. Nigel Duncan, editor. Caring physicians of the world. Ferney-Voltaire (France): World Medical Association; 2005.

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Available from: http://www.wma.net/en/30publications/10policies/index.html Available from: http://www.wma.net/en/30publications/10policies/index.html


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World Organisation of Family Doctors (Wonca) perspectives on person-centered medicine Iona Heath, Dr., Executive Committee, World Organization of Family Doctors (Wonca), Royal College of General Practitioners President 2009–2012, UK Correspondence to: Iona Heath, E-mail: [email protected]

The acronym Wonca stands for the World Organisation of National Colleges and Academies of General Practice/ Family Medicine. This has now been shortened to the World Organisation of Family Doctors although we retain the rather endearing acronym. Wonca is indeed a global organisation with 119 member organisations in 116 countries across every continent. The stated aspiration for Wonca is “A family doctor for every family in the world” and, by implication, because not everyone lives in a conventional family, “A general practitioner for every person in the world”. When, as an adolescent, I was first thinking of studying medicine, my own family doctor told me that: “In hospitals, the diseases stay and the people come and go; in general practice, the people stay and the diseases come and go.”

In this sense, general practice is fundamentally person-centered and it is Ian McWhinney who has pointed out that [1, p. 433]: “[General practice] is the only discipline to define itself in terms of relationships, especially the doctor-patient relationship. … Clinicians in other fields form relationships with patients, but in general practice, the relationship is usually prior to the content. We know people before we know what their illnesses will be.”

In A Fortunate Man, his magnificent account of the work of a rural family doctor, published in 1967 [2], John Berger described the “individual and closely intimate recognition” which is necessary. He explains the need for the doctor to come close enough to see and to hear and so to recognise the particular suffering individual. It is this recognition that underpins the commitment to person-centered medicine. The practice of medicine depends on the ability to make a connection between the generalisations of biomedical science and the unique individual experience of illness and disease. In Doctor Zhivago, Boris Pasternak wrote [3]: the mystery of the individual is precisely what must be put into the facts to make them meaningful.

The interface between illness and disease is the point at which the vast undifferentiated mass of human distress and suffering meets the taxonomy of scientific medicine which have been developed to enable humanity, to a still very limited extent, to understand and control the experience of illness. Illness is a perception of something being wrong, a sense of unease in the functioning of the body or mind; disease is a theoretical construct which offers the benefits and risks of scientific medicine. General practitioners have learnt from experience the benefits, to both the individual and to society, of holding the border between subjective illness and the disease categories recognised by biomedical science; of confining people within diagnostic categories only when such labelling will be positively useful to them; and of deliberately minimising exposure to the harms of medical technology. In this way, general practice directs both the power and the rising costs of biomedical science where it can help rather than where it harms. The grounding reality of medicine is the patient’s subjective story of their symptoms. Everything that comes after is an abstraction from, and an approximation to, that reality. Illness belongs to individual patients; disease belongs to science. The former is subjective, the latter ‘objective’. The patient tells us the story of their illness; we must then Conceptual Explorations on Person-centered Medicine

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summon our knowledge of biomedical science, which by its very nature turns the patient into a standardised human object, and make a judgement as to whether the patient’s illness fits into a useful model of disease. The expectation is that such a model will offer effective treatment or even cure. Medicine aspires to be a science whose object is also a subject, and there is great danger in turning a human being into an object [4]. The dangers are already great with physical illness where the patient can very readily feel that the particularity of their experience has been lost and that the doctor can no longer see the person behind the mask of the disease. But, at least in physical illness, the objectification of the body is a process that is already familiar to the patient. The sick body obtrudes into consciousness in a way that the healthy body does not. The body becomes an object which impedes the person’s planned or desired activities. There can be no exact parallel in mental illness—no one can perceive their own mind as an object. The mind is essentially and inevitably subjective. We experience our own minds as subjects and we also experience the minds of others not as objects or as third persons but as a second person—a you—as another and autonomous subject. This essential subjectivity seems to me to undermine the application of the biomedical model of science in psychiatry in a very fundamental way. The steps of objectifying and generalising are inevitably partial in the face of the unique individual subjectivity of each human mind. In the wonderful and inimitable Tristram Shandy, Laurence Sterne describes the relationship between body and mind [5, p. 114]: “A man’s body and his mind, with the utmost reverence to both I speak it, are exactly like a jerkin, and a jerkin’s lining; rumple the one, you rumple the other.”

The Cartesian distinction of mind and body has had extraordinary reverberating consequences in the centuries since the French Enlightenment. Many have increased our understanding but some remain profoundly troublesome. Biomedical science assumes the validity of such a split but almost all experience of illness denies it. All bodily illness has consequences for the mind and all mental illness affects the body. I want to cite just one paper by van Os et al., communicative skills of general practitioners augment the effectiveness of guideline-based depression treatment [6] to demonstrate the overwhelming importance of the quality of the personal relationship between doctor and patient. An optimal outcome for the patient requires not only sound medical knowledge but also a good relationship between doctor and patient. However, I also want to mention the work of Heidi Bøgelund Frederiksen to show that the much valued continuity of care, which is a defining feature of general practice/family medicine, only adds value if the patient feels seen and recognised as a person, with a body, a mind and a social setting, during the first encounter. The Norwegian philosopher Arne Johan Vetlesen argues that empathy can only exist between two subjects—between Martin Buber’s I and Thou [7]. “… whereas there is such a thing as self-pity or self-love, there is no self-empathy. In empathy there is always a thou, never only a me. Empathy sets up, indeed helps produce and sustain, a relation a between, involving one subject’s relating to another …” [8].

Empathy is a precondition of person-centered medicine.

References 1. McWhinney I. The importance of being different. British Journal of General Practice 1996 Jul;46:433–6. Available from http:// ukpmc.ac.uk/articlerender.cgi?artid=602219. 2. Berger J, Mohr J. A fortunate man. Harmondsworth: Allen Lane, The Penguin Press; 1967. 3. Pasternak B. Doctor Zhivago. 1958. 4. Heath I. Mental illness, general practice and society. In: Elder A, Holmes J, editors. Mental health in primary care. Oxford: Oxford University Press; 2002. p. 55–67. 5. Sterne L. Tristram Shandy. Cambridge: Cambridge University Press; 1988. 6. van Os TW, van den Brink RH, Tiemens BG, Jenner JA, van der Meer K, Ormel J. Communicative skills of general practitioners augment the effectiveness of guideline-based depression treatment. Journal of Affective Disorders 2005;84:43–51. 7. Downie RS, Jodalen H. “I-Thou” and “Doctor-Patient”: a relationship examined. In: Jodalen H, Vetlesen AJ, editors. Closeness: an ethics. Oslo: Scandinavian University Press; 1997. p. 129–141. 8. Vetlesen AJ. Perception, empathy and judgment; an inquiry into the preconditions of moral performance. Pennsylvania: The Pennsylvania University Press; 1994.


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Neurological perspectives on person-centered medicine Johan A. Aarli, Prof., University of Bergen, Norway, President, World Federation of Neurology Correspondence to: Johan Aarli, E-mail: [email protected]

The doctor-patient relationship has developed from unspecified good bedside manner to patient-centered medicine with an increasing focus upon the recognition of patients’ ethical and legal rights. In any given clinical situation, our medical decisions are made in the balance between the physician’s knowledge and experience, and the patient and his relatives’ values and preferences. Shared decision-making is a part of each specialty, but it will be modified according to the clinical problems specific for that specialty. I meet patients today in a way that differs from when I was a young man. It may partly be due to age and experience, but also to the development in clinical medicine. Medicine today is different from how it was in the 1950s. I am confronted with the patient’s subjective presentation of symptoms, anxiety, and personal interpretation of symptoms together with personal values and health-care goals. I can contribute with specialized knowledge, training and experience regarding medical diagnosis, prognosis, options, outcome and treatment. Together, we can reach a mutually agreeable medical care plan that represents the best treatment for that patient. Each clinical specialty presents with specific problems. Every specialty has its own philosophy, its ivory tower if you like. And in each clinical specialty—from psychiatry to neurology, surgery or rheumatology—the nucleus lies in the meeting between a patient, his family and a physician. What is person-centered medicine in neurology? For me, the recognition and identification of the concept of personrelated medicine appears in the interface between neurology and other specialties, mainly family medicine and psychiatry. Some important and common disorders such as epilepsy and psychogenic non-epileptic seizures, Parkinson’s disease and dementing disorders represent challenges both to neurology and to psychiatry. Epilepsy is a common disorder, and comprehensive care of the epileptic patient requires attention to the psychological and social consequences of epilepsy as well as to the control of the seizures. But neurologists and psychiatrists do not always collaborate as needed for the treatment of patients with epilepsy. Psychogenic non-epileptic seizures are seen in 20–30% of patients referred for refractory seizures. Conversion symptoms remain very common in neurological practice, a clinical reality that is not reflected in research activity, teaching or public awareness. But these patients are not seen by psychiatrists any more. More often, they are referred to neurology outpatient units. The two specialties have been removed from each other, and these patients were orphaned. My main problem as a neurologist is to deliver the diagnosis to patients and their families. And they are not uncommon in epilepsy units. They are easy to diagnose using EEG video monitoring. Psychogenic non-epileptic seizures are seen in 20–30% of patients referred to our epilepsy clinic for refractory seizures. The estimated prevalence in the general population is 2–33 cases per 100,000 population. They are so dramatic, because they often occur in situations where they receive attention, such as at a cinema, a theatre, in buses etc. And they are brought to hospital as emergencies, often after a physician has injected benzodiazepines intravenously. Treatment options preferred by the patients do not necessarily be medically optimal. Communicating a diagnosis such as conversion disorder may release opposition in the patient and denial in relatives, and may sometimes be felt as outside the shared decision-making process. Psychiatric symptoms are also common in patients with Parkinson’s disease, but such patients are infrequently screened for depression or dementia. Treatment strategies for depression and for dementia may differ with the


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two specialties of psychiatry and neurology. Are we able to participate in a shared decision-making? The patient is, because he knows the full spectre of his disease. But are we, when each of us can identify only parts of the full picture, able to participate? I firmly believe that the borders between the specialties constitute an obstacle to full understanding of the patient’s situation [1]. Patients who have lost the capacity to participate in the decision process as a result of reduced mental capacity due to dementia, encephalopathy or coma, present special problems for shared decision-making. Some patients with bulbar paresis with anarthria and generalized motor incapacity are unable to communicate their decision. Shared decision-making or surrogate decision-making may not always represent the true wishes of an incapacitated patient. The advances in modern genetics may represent future neuro-ethical challenges. Controversies will have to accompany the ethical legitimacy of using technologies that can modify the brain for the purpose of improvement [2]. There are clinical situations where the borders of knowledge are being moved, and there is a need for collaboration in which different specialties may have different codes of medical analysis. Clinical medicine is a science which develops gradually. The evolution of our medical knowledge has exploded during our time in medicine. This influences our code of conduct as well as our medical advice and decisions, and it will continue to do so.

References 1. Aarli JA. Neurology and psychiatry: “Oh, East is East and West is West…”. Neuropsychiatric Disease and Treatment 2005;1(4):285–6. 2. Caplan AL, Farah MJ. Emerging ethical issues in neurology, psychiatry, and the neurosciences. In: Rosenberg RN, Dimauro S, Paulson HL, Ptácek L, Nestler J, editors. The molecular and genetic basis of neurologic and psychiatric disease. Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins; 2008. p. 99–103.


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World Federation for Medical Education perspectives on person-centered medicine Hans Karle, Rd., WFME, President (1996–2008), University of Copenhagen, Denmark Correspondence to: Hans Karle, E-mail: [email protected]

Introduction The purpose of this presentation is to explore to which extent the policy and activities of the World Federation for Medical Education (WFME) and the WFME global standards in Medical Education are consistent with the concept of person-centered medicine.

Development and implementation of the WFME global standards programme Since 1984 the WFME has conducted an “International Programme for the Reorientation of Medical Education”. An important cornerstone in this process was the Edinburgh declaration of 1988 [1], adopted by the World Health Assembly in 1989 [2]. In order to promote the programme and in keeping with its constitutional mandate, the WFME Executive Council in 1998 in a position paper launched its Programme on Global Standards [3]. The purpose was to provide a tool for quality improvement in medical education, which could be of direct assistance to institutions, organisations and national authorities responsible for education and training of medical doctors at all levels throughout the continuum of medical education. In developing the WFME standards, the Federation set up three International Task Forces with members from all regions, selected on basis of their expertise and with geographical coverage an important consideration. The result was the WFME Trilogy of Global Standards, published in 2003 [4–6], covering all three phases, i.e. basic (undergraduate) medical education, postgraduate medical education (specialist training etc.) and the continuing professional development of medical doctors [CPD, including continuing medical education (CME)]. The global standards programme obtained clear international endorsement [7] at the World Conference in Medical Education Global Standards in Medical Education—For Better Health Care held in Copenhagen, March 2003. Implementation of the Global Standards Programme already started in 2000, and has comprised pilot studies of application in various institutions in all parts of the world, translation of standards into a number of languages, information in publications and at a huge number of international conferences, establishment of a WFME advisor function, and development of distance learning material to assist institutions and authorities. An important step was the establishment in 2004 of the World Health Organisation (WHO)/WFME Strategic Partnership to improve medical education [8] with the purpose of a long-term work plan, intended to have a decisive impact on medical education in particular and ultimately on health professions education in general. The first practical result, based on a joint WHO/WFME International Task Force, was the development of the WHO/WFME Guidelines for Accreditation of Basic Medical Education, which recommended the use of the WFME standards or criteria consistent with these standards [9]. Also, the practical collaboration between the six Regional Offices of the WHO and the WFME and its six Regional Associations for Medical Education has been of increasing importance for the impact of the programme.


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In 2007, a set of European specifications to the WFME global standards was published after development by a WFME/Association of Medical Schools in Europe (AMSE) Task Force [10]. This was part of the programme of the Thematic Network on Medical Education in Europe (MEDINE), running from 2004 to 2007 and sponsored by the Commission of the European Union, and was also supported by the WHO European Office. The main result of this process was to add a few references to specific European conditions, such as the EU Directives [11] and commitment to the European Higher Education Area, defined in the Bologna Declaration and Process [12], and to change the division lines between the two levels of WFME standards (see below), thus taking into account the general social and economic conditions as well as recent improvements and endeavours in quality assurance and development of medical education in Europe, which was found to allow higher standards to be set. Based on the accumulated information collected at the WFME office, >500 medical schools in the world have now used the WFME standards as basis for institutional self-evaluation studies, peer reviews and other types of programme development, and about 100 countries are using the standards either directly or as a template for national standards in accreditation or other types of recognition of programmes. Similarly, a great number of countries are using the WFME standards for postgraduate medical education and CPD. As part of the WHO/WFME Strategic Partnership it was decided to work for a development of the WHO Directory of Medical Schools, published since 1953. Following consultation with WFME, an agreement was signed in 2007 by WHO and the University of Copenhagen, which means that responsibility for development and maintenance of a new electronic database of medical schools and their programmes was transferred to the University with the assistance of WFME. The new database, which is intended to progressively also include education institutions for other academic health professions, is called the Avicenna Directories [13]. The vision of the WFME is that in the future, such a database could be an important instrument in quality development and international recognition of higher education institutions, allowing a kind of meta-accreditation (‘accrediting the accreditors’).

Essentials of the WFME standards The WFME global standards programme should be seen as a tool for quality improvement of medical education and an instrument in safeguarding internationalisation of medical doctors in a world of globalisation as manifested in the increasing exchange of medical students and migration of medical doctors. The need for international standards is also intensified by the mushrooming in many parts of the world of new medical schools, many of which are established on insufficient grounds with respect to e.g. physical and manpower resources, research attainment and facilities for clinical training, and often established without adequate accreditation procedures or other types of quality assessment. The WFME standards are not defined to be used for assessment of individual competencies of medical graduates, but are organised at the institutional and educational programme level of medical schools and other institutions and organisations. They comprise the ‘universe’ of medical education in dealing with a broad set of categories including the structure and organisation of the institutions, the process of education, including the content or syllabus of the curriculum, the educational conditions as determined by facilities, resources and the educational environment, and the outcome described in generic terms. The standards in all three parts of the Trilogy are structured in nine areas, defined as broad components of structure and process, and each area again divided in 36–38 sub-areas corresponding to performance indicators. For the standards in basic medical education, the areas are: mission and objectives; educational programme; assessment of students; students affairs; academic staff/faculty; educational resources; programme evaluation; government and administration; and the continuous renewal. The two other set of standards include similar areas with minor, relevant changes in the wording. For each sub-area, a number of standards are defined at two levels of attainment: (a) basic standards, meaning that the standard must be met from the outset of the programme, and being especially relevant for accreditation purposes; and (b) standards for quality development, meaning that the standard is in accordance with international consensus about best practice, and that fulfilment of—or initiatives to fulfil—some or all of such standards should be documented, and being especially relevant for programme reforms. The global standards should be considered a template for definition of regional, national and institutional standards with adequate specifications. They have the advantage of recognising national and institutional differences, allowing different profiles of the programmes, and respecting reasonable autonomy of institutions. They aim at function-


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ing as a lever for change and reforms, encouraging quality development and recognising the dynamic nature of medical education. Measuring an institution and its programme against the standards means ensuring •• •• •• ••

that the education provided is the best available (educational needs) that the school fulfils its mission in relation to the public (social needs) that the professionals maintain their own development and consistent performance (professional needs) quality by using accreditation or other systems of recognition based on agreed standards (regulatory needs).

WFME standards and the person-centered medicine concept Do the WFME standards take into account the concept of person-centered medicine (PCM)? There is no doubt that the standards comprise the whole person in dealing with the medical curriculum and other sides of the programme. This is clearly confirmed by the description of requirements to the programme, which should include not only the disciplines of the basic bio-medical sciences, but also the behavioural and social sciences and medical ethics. Furthermore, it is outlined that all the major disciplines and skills must be included in the clinical education and training, including e.g. psychiatry. It is thus stated in the annotations made to the sub-area on behavioural and social sciences and medical ethics that these topics will—depending on local needs, interests and traditions—typically include medical psychology, medical sociology, biostatistics, epidemiology, hygiene, public health and community medicine, etc., and that these disciplines should provide the knowledge, concepts, methods, skills and attitudes necessary for understanding socio-economic, demographic and cultural determinants of causes, distribution and consequences of health problems. The PCM principle is also implicitly covered by the criteria for definition of mission and objectives of institutions and by the expected competencies of graduates, expressed in broad professional terms regarding knowledge, skills, attitudes and behaviours, as well as in stated requirements for appropriate, effective and compassionate patient care comprising all health-related problems, including disease prevention, rehabilitation and health promotion. The WFME standards will encourage medical schools to develop an integrated programme—in theory and practice—of the bio-medical, clinical, behavioural and social sciences, including medical ethics, medical psychology, medical sociology and public health. The standards also emphasise use of a broad category of settings for clinical training, including not only academic teaching hospitals, but also other relevant hospitals and institutions and community-based settings (including specialist practices), clinics, nursing homes and primary health care stations. Finally, the WFME in the standards advocate early patient presentation in the curriculum leading to ‘person to person’ contact and involvement.

Barriers to achievement of PCM Most medical schools and also organisations responsible for postgraduate education of doctors would—many rightfully—argue that requirements determined by the PCM concept are adequately fulfilled in their educational programme. However, it is obvious that there are problems in some countries and institutions. Among the barriers to achievement of adequate PCM we must consider the reality in some programmes of: •• •• •• •• •• ••

insufficient impact of medical ethics insufficient emphasis on communication skills insufficient training in medical psychology and psychiatry insufficient education in medical sociology and public health disciplines reduction in general training and too early specialisation consequences of some realignments in the health care sector with negative influence on the educational environment.

The concept of PCM is certainly not new, but medical educators and other responsible for quality education should be aware of trends in the development and management of medical education, which negatively would influence the outcome and deviate education from following PCM principles.


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References 1. World Federation for Medical Education (WFME). The Edinburgh Declaration. Lancet 1988;8068:464. 2. World Health Assembly Resolution 42.38. Geneva: WHO; 1989. 3. The Executive Council, the World Federation for Medical Education. International standards in medical education: assessment and accreditation of medical schools’ educational programmes. A WFME position paper. Medical Education 1998;32: 549–58. 4. Basic Medical Education. WFME Global Standards for Quality Improvement. Copenhagen: WFME Office; 2003. [Accessed 20 April 2009]. Available from: http://www.wfme.org. 5. Postgraduate Medical Education. WFME Global Standards for Quality Improvement. Copenhagen: WFME Office; 2003. [Accessed 20 April 2009]. Available from: http://www.wfme.org. 6. Continuing Professional Development (CPD) of Medical Doctors. WFME Global Standards for Quality Improvement. Copenhagen: WFME Office; 2003. [Accessed 20 April 2009]. Available from: http://www.wfme.org. 7. van Niekerk JP de V. Commentary: WFME Global Standards receive ringing endorsement. Medical Education 2003;37: 585–6. 8. WHO/WFME Strategic partnership to improve medical education. Geneva/Copenhagen: WHO; 2004. [Accessed 20 April 2009]. Available from: http://www.wfme.org and http://www.who.int. 9. WHO/WFME Guidelines for Accreditation of Basic Medical Education. Geneva/Copenhagen: WHO; 2005. [Accessed 20 April 2009]. Available from: http://www.wfme.org/. 10. World Federation for Medical Education (WFME). European specifications for WFME global standards for quality improvement in medical education. Copenhagen: WFME; 2007. [Accessed 20 April 2009]. Available from: http://www.wfme.org/. 11. EU Directive 2005/36/EC of 7 September 2005 on recognition of professional qualifications. [Accessed 7 January 2010]. Available from: http://ec.europa.eu/internal_market/qualifications/future_en.htm. 12. Bologna Working Group on Qualifications Frameworks. A framework of qualifications of the European higher education area [Accessed 20 April 2009]. Copenhagen: Ministry of Science, Technology and Innovation; 2005. Available from: http:// www.bologna-bergen2005.no/Docs/00-Main_doc/050218_QF_EHEA.pdf. 13. The Avicenna Directories. Global directories of education institutions for health professions. A partnership of the World Health Organization and the University of Copenhagen. Copenhagen: University of Copenhagen; 2008. [Accessed 20 April 2009]. Available from: www.avicenna.ku.dk.


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Council for international organizations of medical sciences perspectives: protecting persons through international ethics guidelines Michel B. Vallotton, Prof., CIOMS President, Geneva, Switzerland Correspondence to: Michel Vallotton, E-mail: [email protected]

The purpose of guidelines in the field of medical ethics is to help physicians to make the best decisions or follow the right course of action in difficult medical situations. For other guidelines, the purpose is to help investigators, sponsors and Institutional Review Boards (IRB) or the equivalent to design, support or approve only studies involving human beings that fulfil a set of conditions, principally the scientific validity of the project, the protection of the participants and the respect of their rights, including that of giving their free informed consent. They are not algorithms or decision trees to deal with a disease, or recipes to conceive a hypothesis, and then write a protocol to confirm or reject it. All these guidelines are derived from more basic general declarations and codes of conduct. The terminology used in these various documents to define the subjects of their consideration reflects the degree of generality or specificity. Thus, attention should be devoted to the terminology used in codes, conventions, declarations and guidelines. It occurred to me that some confusion between these numerous fundamental texts exists in the mind of many colleagues. I therefore tried to put some order among them based on the designation of the very subjects they aim to protect. This is also very important since they represent the fundamental texts upon which the Guidelines of Council for International Organizations of Medical Sciences are based and from which they expand to help investigators, sponsors and members of Institutional Review Boards or Ethical Committees to prepare or, as appropriate, examine research projects involving human beings. These texts are so numerous that, in order to chart this field, I propose, for those not familiar with them, a simple classification starting from the most general texts addressing almost abstract themes to the more specific dealing with the encounter between a physician and a patient, where each acts and responds as a person, so to speak adding more and more flesh and blood to the basic structure. The first level is that of the most general declarations and conventions that are legally binding for these countries that have adopted, signed and, in some cases, finally ratified them. The Declaration of Independence of the US (1776), the Bill of Rights of the US (1788), the French Declaration des Droits de l’Homme et du Citoyen (1789), the Prussian Directives (1900), the Nuremberg Code (1947), the Declaration of Geneva of the WMA (1948), and the Universal Declaration of Human Rights adopted by the UNGA (1948). These bills and declarations address the most common denominator, that is to say the human being and citizens. They represent the basic structure or one can even say the backbone upon which more specific texts have been built in the course of the years and to which these texts refer. The second level adds flesh to this basic structure in defining the conditions to be respected in medical activity and most particularly in medical research. It concerns every patient or healthy participant and is largely based on the best known Kantian categorical imperative and on the fundamental principles, proposed by the North American ethicists Beauchamp and Childress in 1979, of autonomy, beneficence, non-maleficence, and justice, which are so often quoted but are also objects of debate. Among them, one finds the International Code of Medical Ethics of the WMA (1949), the Declaration of Helsinki of the WMA (1964) and its successive revised versions,


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the Belmont Report (1979), and the Universal Declaration on the Human Genome and Human Rights of the UNESCO (1997). The third level concerns specific categories of patients grouped according to their common pathological conditions, mental or physical condition or handicap, socio-economic situation, including gender, age group, etc. National guidelines issued by various academies, councils or other institutions dealing with ethics have dealt specifically with one or more of these different groups of subjects. For example, the Swiss Academy of Medical Sciences has published >20 such guidelines [1]. They are addressed primarily to physicians but also to the various medical societies in different fields of specialization as well as to the Foederatio Medicorum Helveticorum (better known as FMH), the nurses associations, the health authorities, and courts of justice, which may refer to them in cases of misconduct, although as such these guidelines are not legally binding. At this most important third level, not only general principles, as already mentioned, apply, but in addition special standards of conduct are expected from the various categories of health professionals, notably physicians and nurses. Throughout these three levels, great attention should be devoted to the terminology to designate participants in professional actions and research studies. There are differences between almost abstract concepts or anonymous terms, such as human beings, participants, and subjects and those with flesh and blood as persons, patients and victims in the event of natural catastrophes or man-made disasters. One should not forget that when data are collected and reduced to mere figures and points on a curve, introduced by statistics, there is behind them a person with an identity and in between one or more collections of personal data in current electronic files. Also when organs, pieces of tissues, blood or DNA samples are collected, there is, hidden behind them, a source, that is to say a patient. They can be anonymized or coded in various ways. However, in view of the ease in connecting, merging and transferring electronic files, special precautions should be in place to secure the rights and the privacy of the individuals, and sometimes even of their families. The goal is to not jeopardize their relationship with their next-of-kin, their employer, and their insurance company, inter alia. In consequence, the necessity of free and informed consent of the person is central and should be respected whenever feasible. Even after death occurs, one is confronted by problems of identity and anonymity. All these delicate situations have already been considered in the new revised CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects issued in 2002 [2], but particularly in the newly revised International Guidelines for Ethical Review of Epidemiological Studies [3]. Central to this protection of the person is the requirement that the investigator seek the free informed consent of the participant in any study. I will now plead for the defense of persons in a world that tends more and more to disintegrate or manipulate them. A person is meant as a unique individual with his or her own self and a complete biography. Not only a biography as it appears in a curriculum vitae to present oneself for a position, a prize, an award or any other distinction, not a medical anamnesis to recount his or her symptoms and the list of ailments of the past. We should always remain aware of the various layers that lie under a CV or a biography: the circles of the family, of friends, of professional colleagues, the ethnic or cultural group to which he or she belongs; also the list of cultural interests, religious beliefs or philosophical attachments, of sports activities and hobbies; and so on, all of which forge a personality. When only the bare civil status or identity is removed in a research project, as I mentioned, one speak of anonymization and the rest of the personality is preserved; but if one or more of those layers, which I mentioned, that form the totality of a person, are still accessible, there is a danger of harming, whether unintentionally or not, a person or his or her family circle or social surroundings. On the contrary, when one or more of those layers are purposely ignored, this represents depersonalization. For example, with the new management of hospitals, economists and sociologists have introduced, instead of ‘patients’, the terms ‘clients’ or ‘health-care consumers’, while practitioners are no longer nurses, doctors or physicians but ‘health-care providers’. Thus, sick persons are depersonalized and reduced to economic entities if not straight bar codes or bare social security numbers, not only in hospitals but more and more in private practice under the pressure of insurances companies. All this should reinforce our determination through Ethical Committees of all sorts, and associations, such as yours, to recognize what a person is; his or her uniqueness, importance and responsive role in society; to protect them


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from harm and defend them against unacceptable intrusion; while at the same time one should appeal to their sense of responsibility towards other persons and society at large in promoting, supporting, and rendering possible medical research. Thus, a balance has to be struck between not hindering medical research and not harming the participants. This has always been the aim of CIOMS, as well as most national medical academies.

References 1. Swiss Academy of Medical Sciences. [webpage on the internet]. Available from: http://www.samw.ch/en/News/News.html. 2. CIOMS. International ethical guidelines for biomedical research involving human subjects. Geneva: CIOMS; 2002. 3. CIOMS. International ethical guidelines for epidemiological studies. Geneva: CIOMS; 2009.


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World Federation for Mental Health perspectives on person-centered medicine John R.M. Copeland, Prof., President, World Federation for Mental Health, Emeritus Prof of Psychiatry, University of Liverpool, UK Correspondence to: John Copeland, E-mail: [email protected]

What is the World Federation for Mental Health? The World Federation for Mental Health was founded in 1948 at the same time as the United Nations and the World Health Organisation. The emphasis was on the preservation of peace and the resolution of conflict. You might think it not very successful overall. However, the Federation progressed well. With member organisations in over a hundred countries, it is the only organisation concerned with all aspects of mental health. It is in consultative status with the United Nations where its representatives work hard to ensure that mental health is taken fully into account. In 1992, WFMH founded World Mental Health Day and sets the theme sending out thousands of free packets of information. In the past the Federation placed a mental health employee in the World Bank and invited WHO and ILO to join with it to promote mental health in the workplace. Recently, the Federation has been concerned about the difficulty migrant consumers of mental health services have in crossing cultural barriers and has set up and promoted a transcultural centre and its first conference. Human rights have been a perennial concern. The Federation has a duty to identify mental health problems and convene appropriate leaders to facilitate solutions while encouraging and monitoring their implementation. This brief history should indicate that the views and opinions of consumers/users are central to the WFMH’s concerns.

What is the origin of the present preoccupation with diagnostic labelling? There is a fear that mental illness is increasingly reduced to issues of diagnosis and medication, driven by commercial and financial considerations, and shortage of trained personnel. In the 1960s, the diagnosis of patients admitted to the State Mental Hospitals in the US showed a preponderance of patients diagnosed as having schizophrenia which was not apparent in the national statistics of other Western countries. Concern in the US led to the formation of the US/UK Diagnostic Project. It was my honour to form part of the team that found serious differences in diagnostic practices between the two sides of the Atlantic [1]. Later, when I succeeded Dr. John Cooper as leader of the UK team, we investigated the large differences in levels of dementia and depression in older people finding similar differences in diagnostic use [2]. These findings and the availability of new medications contributed to the need to improve diagnostic reliability between psychiatrists. The result was the DSM lll and lV [3] and ICD 10 with their various rules to encourage diagnostic agreement. It is stated in the introduction to DSM lll and to ICD 10 that these classifications are for improving the “reliability of diagnostic judgements” and “in order to improve diagnostic reliability”. However, they have become increasingly used by service providers, managed care operators, governments and the law to provide general limits on what might be regarded as illness. This trend has now swung so far that when a colleague of mine, working outside the UK, asked a medical student what he understood by the word


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‘schizophrenia’ he received the answer, “there has to be two or more symptoms from criterion A and one or more disturbances from criterion B …” and so on. It would seem that diagnosis has become a formula attached to a human being rather than a human being who happens to be suffering from an illness. The need to codify diagnosis has now gone far beyond its original intention, to become a dehumanising label reducing a person’s experience of ill health to a code of letters and numbers.

Earlier traditions The tradition in the UK required the trainee psychiatrist to elicit the history of the illness, the symptoms, the patient’s life history including social background and interaction, past history of illness, personality, strengths, needs, quality of life, risk assessment and pathways to recovery. However, financial stringency, shortage of staff and the take over of postgraduate education by government whose concern is with the spiralling costs of health care, threaten this system. In the early days of the National Health Service in the UK we were taught the order of importance was: the patient, the relatives, the health related workers and the administrators. One’s impression now in one’s own contact with service provision, is that this order has become reversed.

Dangers of orientating to the person without appropriate provision At the time of the US/UK Diagnostic Project, psychiatry in the USA was dominated by a very individually orientated approach, a type of psychotherapy based loosely on psychoanalysis. It was very person orientated, on a one to one basis. It was an expensive treatment. The majority of patients however, were 20 not able to pay, and were to be found in mental hospitals receiving minimal treatment from doctors who were often migrants with little English. There is the danger that in highly individualised treatment scarce psychiatric manpower could go to those who can pay while others have a poor service. In practice we would have to be clear how this is to be avoided. Another principle learnt in the past while examining the practices in a large mental hospital in the UK, was that where the staff have complete power and the patients little or no power and no successful monitoring, the practice drifts inevitably in favour of the convenience of staff and away from the patient. It is the opposite of patient orientated care and yet I suspect it exists in many mental hospitals across the world, and in many nursing homes. It seems to require intense surveillance to prevent it, but such surveillance is expensive. Many problems are related to the level of resources. It is essential to achieve person orientated care, but the problem is to find the resources which will allow that to be available to all sections of the community and not just to a few. In many countries in the West as much as the lower one-third of the population has inadequate psychiatric care, or for that matter health care in general.

Countries and situations with inadequate services The remit of the World Federation for Mental Health must embrace mental health in countries in most of which psychiatric care is inadequate and in some where no psychiatrist exists. That is often an excuse for not putting the needs of the patient first, but the resources must come from the funders of care who must be persuaded to embrace the policy. The Federation is working with its Collaborating Centre in Liverpool to try to bridge this treatment gap by the development of computer assisted technology for making an assessment, diagnosis and suggesting pathways of care. While aimed to bring into care mentally ill people at present deprived, we are conscious that without constant reminders it could become a mechanical process. Consequently, we have given special concern to patient’s expressed needs and quality of life [4]. Many problem areas exist where individual orientated care is lacking. The Federation discovered this following the Asian tsunami in 2003, when mental health did not share in the money donated by individuals to humanitarian organisations many of whom do very little for mental health. This has led the Federation to set up a forum to bring together the leaders of mental health and psychosocial support in emergencies to discuss funding, training and procedural issues.


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The impact on individuals with mental illness of HIV AIDS and vice versa is being addressed by the Federation’s new African Initiative. One worries about the use of the term ‘mental health’ suggesting perhaps a public health programme for populations rather than the treatment of individuals. While mental health embraces far more than the treatment of mental illness, one suspects, it has become a euphemism for mental illness and by its use, we subscribed to the stigma still surrounding it.

Are we listening to the consumers of mental health services? If we are to put the person central to our work we must listen to what the person tells us. Are we listening sufficiently? Do we have an adequate consumer representation? Recently, the Board of Directors of the WFMH approved ten principles for the Federation of which the second is “users/consumers will participate in all the health and social service departments and committees of member countries”. Consumers and their families are central to the concerns of WFMH. If we are to put the person back into medicine we must listen to what the person has to tell us about what they want. We may have knowledge of illness but we do not necessarily have knowledge, nor do we necessarily understand what it is that an ill person wants us to do for them. They must guide us in what they want to achieve and be helped to articulate this, and we must surely listen to them. Finally, we must also remember that patient orientated care is not necessarily in the interests of caregivers and may not appeal to them, so that constant monitoring to ensure its implementation will be vital.

References 1. Cooper JE, Kendell RE, Gurland BJ, Sharpe L, Copeland JRM, Simon R. Psychiatric diagnosis in New York and London: a comparative study of mental hospital admissions. London: Oxford University Press; 1972. (Maudsley Monograph Series, No. 20). 2. Copeland JR, Kelleher MJ, Kellett MJ, Gourlay AF, Cowan DW, Barron G, et al. Cross-national study of diagnosis of the mental disorders: a comparison of the diagnosis of elderly psychiatric patients admitted to mental hospitals serving Queens County in New York and the Former Borough of Camberwell, London. British Journal of Psychiatry 1975 Jan;126:11–20. 3. Diagnostic and statistical manual of mental disorders (DSM1V). Washington, D.C.: American Psychiatric Association; 1987. 4. Sharma VK, Lepping P, Cummins AGP, Copeland JRM, Parhee R, Mottram P. The Global Mental Health Assessment ToolPrimary Care Version (GMHAT/PC), development, reliability and validity. World Psychiatry 2004;3(2):115–9.


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International Council of Nurses and person-centered care Claudia C. Bartz, PhD, RN, FAAN, International Council of Nurses, Geneva, Switzerland Correspondence to: Claudia Bartz, E-mail: [email protected]

Introduction Person-centered care is of utmost importance to the nursing profession. Nurses focus on the person across multiple settings, such as ambulatory, hospital, and home care, and also in community and public health settings. At any level of care, nurses use the nursing process to structure care delivery as they assess clients, develop nursing diagnoses, plan and carry out interventions, and evaluate patient outcomes. The nurse’s interventions are based on the nursing diagnoses and in support of the medical plan of care. The patient’s outcomes would be in response to the nurse’s interventions and the medical plan of care. The International Council of Nurses (ICN) Code of Ethics notes that “(I)nherent in nursing is respect for human rights, including cultural rights, the right to life and choice, to dignity and to be treated with respect. Nursing care is respectful of and unrestricted by considerations of age, colour, creed, culture, disability or illness, gender, sexual orientation, nationality, politics, race or social status” [1, p. 1]. In addition, ICN defines nursing as follows. •• Nursing encompasses autonomous and collaborative care of individuals of all ages, families, groups and communities, sick or well and in all settings. •• Nursing includes the promotion of health, prevention of illness, and the care of ill, disabled and dying people. •• Advocacy, promotion of a safe environment, research, participation in shaping health policy and in patient and health systems management, and education are also key nursing roles [2]. This paper describes ICN programmes, projects and policies that demonstrate attentiveness to the person at the center of health care delivery. In 2009, the 24th Quadrennial ICN Congress theme, “Leading Change: Building Healthier Nations,” is emblematic of ICN’s world view. ICN’s mission of ensuring quality nursing care for all and sound health policies globally underlies this paper. ICN is a federation of 132 national nurses associations representing the millions of nurses worldwide. ICN’s website (www.icn.ch) provides greater detail on all of the content in this paper.

ICN and person-centered care: person, provider and community ICN advocates and provides guidance for person-centered care in various environments, and works to influence and support nurses and other care givers who provide person-centered care. ICN recognizes, in keeping with its ethics code nursing definition, that the ‘person’ is nearly always part of a family or community and therefore, some of ICN’s work can also be placed in that context.

Person-centered care: supporting personal health The trend toward people being more active in becoming knowledgeable about health and disease is supported by information technology that offers a wide range of information from many sources. ICN collaborates with Johnson & Johnson to provide Patient Talk!© on its website, providing health information for patients and consumers. Fact Sheets from ‘Acting on Osteoporosis’ to ‘Women and Stroke’ can be downloaded from the site.


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ICN also develops and disseminates position statements for a broad array of topics with some of them being targeted at improving one’s health or coping with disease or disability. Position statements including ‘Patient Safety,’ ‘Elimination of Substance Abuse in Young People,’ ‘Mental Health,’ and ‘Care of People with Disabilities’ are examples of documents available for individuals, families and care providers. ICN position statements provide guidance internationally through the National Nurses Associations and can be used locally to establish standards or approaches for most effective care. The Florence Nightingale International Foundation (FNIF) and ICN collaborate on the FNIF Girl Child Education Fund. Through this fund, orphaned daughters of nurses in developing countries are back in school. In partnership with ICN member National Nurses Associations, funds go directly to education costs. Every girl in the programme is paired with a nurse volunteer to monitor her progress in school and home. With the education of these girls comes a better future for them and better health, in terms of lower HIV/AIDS infection rates, improved family planning, lower infant mortality, and fewer maternal deaths in childbirth.

Person-centered care: enabling the provider ICN advocates for issues that help to educate nurses and other providers for safe and effective care. ICN publishes Nursing Matters Fact Sheets that address topics, such as ‘Ageing and Health’, ‘Children’s Health’, ‘Communicable Diseases’, ‘Immunisation Safety’, and ‘Patient Safety’. As nurses and others develop policies and procedures, they are able to consult the ICN Fact Sheets for guidance and support of their work. ICN Nursing Networks support care givers in their commitment to best practices. Nurses and others with similar interests come together within the networks to share best practices, standards and competencies in a selected area of practice. Of the 13 networks, those with direct impact on person-centered care would be Disaster Preparedness, Emergency Care, HIV/AIDS, Nurse Practitioner/Advanced Practice, Rural and Remote Nursing, and Telenursing. As a means of supporting the quality of nursing worldwide, the Regulation Network seeks to support nurses in their work and development by bringing order, consistency, identity and control to the profession. The profession and its members are defined; the scope of practice is determined; standards of education and of ethical and competent practice are set; and systems of accountability are established through these means. The ICN-Merck Nursing Mobile Library is a project in developing countries, where nurses deliver >80% of health care. Often the nurses are working in remote clinics, with little to no access to current health information. Others who have contributed to this programme are Elsevier Science, nursing organisations, local nurses, ministries of health, and health related non-governmental organisations (NGOs). The mobile libraries include current reference books for community health, epidemiology, maternal and child health, surgery and anaesthesiology, communicable diseases, HIV/AIDS, education, health promotion, management, and nursing practice. To date there are over 220 libraries in 16 developing countries. The Global TB/MDR-TB Resource Centre is an ICN-Lily project involving nurses worldwide. In most countries with a high burden of TB, nurses are the primary health care provider, and often the only source of care. Lilly provided funding to support ICN in developing, jointly with other partners, guidelines for nurses in treating TB and MDR-TB. In addition, ICN developed a training of trainers program for nurses. Recently, ICN-Lily conferred special awards to nurses who demonstrated exceptional dedication to the fight against the scourge of tuberculosis. Nurses were honored from Kenya, Lesotho, Malawi, Philippines, Russia, South Africa, Swaziland, Uganda, and Zambia. International partners for the project include International Federation of Red Cross and Red Crescent Societies, International Hospital Federation, International Union against Tuberculosis and Lung Disease, Partners in Health, Stop TB Partnership, World Economic Forum, World Health Organization (WHO), and the World Medical Association.

Person-centered care: enhancing the health of the community Human needs guide the work of nursing. ICN is strongly committed to clean and safe water as a universal need and fundamental human right. Water is an essential resource to meet basic human needs and to sustain livelihoods and development. In its advocacy role, ICN calls on nurses and National Nurses Associations to work to provide safe and accessible water to the whole population and to work with national and international bodies to ensure water safety, lobby for sound regulatory policies, and monitor the public health impact of deregulation and privatisation of the water supply.


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An ICN programme that supports and reflects the proliferation of eHealth and Information, Communication and Technology (ICT) strategies, is the International Classification for Nursing Practice (ICNP®). This terminology aims to be an integral part of the global information infrastructure informing health care practice and policy to improve patient care worldwide. The 2007 Islamabad declaration on strengthening nursing and midwifery is another example of ICN’s involvement with other agencies with the aim of strengthening nursing capabilities to ensure and improve person-centered care for women and children in the community. The declaration notes that all people should have access to competent nurses and midwives who provide care, supervision and support in all settings, especially countries in crisis or conflict. The declaration represented collaboration among ICN, WHO, Pakistan’s Ministry of Health, and the International Confederation of Midwives.

Summary ICN works with and for nurses and also collaboratively in carrying out its mission and goals, while recognizing that person-centered care is at the heart of health care, nursing, and medicine. Through its working relationships with WHO, governmental ministries and organizations, NGOs, and others, ICN’s programmes and products have greater scope and effectiveness. The World Health Professions Alliance (WHPA), for example, brings nurses (ICN), physicians (WMA), pharmacists (FIP), and dentists (FDI) together on related issues and speaks on behalf of 23 million health care professionals.

References 1. International Council of Nurses. ICN Code of Ethics. Geneva, Switzerland: International Council of Nurses; 2006. 2. International Council of Nurses. Definition of nursing. Geneva, Switzerland: International Council of Nurses; 2009. [Accessed 31 March 09]. Available from: http://www.icn.ch/definition.htm.


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International Alliance of Patients’ Organizations perspectives on person-centered medicine Jo Groves, Chief Executive Officer, IAPO, Geneva, Switzerland Correspondence to: Jo Groves, E-mail: [email protected]

Introduction Non-communicable diseases or chronic conditions, such as cancer, diabetes and heart disease, are affecting the health and quality of life of an increasing number of patients around the world. The World Health Organization (WHO) estimated that in 2005 they caused an estimated 35 million deaths representing 60% of all deaths globally with 80% of deaths due to non-communicable diseases occurring in low and middle income countries [1]. This is placing an ever-increasing burden on health systems, originally designed to address acute medical conditions. In order to cope with the continuing increase in the number of patients with chronic conditions, health systems need to develop so that they are able to address the ongoing needs of these people sometimes over many years or decades. In order to manage these conditions in an optimum way for both the individual and the health system a patient-centered approach is necessary because they require the long-term involvement of individual patients in their treatment so that they take their medicines correctly, self manage and make healthy lifestyle choices. Aspects of a patient-centered approach can be seen in the increase in self-management and patient education initiatives, resulting in a move to more collaborative care. This refocus and reorientation of health systems requires the commitment and involvement of all stakeholders. This paper introduces the conceptual basis around definitions of patient-centered healthcare and outlines principles of patient-centered healthcare from the perspective of the International Alliance of Patients’ Organizations (IAPO), a unique cross-disease alliance of 200 patients’ organizations from around the world.

What is patient-centered healthcare? Patient-centered healthcare is a term that is commonly used but not always defined by those using it. As Stewart (2001) states, it is often understood by what it is not: “technology centered, doctor centered, hospital centered, disease centered”. The traditional biomedical management model of healthcare encompassed ‘paternalistic’ treatment where the health professional decided the appropriate course of treatment, often without significant patient involvement in the decision. This situation has been changing as, over the years, many people have become more interested in health issues and in taking more responsibility for their personal healthcare. The significance of patient-centered healthcare is that it moves the healthcare focus from the disease to the patient. It can, therefore, be a useful concept to ensure that the needs and preferences of patients are at the centre of all aspects of healthcare though this focus should not detract from equality in all relationships in healthcare.

Principles of patient-centered healthcare IAPO has undertaken extensive research and consultation on patient-centered healthcare and found that patients’, families’ and carers’ priorities are different in every country and in every disease area, but from this diversity there Conceptual Explorations on Person-centered Medicine

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were some strong common priorities. The conclusion of this research was that the essence of patient-centered healthcare is that the health system is designed and delivered to meet the needs and preferences of patients. To the International Alliance of Patients’ Organizations (IAPO), patient-centered healthcare encompasses five fundamental principles which are outlined in the IAPO Declaration on Patient-Centered Healthcare [2]. This declaration is the 1st globally agreed declaration on patient-centered healthcare developed and agreed by patients and patients’ organizations themselves. In addition, IAPO research with 1200 patient group members in 2006 found that patients’ value a patient-centered approach to healthcare [3]. The five principles of patient-centered healthcare can be summarised as: 1. Respect – Patients, families and carers have a fundamental right to patient-centered healthcare that respects their unique needs, preferences and values, as well as their autonomy and independence. 2. Choice and empowerment – Patients have a right and responsibility to participate, to their level of ability and preference, as a partner in making healthcare decisions that affect their lives. 3. Patient involvement in health policy – Patients and patients’ organizations have a valuable role to play in healthcare policy-making through meaningful and supported engagement in all levels and at all points of decisionmaking, to ensure that they are designed with the patient at the centre. 4. Access and support – Access to safe, quality and appropriate services, treatments, preventive care and health promotion activities is needed with a commitment to equity so that all patients can access the appropriate treatments. 5. Information – Accurate, relevant and comprehensive information is essential to enable patients and carers to make informed decisions about healthcare treatment and living with their condition. These principles encompass many of the same values that are enshrined in international law and underpin many definitions of a patient-centered healthcare, based on human rights, participation and empowerment, and access and equity [4, 5]. The principles provide a basis which recognises that patients are individuals and have different needs and that the healthcare system can be responsive to this, encouraging patients to take responsibility for their health and healthcare whilst recognising and respecting the limits in people’s ability or individual preferences. This is of particular importance for people that have a reduced capacity to make decisions about their health and healthcare for themselves, such as children, those with mental health conditions or degenerative conditions, such as Alzheimer’s disease. Patient-centered healthcare is about taking a holistic approach to health through addressing patients needs and recognizing what they consider to be important in their health and healthcare; recognizing the reductionist approach to health which focuses on the disease, the organs, the cells, the genes should not prevent the need to join all these elements up in the consideration of the whole person—body and mind.

Benefits of patient-centered healthcare There is growing evidence that designing health systems with the patient at the centre is an appropriate and costeffective way to address the needs of people with chronic conditions. A number of research studies have concluded that there is a positive link between the practice of patient-centered healthcare in clinical settings and outcomes [e.g. 6–9]. Collectively studies indicate that the patient-centered approach can lead to a variety of positive outcomes including patient satisfaction, emotional health, symptom resolution, function, physiologic measures (i.e. blood pressure and blood sugar level), pain control, engagement and task orientation, reduction in anxiety, quality of life, doctor satisfaction and an increase in efficiency resulting in fewer diagnostic tests and unnecessary referrals. For example, elements of a patient-centered approach, such as effective communication, patient-tailored interventions, patient support and a holistic approach have been shown to be essential to encourage patients to adhere to their treatments [10].

Gaining a clear picture of the situation: the need for further research The research studies are encouraging but there is still much research to be done if there is to be a clear overall picture of how a patient-centered approach can improve health and quality of life supported by robust evidence base Conceptual Explorations on Person-centered Medicine

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for patient-centered healthcare. Often comparisons and conclusions are complicated by the different methodologies and varying definitions of patient-centered healthcare often used. The costs and benefits of a healthy nation require measurement and consideration of social and economic outcomes of healthcare approaches in addition to health outcomes. Health is not just about the treatment of a condition but about social, physical and mental well-being. Patient-centered healthcare aims to bring the focus back to the whole person. It recognises that a person’s quality of life does not solely depend on the impact of their disease on their health but also encompasses how the disease impacts on their participation in society, and their physical and mental wellbeing.

Conclusions: towards a patient-centered future It is necessary and right that healthcare focuses on the whole person rather than the disease. The involvement of all stakeholders is needed to reorient healthcare systems patient-centered healthcare and meaningful patient engagement must be central to efforts to refocus health systems on people and patients. IAPO welcomes and supports initiatives to reorient the healthcare system to bring patients to the centre of care. Support for a patient-centered approach is growing globally and there is a unique opportunity to move from the rhetoric of patient-centered healthcare and its adhoc practice to widespread practice. There are many different starting points for patient-centered healthcare and patient involvement depending on national wealth, culture and attitudes. What is important is that throughout the world, people understand about patient-centered healthcare and patients and patients’ organizations work in partnership with healthcare professionals, providers and policy-makers, helping to shape their health systems for the future.

References 1. World Health Organization. Preventing chronic diseases: a vital investment. Geneva: WHO; 2005. [cited 2009 17 April]. Available from: http://www.who.int/chp/chronic_disease_report/en/index.html. 2. International Alliance of Patients’ Organizations. Declaration on patient-centered healthcare. London: IAPO; 2006. [cited 2009 17 April]. Available from http://www.patientsorganizations.org/declaration. 3. International Alliance of Patients’ Organizations. Perceptions of healthcare. London: IAPO; 2006. [cited 2009 17 April]. Available from: http://www.patientsorganizations.org/pchresearch. 4. Lutz B, Bowers B. Patient-centered care: understanding its interpretation and implementation in health care. Journal of Scholarly Inquiry for Nursing Practice 2000;14(2):165–82. 5. United Nations. Universal Declaration of Human Rights. Available from: http://www.un.org/events/humanrights/2007/udhr. shtml. 6. Bauman AE, Fardy HJ, Harris PG. Getting it right: why bother with patient-centered care? Medical Journal of Australia 2003;179(5):253–6. 7. Little P, Everitt H, Williamson I, Warner G, Moore M, Gould C, et al. Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations. British Medical Journal 2001 Oct 20;323(7318):908–11. 8. Stewart M. Towards a global definition of patient centered care. British Medical Journal 2001 Feb 24;322(7284):444–5. 9. Henbest R, Fehrsen G. Patient-centeredness: is it applicable outside the west? Its measure and effect on outcomes. Family Practice 1993 Sep 9;(3):311–7. 10. World Health Organization. Adherence to long-term therapies: evidence for action. Geneva: WHO; 2003. Available from: http://www.who.int/chp/knowledge/publications/adherence_report/en/index.html.


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Section on Special Initiatives Relevant to Person-centered Care

World Medical Association’s Caring Physicians of the World Initiative (CPWI) Yank D. Coble, MD, MACP, MACE, Former President World Medical Association, Director and Distinguished Professor, Center for Global Health and Medical Diplomacy, University of North Florida, Jacksonville, Florida Correspondence to: Yank Cable, E-mail: [email protected]

“The most important thing is caring, so do it first, for the caring Physician best inspires hope and trust.” Sir William Osler The WMA is a federation of National Medical Associations (NMA) representing over 8 million physicians in >85 countries around the world. It was founded in 1947 with the mission to “serve humanity by endeavoring to achieve the highest international standards in medical education, medical science, medical care, and medical ethics, and health care for all the people of the world”. Despite the enormously disparate environments and circumstances in which physicians care for patients, there are three fundamental, unifying, and enduring traditions of the medical profession; caring, ethics, and science. Thus, it is not surprising that physicians’ desires and concerns are similar globally. Recent surveys of physicians in over 40 countries around the globe reveal their concern about access to quality safe medical care, appropriate professional autonomy to provide that care, and adequate resources and facilities to deliver care. They are seriously concerned about the regulatory, legal, political, and other barriers to their care, and governments’ attitudes that medical care is an expense, a cost, not an investment with positive return despite the global data indicating otherwise. To a large degree they felt marginalized, threatened, and their professional values and status demeaned. They requested the WMA provide increased information on health systems and greater exchange of experience between physicians throughout the world. The physicians requested vigorous communication of the values of the medical and health professions and the well documented value in relieving distress, despair, disease, disability, and premature death and the extraordinary return on investment in medical care and public health. Physicians also felt they needed to enhance their knowledge and skills in advocacy for patients, the public health, and the medical profession. With the partnership of NMAs and the Pfizer Medical Humanities Initiative, the WMA formulated and implemented a multipart program to address these concerns and objectives. The first, Phase I of the Caring Physicians of the World Initiative, was outreach visits by WMA officers to many NMAs and regional meetings of NMAs to learn more directly about circumstances, needs, and desires, and to obtain their participation in advocacy for the values of the medical profession. Within a year, 55 NMAs had selected physicians that exemplified the highest standards of caring, ethics, and science; 65 of them were profiled in a book The Caring Physicians of the World [1]. Phase II of CPWI was launched in Santiago, Chile at the WMA Annual meeting. Subsequently, communications with NMAs, medical specialty societies, government, media, businesses, philanthropies, and multiple other public and private associations and organizations were provided the message of the Caring Physicians of the World (Introduction enclosed). Phase III of the CPWI was collaborations of the WMA and NMAs to hold regional meetings around the world to enhance understanding, communication, and advocacy for patients, the public health, and the medical profession. Physicians profiled in the book were especially honored at these events as examples of the power of our traditions of caring, ethics, and science to kindle hope and trust and instill enthusiasm and optimism. These characteristics


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are common to successful leaders. Thus, it is not surprising that the physician leaders profiled were social leaders as well, on behalf of the public’s health, scientific progress, society’s resources, and the welfare of humankind. Advocacy and leadership were addressed in Phase IV of the CPWI. December 2–9, 2007 thirty-four colleagues selected by their NMAs participated in a course at INSEAD in Fontainebleau, France designed to enhance knowledge, skills, and abilities to use the power of our traditions, patients, friends and colleagues along with new skills and knowledge, to advocate and organize more effectively for medical care, education, research, ethics, and our profession. Feedback has been extraordinarily positive as has the communication between the ‘Alumni’ of the course. The Indonesian Medical Association (IMA) has used the momentum of the INSEAD course to implement its own Caring Physicians Initiative. The IMA, in collaboration with their Minister of Health, will present the Caring Physicians of Indonesia Book at the President’s Palace on May 28th to launch their centennial anniversary of the IMA. Despite the unparalleled progress in biomedical science, public health and medical care, the threats of communicable and non-communicable disease progress. The barriers created by ineffective, inefficient, and sometimes corrupt, governments, legal systems, and institutions flourish. The public is confused by terms, such as providers instead of professionals, customers instead of patients, health care instead of medical care, and the pollution of scientific information by media and distortion by legal and regulatory systems. They are understandably distrustful. However, because of the justifiable enthusiasm physicians have for the value and values of their profession and the ability to be useful, there is good reason to be optimistic that effective leadership, hard work, clear definition of responsibilities and rights as a profession serving people, patients and the public, and a mission beyond self, will result in significant and measurable success. The CPWI is not foremost about medicine or about doctors. The center focus is about people, about patients. The CPWI is about the right of all patients to choose physicians providing care based on a singular ethical commitment to them, using the best available science, in a caring manner. The right for their physician to have appropriate autonomy to provide care and to be their advocate. Fulfilling aspirations to provide ethical and science-based care is important. However, as Osler said, caring is the most important part because it best inspires hope and trust. Thus, it is crucial that physicians, despite the diversity and adversity of circumstances, be able to communicate that caring, through their courtesy, respect and aequinamitus on behalf of the patient.

Reference 1. Nigel Duncan, editor. Caring physicians of the world. Ferney-Voltaire (France): World Medical Association; 2005.


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Three keys to a shared vision of diagnostic assessment: an initiative in person-centered care from the Department of Health in the UK Bill Fulford, DPhil, FRCP, FRCPsych, Fellow of St Cross College and Honorary Consultant Psychiatrist, University of Oxford; Professor of Philosophy and Mental Health, University of Warwick; Co-Director, Institute for Philosophy, Diversity and Mental Health, University of Central Lancashire; and Special Adviser for Values-Based Practice, Department of Health, London Laurie Bryant, Service User Lead, National Institute for Mental Health in England Lu Duhig, Carer Lead, National Institute for Mental Health in England Correspondence to: Bill Fulford, E-mail: [email protected]

Introduction Diagnosis is the missing link in person-centered care. Person-centered care has covered many different aspects of such important areas as treatment, resource allocation, and ethical practice (particularly concerned with patient autonomy). But with important exceptions [1, 2], diagnosis has been widely assumed to be, somehow, reserved to the scientific and other skills of doctors and healthcare professionals, and hence as being beyond the relevant scope of person-centered approaches. It is thus particularly exciting that the Department of Health of the UK government in London has included within a range of recent policy and service development initiatives under the broad banner of ‘personalisation’ [3, 4], a programme specifically concerned with diagnosis. This paper outlines this programme—called the 3 Keys programme [5]—and sets it briefly in context with the wider personalisation agenda.

What are the 3 Keys? The 3 Keys are three aspects of assessment that a majority stakeholders in a wide-ranging consultation, including patients and carers as well as professionals, agreed are important: •• Key 1 is active participation of the service user concerned in a shared understanding with service providers and where appropriate with their carers •• Key 2 is that there should be input from different provider perspectives within a multidisciplinary approach, and •• Key 3 emphasises the importance of building on the strengths, resiliencies and aspirations of the individual service user as well as identifying his or her needs and challenges. These 3 Keys may seem obvious: surely, you may think, everyone approaches assessment in a way that actively involves the service user (or patient) concerned, that takes note of the views of other professionals, and that looks at strengths as well as problems. Yet our consultation showed that while many stakeholders had experienced or could give examples of one or more of the 3 Keys in action, there were very few instances where all three came together. Service users and carers, in particular, told us that if the 3 Keys could be used together more widely, they would feel more empowered and that this would make an important contribution to their recovery and to their chances of developing the skills for self-management.


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In the report on the consultation, correspondingly, we focussed on practice rather than theory, giving a range of the many creative ways in which each of the 3 Keys were already being used, albeit separately.

Examples of the 3 Keys One important finding from the consultation as a whole was that, overall, the more challenging the clinical context, the more creative service providers were in coming up with effective ‘3 Keys’ approaches in partnership with service users and carers. This link between ‘challenge and effectiveness’ is reflected in the following examples from the report.

Key 1—active participation of service users Active participation of service users in coming to a shared understanding of their problems, although perhaps relatively straightforward in many areas of practice, might be thought to be an unrealistic ideal in such areas as learning disability and dementia. In fact, these were both areas in which we found a number of innovative approaches to supporting service user participation. Case Example: Group support for people with severe learning disabilities A psychotherapy service for people with learning disabilities at Springfield Hospital in London developed a group approach to supporting individual service users in playing a full role in how their problems are understood. The key to this is that they are offered opportunities to discuss their assessment within a group that includes other people with learning disabilities as well as staff. This approach not only fully engages the person concerned but also helps professionals relate to group members as individuals in their own right with a positive contribution to make to how their problems are understood and managed.

Key 2—input from different provider perspectives A further important finding from our consultation was the role that voluntary sector organisations may play in providing vital insights from different cultural perspectives. Case Example: A culturally extended model of the multidisciplinary team Sharing Voices, a voluntary sector organisation based in Bradford, a culturally diverse town in the North of England, has developed in partnership with the statutory sector, a number of innovative approaches to providing culturally appropriate services. One of these, ‘The Listening Iman’ project, proved to be particularly effective in overcoming cultural barriers and misunderstandings. In one example, a family of Pakistani origin had been told by a ‘hakima’ that their young son’s perceived behavioural problems were due to possession by a demon. They were wholly unconvinced by the reassurances of professionals from the statutory services that their son’s behaviour was normal for his age and were in great distress. However, the Iman, with authority as a religious leader, was immediately able to reassure them that the hakima was ‘unlawful’ and that their son’s behaviour was indeed entirely normal.

Key 3—building on strengths, resiliencies and aspirations As with the other Keys, a strengths approach to assessment was broadly endorsed in the consultation by a large majority of stakeholders. However, ‘aspirations’ was an exception to this general rule. Service users and carers believe that their aspirations were vital to recovery; while by contrast, many professionals felt that trying to meet people’s individual aspirations, went well beyond what they could offer. It was thus particularly exciting to find in the consultation that support workers, i.e. members of multidisciplinary teams without professional training, had developed a previously unrecognised role in supporting aspirations. Case Example: Aspirations for an ordinary life Jenny Correia, a support worker with the Crisis Intervention and Home Treatment Team at a hospital in North London, was the first to point out the distinctive role of support workers in relation to aspirations. She and others gave us many examples of how attention to a person’s aspirations could be a key step on the road to recovery and yet had been overlooked in assessments by professionals. Importantly, the aspirations in question were not unrealistic. Rather, they were for small but significant aspects of ordinary life, such as going for a walk in the park, which most of us take for granted. Assessments of more formal aspects of a person’s problems are of course important


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(in such areas as medication, housing and employment). But helping people to achieve their aspirations for ordinary life may play a vital role in giving them the confidence to start moving towards recovery.

Next steps: implementation The 3 Keys programme is being implemented, not separately but in close partnership with other programmes directed towards the personalisation of services and values-based practice [6]. The implementation programme, which is being coordinated nationally by NIMHE East Midlands (the National Institute for Mental Health in England is part of the policy delivery side of the Department of Health), thus includes a research and development project with minority cultural groups, and an impact study in connection with a new care pathways policy [5]. It is early days yet. But the strength of support for the 3 Keys approach from service users and carers as well as professionals, gives us hope that the programme will be successful in bringing person-centered approaches in at the vital stage of assessment. As one service user put it, if we are to understand a person’s problems, it is essential that ‘everybody’s voice is heard, including families and carers’.

Acknowledgements For a full list of acknowledgements to the many who have contributed to the 3 Keys programme, please see reference [5, p. 25].

References 1. Mezzich JE. Psychiatry for the person: articulating medicine’s science and humanism. Editorial. World Psychiatry 2007;6(2):1–3. 2. Fulford KWM, Broome M, Stanghellini G, Thornton T. Looking with both eyes open: fact and value in psychiatric diagnosis? World Psychiatry 2005;4(2):78–86. 3. UK Department of Health. Our health, our care, our say: a new direction for community services. London: Department of Health; 2006. 4. UK Department of Health. Putting people first: a shared vision and commitment to the transformation of adult social care. London: Department of Health; 2008. 5. The National Institute for Mental Health in England (NIMHE) and the Care Services Improvement Partnership. 3 Keys to a shared approach in mental health assessment. London: Department of Health; 2008. Available from: www.3keys.org.uk/ downloads/3keys.pdf. 6. Warwick Medical School website for values-based practice. [webpage on the internet] c2008. Available from: http://www2. warwick.ac.uk/fac/med/study/cpd/subject_index/pemh/vbp_introduction.


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Trialog—an exercise in communication between consumers, carers and professional mental health workers beyond role stereotypes Michaela Amering, Prof., Department of Psychiatry and Psychotherapy, Medical University of Vienna, Vienna, Austria Correspondence to: Michaela Amering, E-mail: [email protected]

Community mental health work strives for person-centeredness, resource- and recovery-orientation [1]. Personcentered recovery-oriented care in the community needs well functioning communication and collaboration between mental health workers of different backgrounds with users of services and their families and friends. During the last years in mental health—as in other medical fields—patients have been assuming a more active consumer-role in a partnership model of care instead of being the passive subject of treatment in a paternalistic relationship. New forms of collaborations require new skills of clinicians, service users and their families and friends. Trialog stands for the encounter of the three main groups of individuals who deal with psychiatric problems and disorders and with the mental health system—people with experiences of severe mental distress, family members and friends and mental health professionals—on equal footing. Trialog occurs under special conditions—outside the family, outside psychiatric institutions, outside a therapeutic setting. It is the aim of the Trialog to facilitate communication about the personal experiences in dealing with psychiatric problems and disorders and their consequences. The participating groups strive towards giving up their isolation and lack of common language. Mutual understanding and necessary delimitation from the vast variety of the participants’ different backgrounds concerning experience and knowledge are to be established. Trying to understand and sharing the complex and heterogeneous subjective experiences leads to a common language and a basis for a culture of discussion as is necessary for working together effectively. It is widely argued from different areas of research that acknowledging the personal experiences of users and their families and friends in planning, organizing and doing practical work is necessary to improve both research and practice in dealing with psychiatric problems and disorders [2]. Engaging in the Trialog is the necessary training to further enhance this process. In German speaking countries about 5000 people are engaged in well over 100 groups and obviously benefit from their participation in Trialog. The European Families’ Organisation EUFAMI [3] in 2003 recommended trialog groups for their European membership. Trialogs have started in French speaking Switzerland, in Poland and Lichtenstein. Interest in English-speaking countries like US and UK is growing. An experiment with a Trialog in Turkey in 2006 during a Congress of the World Psychiatric Association went very well and collegues from as far as Trinidad and Tobago felt encouraged to follow-up on the concept of Trialog in their home country. Looking at example of topics covered by Trialog groups—e.g. stigma and discrimination; work and social integration; diagnosis as a trap—being put in a box: religion and psychosis; silent users—who is helping them?—does lend credit to the idea that people all over the world might benefit from such exchanges. Trialog groups also lead to initiation of outside activities, such as serving on quality control boards and trialogic training courses for police officers. The ‘First Vienna Trialog’ was established after the World Conference for Social Psychiatry in Hamburg in 1994 by a small group of people representing users, relatives and professionals. Since then, Trialog meetings are being held twice a month with 10–40 people in attendance. In the beginning, the meetings were only publicized verbally, followed by newspaper ads and announcements within user- and professional organizations. Trialogie is an open group—everyone interested in participating is welcome. It was our experience from the start that users formed the largest share of regular participants, followed by family members and friends and professionals (social workers,


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psychologists, nurses, patient’s advocates, guardians, psychiatrists). As an open group, the number of attendants and the compositions of members from the three groups vary each time, and there is a mix of regulars and of those who drop by to see what the group is like. During the time of the group’s existence the venue of meetings has changed a couple of times. Besides financial considerations, we strived towards finding a place outside psychiatric institutions, unaffiliated with a particular self help organisation and apart from therapeutic or family relations thus offering a ‘neutral ground’ that does not offer an advantage or a privilege for any of the participating groups. For the same reason, we prefer a rotating system of different members in the role of moderator to a model of professional moderation. A role model for the ‘First Vienna Trialog’ was the ‘psychosis seminar’ in Hamburg. The over 100 trialogic seminars in Germany, Switzerland and Austria use different names, such as ‘exchange of experiences with psychosis’ or ‘From dialogue to Trialog’. As a result of a meeting of many different members of such groups a team of people began to evaluate the results of the psychosis seminars and published a guideline in 2000 [4]. We hope that the published accounts of our experience [5], which we reported in a trialogic format, succeed in demonstrating how new, different, extraordinary and unusual this type of encounter is. We emphasized the unique personal and professional learning opportunities trialog engenders as well as highlight the difficulties that can arise when you engage in a trialog as a whole person, start to accept the different members of the group as equally entitled experts, and try not to avoid relevant conflicts of interest. However, when we encourage taking trialog serious we also point out all the fun that it brings. “There is much laughter within the Trialog, which is seen as a powerful remedy” is one important conclusion by a mother talking about her experiences as a trialog group member. Bock and Priebe [6] describe characteristics, history, and possible benefits of psychosis-seminars and trialog groups. From experience and from the few data on Psychosis Seminars in Germany it looks like many participants are characterized by a lot of experience, often over many years. Main benefits for carers stem from gaining knowledge, sharing experience and being able to discuss concrete issues they struggle with within their family with persons, who know similar situations from their own experience, but with whom they are not intimately entangled through emotional and biographical bonds. Consumers benefit from respect for their psychotic experiences and a chance to make sense of these and other experiences in their personal social and biographical context. Professionals value not only the opportunity to gain new insights into the experience of psychiatric problems, but also review their role and their practices in new and comprehensive perspectives. Many attendants share the wish to improve current psychiatric practices and advance the concepts of mental illness and health. Trialogues are inexpensive, widely seen as beneficial, and has developed concepts and terminology which differs from a biomedical model of mental illness (which is still widely prevalent in the mental health system). Specifically, it provides an opportunity to interact outside role stereotypes, and a learning forum for working together on an equal basis—as ‘experts by experience’ and as ‘experts by training’.

References 1. Amering M, Schmolke M. Recovery in mental health. Reshaping scientific and clinical responsibilities. Wiley-Blackwell: London; 2009. 2. Thornicroft G, Tansella M. Growing recognition of the importance of service user involvement in mental health service planning and evaluation. Epidemiologia e Psichiatria Sociale 2005;14:1–3. 3. EUFAMI. European Federation of Associations of Families of People with Mental Illness. [webpage on the internet]. Available from: http://www.eufami.org. 4. Bock T, Buck D, Esterer I. Es ist normal, verschieden zu sein [It is normal to be different]. Psychose-Seminare & Hilfen zum Dialog. Arbeitshilfe 10. Bonn: Psychiatrie-Verlag; 2000. [in German]. 5. Amering M, Hofer H, Rath I. The “First Vienna Trialog”—experiences with a new form of communication between users, relatives and mental health professionals. In: Lefley HP, Johnson DL, editors. Family interventions in mental illness: international perspectives. Westport, CT: Praeger Publishers; 2002. pp. 105–124. 6. Bock T, Priebe S. Psychosis seminars: an unconventional approach. Psychiatric Services 2005;56(11):1441–3.


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Patient-centered curricula at the University of Geneva: opening the door to psychotherapy training Anne-Françoise Allaz, Department of Medical Rehabilitation and Geriatrics, University of Geneva, Switzerland François Ferrero, Department of Psychiatry, University of Geneva, Switzerland Correspondence to: Anne-Françoise Allaz, E-mail: [email protected] or François Ferrero, E-mail: Francois. [email protected]

Introduction An increasing importance is given today to social and behavioural sciences in medical education in most developed countries. The goal is to ensure that trained medical students are ‘fit to purpose’ as stated in an editorial of the British Medical Journal [1]. We believe that a central component of this task is to promote interest towards ‘patientcentered care’ in future medical doctors. This short paper will focus on two patient-centered medical education initiatives which takes place at the beginning and end of the medical curriculum at the University of Geneva: 1. The ‘Person, Health and Society’ program, which takes place during the first year of the medical curriculum and 2. Integrated psychotherapy, which takes place during the pre- and postgraduate training periods in psychiatry.

The ‘Person, Health and Society’ program The goals of this newly created program are to instill, in first-year medical students, an understanding of various psychosocial determinants of health and disease at the individual and community levels. – Interactions with individuals of a wide range of ages and cultural backgrounds within a bio-psycho-social framework are at the core of the curriculum, which focuses on diverse issues, such as chronicity, complexity, multidisciplinary approaches, ethical dimensions, and social and emotional determinants of health. – Special care is given to foster respect for differences, critical thinking, receptiveness to self-criticism, and openmindedness. – The questioning of social issues in medicine is addressed, as well as sociological, anthropological, and community aspects of the medical encounter. – Overall, the main goal of the program is to train medical students to become what has been called ‘good doctors’, which beyond doubt implies being ‘patient-sensitive doctors’. The main themes addressed in the Person, Health and Society Program are shown in the box below: – – – – – – – –

The bio-psycho-social model of health and illness Cure and care concepts/stigmatisation issues Medical psychology including its influence on behaviour and care seeking Behavioural medicine, including neurobiological and interpersonal aspects Communication issues Doctor-patient relationships Decision analysis from epidemiology to patients’ representations Ethical and deontological issues


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– – – – –

Development of the person from the newborn to the aging adult; changes and crises throughout the lifecycle Chronic diseases and health enhancement The health system and its organisation; access to health care Human rights and health; social inequalities and health Emotional and social determinants of health and disease

Faculty and setting The 100-hour program represents 20% of the total first-year curriculum and exam questions. Due to the large number of students (>400), classical lectures alternate with video presentations of patients and seminars in smaller groups where subjective and interpersonal issues can be raised. The multidisciplinary faculty includes general hospital internists, community-based primary care physicians and specialists from the social sciences. The involvement of faculty with formal expertise in behavioural and social sciences may raise issues of acceptance and identity but should be strongly encouraged [2, 3].

Discussion Inserting a program at such an early stage of medical education is a challenge due to the students’ lack of clinical experience. It does, however, have the advantage of making students aware of behavioural and interpersonal issues at a very early stage of their medical studies. It should also be seen as a platform to facilitate the implementation of patient-centered attitudes and curricula in later years.

The importance of the double title of specialist in psychiatry and psychotherapy to advocate individualized medicine Postgraduate training of psychiatrists includes two aspects: psychiatry and psychotherapy [4]. This rather unique situation, which exists today in Switzerland, can be traced back more than half a century and owes a great deal to the influence of a few outstanding personalities in Swiss psychiatry [5]. From a historical point of view, the first crucial decision was made in 1931 to separate psychiatry and neurology. Beginning in 1935, Swiss psychotherapists organized regular meetings which resulted in two distinct societies: the Swiss society of medical psychotherapy, with Oscar Forel as president, and the Swiss society of psychology, with Carl-Gustav Jung as president. In 1957, the distinction is made between the titles of adult psychiatry and child and adolescent psychiatry, and in 1960, the double title of specialist in psychiatry and psychotherapy is introduced. Concerning the audit of the quality of the training, the situation has steadily evolved: beginning in 1960, every psychiatrist-psychotherapist must undertake several supervised psychotherapy sessions. After extended debate, a personal experience of undetermined length becomes mandatory at the end of the 1990s, but it is only since this year (2008) that the minimum length has been set at 100 hours. As a whole, the theoretical training in psychiatry and psychotherapy is spread over 5 years, with an additional year in another clinical branch. The programme includes 2 years devoted to integrative psychiatric psychotherapy treatment, as well as the fundamentals of several models of psychotherapy. During the 3rd year, residents choose to deepen their theoretical and practical knowledge of one of the psychotherapy models (psychoanalytical, family-systemic, cognitive behaviour). In principal, all of the psychotherapy experience takes place under supervision, for a total of 150 hours of IPPT (integrative psychiatric psychotherapy treatment) and 150 hours of psychotherapy. At the end of their training curriculum, which is validated by an exam, the specialists in psychiatry and psychotherapy can further their knowledge, for example through five continuing training programmes that we have set up at the University of Geneva, each one leading to a certification or a diploma [in cognitive behaviour, family-systemic, psychoanalytic, dialectical behaviour (DBT) therapy and in psychosocial and psychosomatic medicine].


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Conclusion We believe that a medical practice centered on the individual must be integrated within the programme from the 1st year of medical school. It should raise awareness to medical approaches concentrating on individuals. As such the curriculum must also make medical students aware of the psychotherapy aspect of treatments and an intensive postgraduate training programme in psychiatry and psychotherapy seems to be an appropriate solution to continue to attract young doctors to psychiatry.

References 1. Wass V. Ensuring medical students are ‘fit for purpose’. British Medical Journal 2005;331:791–2. 2. Peters S, Livia A. Relevant behavioural and social science for medical undergraduates: a comparison of specialist and non-specialist educators. Medical Education 2006;40:1020–6. 3. Russel A, Van Teijlingen E, Lambert H, Stacy R. Social and behavioural science education in UK medical schools: current practice and future directions. Medical Education 2004;38:409–17. 4. Bertschy G, Ferrero F. L’enseignement post-gradué de la psychiatrie adulte à Genève. [The post-graduate training of adult psychiatry in Geneva]. Cahiers psychiatriques 2000;28:59–67. [in French]. 5. Fussinger C. Formation des psychiatres et psychothérapie: regards croisés sur les situations suisse et française. [Psychiatrist’s training and psychotherapy: a comparison between Switzerland and France]. Psychiatrie, sciences humaines, neurosciences (PNS) 2005;3:193–206. [in French].


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Section on Conceptual Bases of Person-centered Medicine

Historical perspectives on person-centered medicine and psychiatry Paul Hoff, Professor of Psychiatry, Deputy Medical Director, Department of General and Social Psychiatry, University of Zurich, Zurich, Switzerland Correspondence to: Paul Hoff, E-mail: [email protected]

Introduction From a historical and actual point of view, the idea of person-centered medicine is not only a question of our basic attitude towards the patient, but also closely connected with any particular concept of illness. WPA drew attention to this central topic already in its founding years and, together with other international medical societies, emphasized it again recently [1]. In general, the term ‘person-centered medicine’ can bear different, though strongly interrelated, meanings: •• •• •• ••

Medicine of the person: this is the theoretical aspect, especially the notion of person itself. Medicine for the person: this is the therapeutical aspect. Medicine by the person: this is the aspect of the medical professionals’ role and self-understanding. Medicine with the person: this is the interpersonal aspect, especially the relationship between patient and doctor.

More specifically, different concepts of illness do have a significant impact on the way person-centered thinking is accepted and integrated into medical practice—or is not. Three examples shall elucidate this. They are taken from the history of ideas in psychiatry, but the arguments involved will be easily applicable to general medicine, as well.

Psychiatry as pars pro toto The diagnostic process in psychiatry has always been a controversial issue. This has to do with particular features of this field: from all medical specialties, psychiatry and psychotherapy are most intensively connected with political, historical and social developments. Psychiatry, as we know and recognize it today, i.e. as a medical discipline closely linked with neurobiological, psychological, sociological and philosophical issues, may with good reasons be regarded a product of the era of enlightenment in the second half of the 18th century [2]. From this time on, the view of mentally ill people as persons gained influence, albeit slowly, as persons with indispensable human rights and with a personal autonomy that may be diminished, but not eradicated by whatever illness they might be affected by. Psychiatry began to emerge as a medical discipline, rooted in scientific research and dedicated to the treatment of individual persons. Since then, three major approaches to the phenomenon of mental illness were developed and adopted in psychiatry: (1) the realistic1 neurobiological approach from the middle of the 19th century until now, (2) the biographical-hermeneutic approach from the beginning of the 19th century until now and (3) the nominalistic descriptive-operational approach practised since the end of the 20th century by ICD 10 and DSM IV [3]. I will now discuss chances and limitations of these three concepts with regard to person-centered medicine.

1 ‘Realistic’ in an epistemological sense; i.e. the assumption that the real world is existing fully independently from our conceptualization or our mental acts; Emil Kraepelin’s concept of ‘natural disease entities in psychiatry’ is the example for such a realistic approach to psychiatric nosology [2].


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•• The realistic neurobiological approach regards mental illness similar to, if not identical with, somatic illness: Schizophrenia, for example, will here be regarded an external object, a quantitatively detectable neurobiological disorder, existing independently from the researcher or diagnostician and his or her mental activities. In this case, the process of diagnosing mental illness comes close to taking a photographic picture, because the aim is to objectively depict what is ‘real’ without interpretation or other subjective influences. •• The second option is the biographical-hermeneutic approach. In this case, the focus is not so much on the objective nature of mental illness or on the process of constructing diagnostic terms, but on the understanding and interpreting behaviour and utterances of the patient, given his or her specific biographical and personal background. •• The third option is the nominalistic descriptive-operational approach to mental illness. This is what our present operationalized diagnostic manuals as ICD-10 and DSM-IV do. They do not provide us with a definition of what, for example, schizophrenia ‘really is’, but with practical guidelines how to use the term schizophrenia in a proper scientific way, taking the actual empirical knowledge about this disorder (not: disease!) into account. In this case, diagnosis is a theoretical construction and an expert-opinion based convention; it is not, contrary to the realistic definition mentioned above, an objective picture of something completely independent from the person taking this picture. These considerations are by no means ‘only’ theoretical, but they do have a significant practical impact on diagnosis, on therapy and on psychiatry’s self-understanding. In forensic psychiatry which directly linkes the notions of mental illness and personal responsibility, the debate became especially controversial and attracted much public interest recently, although the arguments are not fundamentally different from those in the areas of clinical psychiatry and research [4, 5].

The risk of dogmatization There are often underestimated risks for any of the three concepts mentioned above to be used in a reductionistic, not to say dogmatic way, especially with regard to person-centeredness: •• If the realistic definition of mental illness is understood in a extremely narrow sense, as for example eliminative materialism does [6], we will end up with a naturalistic reductionism which straightforwardly identifies mental illness with dysfunctional neurobiological processes. This, of course, leaves no space to deal with the issue of subjectivity within a scientific framework. Recently, there are a number of decisive, sometimes even polemical positions in this discussion, e.g. John Bickle’s (2003) book on philosophy and neuroscience, subtitled ‘A Ruthlessly Reductive Account’ [7]. But within the psychiatric and neuroscientific research community itself, many authors nowadays will agree that we need a concept beyond single methodological perspectives which also includes the notion of person. For example, there is a philosophically substantial and widely recognized debate on the relationship between evidence- and value-based decision-making in psychiatry. These topics in themselves are, of course, not new for the field, but they attracted remarkable interest and generated fruitful discussions especially since Fulford’s (1989) book on ‘Moral Theory and Medical Practice’ [8]. •• Nominalistic definitions as in ICD-10 and DSM-IV bear the risk of becoming dogmatic in the sense of a formalistic reductionism. This happens, for example, if the users of operationalized diagnostic algorithms presume that the entire phenomenon of psychosis is covered by or even identical with these operationalized procedures. Special problems will arise in the forensic situation if direct conclusions are drawn from DSM IV- or ICD 10-based diagnoses to such complex issues as criminal responsibility or other legal capacities. •• It must not be forgotten, however, that also the biographical definition may run into dogmatism: if one believes, that the etiology, pathogenesis and clinical symptomatology of a given mental illness may completely be understood, even explained by the process of understanding and interpreting, this will constitute a heuristical reductionism. This can become a relevant problem in long-term psychotherapeutic processes by overestimating the explanatory power of a single interpretation, thus underestimating other options. Of course, it is difficult to define where the area of hermeneutical methods ends, and this boundary may vary from one therapeutical situation to the other. Karl Jaspers tackled with that problem in some detail in his famous paper on the differentiation between psychological development and process (‘Entwicklung und Prozess’) and in his discussion of several types of scientific prejudices in his ‘General Psychopathology’ [9–11]. In recent years, there has been a tendency to combine classical scientific areas with the suffix ‘neuro-’ in order to demonstrate the implementation of modern neuroscientific methods and results, e.g. in terms as neuroethics [12] Conceptual Explorations on Person-centered Medicine

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or, more generally, neurophilosophy [13, 14]. In our present context the question arises if and how person-centered psychiatry could profit by this development. There are two arguments to consider: on the one hand, it is a promising new approach to combine neurobiological techniques like functional brain-imaging or neurophysiological data (e.g. evoked potentials) with more person-oriented areas as social cognition, decision-making or the relationship between affective and cognitive processes. On the other hand, just to combine different techniques or data will not solve the problems of the limitation of each method and the need of a leading principle ‘behind’ these single approaches. For example, the status of subjectivity or personal autonomy remains a tackling issue no matter which empirical procedure will be chosen.

Psychopathology and personhood The reason for this is of a principal nature: the basic questions mentioned above cannot be answered by empirical research only, be it biological, psychological or sociological in nature. We do need a basic conceptual framework addressing the notions of personhood and mental illness in general, and diagnosis and therapy in particular. At this crucial point, psychopathology—once named ‘basic science of psychiatry’ (‘Grundlagenwissenschaft der Psychiatrie’) by Werner Janzarik (1979) [15]—might again become a relevant point of reference, but only under the following specific circumstances [16]. On the practical side, psychopathological notions will have to be continously developed further (e.g. by not taking any definition of delusion for granted, but to continuously link new empirical data with theoretical considerations). This shall include operational descriptions of psychopathological phenomena (e.g. within the ongoing development of ICD 11 and DSM V) [17] as well as ‘open descriptions’ (e.g. by scientifically respecting qualitative phenomena like personality traits, interpersonal traits or biographical aspects that are not easily detectable by highly formalized rating scales). And a close linkage, albeit not a merging (!), with neurosciences and social sciences will be essential (e.g. by further developing research designs for the interface between social cognition, empathy or altruism on the one side and brain function on the other side without accepting any naive reductionism or materialism). On the theoretical side, psychopathology will have to acknowledge the chances and limitations of empirical methods (e.g. by the constant awareness of methodological fallacies, be they naturalistic or hermeneutic). It will need to accept subjectivity as a scientific topic of its own and not only as a temporary fill-in, which at some point of time in the future will be replaced by strictly neurobiological data and concepts. And, finally, it will have to actively implement historical knowledge about psychiatric concepts into the actual debate on psychiatry’s identity (e.g. by reflecting upon the basic questions that link all the heterogeneous concepts of mental illness at least since the era of enlightenment, especially mind-body-relationship, nosological status of mental illness, status of psychiatric diagnoses, scientific relevance of objective vs. subjective data). But this will also mean for psychopathology to be self-confident enough to leave fundamental issues open (i.e. not to accept premature definitions of mental phenomena in general and of personhood, autonomy and subjectivity in particular, however, practical they may seem to be). In a broader perspective it is obvious that, on the one hand, the notions of person or personhood are central issues in practical psychiatry, but, on the other hand, they necessarily lead us into the center of philosophical debate. And not too few psychiatrists, in history and nowadays, were and are decisively sceptical with regard to the benefits of such philosophical arguments for their field. However, if we do not want to reduce the notion of person to just one, usually the prevailing, scientific perspective, we will have to enter the debate on what is or what we call a person and in which way personhood can or cannot be affected by mental illness. One of the radical positions on this issue was developed by transcendental philosophers like Immanuel Kant and Johann Gottlieb Fichte for whom the concept of an irreducibly autonomous and responsible subject within his or her interpersonal relations was not (only) a matter of empirical science, but the prerequisite of any scientific approach to the conditio humana. These complex philosophical theories—and many others from the 18th and 19th centuries—have been criticized in recent decades, especially following the linguistic turn in philosophy in the 20th century and its usually underestimated consequences for psychiatry. But nonetheless the issue of personhood and its relationship to diagnosis and treatment of mental illness is far from being settled. So, if person-centeredness shall become the essential framework for psychiatry, the philosophical debate needs to be specifically reflected upon and integrated into psychiatry [18, 19].


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Conclusion In conclusion, these brief considerations on the history and present status of person-centeredness and on the future role of psychopathology can be summarized in three theses: •• The debate on the concepts of mental illness may serve as pars pro toto for any medical concept since the notion of person is central to psychiatry, but, of course, also relevant for any other medical field. •• The idea of person-centered medicine must be actively supported and worked out separately from single nosological models. These models provide too narrow a framework, thus creating a high-risk of dogmatization. •• Subjectivity and, in general, the nature of the individual person are central topics in psychopathology. They cannot be reduced to a single perspective, not to the neurobiological and not to the hermeneutical one. They create an interface between psychiatry and philosophy that is nothing less than ‘mere theory’ or ‘l’art pour l’art’. It is of utmost importance for psychiatry as a practical medical field and as a research discipline.

References 1. Mezzich JE. Institutional consolidation and global impact: towards a psychiatry for the person. World Psychiatry 2006 Jun;5(2):65–6. 2. Hoff P. Emil Kraepelin und die Psychiatrie als klinische Wissenschaft. Ein Beitrag zum Selbstverstaendnis psychiatrischer Forschung [Emil Kraepelin and psychiatry as a clinical science]. Berlin Heidelberg New York: Springer; 1994. [in German]. 3. Hoff P. Warum noch Psychopathologie? [Why still psychopathology?]. In: Schneider F, editor. Entwicklungen der Psychiatrie [Developments in psychiatry]. Heidelberg: Springer; 2006. p. 151–7. [in German]. 4. Gruen KJ, Friedman M, Roth G, editors. Entmoralisierung des Rechts. Massstaebe der Hirnforschung fuer das Strafrecht [Un-moralize justice]. Goettingen, Germany: Vandenhoeck & Ruprecht; 2008. [in German]. 5. Kroeber HL. The historical debate on brain and legal responsibility—revisited. Behavioral Science & the Law 2007;25(2): 251–61. 6. Churchland PS. Neurophilosophy: towards a unified theory of the mind-brain. Cambridge: MIT Press; 1986. 7. Bickle J. Philosophy and neuroscience. A ruthlessly reductive account. Dordrecht, the Netherlands: Kluwer Academic Publishers; 2003. 8. Fulford KWM. Moral theory and medical practice. Cambridge: Cambridge University Press; 1989. 9. Jaspers K. Eifersuchtswahn Ein Beitrag zur Frage: ‘Entwicklung einer Persoenlichkeit’ oder ‘Prozess’? [Jealousy delusion. A contribution to the question ‘development of personality’ or ‘process’?]. Zeitschrift fuer die gesamte Neurologie und Psychiatrie 1910;1:567–637. [in German]. 10. Jaspers K. Allgemeine Psychopathologie [General psychopathology]. Berlin: Springer; 1913. [in German]. 11. Hoff P. Erkenntnistheoretische Vorurteile in der Psychiatrie—eine kritische Reflexion 75 Jahre nach Karl Jaspers’ Allgemeiner Psychopathologie“. [Knowledge theoretical bias in psychiatry. A critical reflection 75 years after Karl Jaspers’ ” Allgemeiner Psychopathologie“]. Fundamenta Psychiatrica 1989;3:141–50. [in German]. ” 12. Greely H. On neuroethics. Science 2007 Oct 26;318(5850):533. 13. Bennett MR, Hacker PMS. Philosophical foundations of neuroscience. Oxford: Blackwell Publishers; 2003. 14. Smythies JR. Neurophilosophy. Psychological Medicine 1992 Aug;22(3):547–9. 15. Janzarik W. Psychopathologie als Grundlagenwissenschaft [Psychopathology as a science of principles]. Enke, Stuttgart: Enke; 1979. [in German]. 16. Hoff P. Do social psychiatry and neurosciences need psychopathology—and if yes, what for? International Review of Psychiatry 2008 Dec;20(6):515–20. 17. Kendler KS, Appelbaum PS, Bell CC, Fulford KW, Ghaemi SN, Schaffner KF, et al. Issues for DSM-V: DSM-V should include a conceptual issues work group. American Journal of Psychiatry 2008 Feb;165(2):174–5. 18. Hoff P. Historical roots of the concept of mental illness. In: Salloum IM, Mezzich JE, editors. Psychiatric diagnosis: challenges and prospects. Chichester: Wiley & Sons; 2009. p. 3–14. 19. Kendler KS, Parnas J, editors. Philosophical issues in psychiatry: explanation, nosology and phenomenology. Baltimore: Johns Hopkins University Press; 2008.


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The person and philosophy of science and medicine Kenneth F. Schaffner, MD, PhD, University Professor of History and Philosophy of Science, Professor of Psychiatry, University of Pittsburgh, Pittsburgh, USA Correspondence to: Kenneth Schaffner, E-mail: [email protected], [email protected]

This article addresses three perspectives from which to view the person in personalized and person-centered medicine and psychiatry. The first considers the particular person’s body, with a focus on pharmacogenomic advances in understanding individual variation both in drug metabolism (e.g. CYP genotyping) as well as in dopamine and receptor polymorphisms. The second part of the talk considers the particular person’s ‘mind’—as a complex narrative of life plans, experiences, responses, and family and social contexts, and how philosophy has characterized and interpreted the person seeking psychiatric help. The article concludes with an exploration of how the first two perspectives can best be philosophically integrated for the whole particularized individual, and considers how the tools and resources of the World Psychiatric Association Institutional Program on Psychiatry for the Person (IPPP) might assist this integration. Before approaching these three perspectives, we first need to be clear about the several senses in which ‘personalized medicine’ may be used. There seem to be two somewhat overlapping senses that will concern us in this paper. The first, and most broadly accepted but also the more restrictive sense, identifies personalized medicine with individualized medicine—and is focused on largely genetic individual variation. The broader sense of personalized medicine (including psychiatry) was the topic of this 2008 Geneva conference, and looks to the individualized person in all of his or her levels of being and contexts. This second sense of personalized medicine bears affinities with the older biopsychosocial model of George Engel [1, 2], as well as with the approach urged by Laín Entralgo [3]. As I shall show later in this paper, the second sense of personalized medicine encompasses the first. I shall begin however, with a discussion of the first sense of personalized medicine as represented in recent developments regarding genetic medicine. Levy and Young [4] characterize this approach as “tailoring based on genotype, especially pharmacogenetic information”. Similarly, Hoffman wrote that this perspective involves “designed oligonucleotides … targeted [to] the patients’ genetic mutation,” so as to bypass the mutation, leading to normal end results of the operation of cellular machinery [5]. This type of approach is reductionistic, and more specifically involves ‘genetic determinism’—or at least genetic prioritization. It is represented in the scientific approach of Eric Kandel in neuroscience [6], in many writings of Watson and Crick in genetics, and in the work of John Bickle in philosophy of science and the Churchlands in philosophy of mind. Bickle describes this position—a view he labels ruthless reductionism in the following terms: “Lower-level neuroscience can … explain cognition and complex behavior directly. These experimental practices involve intervening directly with molecular components of sub-cellular and gene expression pathways in neurons and then measuring specific behaviors. These behaviors are tracked using tests that are widely accepted by experimental psychologists to study the psychological phenomenon at issue (e.g. memory, attention, and perception)” [7]. The approach in pharmacogenetics is essentially identical to Bickle’s view—the causal flow in pharmacogenetics characterized by Stahl is from genome to protein to endophenotype to behavior [8]. The most significant results are in the areas of oncology and in psychiatry, and in the latter in the association between drug metabolic polymorphisms, mainly in cytochrome P450 genes, with variations in drug metabolic rates and side effects. Patients with genetically determined CYP2D6 poor metabolizer (PMs) status may require lower doses of antipsychotic. Alternatively, CYP2D6 ultra-rapid metabolizers (UMs) will need increased drug dosage to obtain therapeutic response [9]. Arranz and de Leon note additionally that polymorphisms in dopamine and serotonin receptor genes are repeatedly found associated with response phenotypes, probably reflecting the strong affinities that most antipsychotics Conceptual Explorations on Person-centered Medicine

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display for these receptors. In particular, there is important evidence suggesting association between dopamine 2 receptor (D2) polymorphisms (Taq I and _141-C Ins/Del) and a dopamine 3 receptor (D3) polymorphism (Ser9Gly) with antipsychotic response and drug-induced tardive dyskinesia. Though pharmacogenomics is in its early stages, encouraging progress in implementing it has been made in recent years. A pharmacogenetics program in the Netherlands was begun in 2005 known as the Pharmacogenetics Working Group or PWG. ‘In this 15-member multidisciplinary working group, clinical pharmacists, physicians, clinical pharmacologists, clinical chemists, epidemiologists, and toxicologists are represented. The objective of the PWG is to develop pharmacogenetics-based therapeutic (dose) recommendations on the basis of a systematic review of literature, and to assist the drug prescribers as well as the pharmacists by integrating the recommendations into computerized systems for drug prescription and automated medication surveillance’ [10]. The PWG initiative is the first to integrate pharmacogenetic test results and therapeutic (dose) recommendations into automated medication surveillance systems to be applied nationwide. It covers some 85 genotype/phenotype drug combinations comprising 26 drugs, including recommendations for dose variation depending on genotype for risperidone, haloperidol, imipramine, and nortriptiline. For some drugs, no genotype-dose relation has (yet) been found, including clozapine and olanzapine. Thus far, I have been discussing the reductionist and more restrictive interpretation of personalized medicine, and including within that discussion some important implications for psychiatry. But the more general sense of personalized medicine also draws on a more non-reductionistic philosophy of science. And because psychiatry deals with disorders of the mind, a discussion of some themes from philosophy of mind is important. Here, we might actually begin with a reductionist approach in philosophy of mind, before commenting on strongly antireductionist, and then a middle way multilevel approach to the mind on the part of philosophers. This reductionistic approach is represented in the work of Patricia and Paul Churchland, philosophers who, in a number of books and articles [11–14], have developed a systematic ‘neurophilosophical’ and eliminitivist approach. In their eliminativist and materialist position, mind, and all ‘folk psychology’—any talk of desires, decisions, and problem solving—will be eliminated, and replaced by descriptions of brain circuits and brain processes. The Churchlands argue just as we once believed in a flat earth, and still talk about ‘the sun rising,’ that in the future brain science will allow us to eliminate all soul talk and mind talk, including what is typically termed ‘folk psychology’ and replace that with brain circuit talk. Perhaps, a better analogy is that we need no longer talk about ‘genes,’ but can talk purely and more accurately about DNA. This is a very ambitious reductive project, and one that a student of theirs once described to me as ‘loopy’—a view with which I tend to agree. We are nowhere even close to seeing that type of eliminitivist program brought to fruition, much less any application in the psychiatric clinic. In stark contrast is a strongly emergentist or antireductive position, frequently described as ‘the hard problem.’ This is a view defended by David Chalmers, Thomas Nagel, Frank Jackson, and several other very influential philosophers of mind (see Chalmers [15]). It is directed at phenomenal consciousness or raw experience, such as the experience of seeing red, which it views as ‘the hard problem’ for brain science and neuroscience to solve or adequately explain. These subjective first-person experiences are known philosophically as ‘qualia.’ Easy problems for brain science are claimed to be explaining how we learn or perceive. Accounting for qualia, and the end stage of perception, the experiencing, however, is what is called ‘the hard problem.’ Regardless of how detailed a description one can give of perceptual apparatus and brain circuits, the question still remains ‘what is it like’ to have an experience—to perceive qualia? ‘Mary the color scientist’ is one elaborated example popular in the literature. And there is even a book about this Mary [16]. One can also ask why we need consciousness at all, since an automaton—a ‘philosophical zombie’—could do all that humans do. Though Chalmers suggests that recognizing ‘the hard problem’ exists opens up the way for a better ‘science of consciousness,’ exactly how such a science might work is very murky. Consciousness seems almost by definition to be inexplicable, or empirically empty. Jagewon Kim’s recent book on consciousness seem to confirm this emptiness [17]. A co-author of Francis Crick’s, Christoph Koch, published a 2004 scientific book on The Quest for Consciousness [18] on how one might account for correlates of conscious experience, but it is not convincing to me, and it does not identify conscious experience with any brain processes, which is what is needed to solve ‘the hard problem’. Koch only speaks of ‘correlations.’ My third, and last, example of approaches from the philosophy of mind is what I characterize as ‘pragmatic.’ What I mean by pragmatic is to see the mind naturalistically, as a problem solver in the world, but also as a complex narrative of experiences, perceived problems, responses, life plans, and family and social contexts. The general early


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view can be found in philosophical pragmatism, represented in the work of William James, Charles Peirce, and John Dewey [19–21]. This is a kind of very sophisticated behaviorism, but one that permits and celebrates ‘internal’ experience. This account, at least in my view, is roughly congruent with the philosophical writings of Daniel Dennett, who elaborates a more scientific, and current view of consciousness than is found in the traditional pragmatists [22, 23]. It is to his writings that I turn to describe this view. Dennet introduces five important ideas that are relevant to psychiatry in general and personalized psychiatry in particular. These are what he calls (1) ‘heterophenomenology,’ (2) his arguments against any kind of Cartesian theater and his account of mind as ‘multiple drafts.’ In addition, there is Dennett’s notion of (3) the self as a construct, like a center of (narrative) gravity, as well as (4) self-consciousness as a virtual serial machine running on a massively parallel processing brain, and finally (5) his analysis of ‘greedy reductionism’ versus good reductionism. Heterophenomenology is Dennett’s most important idea for us, and describes how human subjects collaborate with an experimenter—“making suggestions, interacting verbally, telling what it is like.” This takes human subjectivity seriously, but does so in terms of a third person methodology. Such a heterophenomenology takes not only human subjectivity as well as ‘folk psychology’ seriously, but it can also be extended and enhanced. A well-trained and sensitive interviewer can interact with the patient as person to disclose factors and situations that can affect both negative health as well as positive health. And such an interviewer—a psychiatrist—can also use an enhanced heterophenomenology to ascertain the nature of the patients interactions with the family, as well as the patients concerns and aspirations related to society. Dennett’s other ideas mentioned above provide a robust set of foundations for his sophisticated behaviorism. An introductory article such as this does not have the space to describe those elements, but readers are encouraged to see Dennett’s general analysis developed in most detail in his [22], but then augmented in his more recent [23], as a means of avoiding the peculiar extremes of both ruthless eliminative reductionism and the mysterious and spooky ‘hard problem.’ Dennett provides us with a rich, complex naturalistic theory of mind. It is not reductionistic in the ‘greedy’ sense, and it tolerates multiple levels. And, heterophenomenology is what psychiatrists actually practice in their discussions with patients. Such heterophenomenology can be easily extended to the family, and the individuals place and interactions with the family and society. Dennett’s account is, however, incomplete in several respects. It lacks an account of why some things enter consciousness from the unconscious. His analysis of the self is impoverished and provides no reason why a ‘zombie’ could not have a self. And its dismissal of qualia is not fully convincing—a deeper analysis of the first-person perspective is needed. I suggest this because, as the prominent 20th century philosopher Wilfrid Sellars said to Dan Dennett over a glass of wine: “But Dan, qualia are what make life worth living” ([22], p. 383). What guidance or insights can philosophy of science, and its sub-branches of philosophy of medicine and philosophy of mind, provide for the pharmacogenomics, psychiatry, and the Person-centered Integrative Diagnosis project (PID)? (For more detail on the PID project and its general context within personalized medicine, see [24] and also the other essays in this issue.) For pharmacogenomics, these disciplines can caution against greedy reductionism and sketch a multilevel approach that also allows for individuality and particularity. For psychiatry, these disciplines can point out that consciousness and the self are still difficult problems, though not unsolvable ‘hard problems,’ but ones on which more philosophical analysis and empirical research are needed. And as suggested above, an enhanced heterophenomenology can probe more deeply into the needs and concerns of the patient as person, as well as ascertain the interaction of the patient with patient’s family and his or her roles in society. This can be accomplished by better interviewing and recording approaches and tools, expected to arise for the PID. A well-developed and robust ‘personalized medicine’ (PM) with treatments tailored to the genetics (and environments) of the person would assist this person-centered diagnosis. This is more for the future, as there are many scientific, economic, and philosophical hurdles to surmount before this becomes a complete reality for all persons.

References 1. Engel GL. The need for a new medical model: a challenge for biomedicine. Science 1977 Apr 8;196(4286):129–36. 2. Engel GL. The clinical application of the biopsychosocial model. American Journal of Psychiatry 1980 May;137(5):535–44. 3. Laín Entralgo P. Doctor and patient. New York: McGraw-Hill; 1969. 4. Levy H, Young JH. Perspectives from the clinic: will the average physician embrace personalized medicine? Clinical Pharmacology and Therapeutics 2008 Mar;83(3):492–3.


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5. Hoffman EP. Skipping toward personalized molecular medicine. New England Journal of Medicine 2007 Dec 27;357(26): 2719–22. 6. Kandel ER. A new intellectual framework for psychiatry. American Journal of Psychiatry 1998 Apr;155(4):457–69. 7. Bickle J. Philosophy and neuroscience: a ruthlessly reductive account. Dordrecht, Boston: Kluwer Academic Publishers; 2003. 8. Stahl SM. Personalized medicine, pharmacogenomics, and the practice of psychiatry: on the threshold of predictive therapeutics in psychopharmacology? CNS Spectrums 2008 Feb;13(2):115–8. 9. Arranz MJ, de Leon J. Pharmacogenetics and pharmacogenomics of schizophrenia: a review of last decade of research. Molecular Psychiatry 2007 Aug;12(8):707–47. 10. Swen JJ, Wilting I, de Goede AL, Grandia L, Mulder H, Touw DJ, et al. Pharmacogenetics: from bench to byte. Clinical Pharmacology and Therapeutics 2008 May;83(5):781–7. 11. Churchland PM. A neurocomputational perspective: the nature of mind and the structure of science. Cambridge, MA: MIT Press; 1989. 12. Churchland PM. Neurophilosophy at work. Cambridge, New York: Cambridge University Press; 2007. 13. Churchland PS. Neurophilosophy: toward a unified science of the mind-brain. Cambridge, Mass.: MIT Press; 1986. 14. Churchland PS. Brain-wise: studies in neurophilosophy. Cambridge, Mass.: MIT Press; 2002. 15. Chalmers DJ. The conscious mind: in search of a theory of conscious experience. New York: Oxford University Press; 1996. 16. Ludlow P, Nagasawa Y, Stoljar D. There’s something about Mary: essays on phenomenal consciousness and Frank Jackson’s knowledge argument. Cambridge, Mass.: MIT Press; 2004. 17. Kim J. Physicalism, or something near enough. Princeton, NJ: Princeton University Press; 2005. 18. Koch C. The quest for consciousness: a neurobiological approach. Denver, Colo.: Roberts and Co.; 2004. 19. James W. Pragmatism, and four essays from the meaning of truth. New York: New American Library; 1955. 20. Peirce CS, Hartshorne C, Weiss P. Collected papers. Cambridge: The Belknap Press of Harvard University Press; 1960. 21. Dewey J. Logic, the theory of inquiry. New York: H. Holt and Company; 1938. 22. Dennett DC. Consciousness explained. 1st ed. Boston: Little, Brown and Co.; 1991. 23. Dennett DC. Sweet dreams: philosophical obstacles to a science of consciousness. Cambridge, Mass.: MIT Press; 2005. 24. Mezzich JE. Psychiatry for the person: articulating medicine’s science and humanism. World Psychiatry 2007 Jun; 6(2):65–7.


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Moral theories and medicine for the person George Christodoulou, Prof., President, Hellenic Centre for Mental Health and Research, Athens University, Greece Correspondence to: George Christodoulou, E-mail: [email protected]

The purpose of this paper is to examine to what extent medicine for the person [1] is related to Medical Ethics. Medicine for the person conceptually represents an attempt to bring to the foreground attention to the person (basically the person of the patient but also that of the physician) as opposed to the inattention, disrespect and disregard of the person, an attitude that prevails in modern Medicine [2–5] (but also in modern Society as such). This is a consequence of a variety of factors but, as refers to Medicine, fragmentation of care and hyperbolic dependence on technology seem to be major contributors [1]. It would certainly be naïve to deny the importance of specialization (a prerequisite to achieving expertise in a specific field of scientific knowledge) and disregarding the advantages of technological achievements with their immense contribution to Medicine. Yet, as Hippocrates has stressed many centuries ago, it is important to avoid excesses (‘παv μέтρоv άρıσтоv’—nothing in excess). In certain cases, overspecialization has deprived the physician of his (her) holistic vista and excessive and disproportionate dependence on technology has reduced the patient to a ‘case’ and the physician to a mere technician of health and not a person ‘equal to God’ (‘ıσόθεоς’) (as professed by Hippocrates). These developments certainly have ethical implications that should be carefully considered, especially with reference to the quality of care that we provide to our patients. One of the components of good quality of care is satisfaction of not only the biological but also the psychosocial needs of the patient. The importance for this holistic approach has again been strongly advocated by Ancient Greek philosophers and physicians like Socrates, Plato and Aristotle [6] but also by Ayurvedic and Chinese medical traditions [1]. Good quality of care is also promoted by attention to concepts and, more importantly, practices like positive mental health (that keeps people healthy, in contrast to ones that cure an illness after its appearance) as well as empowerment, resilience, recovery [7, 8] and values-based medicine [9] that promote the active involvement of the person in maintaining health, protecting him (her) self from illness and recovering from it. Clearly, this is consistent with the ethical principle of autonomy as put forward by Beauchamp and Childress [10] in their Principlism theory of Ethics. The existing Moral theories in Medicine, as summarized by Green and Bloch are Virtue Ethics, Casuistry, Deontological Theory, Utilitarianism, Principlism and Ethics of Care [11]. The importance of each of these theoretical frameworks depends on the criteria for their evaluation but it is generally believed that Virtue Ethics is “the only approach that has retained relevance over the course of history” [12]. This is because ethical principles are filtered through the individual practitioner and it is up to the practitioner and his virtuous or non-virtuous personality to implement or undermine the ethical concept behind each moral theory. Implementation is personified and individualized and the ethical message can be enhanced, highlighted, differentiated distorted or even neutralized and abandoned altogether. This is why the personified approach should concern not only the patient but the physician as well. Clearly, there is need not only for Medicine for the person but also Medicine by the person. In conclusion, Ethics is a sine qua non component of medicine and psychiatry for the person. This is particularly true of Clinical Medicine and Clinical Psychiatry where there is (or more accurately, should be) active interpersonal interaction between two persons, the physician and the patient. Those of us who believe in the substantial therapeutic Conceptual Explorations on Person-centered Medicine

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effects of this interaction, have the obligation to provide convincing evidence towards this direction and persuade our hesitant colleagues that being ‘nice’ to the patient does not serve only the needs of civilized social behavior, does not serve only a philanthropic purpose but, more than that, has a substantial therapeutic effect. Spending a little time with the patient to facilitate compliance to medication can have tremendous beneficial advantages for the patient and can be very rewarding for the physician as well. Is it ethical to ignore the therapeutic potential of the doctor-patient interpersonal relationship? Is it ethical to deprive the patient of the advantages of a therapeutic intervention because we do not (want to) have time to discuss compliance to this intervention with the patient? Is it ethical to practice defensive medicine and disregard our Hippocratic obligation to consider the patient’s well-being as our first priority? And how about the relationship of the physician with the rest of the staff? Is it ethical to allow interpersonal disputes and dysfunctions arising from a non-personified (and often ignoring, depreciating and humiliating) attitude to interfere with the treatment of our patients? There are questions that should be in the focus of our attention, if we want to bring our theoretical “Ethics of person-centered Medicine” ideas into practice.

References 1. Christodoulou GN, Fulford KWM, Mezzich J. Psychiatry for the person and its conceptual basis. International Psychiatry 2008;5(1):1–3. 2. Bloch S. The art of psychiatry. World Psychiatry 2005;4(3):130–4. 3. Sharfstein SS. Presidential address: advocacy for our patients and our profession. American Journal of Psychiatry 2005 Nov;162(11):2045–7. 4. U.S. Public Health Office of the Surgeon General. Mental health: a report of the surgeon general. Rockville, MD: Department of Health and Human Services, U.S. Public Health Service; 1999. 5. UK Department of Health. Creating a patient-led NHS: delivering the NHS improvement plan. London: Department of Health, UK; 2005. 6. Christodoulou GN, editor. Psychosomatic medicine. New York: Plenum Press; 1987. 7. Anthony W. Recovery from illness. The guiding vision of the mental health service systems in the 1990s. Psychosocial Rehabilitation Journal 1993;16:11–23. 8. Amering M, Schmölke M. Recovery—Das Ende der Unheilbarkeit [Recovery—the end of incurability]. Bonn, Germany: Psychiatrie Verlag; 2007. [in German]. 9. Fulford KWM, Thornton T, Graham G. Values, Ethics and Mental Health. Part IV of Fulford KWM, Thornton T and Graham G. The Oxford Textbook of Philosophy and Psychiatry. Oxford: Oxford University Press; 2006. 10. Beauchamp T, Childress J. Principles of biomedical ethics. 4th edition. Oxford: Oxford University Press; 1994. 11. Green S, Bloch S. An anthology of psychiatric ethics. Oxford, New York: Oxford University Press; 2006. 12. Mac Intyre A. From Homer to Benjamin Franklin: the nature of the virtues. The Hastings Center report 1981 Apr;11(2): 27–34.


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Section on Personal Identity, Experience and Meaning in Health

The person in medicine Eric J. Cassell, Emeritus Professor of Public Health, Weill Medical College of Cornell University New York, New York, USA Correspondence to: Eric J. Cassell, E-mail: [email protected]

Introduction A brief description of what is a person is followed by a brief description of what sickness is. It is apparent that virtually every aspect of the person is altered to some degree by serious illness. It is a circumstance of the ascendant theory of sickness (‘when a person is sick it is because of disease’), history, and a result of the development of science that the physical manifestations of sickness are so prominent. Because persons are of a piece, whatever happens to one part happens to the all. Because of this, if a determinant of the illness is personal, psychological, social, or spiritual there will necessarily be physical manifestations as well. If these are given the most attention (as at present) that might not be true to the patients experience or offer the best opportunities for intervention. Sickness makes itself known by interferences in functioning that prevent persons from pursuing their goals and purposes. Healing should be directed toward restoration of functioning and a consequent return of well-being

The person This brief description of a person should be read with seriously ill persons in mind so as to be aware that serious illness has an impact on virtually all facets of personhood. A person is an embodied, purposeful, thinking, feeling, emotional, reflective, relational, human individual always in action, responsive to meaning, and whose life in all spheres points both outward and inward. Virtually all of a person’s actions—volitional, habitual, instinctual, or automatic—are based on meanings. Persons live at all times in a context of ever present relationships in which a variable degree of trust is necessary both in others and in the self. The communal nature of persons has been partly obscured by the cultural importance of and attention to individualism developed over the past number of centuries in Western European and American societies. Because it is essential for everyday life that people conform to the norms of their communities, behaviors that vary from those norms must be hidden. As a result of sometimes differences or even conflict between the lives of persons in a community and their individual nature and behaviors, all persons have one or more public, private and sometimes secret selves that are different and distinct to a greater or lesser degree. All persons have a past and a future and both are part of the person today. All persons are marked by the ability to love from the greatest to the least degree. All persons have a spiritual life—a transcendent dimension that reaches beyond them. For some this is articulated only in religion. But spirituality is also present in the love of others and the connection to things larger than the person like country and profession. Spirituality is also expressed in relationships. All persons have a body that can do some things but not others. Persons become habituated to the body’s enormous range of capacities and inabilities. These capacities become accepted as part of the person. Things happen to bodies—they can be injured or get sick and are no longer as able as previously, a truth often hidden by feelings of omnipotence. Bodies sometimes bleed, smell bad, make embarrassing sounds, have embarrassing functions, create desires, sometimes look bad, become old and slow, and sometimes ugly. Most persons conceal this from themselves and they are not a part of dailiness. When these phenomena come to awareness they can be a source of embarrassment.


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Relationships of persons to others are guided by enduring rules of behavior and by widely accepted meanings. Their behavior and thoughts in relationships to themselves are also durable and rule guided. Some of this is known to the person but other behavioral codes and thoughts with equal power are unapparent, unknown, and unacknowledged residing out of consciousness. Persons know themselves as authentically themselves by their appearance, the sound of their voice, the beliefs they hold, by their aptitudes, skills, accomplishments, and by their ability to make things, do things, and write things. Although persons know themselves as enduring over long periods of time, to some extent persons re-create themselves every day—what they did yesterday or last week is not sufficient; this has to be confirmed by what they can do today. They are thus partially existential beings—it is today that matters—but so do the past and the future. Children are almost wholly existential—it is what is happening today that matters. Self-regard or vanity is the place where relationships with the body, others, and ones-self interact. Everyone wants to be valued by others and by themselves. Everyone wants to be admired or liked by others and themselves. Everyone wants to be like those they admire. Vanity to a lesser or greater extent is present in all and a part of the relationship of persons to others and to themselves. All persons die and their knowledge of that possibility is a defining characteristic of humans. This knowledge has a widespread effect on persons and their relations to others and themselves. People go to doctors and become patients because they are sick or impaired, believe sickness looms, fear sickness or disability, or wish to prevent sickness or the consequences of impairment. They believe they are sick when they cannot pursue their purposes or goals because of impairments which they believe are in a doctor’s realm. The dominant theory of sickness for the past two centuries has been that when someone is sick it is because of disease or injury. As a consequence, the focus of physicians and patients alike has been on the disease or injury—what it is, what it is doing to the patient’s body and what must be done for it. In the past 50 years, attention has shifted toward the patient—the sick person—but the perceived cause of the illness, the disease, has continued to be the primary interest of medicine. It is a circumstance of history and a consequence of the growth of science that the physical manifestations of sickness are best known, most thoroughly explicated, and most prominent in the thoughts of sick persons and their clinicians. Sickness has an impact on the whole person whether minor illness or life threatening affliction. Sickness is not restricted to the physical derangements of disease, nor does it only include the psychological or social phenomenon that may accompany it. Sickness makes itself known by interference in functioning. Since sickness involves the whole person the impairments of functioning that characterize illness involve all aspects of the human condition—physical, personal, psychological, social, and spiritual. Which impairments will come to the person’s awareness in any instance, be most intrusive or important, follows from the nature of the illness, the particular person, and context (context refers to the social, political, technological, religious, and physical environment that exists outside of us). Because humans are of a piece—whatever happens to or is done to one part affects the whole and whatever affects the whole affects every part. As a consequence, sickness inevitably involves the entire person, every single bit. If the determinant of the illness is personal, psychological, social, or spiritual it follows that there will also necessarily be physical manifestations as well. Pride of place has conventionally been given to physical aspects because those were the source of the development of contemporary knowledge and technology. In any particular instance of sickness, the known bodily dysfunctions considered as a whole are usually considered as the disease. In an instance of sickness giving priority to the disease may not be true to the patient’s experience; if the illness has its source elsewhere that is where attention should ideally concentrate. It is equally important to understand what has happened to the other domains of the patient’s life because this may provide healers with the opportunity to decisively influence the illness. Healing should be directed towards restoring functioning; to helping the patient once again attain the state of wellbeing that comes from the ability to pursue achievable goals and purposes. Sickness is personal and individual. It is related to the characteristics of the sick person and influenced by the particular individual whose sickness it is. It changes patients; it may affect their body, actions, thinking, behaviors, response to others, and to the world around them. These changes may occur without the patient’s awareness. These changes also, in turn, alter the illness; it is a circular process. The actions of healers must also be personal to be true to illness. They are directed toward sick persons, the dysfunctions making them sick, the effects of sickness, and sick persons themselves. As a consequence, healers must learn as much about persons as they do about


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illness itself. Their knowledge should equip them with the skills to understand this particular sick person. When someone is seriously ill, that person’s being includes the illness. Sickness and its manifestations are inextricably bound up with the phenomenon of meaning. Everything that happens to people; objects, events, relationships, every sight and sound, everything that happens in or to the body is given meaning. Meaning has cognitive, physical, emotional, and spiritual aspects. Thus, meanings have an impact on every dimension of persons. Meaning is the medium, the intervening agency, which unites all aspects of sickness and its impairments with the sick person [1]. In other words, people do not act because of events, things, circumstances, or relationships; they act because of their meanings. The importance of the centrality of meaning is that meanings can be changed and with the change in meaning the patient’s reality is changed. In the US, person-centered medicine has come to denote medicine that is focused on the patient’s goals, expectations, and needs as determined by the patient. In the words of the Institute of Medicine of the National Academy of Science, it is a medicine “that is respectful of and responsive to individual patient preferences, needs, and values.” This defines an accommodating and benevolent medicine but it is not the person-centered medicine that arises from consideration of both the nature of persons and of sickness. Consideration of sickness demonstrates that it has an influence on virtually every aspect of persons and vice versa. A medicine of persons seeks the origins of sickness wherever they may lie in the person recognizing that physical phenomenon may be known disproportionally because of the availability of previous knowledge and technology. The goal of intervention is the restoration of functioning in whatever domain it is impaired so that persons may pursue their purposes and goals.

Reference 1. Cassell EJ. The nature of suffering and the goals of medicine. 2nd edition. Oxford: Oxford University Press; 2004.


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Emotions, narratives and empathy in clinical communication Arnstein Finset, Department of Behavioral Science, Institute of Basic Medical Science, University of Oslo, Oslo, Norway Correspondence to: Arnstein Finset, E-mail: [email protected] or [email protected]

Introduction Patients sometimes report that doctors consider them a set of symptoms rather than a person. A recent article by a patient in a major Norwegian newspaper had the title ‘I am not a knee cap’. The author had suffered a knee injury, but felt that he was treated by doctors merely as a knee cap rather than as a human being. This feeling is hardly unique. In a focus group study a few years ago patients with rheumatic diseases reported similar experiences and emphasized the importance of being seen as an individual rather than a disease entity [1]. Moreover, in an empirical test of the Four Habits communication skills training model Krupat et al. found that skills in taking the patient perspective were among those performed most poorly in a sample of primary care physicians [2]. An alternative approach to the focus on symptoms is to communicate with patients on a personal level, with an emphasis on eliciting the patient’s perspective. In the current research on provider patient communication terms, such as person-centered, and more frequently patient centered [3, 4] and relationship centered [5] communication are key concepts. The person-centered approach represents a shift of focus from symptom to person, from disease to illness [6].

The narrative In a person-centered doctor-patient relationship it is important to listen to the patient’s story, the patient’s narrative. The doctor should give the patient an opportunity to tell his/her story, to present a narrative rather than simply respond to closed ended questions. A narrative approach represents a special attitude to clinical interview beyond simply inviting the patient tell his or her story. It implies a particular way of understanding the patient’s story. Perhaps the most important contribution to an understanding of the narrative in medicine is given by Rita Charon in a number of important articles [7, 8]. She makes a distinction between what she calls logico-scientific knowledge and narrative knowledge. The logicoscientific knowledge is characterized by a detached observer, who generates or comprehends replicable and generalizable events, and attempts to illuminate the universally true by transcending the particular. In the construction of narrative knowledge on the other hand a participating observer attempts to understand local and particular single events, and attempts to illuminate the universally true by revealing the particular. Narrative knowledge is what one uses to understand the meaning and significance of stories through cognitive, symbolic, and affective means [7]. What is the impact of a narrative approach? For the patient, narratives may contribute to the healing process. This has most explicitly been studied in the expressive writing tradition by Pennebaker and collaborators. These researchers have for instance found effects of expressive writing in terms of a reduction of rumination and depressive symptoms [9] and positive effects on immune functions in HIV patients [10]. The patient narrative, in and of itself, although rich in information, does not necessarily clarify what are the most important concerns of the patient. The narrative approach requires actively listens for the—sometimes hidden—meaning and significance of the particulars in the patient story.


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Cues and concerns Patients often do not explicitly convey what is most important and most emotionally salient for them in the consultation with a health care provider. Emotional concerns are rather expressed in terms of verbal or non-verbal cues. Cues occur relatively seldom in medical consultations, and they are often missed by the doctor [11]. Recently, cues and concerns have been extensively studied by research groups in the Verona network for Sequence Analysis [12]. In their work a distinction is made between cues (hints to a hidden emotion) and concerns (explicit expression of worries and negative emotions; Zimmermann et al., under review). A group of researchers in Rochester, NY, has conceptualized cues and concerns in a similar way in terms of empathic opportunities [13], as potential empathic opportunities (cues) and more explicit empathic opportunities (concerns). A presentation of their model is given in Figure 1. Our research group has applied the model in a study of consultations in oncology [14]. Our data confirm that important concerns are often communicated indirectly as subtle hints or cues. We also found that cues often are missed by physicians (unpublished data). A person-centered approach would be to show sensitivity to patient cues and facilitate expression of the underlying emotion. Recent research in social neuroscience has indicated that putting feelings into words may actually have a positive effect on affect regulation. In a number of brain imaging experiments verbal labelling of emotion was associated with attenuation of amygdala activation typical of negative affects and was correlated with an increase in the activation of the right prefrontal cortex and the anterior cingulate cortex, indicating that higher centres in the frontal cortex overruled the more primitive affective ones [15, 16]. The findings could indicate that by letting the patient express cues and concerns the doctor helps the patient to regulation of emotional processing in the brain, by a down regulation of negative emotions and a corresponding relief of stress [17]. Thus, a person-centered approach may have positive effects for the patients also on a biological level.

Empathy and healing A key phenomenon in the person-centered response to the narratives and the associated emotions patients is empathy. Empathy may occur both as a product of engaged listening to patient narratives and as responses to empathic opportunities when patients present cues to what is important and emotionally salient. Empathy may be

Figure 1. A model of empathic opportunities in the medical consultation. After Suchman et al., 1997 [13].


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conceptualized in terms of three important elements: the ability to observe emotions in others, the ability to feel those emotions, and finally the ability to respond to those emotions. In a wider sense empathy may be used to denote abilities not limited to emotions, but also to understand other people’s thoughts and intentions in general. Empathy has recently been studied extensively in neurobiological research. Studies indicate that that the brain activation patterns of the observer’s perception of emotions in others (cognitive empathy) and the actual emotional experience of the observer (emotional empathy) may be differentiated. The ability to discern a specific emotion in another person is a special case of the ‘theory of mind’ phenomenon, the ability to attribute mental states to others. In a number of studies, the dorsomedial prefrontal cortex has been found to be crucial for the capability to infer the other person’s cognition, both in terms of thoughts, intentions and emotion [18]. It has been suggested that the emotional aspect of empathy, or the contagion effect, when the observer shares the emotional experience of the observed person, is associated with activity in the mirror neuron system in the brain [19]. Mirror neurons were first described by Giacomo Rizzolatti and his group in Parma, Italy, and refer to neurons that fire when you observe an action, mirroring the neurons that are engaged in the same action in the person who acts [20]. It has been questioned whether mirror neurons are active in empathy, since a role for mirror neurons basically has been found in motor activities [16]. However, in contrast to most laboratory studies, empathy in medical consultations occurs in the context of social interaction with ample non-verbal mirroring. In the medical consultation empathy may be facilitated by mirror neuron activity associated with the face-to-face interpersonal exchange [17]. The potential effects of the health care provider’s empathy in medical consultations as a factor in healing processes have been explored in a number of studies. For instance, Zachariae reported in a large study of oncology patients that higher scores of physician attentiveness and empathy were associated with greater patient satisfaction, increased self-efficacy, and reduced emotional distress following the consultation [21]. Our group found doctor empathy to be related to patient satisfaction in fibromyalgia patients, in particular among those with difficulties in expressing their own emotions [22]. Empathic behaviour has also been linked to increased adherence [23]. We may speculate that empathy may play a role in health promoting social processes, such as social support (See recent review by Adler [24]).

Concluding remarks An important aspect of person-centered communication is the patient narrative, and a doctor attitude of active listening to the meaning and significance of the narrative, including sensitivity to patient cues and concerns. Both in the listening to the narrative and the exploration of cues and concerns the doctor may experience and display empathy, which is anchored in basic neurobiological mechanisms and may play a role in healing processes for the patient. These phenomena should be further explored in future research on the doctor-patient relationship.

References 1. Haugli L, Strand E, Finset A. How do patients with rheumatic disease experience their relationship with their doctors? A qualitative study of experiences of stress and support in the doctor-patient relationship. Patient Education and Counseling 2004 Feb;52(2):169–74. 2. Krupat E, Frankel R, Stein T, Irish J. The Four Habits Coding Scheme: validation of an instrument to assess clinicians’ communication behaviour. Patient Education and Counseling 2006 Jul;62(1):38–45. 3. Mead N, Bower P. Patient-centered consultations and outcomes in primary care: a review of the literature. Patient Education and Counseling 2002 Sep;48(1):51–61. 4. De Haes H. Dilemmas in patient centeredness and shared decision making: a case for vulnerability. Patient Education and Counseling 2006 Sep;62(3):291–8. 5. Beach MC, Inui T. Relationship-centered care. A constructive reframing. Journal of General Internal Medicine 2006 Jan; 21(Suppl 1):S3–8. 6. Mezzich JE. Psychiatry for the person: articulating medicine’s science and humanism. World Psychiatry 2007 Jun; 6(2):65–7. 7. Charon R. The patient-physician relationship. Narrative medicine: a model for empathy, reflection, profession, and trust. JAMA 2001 Oct 17;286(15):1897–902. 8. Charon R. Narrative and medicine. New England Journal of Medicine 2004 Feb 26;350(9):862–4. 9. Gortner EM, Rude SS, Pennebaker JW. Benefits of expressive writing in lowering rumination and depressive symptoms. Behavioral Therapy 2006 Sep;37(3):292–303. Conceptual Explorations on Person-centered Medicine

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10. Petrie KJ, Fontanilla I, Thomas MG, Booth RJ, Pennebaker JW. Effect of written emotional expression on immune function in patients with human immunodeficiency virus infection: a randomized trial. Psychosomatic Medicine 2004 Mar–Apr;66(2):272–5. 11. Zimmermann C, Del Piccolo L, Finset A. Cues and concerns by patients in medical consultations: a literature review. Psychological Bulletin 2007 May;133(3):438–63. Review. 12. Del Piccolo L, Goss C, Zimmermann C. The third meeting of the Verona Network on Sequence Analysis: Finding common grounds in defining patient cues and concerns and the appropriateness of provider responses. Patient Education and Counseling 2005 May;57(2):241–4. 13. Suchman AL, Markakis K, Beckman HB, Frankel RA. A model of empathic communication in the medical interview. JAMA 1997 Feb 26;277(8):678–82. 14. Eide H, Frankel R, Haaversen AC, Vaupel KA, Graugaard PK, Finset A. Listening for feelings: identifying and coding empathic and potential empathic opportunities in medical dialogues. Patient Education and Counseling 2004 Sep;54(3):291–7. 15. Hariri AR, Bookheimer SY, Mazziotta JC. Modulating emotional responses: effects of a neocortical network on the limbic system. Neuroreport 2000 Jan 17;11(1):43–8. 16. Lieberman MD. Social cognitive neuroscience: a review of core processes. Annual Review of Psychology 2007;58:259–89. 17. Finset A, Mjaaland T. The medical consultation viewed as a value chain: a neurobehavioral approach. Patient Education and Counseling 2009 Mar;74(3):323–30. 18. Schulte-Ruther M, Markowitsch HJ, Fink GR, Piefke M. Mirror neuron and theory of mind mechanisms involved in face-toface interactions: a functional magnetic resonance imaging approach to empathy. Journal of Cognitive Neuroscience 2007 Aug;19(8):1354–72. 19. Decety J, Jackson PL. The functional architecture of human empathy. Behavioral and Cognitive Neurosciences Review 2004 Jun;3(2):71–100. Review. 20. Iacoboni M, Molnar-Szakacs I, Gallese V, Buccino G, Mazziotta JC, Rizzolatti G. Grasping the intentions of others with one’s own mirror neuron system. PLoS Biology 2005 Mar;3(3):e79. 21. Zachariae R, Pedersen CG, Jensen AB, Ehrnrooth E, Rossen PB, von der MH. Association of perceived physician communication style with patient satisfaction, distress, cancer-related self-efficacy, and perceived control over the disease. Brittish Journal of Cancer 2003 Mar 10;88(5):658–65. 22. Graugaard PK, Holgersen K, Finset A. Communicating with alexithymic and non-alexithymic patients: an experimental study of the effect of psychosocial communication and empathy on patient satisfaction. Psychotherapy and Psychosomatics 2004 Mar–Apr;73(2):92–100. 23. Kim SS, Koplowiz S, Johnston MV. The effects of physician empathy on patient satisfaction and compliance. Evaluation and the Health Professions 2004 Sep;27(3):237–51. 24. Adler HM. Toward a biopsychosocial understanding of the patient-physician relationship: an emerging dialogue. Journal of General Internal Medicine 2007 Feb;22(2):280–5.


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Culture, religion and health care Kamaldeep Bhui, MD, FRCPsych, Professor of Cultural Psychiatry and Epidemiology, Centre for Psychiatry, Barts and The London School of Medicine and Dentistry, Consultant Psychiatrist, East London NHS Foundation Trust, Director of the Centre for Applied Research and Evaluation International Foundation (Careif) http://www.careif.org Correspondence to: Kamaldeep Bhui, E-mail: [email protected]

Introduction The field of cultural psychiatry explores the link between clinical descriptions of mental distress, biological and physiological manifestations of distress, and social and environmental factors. Cultural psychiatry has expanded its field of interest from clinical psychiatry and treatment of the individual patient to public health and global health and well-being. Cultural psychiatry as a discipline has its origins in medical anthropology and is particularly focussed on exploring the cultural influences on the expression of symptoms, interpretations and explanatory models for symptoms, coping style and responses from family, relationships with carers, mental health professionals and traditional healers. Each of these contributes to thinking about an overall diagnosis, and should take account of spiritual and religious.

Culture and mental health Helman has defined culture as “a set of guidelines which individuals inherit as members of a particular society which tells them how to view the world, experience it emotionally and how to behave in relation to other people, supernatural forces or Gods and to the environment. Culture is transmitted by symbols, language, art and ritual” [1]. Culture, thus defines what is ‘normal’ and ‘abnormal’ and influences the presentation and distribution of mental illness. Culture also influences the way mental illness is recognised and treated by members of the society and sanctions particular healers in a society. Nonetheless, there are limitations to cultural analyses, for example, the more biological the origin of a particular disorder the more likely it is to be invariant in its presentation, albeit idioms of distress may still vary across cultural groups. It is, therefore, ‘common mental disorders’ for which there are substantial cultural variations in explanatory models and treatment expectations. Yet, culture is not a static entity. Cultural identity and beliefs vary over time in response to the cultural beliefs found in society, and for immigrants, the cultural beliefs that are dominant. Acculturation has been defined by as the phenomenon which results when groups or individuals have different cultures and come into first hand contact with subsequent change in the original cultural patterns of either or both groups [2]. In our work with young people in East London we studied the relationship between cultural identity and mental health of adolescents and discovered that this relationship varies by cultural group and also some risk factors are better for some groups than others [3, 4]. Furthermore, the DSM-IV cultural formulation argues for assessing cultural identity as part of the overall assessment of a patient alongside the cultural explanation of the individual’s illness, cultural factors relating to the psychosocial environment and functioning, cultural elements of the relationship between the individual and the clinician and an overall culturally appropriate assessment and diagnoses and treatment plan. In the schema generated by Tseng, in the Handbook of cultural psychiatry [5], the essential elements of a cultural assessment include sensitivity, knowledge, empathy, therapeutic relations and interactions, and treatment guidance. Cultural competence can be operative both at an individual level and also at an organisational level and the values of the organisation and the individual link these domains.


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Although understanding religion and spirituality and health is not embraced by all health professionals as being central to the delivery of mental healthcare, cultural psychiatrists have, for a long time, investigated, explored and harnessed the knowledge of religious communities and leaders in understanding mental distress and improving treatment. They have done this because the exploration of variations in beliefs and expressions of distress and treatments is fundamental to the task of a cultural psychiatrist, especially where patient and professional differ in their cultural or religious orientation.

Religion and mental health McCullough and Larson point out the general positive association between religiosity and a number of physical and mental health outcomes [6]. Some forms of religious coping are associated with better mental health outcomes: a belief in a just benevolent God, experience of a God as a supportive partner in coping, involvement in rituals and a search of support through religion [7]. Pargamant and Kendler both found that a poor quality of relationship with God and religious conflicts are associated with poor and health outcomes and a higher mortality [8, 9]. Some religious behaviours and beliefs are promoted as having protective influences that moderate the impact of adverse inter-personal life events and social adversity, and the use of substances [10, 11].

Spirituality and religion The Cambridge dictionary defines spirituality as the quality of being concerned with deep often religious feelings and beliefs rather than physical aspects of life [12]. Culliford suggests that spiritual aspects of coping with depression include doubt and questioning everything, exhaustion, demoralisation and feeling ground down [13]. Spirituality, therefore, is a common attribute of human existence and one that perhaps is not recognised or embraced by many people. Spirituality may be understood as different from organised religion and religious practice, yet all of these may be used by people to cope with distress, either through changes states of self, and or through ritual and relationships. It is in this context that we undertook a large public health study of six ethnic groups in the UK in the EMPIRIC Study. A qualitative component included 116 people. The subjects described how they coped with mental distress. Their accounts were recorded, transcribed and subjected to framework analysis [14]. The sample included 49 men and 67 women of Black Caribbean, Black African, White British, Irish, Indian, Bangladeshi and of Pakistani origin. The sampling was unclustered, including 25–50 years old. The majority of people were of Muslim origin (40) or Christian (25) with smaller numbers of Sikh, Hindu, Buddhist and Rastafarian people. The detailed methodology and analysis has already been reported [14]. The findings suggest that religious coping was used a great deal by Black Caribbean Christians and Bangladeshi Muslims and that there was quite a distinction in the relationship with God expressed in their conversation. This ranged from a deferential relationship-placing trust in God-being able to endure anything sent from God, to talking to God in a more flexible and instrumental way at times of suffering. This included using prayer, religious radio and amulets. There was also evidence that emotional turmoil was sometimes seen as a sign of not being sufficiently religious and amulets prayer and religious radio could also be used. Religious identities and cultural identities were not separate for all groups, specifically the Muslim group. Or perhaps Muslims in our sample were the most religious and similar findings would be found among very religious people from other faiths. Religious and spiritual rituals were often used to cope with mental distress, even amongst the non-religious, paradoxically. The findings argue that identity and explanatory models should be assessed in mental health care and expectations of treatment and attitudes of treatment and medical interventions should be considered alongside the individual’s religious orientations and existing coping strategies which may have their origins in spiritual beliefs of practices. These may not be expressed in formally organised religion. In order to further understand the relationship between religion and mental health and incorporate this in routine practice clinicians will inevitably encounter the need to consider technical modifications, theoretical modifications and philosophical reorientation of their work [5, 15]. This brief paper sets out some of the reasons why religion and spirituality are important aspects of mental healthcare but the paper did not deal with racism, prejudice or group hatred, religiously, racially or culturally specific services. It did not deal with inequalities of access to service and effective treatment. Nor does it deal with developing effective intervention trials in diverse cultural and religious groups. Nonetheless, the central thesis is that cultural Conceptual Explorations on Person-centered Medicine

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assessment be part of a comprehensive individual personal assessment and treatment plan; assessment should include aspects of spirituality and religious orientation and identity. In some instances, this may require therapists with a particular religious persuasion [15, 16] but otherwise it requires culturally and religiously informed clinicians. Further research is needed on the links between culture and identity and how identity links with faith and spirituality and leads to altered states of self which mediate, moderate or determine varying levels of mental distress. The influence of religious and spiritual beliefs on coping strategies and on attitudes to conventional treatments also warrants further investigation. Pluralistic help seeking is not uncommon [17]. A person-centered psychiatry and person-centered medicine, therefore, does need to accommodate pluralistic notions of mental healthcare, including the influence of religious practice and belief and spirituality in mental health care [18].

References 1. Helman CG. Cultural factors in health and illness. In: McAvoy B, Donaldson L, editors. Health care for Asians. Oxford: Oxford University Press; 1990. p. 17–27. 2. Redfield R, Linton R, Herskovits MJ. Memorandum for the study of acculturation. In: Stocking GWS, editors. American anthropologist. Lincoln Nebraska: University of Nebraska Press; 1936. p. 149–52. 3. Bhui K, Klineberg E, Khatib Y. Ethnicity and mental health. Practitioner 2006;250(1687):45–6, 48, 51. 4. Bhui K, Khatib Y, Viner R, Klineberg E, Clark C, Head J, Stansfeld S. Cultural identity, clothing and common mental disorder: a prospective school-based study of white British and Bangladeshi adolescents. Journal of Epidemiology & Community Health 2008 May;62(5):435–41. 5. Tseng W-S. Handbook of cultural psychiatry. San Diego: Academic Press; 2001. 6. Koenig HG, Larson DB. Religion and mental health: evidence for an association. International Review of Psychiatry 2001;13(2):67–79. 7. Pargament KI, Koenig HG, Tarakeshwar N, Hahn J. Religious struggle as a predictor of mortality among medically ill elderly patients: a 2-year longitudinal study. Archives of Internal Medicine 2001 Aug 13–27;161(15):1881–5. 8. Pargament KI, Koenig HG, Tarakeshwar N, Hahn J. Religious coping methods as predictors of psychological, physical and spiritual outcomes among medically ill elderly patients: a two-year longitudinal study. Health Psychology 2004 Nov;9(6):713–30. 9. O’Reilly D, Rosato M. Religious affiliation and mortality in Northern Ireland: beyond Catholic and Protestant. Social Science & Medicine 2008 Apr;66(7):1637–45. 10. Krause N. Exploring the stress-buffering effects of church-based and secular social support on self-rated health in late life. Journal of Gerontology Series B Psychological Sciences and Social Sciences 2006;61(1):S35–43. 11. Smith AM, Phillips CM, Brown TL. Ethnic identity, religiousness, and drinking among African Americans: what’s the connection? Journal of Euthanasia & Substance Abuse 2008;7(4):465–79. 12. The Cambridge Dictionary Online. Cambridge: Cambridge University Press; [webpage on the internet]. [Accessed January 2010]. Available from: http://dictionary.cambridge.org/define.asp?key=76612&dict=CALD. 13. Culliford L. Spirituality and clinical care. British Medical Journal 2002 Dec 21;325(7378):1434–5. 14. Bhui K, King M, Dein S, O’Connor W. Ethnicity and religious coping with mental distress. Journal of Mental Health 2008;17(2):141–51. 15. Loewenthal K. Religion, Culture and mental health. Cambridge: Cambridge University Press; 2006. 16. Cinnirella M, Loewenthal KM. Religious and ethnic group influences on beliefs about mental illness: a qualitative interview study. British Journal of Medical Psychology 1999 Dec;72(Pt 4):505–24. 17. Rudell K, Bhui K, Priebe S. Concept, development and application of a new mixed method assessment of cultural variations in illness perceptions: Barts explanatory model inventory. Journal of Health Psychology 2009 Mar;14(2):336–47. 18. Koenig H. Religion and mental health: what should psychiatrists do? Psychiatric Bulletin 2008;32:201–3.


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Section on Honoring Paul Tournier

Paul Tournier and ‘Médecine de la Personne’— The man and his vision Hans-Rudolf Pfeifer, Paul Tournier Association, www.paultournier.org, Zurich, Switzerland Correspondence to: Hans-Rudolf Pfeifer, E-mail: [email protected]

Introduction Paul Tournier (1898–1986), physician and writer from Geneva, Switzerland, made an outstanding pioneering contribution to the understanding and practice of an integrative approach of medicine, psychology and pastoral counselling, which had an impact on many professionals and laymen alike in all continents. He was the founder of ‘Médecine de la Personne’ (‘Medicine of the Person’) [1]. His work and his message is best understood against the background of his biography. His attitude and challenge were derived from his own experiences and insights, yet even today seem equally valid for health care systems across the world that are striving to meet the wish of patients and service users for more person-centered and holistic health care.

Early biography Paul Tournier became an orphan after his father, pastor of the Geneva Cathedral, had died shortly after Paul’s birth and his mother had died from breast cancer when Paul was only six years. He described the feeling of painful emptiness and vanishing into nothingness, afraid of being totally insignificant to anybody in the future. He grew up with his aunt and uncle, a businessman. Unable to accept affection, he withdrew into himself and had no friends. He felt he did not really exist (‘Je n’existais pas’) [2]. It was a key experience when at age 16 his greek teacher invited him home regularly. Like never before he felt someone took him seriously and respected his ideas. ‘He introduced me to dialogue and saved me from my loneliness. He gave me the feeling that I existed’ (‘Il m’a fait exister!’) [2]. The transformation was evident. He gained self-confidence to move more into society. He started participating passionately in public discussions. From 1917 to 1923 he studied medicine at the University of Geneva. He became leader of a national student movement. He served with the Red Cross in Vienna, organized fund-raising for Russian children etc. However he stated: “I had found a relationship with society, but on an intellectual level …still hiding my inner loneliness. I could lead discussions in front of thousands of people, but I was unable to enter into a deeper personal relationship” [2]. After completing his studies he was intern in Paris and Geneva. In 1925, he opened his private practice. In 1924, he married Nelly Bouvier in Geneva. Two sons were born: Jean-Louis, 1925 and Gabriel, 1928. Nelly reflected on their early relationship: ‘You are my teacher, my doctor, my psychologist, my pastor, but you are not my husband’ [2]. Paul commented: “… I was too intellectual … giving private lectures to her … but I could not develop true fellowship with her. My escape into intellectualism was my problem. I had found my way on an intellectual basis, but the personal, the affective emotional dimension was still hidden and closed to me”.


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Transforming emotional experience, learning from a patient In 1932, Paul Tournier had a transforming encounter. A difficult patient had unexpectedly improved and seemed no longer selfcentered and aggressive. She told him she had participated in a seminar organized by a lay movement from Oxford. In personal reflection and in small groups they were trying to develop more openness, honesty and transparency. Tournier was then introduced to four outstanding representatives of that movement [2]. He had expected intellectual discussion on principles and results, instead these men were silent for some time, followed by very personal sharing of experiences and failures. Tournier was first disappointed, but also deeply touched. For the first time in his life he shared about his inner suffering as an orphan and cried over his mother and father. ‘It was the second level of becoming more of a person, not just the intellectual reflection of ideas, but rather the emotional encounter from person to person’ [2]. Tournier discovered in the approach of the Oxford Group parallels to the psychotherapeutic process. ‘I opened up to friends about my life, my feelings, my fears, about my shames and my longings. Without being conscious of it, there was everything that constitutes psychotherapy: catharsis, emotional discharge, awareness and transference’ [3]. From then on Paul Tournier spent one hour per day in silence. He would take notes if some impressions crossed his mind. To him it was the beginning of a lifelong journey of inner listening in an attitude of openness that would balance, focus and redirect his outward activities.

General practice and psychotherapy This daily discipline transformed his marriage and family, his relationships to patients and others. Patients started opening up to him like never before. In 1937, he informed officially about his focus on psychosomatics trying to integrate medical and counselling aspects, scientific and faith aspects. In the psychological field he deepened his knowledge and experience in autodidactic ways. Famous Freudian and Jungian Psychoanalysts adviced him to continue unbiased in his particular personal calling to pursue “a synthesis of psychology, classical medicine and even religious belief ”. “So I did not become a psychoanalyst; I opted for the medicine of the whole person, the non-specialized attitude par excellence, which seeks to understand man as a whole” [3].

Tournier as author and conference host In 1940, he published his first book under the programmatic French title ‘Médecine de la Personne’ [4], meaning ‘Medicine of the Whole Person’ or ‘Person-centered Medicine’. Translations followed in German and English. He was surprised by the positive response. In 1947, Tournier invited medical doctors for a retreat near Geneva as ‘Group for the Research on Medicine of the Person’. Annual conferences have since then taken place in different European locations and in USA (see www.medicinedelapersonne.org). Besides lectures and intellectual discussions, Tournier wanted to give opportunities for personal encounters and sharing. Paul Tournier published 20 books, translated into over 20 languages with millions of copies sold, inspiring professionals and laypeople alike. He also wrote articles and gave radio interviews. Tournier had an anecdotal, intimate and often personalized style of writing. All his books touched on existential themes, such as The Whole Person in a Broken World, The Strong and the Weak, A Doctor’s Casebook in the Light of the Bible, The Meaning of Persons, To Resist or to Surrender, Guilt and Grace, etc. Towards his eighties he wrote books, such as Learning to Grow Old, The Gift of Feeling (La Mission de la Femme) and Creative Suffering. He was invited for speaking tours throughout Europe, USA, South Africa, Japan and Iran. Always he stood for his Christian roots, but was very tolerant and open to dialogue with anyone: Atheists, Buddhists or Muslims alike. He was offered professorships but turned them down. In his view ‘Médecine de la Personne’ could not just be taught from the pulpit, but primarily had to be shared by personal example and experience.


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Death of Nelly and Paul Tournier The death of his wife in 1974 was a great loss to him. She had meant so much to him for developing as a person. He remained active and vital until old age. In 1984, he was remarried to Corinne, 50 years old pianist from Geneva. Paul Tournier died age 88 in his home near Geneva. Many people, especially in the medical, psychotherapeutic and psychiatric field, have testified to the impact Paul Tournier had on them through his books, speeches, conferences and his vast correspondence. The basic attitudes and concepts of ‘Médecine de la Personne’ seem very relevant even for contemporary health care. Prof. Viktor Frankl called Tournier “the pioneer of person-centered psychotherapy” [5].

Medicine of the person For Tournier and his colleagues ‘Medicine of the Person’ is an approach to medical care that emphasizes attention being given to the whole person—to the biological, psychological, social and spiritual aspects of health problems. It is about a basic attitude rather than a theoretical concept and a technique only. It refers to the uniqueness and dignity of man, also in his suffering, with his ressources and not just deficits, with all his desires to be accepted, experiencing sincere validation and finding purpose in life. It is based on dialogue and encourages listening to one another, to oneself and to the transcendent dimension. It involves the person of the professional helper being transparent and to disclose oneself to a certain degree. It is not only for psychiatrists and psychotherapists, but for all medical specialties [6]. The French expression of ‘Medicine de la Personne’ probabaly encompasses all aspects that were brought out so clearly by Juan Mezzich, President of the World Psychiatric Associaton (WPA) 2005–2008: a person-centered medicine should be a ‘Medicine of the Person, for the Person, by the Person and with the Person’ [7]. Paul Tournier had the vision of bringing that focus back to all of medicine.

References 1. Pfeifer HR, Cox J. Paul Tournier’s Vision—The man and his message. In: Cox J, Campbell AV, Fulford B, editors. Medicine of the Person: faith, science and values in the health care provision. London and Philadelphia: Jessica Kingsley Publishers; 2007. p. 33–45. 2. Tournier P. A listening ear. Texts selected by Charles Piguet. Caux: Caux Edition; 1984. 3. Tournier P. Creative suffering. London: SCM Press; 1982. 4. Tournier P. Médicine de la personne [Medicine of personality]. Neuchatel, Switzerland: Delachaux et Niestlé; 1940. 5. Frankl VE. Der leidende Mensch. Anthropologische Grundlagen der Psychotherapie [Anthropological principles of psychotherapy]. Bern, Stuttgart, Toronto: Verlag Hans Huber; 1984. [in German]. 6. Harnik B, editor. Paul Tournier’s Medicine of the whole person: 39 essays. Waco, Texas: Word Books Publishers; 1973. 7. Mezzich JE. Science and humanism – A double helix for the future of psychiatry. Cairo: Plenary Lecture, XIII World Congress of Psychiatry; 2005.


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Section on Honoring Paul Tournier

Scientific developments and medicine of the person Bernard Rüedi, Emeritus Professor of Medicine, Neuchâtel University, Neuchâtel, Switzerland Correspondence to: Bernard Rüedi, E-mail: [email protected]

Recent scientific developments and the medical applications they have engendered, as well as the resulting expectations on the part of the patients and caregivers have shed a drastically modified light on medicine, its goals, the role of doctors and the nature of the relationships entered into and maintained with patients. Curing and preventing the diseases are still the main priorities of medicine, but extending the biological life, enhancing the human capacities, interfacing man and machine, modifying the genome appear to be today objective and realistic goals also, which are susceptible to improve the therapeutic results. Then, the question raised is: are the present goals of medicine still what they should be or should we identify new ones? But, how is the person of the patient perceived in the present medicine? The increasingly slicing up of the patient into systems, organs, receptors and malfunctioning genes tends to favor an analytical approach of the pathologies of the ‘sick individual’, at the cost of seeing him (or her) as a ‘person who is suffering’, that is to say, one who is affected by his illness in both body and mind. The title of the book written by Paul Tournier in 1955, ‘The Meaning of Persons’ [1], is the English translation of ‘La Personne et le Personnage’. The French word ‘personnage’ comes from ‘persona’ in Greek, which is the mask of the actor, and the word ‘personne’ means all what is expressed by the personnage, which comes out through his mask. Then, the concept of the person includes also all what is expressed by an individual, a human specimen. The real danger pointed by Paul Tournier is still today to reduce ‘a suffering person’ to ‘a sick individual’. The individual can be described as a static object, but the person is a constantly evolving reality, appearing in all his or her dimensions only when encountered by another person. Today, the technical developments and the economical restraints focus the attention of politicians and caregivers to what they call ‘health systems’, reducing doctors to their functions, and patients to their pathologies. What is the patient expecting, from the physician? What is its representation in the mind of a suffering person? In ‘The strengh for healing’ [‘La force de guérir’] [2, p. 71] E. Zafirian says that “the social and individual representation of the doctor comes from the earliest ages; he must be together a chaman, a sorcer, a healer, a wise man and a confident”. It is also what C.-G. Jung evoked, when speaking of the ‘archetypal image of the physician’, issued from the collective unconscious, and which has generated the image of a healing person in the psyche of the man, since the beginning of humanity. Being outstanding or stupid, the physician has to be aware of this projection, of its utility, but also its dangers. But what kind of identity will our faculty of medicine offer to their students today? The medical training has been insidiously replaced by the teaching of medical knowledge, constantly changing and increasing in number. Of course, it is often recalled that the patient has to remain in the center of the process, but what is taken in account to graduate is first the acquisition of intellectual knowledge and of technical performance. The consequence is that in the student’s mind the patient may become a specimen to cure, instead of a person to heal. It is not the promise of the so-called personalized medicine that will avoid the trend to reduce the person to a specimen, since in fact it is individualized therapy, which allows the replacement of statistically efficient treatments Conceptual Explorations on Person-centered Medicine

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for a group of pathologies by specifically effective treatments for a given patient. It will be a definite therapeutic improvement of the therapeutic acts, but this type of medicine scarcely takes into account the therapeutic relationship itself. In ‘The strength for healing’, E. Zafirian emphasizes the true therapeutic power of the physician himself and of the patient’s circle, namely family, friends, nurses, etc.: “When using identical techniques, the relationship can or cannot be fully therapeutic. In order to have a relationship there must be an interaction of two subjectivities. We could say in other words, there must be a meeting of two desires: curing and healing” [2, p. 125]. If the physician does not look at the evolution of health care system, he will become the medical technician expected by health economists, easily managed to get best cost effectiveness ratios, that is to say the less expensive ones, and supposed to offer by this way the best quality of care for the patients. Indeed, politicians, economists and insurance companies claim they have to reduce the increasing cost of health, but they are concerned only, or at least in first priority, with the cost of the treatments of the diseases and not by the people health. What should they do if they were really firstly concerned with health? The WHO definition of health is ‘A full physical, psychological and social state of well being’, which means that a healthy man should feel comfortable with his body, his mind and his environment, with also the mention that health is not equivalent to the absence of disease. In English we say: ‘How are you?’ and in French: ‘Comment allez-vous’, which can be translated into ‘How are you going?’ And the answer is: ‘Je me porte bien’, which means ‘I am carrying myself well’, not ‘one carries me well’! According to these expressions, promoting health would mean ‘to promote the conditions which will allow the patient to carry himself to go forward in his life’. To be healthy means ‘to be able to walk toward a goal, when taking upon oneself’. Some people believe they have a good health, as any good which might allow them to get and to act, and other people feel they are in good health, living an enriching relationship with their environment, even when they may have some biological dysfunction. To take care of the patient during a personalized relationship, helping him to discover his strength for healing and for carrying himself in the direction of a goal, that is medicine of the whole person. And now, a new challenge will be raised by the new technologies, a challenge for the humans who hope to remain so! The present developments of biotechnologies are often unperceived by many people today, but it will raise weighty questions concerning the identity of caregivers and patients, and also the role of medicine itself. Up to now medicine was mainly concerned with the correction of biological dysfunctions and defects, but now it will be able to modify human organisms and to enhance the capacities of normal subjects. Enhancement of the physical strength and of the memory, addition of new sensitive perceptions, extension of the biological life by ageing suppression, replacement of deficient organs by the grafting of new ones generated from stem cells, discovering new virtual life experiences, re-writing the genomic code and including additional bases to it, creating chimeric or new organisms, developing humanoid robots capable of learning behaviors and actions by themselves, to learn how to learn, even reacting to gratification or frustration; and finally downloading on a hard disk all the information of the brain, are no longer belonging to fiction science, but already projects on course of realization. Are we changing the person or the individual by increasing his memory capacity, by adding new perceptions, by increasing the emotional threshold? Who will take care of an intelligent robot, suffering from frustrations? The engineer or the physician? The development of biotechnologies will not only provoke questions concerning the identity of caregivers and patients, but also the role of medicine itself. Today, it is already our individual and collective responsibility to anticipate the risks and possible drift toward a growing depersonalization of medicine. To summarize: it is becoming increasingly difficult to practice a medicine of the whole person today, due to the pressure to offer the best technical attention through an efficient therapeutic relationship. The inflation of the theoretical knowledge monopolizes the caregiver’s attention, focusing it on an increasing number of sophisticated dysfunctions they must be able to recognize and cure. They risk identifying the patient firstly


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as a group of malfunctioning organs, and they lack of time and training to engage themselves in a true therapeutic relationship. The development of biotechnologies confers to the physician new tasks deviating from his previous ones, that is to say restoring, protecting and promoting health, and he will have to be attentive not to become an accomplice of such pressures.

References 1. Tournier P. The meaning of persons. London: SCM Press; 1957. (Translated from the French by Edwin Hudson). 2. Zafirian E. La force de guérir [The strengh to heal]. Paris: Ed. Odile Jacob; 1999. [in French].


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Section on Person-centered Health Domains

Suffering Tom Sensky, BSc, PhD, MBBS, FRCPsych, Professor of Psychological Medicine, Imperial College London, UK Correspondence to: Tom Sensky, E-mail: [email protected]

Suffering—background Clinicians commonly see the alleviation of their patients’ suffering as one of the principal aims of their clinical work. Public health specialists adopt a similar view. For example, the World Health Organisation website includes >10,000 references to ‘suffering’. Crucially, the alleviation of suffering is not the same as alleviation of symptoms. Some interventions may alleviate symptoms while at the same time exacerbating suffering. An added complication is that, as a term, ‘suffering’ has come to be used imprecisely, and hence also potentially devalued. Thus, we talk of ‘suffering from intense pain’ or ‘suffering from a terminal illness’, but also ‘suffering a cold’ or even ‘suffering a hangover’. This is perhaps one reason why clinicians tend not to ask their patients directly about their suffering. However, there are at least three other important reasons why suffering is not mentioned as often as it deserves to be in clinical encounters. First, it is traditionally been considered very difficult to quantify suffering and, in the absence of reliable metric, clinicians perhaps consider that they cannot elicit reliable information from their patients about the patients’ suffering. Secondly, clinicians may consider that by relying on an empathic approach to their patients, they can gauge the extent of a patient’s suffering. Finally, as will be argued below, suffering is an intensely personal and private experience, and hence enquiring about it might elicit a complex and detailed response for which there is insufficient time available in the clinical encounter, since any individual’s suffering needs to be understood in the context of his or her Personhood.

Conceptualisation of suffering Cassell [1] described suffering as a state of severe distress associated with events that threaten the intactness of the person and stated that suffering occurs when an impending destruction of the person is perceived; it continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner. A key feature of suffering is that it is a property of the whole person—suffering is not a phenomenon that can be reduced to part of the person. This is a key distinction between suffering and pain. Pain is a common cause of suffering (although there are many others). However, while we may complain that we experience pain in the head or the arm, it is only the whole person who suffers. Suffering is a feature of Personhood [2]1, and hence also of the person-centered approach to health care. This is analogous to the difference between generic measures of health-related quality of life, like the SF-36, and person-specific measures, like the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) [3]. Measures like the SEIQoL focus on those aspects of life most valued by the individual, while generic measures assess features of quality of life likely to be widely shared. In fact, generic quality of life measures are open to wide variation in personal interpretation [4], as are commonly used measures of pain [5], but this is regarded simply as part of the overall variance of such measures, rather than being important in discriminating individual responses.

1See

the Chapter by Cassell in this volume for a discussion of Personhood.


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Because suffering has such a diversity of meanings, clinicians commonly expect these meanings to be reflected in the way the term is used by patients. However, in the context of illness and health, there is evidence that lay people are remarkably consistent in how they understand and use the term. In a qualitative study of people with systemic lupus erythematosus [6], perceived causes of suffering included physical factors due to the illness, constraints in things of high personal value, loss of autonomy, worried about the future, factors in the social environment, and unwanted or unacceptable changes to daily life due to the illness. All of these are features of Personhood. As one person observed: “Illness is like an unexpected thief that attacks one’s life and destroy is one’s life expectations. With illness, goals in life fade away and you are convinced that you won’t be able to achieve the old goals. One has to painfully reconstruct one’s expectations and which goals are important, as energy is lacking to achieve them”. This fits well with Cassell’s conceptualisation of Personhood [2], as do the published results of other researchers [7].

Measurement and correlates of suffering In collaboration with Prof. Stefan Büchi and colleagues at the University of Zürich, we have developed novel and simple visual method of quantifying suffering, using an instrument called the Pictorial Representation of Illness and Self Measure (PRISM). Evidence has been published of the validity and reliability of PRISM [8, 9]. Consistent with suffering being an intensely personal experience, our measure of suffering has, among people with arthritis, shown much stronger correlations with factors likely to influence a personal construct (such as pain, depression, and sense of coherence) than with ‘objective’ disease variables, such as the SF-36, and disease status. More recent work, as yet unpublished, has indicated that patients who report having been able to make sense of their illness experience showed lower levels of suffering than those who have not been able to make sense of the illness experience. This is consistent not only with Cassell’s model but also with Frankl’s well-known view that suffering ceases to be suffering when it takes on meaning [10]. In a study of parents whose children had been born prematurely but then died shortly after birth, suffering correlated (as predicted) with the intensity of the parents’ grief, but also showed a significant negative correlation with a measure of post-traumatic growth.

Managing suffering Understanding suffering as a threat to an individual’s Personhood also serves to guide clinicians in how to work with their patients to alleviate their suffering. The threat to Personhood can be reduced by removing it (by curing the patient of the illness), by helping the person reappraise the threat to his/her Personhood, or even by reappraising the key features of Personhood itself. Assuming that (as in chronic illnesses in general) complete and effective cure is not possible, people can redefine their Personhood by telling and retelling personal narratives [11]. Therefore, simply giving someone who is suffering the opportunity to review his or her personal narrative has the potential to alleviate suffering. Beyond this, psychological interventions, which can be aided by PRISM [12], can contribute substantially [13].

Future directions The finding that patients are very consistent in their understanding of suffering should encourage clinicians to focus more specifically on the suffering of their patients, and on how it may be alleviated. Further work is needed to better understand factors likely to moderate suffering, such as spirituality, personal growth and finding meaning. The PRISM measure has shown itself to be very useful in clinical practice as well as research. The challenge remains to develop a practicable way of assessing and managing suffering in everyday clinical practice.

References 1. Cassell EJ. The nature of suffering and the goals of medicine. New England Journal of Medicine 1982 Mar 18;306(11): 639–45. 2. Cassell EJ. The nature of suffering and the goals of medicine. 2nd edition. Oxford: Oxford University Press; 2004. 3. Waldron D, O’Boyle CA, Kearney M, Moriarty M, Carney D. Quality-of-life measurement in advanced cancer: assessing the individual. Journal of Clinical Oncology 1999 Nov;17(11):3603–11. 4. Mallinson S. Listening to respondents: a qualitative assessment of the Short-Form 36 Health Status Questionnaire. Social Science & Medicine 2002 Jan;54(1):11–21.


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5. Williams ACC, Davies HT, Chadury Y. Simple pain rating scales hide complex idiosyncratic meanings. Pain 2000 Apr;85(3): 457–63. 6. Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Büchi S. Suffering and posttraumatic growth in women with systemic lupus erythematosus (SLE)—a qualitative-quantitative case study. Psychosomatics 2009 Jul–Aug;50(4):362–74. 7. Kassardjian CD, Gardner-Nix J, Dupak K, Barbati J, Lam-McCullock J. Validating PRISM (Pictorial Representation of Illness and Self Measure) as a measure of suffering in chronic non-cancer pain patients. The Journal of Pain 2008 Dec;9(12):1135– 43. 8. Büchi S, Sensky T, Sharpe L, Timberlake N. Graphic representation of illness: a novel method of measuring patients’ perceptions of the impact of illness. Psychotherapy and Psychosomatics 1998 Jul–Oct;67(4–5):222–5. 9. Büchi S, Buddeberg C, Klaghofer R, Russi EW, Brandli O, Schlosser C, et al. Preliminary validation of PRISM (Pictorial Representation of Illness and Self Measure)—a brief method to assess suffering. Psychotherapy and Psychosomatics 2002 Nov–Dec;71(6):333–41. 10. Frankl VE. Man’s search for meaning: an introduction to Logotherapy. New York: Pocket Books; 1984. 11. Frank AW. The wounded storyteller. Chicago: University of Chicago Press; 1995. 12. Büchi S, Sensky T. PRISM: Pictorial Representation of Illness and Self Measure. A brief nonverbal measure of illness impact and therapeutic aid in psychosomatic medicine. Psychosomatics 1999 Jul–Aug;40(4):314–20. 13. Guthrie E, Sensky T. Psychological interventions in patients with physical symptoms. In: Guthrie E, Lloyd G, editors. Textbook of Liaison Psychiatry. Cambridge: Cambridge University Press; 2007.


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Defining disability, functioning, autonomy and dependency in person-centered medicine and integrated care Luis Salvador-Carulla, MD, PhD, Professor of Psychiatry, University of Cadiz, Head Section Psychiatry of Intellectual Disability World Psychiatric Association, Cadiz, Spain Vladimir I. Gasca, MD, Assistant Professor of Psychiatry, Mount Sinai School of Medicine at Elmhurst Hospital Center, New York, USA Correspondence to: Luis Salvador-Carulla, E-mail: [email protected]

Introduction According to the integrative or holistic approach to health, medicine should not only be focused in disease and illness, but also on the consequences of disease and its contextual factors, as well as the positive aspects of health, such as adaptive functioning, protective factors, quality of life and the links of all these domains to care policy and planning [1]. Functioning and disability (D&F) are two related domains of a single health construct key to understand the relationship between the individual and the disease, where social support plays an effect modifier role [2]. Therefore, D&F is regarded as a key domain in the recent models of diagnosis (i.e. person-centered medicine) [3] and intervention (i.e. Integrated Care as a complex adaptive system) [4] within the holistic paradigm. Despite the radical evolution of the area of disability since the 1950s, this concept is still regarded as ‘elusive’ in medicine [5] and there is a lack of international consensus on the definition of related concepts, such as functioning, autonomy or dependency. The complex relationship between the constructs of disability/functioning and autonomy/ dependency has not been properly addressed by current international glossaries and classification systems; in spite of their relevant for care policy and planning. As a mater of fact, the construct ‘Disability and Functioning’ (D&F) has been used with two different meanings in the health sector. These meanings correspond to separate models which use different approaches and tools to evaluate D&F. In this review, we describe the evolution and current concepts of D&F and other related terms, such as autonomy and dependency.

The ‘Activities of Daily Living’ approach to disability The ‘Activities of Daily Living’ (ADL) model was originated in the US right after World War II to measure functioning in cancer patients and in physical rehabilitation [6]. In essence, ADLs are elementary tasks that allow getting around with minimum autonomy and independence, including any daily activity we perform for self-care, work, homemaking, and leisure. In the 1960s Katz et al. [7] and Lawton and Brody [8] distinguished two major groups of ADL: ‘basic’ activities related to self-care, such as bathing, dressing, eating, voluntary control of sphincters, grooming and walking; and ‘instrumental’ activities, such as light housework, preparing meals. taking medications, shopping for groceries or clothes, using the telephone and managing money. This model was used to develop the Katz ADL index [9] and the Barthel index [10], which is still a standard rating scale to measure disability in geriatrics and other medical disciplines as well as the standard comparator to assess the psychometrics of related instruments [11]. In spite of its inconsistencies, the distinction between BADL and IADL


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is still deeply grounded in the medical assessment of disability [12]. Whilst this approach may provide accurate assessment in a number of physical conditions, its content validity is unclear in complex illnesses where the social context play a significant role and where symptoms may directly produce a significant impairment of the daily functioning which is not mediated through ADLs (i.e. suicidal thoughts or non-adherence related to lack of insight which require intensive surveillance by family carers). Hence, the disability related to complex health conditions, such as severe mental illness, intellectual disability, autism, or early stages of dementia may not be adequately assessed using ADLs, as high social support may be needed even when there is hardly any impairment in ‘basic’ daily life activities. The concept of ‘dependency’ derived from the ADL model in the early 1990s and it has provided an international framework for evaluation and care to frail population across the lifespan. In 1998, the European Council made a recommendation to EU member states to develop care for dependent population (persons with severe disability and need of support from a third person) based on the ADL approach. It defined ‘dependency’ as a condition related to the loss of autonomy and the need of support by a third person related to an impairment of activities of daily living, specially self-care, linking ‘autonomy’ and ‘dependency’ to a single construct. The analysis and monitoring of the dependent population in Europe was started [13] and Spain and other European member states which had not yet developed a care system for dependent population enacted a dependency law and planned a dependency care system. However, international comparability and the assessment criteria showed problems for a broad group of dependent population which include severe mental illness and other complex conditions. As a consequence, the Spanish Parliament approved a recommendation to adapt the official assessment procedure and tool based on ADLs to the model developed by the International Classification of Functioning last March 26th, 2009.

The WHO ‘environmental’ approach to ‘functional disability’ This approach is based on a broader concept of functioning. It originated at the WHO International Classification of Impairments, Disabilities and Handicaps (ICIDH) in 1980, which gave forward to the current International Classification of Functioning, Disability and Health (ICF) [14]. ICIDH shifted the relationship of health and functioning from the consequences of a disease or condition to the result of complex interactions among the individual, the environment and the disease or condition. The new ICF was designed taking into consideration this biopsychosocial/ integrative approach [15]. This system is comprised of three main components: body functions and structures, activities and participation, and contextual factors (environmental and personal factors).

The concept of ‘environment’ and ‘environmental factors’ in the ICF model The ‘environmental factors’ make up the physical, social and attitudinal environment in which people live and conduct their lives. They are external to persons and can have a positive or negative influence on the individual’s performance. These factors are organized in the classification to focus on two different levels: (a) Individual—physical and material features of the environment that an individual comes face to face with in his immediate environment, including settings, such as home, workplace and school, as well as direct contact with others, such as family, acquaintances, peers and strangers. (b) Societal—formal and informal social structures, services and overarching approaches or systems in the community or society that have an impact on individuals (organizations and services related to the work environment, community activities, government agencies, communication and transportation services, and informal social networks).

The concept of ‘personal factors’ in the ICF model At the ICF model “personal factors are the particular background of an individual’s life and living” [14]. They comprise features of the individual that are not part of a health condition, such as social and demographic factors (gender, race, age, education, profession) and individual psychological characteristics, such as lifestyle, habits, upbringing, coping styles, overall behaviour pattern and character style. Hence, the individual functioning is influenced by personal contextual factors that are different from the environmental factors and that have not been classified at the current version of the ICF due to problems in their standard categorisation.


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In ICF ‘functioning’ is defined as a “generic term which includes body functions and structures, activities and participation. It indicates the positive aspects of the interaction between the individual (with a health condition) and its context factors (personal and environmental factors)” whilst ‘disability’ serves as an umbrella term for impairments, activity limitations or participation restrictions [14]. Here, disability is linked to global functioning in ICF while in the ADL model it is associated to impairment in a reduced set of activities. D&F may be initially regarded as an unidimensional bipolar construct with a positive pole (functioning) and a negative one (disability) at ICF. However, there is a clear asymmetry between the two poles, as positive functioning involves many more alternatives than negative functioning. On the other hand, the analysis of the hierchical structure and the conceptual relationship between the terms ‘functioning’ and ‘disability’ at the WHO family of classifications and related documents indicate that ‘disability’ is actually a subcategory of ‘functioning’, as ‘disease’ is a subcategory of ‘health condition’, and ‘quality of life’ is a subcategory of ‘well-being’ [14]. The current definition of ‘functioning’ at ICF should restricted to ‘positive functioning’ in future editions of the classification. In any case the ICF provides a comprehensive conceptual background which is linked to the WHO family of classifications and related WHO documents. This enables the further development of key concepts, operational definitions and related assessment instruments. As an example, the definitions of ‘functioning’ and ‘disability’ were not operationalised at the ICF and several research groups have provided operational alternatives using the ICF framework. The MHADIE (Measuring Health and Disability in Europe) group has defined ‘disability’ as a difficulty in functioning at the body, person, or societal levels, in one or more life domains, as experienced by an individual with a health condition in interaction with contextual factors’ [5]. Following the logic of WHO terminology, the DEFDEP (Definition of Dependency in Mental Illness) consensus group defined “health-related environmental functioning” as “the capacity of an individual to live independently in the community with little or no help from others”; while ‘health-related disability’ may be defined as “a persistent impairment of environmental functioning” [16]. In 2006, the DEFDEP group was commissioned by the Catalan Agency of Dependency (PRODEP) to develop an ICF-based operational definition of ‘functional dependency’ in mental illness as an alternative to the official ADL-based definition used by the Spanish social care system. To begin with, the concept of ‘dependency’ used at the European Council recommendation is not at ICF or at the WHO glossaries [17, 18]. The word ‘autonomy’ has completely different meaning at the WHO glossaries and at the 1998 European Council recommendation. WHO defines ‘autonomy’ as “the perceived capacity to control, cope and take personal decisions on how a person lives his/her daily life, following his own norms and preferences” [18]. This definition of ‘personal autonomy’ is equivalent to self-direction, competence and self-empowerment, but it could not be included in the same construct than ‘dependency’. In spite of these problems, the ICF model can effectively provide an operational definition of dependency. ‘Independence’ is defined as the “ability to perform an activity with no or little help from others, including having control over any assistance required rather than the physical capacity to do everything oneself” [18]. This WHO concept was used by the DEFDEP group to produce a consensus definition of ‘environmental functional dependency’. It was defined as “a state derived from a permanent or long-term health condition which limits and restricts daily life to the extent that the person needs support from another person or special aids to reach minimal functions of daily living” [16].

Discussion The concept of health is dynamic, complex and closely linked to functioning. Many environmental and personal factors influence health and functioning. To date, there has been very little debate on the differences between the ADL and the ICF approaches to health-related functioning and disability; given their consequences in the assessment and care policy and planning for complex conditions, such as severe mental illnesses. Health-related disabilities may be conceptualised by two different systems: ADL disability (based on ADL approach) and functional or contextual disability (based on the WHO approach). Functional disability may be further divided into ‘environmental disability’ and ‘personal disability’, although only functional environmental disability is classified and coded at the ICF. The conceptual background of the WHO-ICF approach has a broader perspective and it allows a better description of the functional impairment related to complex disorders, as well as new definitions of related concepts relevant for coare policy and planning, such as care ‘dependency’. Within this context ‘functional environmental dependency’ may be regarded as a transversal domain related to the interaction between disability, needs and support. This domain may not be linked to the WHO concept of ‘personal autonomy’ but to the WHO concept of ‘independence’ which in turn could be regarded as a synonym of function-related environmental autonomy.


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In order to fully incorporate D&F into person-centered medicine and integrated care it is necessary to provide operational definitions of these terms and other closely related concepts, such as autonomy and dependency. The person-centered approach provides a clean framework that could be linked to ICF as it differentiates the domain disability (ill-being) and functioning (well-being) from a series of ICF-personal factors which may be incorporated into other domains of this model (risks/protective factors or experience of illness and health). In any case, the ontology of the domains provided by the person-centered model and the ICF model deserve further analysis. As an example, the term ‘person’ in the person-centered model is equivalent to the term ‘individual’ at the ICF. The ICF ‘personal factors’ (as said not yet defined) are dealt with in other domains of the person-centered model, where ‘person’ is an holistic concept whereas at the ICF it is limited to the psychological characteristics within a biopsychosocial approach. Therefore, a ‘health-related environmental functioning’ and a ‘health-related environmental disability’ should be assessed in the person-centered model which incorporates ability and fulfilment and other personal characteristics in other domains.

Acknowledgements This review has been partly funded by PRODEP Agency (Programme of Dependency of the Government of Catalonia) (Spain) and the IMSERSO I+D+i grant 2006/79.

References 1. Singer B, Ryff C. New horizons in health: an integrative approach. Washington, D.C.: National Academy Press; 2001. 2. Prince M, Patel V, Saxena S, Maj M, Maselko J, Phillips MR, Rahman A. No health without mental health. Lancet 2007 Sep 8;370(9590):859–77. 3. Mezzich JE. Psychiatry for the person: articulating medicine’s science and humanism. World Psychiatry 2007 Jun; 6(2):65–7. 4. Edgren L. The meaning of integrated care: a systems approach. International Journal of Integrated Care [serial online] 2008 Oct 23;8. Available from: http://www.ijic.org/. 5. Leonardi M, Bickenbach J, Ustun TB, Kostanjsek N, Chatterji S, MHADIE Consortium. The definition of disability: what is in a name? Lancet 2006 Oct 7;368(9543):1219–21. 6. Karnofsky DA, Burchenal JH. The clinical evaluation of chemotherapeutic agents. In: MacLeod CM, editors. Evaluation of chemotherapeutic agents. New York: Columbia University Press; 1949. p. 196. 7. Katz S, Ford A, Moskowitz RW, Jackson BA, Jaffe MW. Studies of illness in the aged. The index of ADL: a standardized measure of biological and psycholosocial function. Journal of the American Medical Association 1963;185(12):914–919. 8. Lawton MP, Brody EM. The functional assessment in rehabilitation of elderly people: self maintaining and instrumental activities of daily living. Gerontologist 1969;9:179–86. 9. Katz S. Assessing self-maintenance: activities of daily living, mobility, and instrumental activities of daily living. Journal of the American Geriatric Society 1983 Dec;31(12):721–7. 10. Barthel DW, Mahoney FI. Functional evaluation: the Barthel index. Maryland State Medical Journal 1965;14:61–5. 11. Dijkstra A, Tiesinga LJ, Plantinga L, Veltman G, Dassen TWN. Diagnostic accuracy of the care dependency scale. Journal of Advanced Nursing 2005 May;50(4):410–6. 12. Freedman VA, Martin LG, Schoeni RF, Cornman JC. Declines in late-life disability: the role of early- and mid-life factors. Social Science and Medicine 2008 Apr;66(7):1588–602. 13. European Commission. Feasibility study—comparable statistics in the area of care of dependent adults in the European Union. Luxembourg: Office for Official Publications of the European Communities; 2003. 14. World Health Organisation. International Classification of Functioning, Disability and Health (CIF). Geneva: WHO; 2001. 15. Stucki C, Cieza A. The International Classification of Functioning, Disability and Health (ICF). Core sets for rheumatoid arthritis: a way to specify functioning. Annals of the Rheumatic Diseases 2004 Nov;63(Suppl 2):ii40–ii45. 16. Salvador-Carulla L, editor. Estudi DEFDEP: Definició operativa de dependència en persones amb discapacitat psíquica [DEFDEP Study: Operational definition of dependency in persons with psychological disability]. Programa ProdeP de la Generalitat de Catalunya, 2006. [cited 2009 April 14]. Available from: http://www.gencat.cat/. 17. World Health Organisation. Division of Health Promotion, Education and Communications (HPR) (WHO/HPR/HEP/98.1). Health promotion glossary. Geneva: WHO; 1998. 18. World Health Organisation. A glossary of terms for community health care and services for older persons. Kobe (Japan): WHO; 2004. [cited 2009 April 14]. Available from: http://whqlibdoc.who.int/wkc/2004/WHO_WKC_Tech.Ser._04.2.pdf (Technical Report Vol. 5 WHO Centre for Health Development Ageing and Health. WHO/WKC/Tech.Ser./04.2).


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The positive health domain in person-centered integrative diagnosis C. Robert Cloninger, Washington University, St. Louis, USA Correspondence to: Robert Cloninger, E-mail: [email protected]

Person-centered integrative diagnosis is concerned with the assessment of the whole individual in a way that facilitates their recovery of mental and physical health. The recovery of mental and physical health involves more than just the reduction of symptoms and harm. Positive health involves the promotion of a satisfying quality of life, resilience despite stress, and recovery of positive emotionality. Positive health is a state of physical, material, emotional, social, ecological, and spiritual well-being. Well-being can be defined in four major ways that identify essentially the same individuals: presence of positive emotions and absence of negative emotions, mature character traits, quality of life, and virtuous conduct [1]. In other words, feeling good requires doing good as an expression of a mature and integrated organization of personality. Physical and mental ill-health is strongly associated with socioeconomic inequality, social disconnectedness, and early childhood stress [2]. In turn, these social conditions impair the development of the character traits of selfdirectedness, cooperativeness, and self-transcendence, which are needed for positive emotionality and subjective well-being [1]. In contrast, the development of these character traits involves learning to let go of struggles and fighting, to work in the service of others, and to enjoy growing in awareness [1]. Medical specialists often overlook the back that physical and mental disorders increase in populations and in individuals at the same time when there is social inequality, social disconnectedness, or early childhood stress: the common forms of physical disability, such as cardiovascular disease, increase at the same time as the common forms of mental disability, such as depression and alcoholism [2]. Most medical complaints involve acute stress reactions or chronic disorders influenced by lifestyle choices [3, 4]. The absence of positive emotions is more predictive of physical morbidity and mortality than the presence of negative emotions [5]. As a result, collaboration is needed between general physicians and psychiatrists in person-centered assessment and treatment. Such collaboration is needed to reduce the costly burden of disease by reducing the person’s vulnerability to disease and increasing the resilience to stress. For example, most physicians assume that the major antecedents of coronary artery disease are somatic risk factors like LDL cholesterol, blood pressure, and insulin resistance. However, a 27-year prospective study of young Finns has now shown that the temperament dimensions of novelty seeking, harm avoidance, and reward dependence are more powerful predictors of atherosclerosis than any of the somatic risk factors [6]. These temperament traits were measured by the full temperament and character inventory, but the influence of character on risk has yet to be evaluated [7]. Effective person-centered treatment requires recognition of the strengths and weaknesses of patients in order to empower their commitment to a more adaptive, satisfying, and healthy lifestyle [8]. Positive health (i.e. well-being) is the result of letting go of struggles (i.e. acceptance, hope), working in the service of others (i.e. kindness, humanitarian service), and growing in self-awareness (i.e. mindfulness, humble spirituality). In contrast, mental ill-health is the result of physical trauma and neglect (e.g. war, disaster, malnutrition, physical illness), mental trauma and neglect (e.g. verbal abuse, poverty, poor education, social deprivation), and/or spiritual trauma and neglect (e.g. brain-washing cults and cultures, religious persecution, anti-spiritual repression of spiritual aspirations). However, positive health is not influenced by such trauma, neglect, or deprivation, so the determinants of positive health


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are not the opposite of the determinants of ill-health. As the WHO has long emphasized, health is more than the absence of disease, and positive emotions are more than the absence of negative emotions [1]. The positive health domain is an essential part of assessment along with evaluation of the therapeutic alliance and outcome assessment in person-centered integrative diagnosis. Carl Roger’s person-centered therapy is an example of a person-centered approach to psychotherapy [9]. It can be updated to incorporate more recent advances in positive psychology, mindfulness training, and cognitive behavioral approaches. Given the recognition that physical health is also an essential aspect of the expression of personality, person-centered psychotherapy can also be expanded to a more holistic approach that addresses all the aspects of person-centered medicine, as described in the work of Paul Tournier [10] and the work of Juan Mezzich and his colleagues in the World Psychiatric Association Task Force on Person-centered Integrative Diagnosis [11, 12]. The WPA’s focus on the positive health of the whole person helps to eliminate the false and stigmatizing dichotomy between physical and mental health. Without a realistic understanding of the interplay of physical and mental issues in most medical problems, physicians can only treat symptoms and not their causes. Without a reduction in stigma, patients avoid treatment and lose hope. As a result, psychological medicine must recognize the key role of the positive health domain in order to promote well-being and health effectively.

References 1. Cloninger CR. Feeling good: the science of well being. New York: Oxford University Press; 2004. 2. Wilkinson RG. Impact of inequality: how to make sick societies healthier. New York: New Press; 2006. 3. Sigvardsson S, Bohman M, von Knorring AL, Cloninger CR. Symptom patterns and causes of somatization in men. Genetic Epidemiology 1986;3(3):153–69. 4. Cloninger CR, Sigvardsson S, von Knorring AL, Bohman M. An adoption study of somatoform disorders: II. Identification of two discrete somatoform disorders. Archives of General Psychiatry 1984 Sep;41(9):863–71. 5. Huppert FA, Whittington JE. Evidence for the independence of positive and negative well-being: implications for quality of life assessment. British Journal of Health Psychology 2003 Feb;8(Pt 1):107–22. 6. Hintsanen M, Keltikangas-Jaervinen L. Cloninger’s temperament traits and preclinical atherosclerosis: the Cardiovascular Risk in Young Finns Study. Journal of Psychosomatic Research 2009 Jul;67(1):77–84. 7. Cloninger CR, Svrakic DM, Przybeck TR. A psychobiological model of temperament and character. Archives of General Psychiatry 1993 Dec;50(12):975–90. 8. Cloninger CR. The science of well-being: an integrated approach to mental health and its disorders. World Psychiatry 2006 Jun;5(2):71–6. 9. Rogers CR. A way of being. Boston: Houghton Mifflin; 1980. 10. Tournier P. The best of Paul Tournier. New York: Iverson-Norman Associates; 1977. 11. Mezzich JE. Positive health: conceptual place, dimensions and implications. Psychopathology 2005 Jul–Aug;38(4):177–9. 12. Mezzich JE, Salloum IM. Clinical complexity and person-centered integrative diagnosis. World Psychiatry 2008 Feb; 7(1):1–2.


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Section on Person-centered Clinical Care

Person-centered diagnosis Ihsan M. Salloum, University of Miami Miller School of Medicine, Miami, Florida, USA Juan E. Mezzich, International Center for Mental Health and Division of Psychiatric Epidemiology, Mount Sinai School of Medicine, New York University, USA Correspondence to: Ihsan M. Salloum, E-mail: [email protected] or Juan E. Mezzich, E-mail: [email protected]

Introduction Holistic concepts of health are rooted in ancient medical traditions with recent emergence of multiple perspectives from around the world for the need to pay greater attention to the totality of the person seeking care, the integration of health and social services, and to aspire towards personalized approach to care [1–8]. The person-centered integrative diagnosis model (PID) is the key diagnostic project of the Psychiatry for the Person Institutional Program of the World Psychiatric Association (WPA General Assembly, 2005) which proposes the whole person in context, as the center and goal of clinical care and public health [9]. The PID is the operational articulation of the psychiatry for the person diagnostic principles with the goal of developing a model applicable into regular clinical care settings [10]. Despite the repeated calls for the centeredness of the person seeking care and for the importance of a holistic approach to care, the effective application of these principles to regular clinical care has been hampered by the lack of adequate diagnostic models that can embodies these principles, yet be flexible, adaptable, and useful to the diverse clinical realities and needs. For example, the full implementation of the multiaxial diagnostic models into clinical practice has been limited due to their complexity and to the perceived lack of immediate utility of some of their domains [11]. Furthermore, these multi-axial models lack explicit attention to positive aspects of health deemed key in the recovery and health restoration process. This manuscript presents key concepts, evolving multilevel domains of health status, structure and design of the person-centered diagnostic model (PID).

Key concepts for person-centered integrative diagnosis (PID) The 20th century Spanish philosopher and humanist, Ortega y Gasset (1883–1955), dictum “I am I and my circumstance” cogently captures the overarching concept embodied in the person-centered integrative diagnosis and the psychiatry for the person’s vision of considering “the whole person in context”, as the centre and goal of clinical care and public health. The key concept in the person-centered integrative diagnosis is its consideration of a broader and deeper notion of diagnosis (to include positive and ill aspects of health), which goes beyond the restricted concept of nosological diagnoses. The notion of diagnosis as a formulation of health status, and as a process involving the interactive participation and engagement of clinicians, patients, and families, represents a paradigm shift. Diagnosis has a fundamental role in medicine as the basic unit in the process of medical care. It is essential for communication among health professionals and other stakeholders, it is fundamental for the process of clinical care and the identification and treatment of disorders, it is used for prevention and health promotion, for conducting research, testing interventions and understanding disease mechanisms. Diagnosis is needed for education and training and for a host of administrative purposes from quality improvement to reimbursement activities. The pivotal role of diagnosis in the clinicians’ work was cogently expressed by Feinstein (Feinstein, 1967) [12] as “Diagnostic Conceptual Explorations on Person-centered Medicine

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categories provide the locations where clinicians store the observations of clinical experience” and “The diagnostic taxonomy establishes the patterns, according to which clinicians observe, think, remember and act.” It should also be recognized that diagnosis has had mixed role for patients. While for some diagnosis provide understanding and empowerment, for others diagnosis has been associated with illness adjudication, with a sense of suffering, loss, and damaged self. Diagnosis, especially in psychiatry, has also been associated with value judgments, labeling and stigma. A broader perspective on the meaning of diagnosis may also be gleaned from its etymological roots. Diagnosis has been derived from two connotations. On the one hand, diagnosis is derived from the Greek word ‘dia’, which refers to elucidating a disorder, a meaning that is more consonant with the common etiopathogenic meaning of diagnosis. The other term, also from the Greek language is ‘diagignoskein’ which refers to the understanding of the person, reflecting the meaning of health (sanscrit hal) as wholeness. This latter definition is particularly suitable for chronic diseases, such as diabetes, HTN, or obesity, where behavioral components can assume significant role. This latter understanding of the term diagnosis is also Reflecting on the meaning of diagnoses in medicine, the medical historian Lain-Entralgo stated that, “diagnoses is more than identifying disorders (nosological diagnoses)”, or “distinguishing one disorder from another (differential diagnoses); diagnoses is really understanding what is going on in the mind and body of the person who present for care” [13]. A broader understanding of diagnosis that goes beyond the ethiopathogenic understanding, has been reflected in ancient traditional medicine as well as in modern understanding of health. For example, in the ancient Chinese medicine, diagnostic indicators were always viewed holistically. The Indian medical tradition, Ayurveda, which means the science of living, views health as harmony between body, mind and spirit. Pointedly, in modern times, the World Health Organization Constitution defines health as “Health is a state of complete physical, emotional, and social well-being, and not merely the absence of disease” (WHO, 1946) [14]. The concept of diagnosis in the PID is to provide broader understanding of the person’s health status, describing both positive and ill health (disorders and disabilities as classified by the International Classification of Diseases and its national and regional adaptations), and to also include an innovative focus on positive aspects of health, such as adaptive functioning, protective factors, and quality of life, deemed crucial for enhancing recovery and health restoration. A second key concept of the PID is its emphasis on an inclusive and participatory process, highlighting the importance of all protagonists of the clinical encounter into the diagnostic process. Diagnostic formulation in the PID is also considered as an ongoing process constructed through interactive partnership involving a dialogue between the primary stakeholders and evaluators. This partnership of equals includes the clinician (the conventional expert), the patient (the protagonist, informationally and ethically), the family (crucial support group), and community members (teachers, social workers, etc.) Thus, the PID, through this process upholds the dignity, values, and aspirations of the person seeking care.

The multilevel person-centered integrative diagnosis model The development and structure of the proposed PID model is anchored in the well established record of the World Psychiatric Association’s experience in the development of diagnostic models and contributions to the central issue of international diagnoses in psychiatry [15–18]. The current organizational schema of the developing multilevel PID model proposes to assess the health status of the person presenting for care, as opposed to a predominant focus on pathology. Thus, the two broad domains covered are ill health and positive aspects of health. In each of these domains, the PID schema provides for a standardized component and for a narrative, idiographic personalized component. The integration of these domains and components aims at forming the informational bases for intervention and care, such as developing treatment plans to guide recovery and health restoration, in addition to providing the informational bases for education, public health planning and for administrative functions. The evolving PID model has currently three main levels within each health status domain (Ill health versus positive health status domains) [19–21]. Within the ill health status domain, the first level is ill health and its burden. This is further divided into two sublevels: the first sublevel corresponds to clinical disorders, both mental and general health. The second sublevel corresponds to disabilities (regarding self-care, occupational functioning, functioning with family and participation in community activities). The second ill health domain level corresponds to the idiographic personalized narrative covering the experience of illness. This includes topics, such as sufferings, values


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ILL HEALTH

POSITIVE HEALTH

I. Health Status Illness & its burden a . Disorders b. Disabilities II. Experience of Health Status Experience of illness (e.g. suffering, values, perception, understanding and meaning of illness) III. Contributors to Health

Wellness Remission/Recovery Functioning

Contributors to ill health

Contributors to positive health

Experience of health (e.g. identity, contentment, & fulfillment)

Figure 1. Schema of the person-centered integrative diagnosis domains.

and cultural experience of illness and care. The third level within the ill health domain covers risk factors and contributors to ill health. These include inner risk factors, such as genetic vulnerability and external risk factors, such as stressors. Factors in this domain may also be conceptualized using a bio-psycho-social framework. Wellness is the first level of the positive health status domain. This is further divided into two sublevels: the first sublevel corresponds to remission/recovery (health restoration and growth), while the second sublevel corresponds to functioning. The second level of positive health domain corresponds to the idiographic personalized narrative covering the experience of health. This includes topics, such as quality of life, values and cultural formulation of identity and context. The third level in the positive health status domain covers protective factors and contributors to positive health. These may include inner protective factors, such as resilience, and external protective factors, such as social support. These factors may also be conceptualized in a bio-psycho-social framework (Figure 1). The PID will avail of all relevant descriptive tools, including categorical, dimensional, and narrative approaches. These approaches will allow for capturing quantitative and categorical assignments above a certain threshold level and the use of narrative would offer the possibility of a deeper and richer personalized description of a relevant domain. Within the PID, the evaluators’ role has been elaborated as ‘Trialogs’ among patients, families and health professionals [8] who would jointly undertake the diagnostic process and formulate planned interventions.

Conclusion The person-centered integrative diagnosis (PID) is the diagnostic model endeavored through the psychiatry for the person program, a major World Psychiatric Association (WPA) initiative. The person-centered integrative diagnosis (PID) is a novel model of conceptualizing the process and formulation of clinical diagnosis. It proposes to implement into regular clinical practice the principles and vision of person-centered psychiatry proposing the whole person in context, as the center and goal of clinical care and public health. The PID entails a broader and deeper notion of diagnosis, beyond the restricted concept of nosological diagnoses. It involves a multilevel formulation of health status (both ill and positive aspects of health) through interactive participation and engagement of clinicians, patients, and families using all relevant descriptive tools (categorization, dimensions, and narratives). The development of the PID model has been a reiterative process with continuing refinements. The fully developed and validated model is intended to be used in diverse settings across the world and to serve multiple needs in clinical care, education, research, and public health.

References 1. Herrman H, Saxena S, Moodie R. Promoting mental health: concepts, emerging evidence, practice. Geneva: WHO; 2005. 2. World Health Organization. WHO’s new global strategies for mental health. Geneva: WHO; 1999. (Factsheet 217). 3. U.S. Presidential Commission on Mental Health. Achieving the promise: transforming mental health care in America. Final Report. Rockville, Maryland: Department of Health and Human Services; 2003. (DHHS Pub N: SMA-03-3832). 4. World Health Organization European Ministerial Conference on Mental Health. Mental health action plan for Europe: facing the challenges, building solutions . Helsinki, Finland, 12–15 January 2005. (EUR/04/5047810/7). 5. Patwardhan B, Warude D, Pushpangadan P, Bhatt N. Ayurveda and traditional Chinese medicine: a comparative overview. Evidence-based Complementary and Alternative Medicine 2005;2:465–73.


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6. Christodoulou GN, editor. Psychosomatic medicine. New York: Plenum Press; 1987. 7. Anthony W. Recovery from mental illness. The guiding vision of the mental health service systems in the 1990s. Psychosocial Rehabilitation Journal 1993;16:11–23. 8. Amering M, Schmolke M. Recovery – Das Ende der Unheilbarkeit Recovery – the end of incurability. Bonn: PsychiatrieVerlag; 2007. 9. Mezzich JE. Psychiatry for the person: articulating medicine’s science and humanism. World Psychiatry 2007 Jun;6(2): 65–7. 10. Mezzich JE, Salloum IM. Towards a person-centered integrative diagnosis. In: Salloum IM, Mezzich JE, editors. Psychiatric diagnosis: context and prospects. Oxford: Wiley-Blackwell; 2009. Chapter 30. 11. Banzato EM, Jorge MR, Kastrup M. Multiaxial schemas for psychiatric diagnosis. In: Salloum IM, Mezzich JE, editors. Psychiatric diagnosis: context and prospects. Oxford: Wiley-Blackwell; 2009. Chapter 28. 12. Feinstein AR. Clinical judgment. Huntington, NY: Robert E. Krieger; 1967. 13. Laın-Entralgo P. El Diagnostico Medico: Historia y Teoria [Medical diagnostics: history and theory]. Barcelona: Salvat; 1982. [in Spanish]. 14. World Health Organization. WHO constitution. Geneva: WHO; 1946. 15. Mezzich JE, Ustun TB. International classification and diagnosis: critical experience and future directions. Proceedings of a symposium. London, United Kingdom, July 2001. Psychopathology 2002 Mar–Jun;35(2–3):59–201. 16. Banzato CEM, Mezzich JE, Berganza CE, editors. Philosophical and methodological foundations of psychiatric diagnosis. Psychopathology 2005 Jul–Aug;38(4): Special Issue. 17. World Psychiatric Association. Essentials of the World Psychiatric Association’s International Guidelines for Diagnostic Assessment (IGDA). British Journal of Psychiatry 2003;182(Supp. 45):s37–s66. 18. APAL. Guia Latinoamericana de Diagnostico Psiquiatrico (GLADP) [Latin American Guide of Psychiatric Diagnosis]. Mexico: Editorial de la Universidad de Guadalajara; 2004. [in Spanish]. 19. Cloninger CR. Feeling good: the science of well-being. New York: Oxford University Press; 2004. 20. Cox J, Campbell A, Fulford KWM. Medicine of the person. London: Kingsley Publishers; 2007. 21. Mezzich JE. Positive health: conceptual place, dimensions and implications. Psychopathology 2005 Jul–Aug;38(4):177–9.


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Person-centered child and adolescent psychiatric care Michel Botbol, Prof., Child and Adolescent Psychiatrist, Consultant on Juvenile Justice, French Ministry of Justice, President, WPA French Member Societies Association, Co-Chair of the WPA Section on Psychoanalysis in Psychiatry Correspondence to: Michel Botbol, E-mail: [email protected]

Introduction This paper presents a person-centered perspective to child and adolescent psychiatric care first through an examination of the particular specificities of diagnosis in child and adolescent psychiatry and then through a review of the importance of empathy to approach subjectivity in clinical care. As such, this discussion highlights some key issues for person-centered care in psychiatry and medicine at large.

Diagnostic specificities in child and adolescent psychiatry Many child and adolescent psychiatrists consider that diagnosis and classification of psychiatric disorders should attend more effectively to specificities pertinent to children and adolescents. Not attending to these specificities, may substantially distort the understanding and formulation of child and adolescent psychiatric disorders, rendering them a caricature of what is usually presented in a disorder-centered adult psychiatry. The specificities usually considered in traditional classifications of child and adolescent psychiatric disorders are quite limited. It is often the case that only a small number of specific diagnostic categories are considered, that there is a notable lack of differentiation in dealing with personality conditions, and that there conspicuous inadequacy to reflect the fullness of many real clinical situations. The specificities that many child and adolescent psychiatrists consider crucial to attend to can be discussed from at least four relevant perspectives: 1) Symptomatic; 2) Developmental; 3) Environmental; and 4) Prognostic.

Symptomatic specificities There are specific limitations in the type of externalized manifestations as well as in the possibility to have insightdependent symptoms in childhood and adolescence. More frequently than in adult psychiatry, a specific set of behavioural descriptive symptoms may be related in child psychiatry to quite different underlying psychopathological organizations. Thus, at this age, consideration given to dynamic defence mechanisms and structural organisations underlying the behavioural symptoms leads frequently to profound modifications in diagnostic evaluation and in therapeutic planning. This perspective can lead, for example, to consider some obsessive compulsive disorder (OCD) patients much closer to Schizophrenic or Narcissistic patients than it is to those suffering from other anxiety disorders. Although this perspective may not generally call for a change in pharmacological prescription, the rest of the treatment strategy, so important at this age, may be more adapted to the patient’s particular needs when taking into account the underlying psychopathological organisation rather than only the OCD symptoms. In some cases, this may lead to a therapeutic program much closer to what may be considered for a Schizophrenic patient [1] than to the one usually offered to other anxiety disorder patients.


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Conversely, a particular psychopathological constellation may have very different symptomatic expressions. Depression in adolescence, for instance, can be expressed in very different ways, including acting-out and psychotic symptoms. For many authors [2], this also should be taken into account for pharmacological prescription.

Developmental specificities Developmental considerations are of more importance in child and adolescent psychiatry than they are for adults. They are crucial to differentiate pathological symptoms and developmental conflicts, to appreciate developmental breakdowns, regressions or fixations, to recognize disharmonies on the different developmental lines, and finally to adapt therapeutic responses. Taking into account this developmental dimension allowed a team of French child psychiatrists to describe nearly 30 years ago a clinical condition within a French classification of child and adolescent mental disorders [3] under the name of ‘Psychotic Disharmony’. This disorder appeared to be similar to what Donald Cohen proposed 15 years later under the name of Multiplex Developmental Disorders to differentiate them from other Pervasive Developmental Disorders (PDD) No otherwise specified (NOS) [4].

Environmental specificities There is obviously in childhood a specific dependency upon current and past environmental conditions. It is also the case that relational aspects have a bigger impact on the expression of mental disorders at this age. There is therefore, in child and adolescent psychiatry a greater risk that a number of diagnostic labels might be nothing more than a psychiatric reformulation of social impairment (e.g. the conduct disorders category could merely be a psychiatric formulation of delinquency); diagnostic labelling may thus not bring any added value to a social construct. Conversely, psychopathological disorders may be ignored or denied when covered by hyper adaptation to local or global social norms, even when this hyper adaptation is mainly a way to deal with underlying psychological distress (as shown in some stabilized high functioning Pervasive Developmental Disorder or in some childhood undiagnosed OCD) that may be hidden to the child or adolescent himself . It may be observed also in behavioural disorders fitting well social definitions and social responses in specific circumstances. For instance, learning difficulties in schools or delinquency in educational or judicial settings may not be seen as symptoms of psychological distress unless specifically addressed from a psychopathological perspective. Social norms are thus one of the main determinants of diagnostic labelling in childhood. In every day practice, there is a great risk in child and adolescent psychiatry that the choice between a social or a psychiatric definition of a disorder, and the assistance it will generate, would not be based as much on the disorder characteristics as it is on its social context and on the type of interaction between the child and his environment. There is then in child and adolescent psychiatry a specific need to avoid diagnostic processes strictly limited to individual approaches as much as those focusing only on the adaptation to the environment. Child psychiatry requires diagnostic processes that take into account the subjective aspects resulting from the interaction of individual and environmental dimensions. In other words, there is at this age a specific need for diagnosis to consider psychological functioning and not to limit itself to the description of social symptoms. This approach constitutes a useful basis for multi-focal approaches often needed to deal with psychopathological and social expressions at this age.

Prognostic specificities Prognosis has a specific value in child and adolescent psychiatry, where the main concern is not only the current status of the disorder but its continuity into adulthood. From this viewpoint, data show in adolescence the lack or reliability of many diagnostic categories taken alone and a significant increase in reliability when personality categories are added [5] even if they are not supposed to be used at this age. From this perspective too, child and adolescent psychiatry shows a particular need to take into account the underlying psychological functioning of the individual patient, and not to rely solely on descriptions of externalised symptomatic expressions on which current classifications usually base their categorical definitions. Taken as a whole, most of the specific needs of child and adolescent psychiatry are not addressed by current classifications and diagnostic systems; however, the main issue is not their lack of specific categories but the diagnostic process they adopt that do not take into account what seems crucial in child and adolescent mental disorders classification: an overall evaluation of the mental functioning of the child and not only a description of his/her symptoms. Conceptual Explorations on Person-centered Medicine

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To a smaller extent, this difficulty is also found in adult psychiatry, but it has more drastic consequences in child and adolescent psychiatry where it can ruin the reliability of data and their usefulness for therapeutic practices. For instance, big differences of prevalence of Attention-Deficit Hyperactivity Disorder (ADHD) in different parts of the world cannot be explained only as cultural or biological variations but rather as resulting from variations in the social use of psychiatric nosography [6]. In a disorder-centered perspective, child and adolescent psychiatry is rendered a caricature of what is observed in adult psychiatry. It increases the inadequacy of disorder-centered diagnostic approaches, not only because, as in adult psychiatry, it ignores the subjective dimension, but because it does not take into account the multiple specificities of psychiatry at this age. It also increases the inadequacy of disorder-centered therapeutic perspectives because, as in adult psychiatry, this point of view favours a pharmaceutical approach, and tends to ignore specific concerns about this type of treatment for children.

From description to empathy for a person-centered approach Child and adolescent psychiatry perspectives are confronting us with the need to take into account the person of the child and not only his symptoms. To address these issues, classifications and diagnostic processes require conceptual improvements, such as: a) Better integration of individual, relational and environmental dimensions; b) Stronger references to the developmental dimensions and longitudinal aspects of disorders; and c) Greater attention to psychological functioning and defence mechanisms to define personality patterns and the processes leading to symptoms. In other words, these conceptual advances should give attention to the child’s subjectivity, his inner dimension, as well as to his context (social and developmental) and the way it affects the child objectively and subjectively. They should attend to complexity better in classification systems to render them closer to the clinical situations we face in child and adolescent psychiatry. To approach these subjective dimensions in the child more attention should be given to the subjectivity of the psychiatrist, even when accepting that objectivity is needed to maintain references to a universal nosographic frame. But this encompassing approach is required to recognize the psychological distress underlying common social expressions or to deal with challenging clinical situations, such as those of infants and dysfunctional adolescents. In these situations the sole observation of the symptoms connected to a disorder-centered perspective is clearly insufficient. Something else is required to go behind the screen of the visible, and this is usually called empathy (the capacity to recognize and understand another’s state of mind or emotion). In the clinical context, empathy should be a holistic way to approach subjectivity [7]. The therapist empathy is triggered by the attention he gives to the patient’s subjectivity through the multiple channels he can use and among them, not only a close observation of the patient’s behavior but also by attending to the patient’s and his family’s narratives. The inclusion of narrative formulations in person-centered integrative diagnosis, a component of a psychiatry for the person [8], is an important step forward to be incorporated in child psychiatry. Triggered by these multichannel inputs, the therapist’s representations and affects can then be used to understand the patient mental health in its multiple dimensions. Here again it is important to access the therapist’s representations and affect and to explicitly include this process in a person-centered diagnosis to rendered it more that just a mere intimate feeling. The therapist’s metaphorization (the way he transforms his intimate feelings into a meaningful story) is a potent way for him to approach his empathy and to reflect it into a narrative [9]. Metaphorizing empathy [10] may be then the best way to access the empathy of the therapist and both his and the patient’s subjective dimensions. Metaphorizing empathy can then be seen as the royal path to the subjectivity and the complexity of children and adolescents beyond what is visible, and even beyond words. Person-centered diagnosis should, therefore, also encompass the therapist’ narrative and idiographic formulation. The above concepts, which are of paramount importance in child and adolescent psychiatry, should also apply to adult psychiatry. Leaders of the European Federation of Associations of Families of People with Mental Illness strongly advocated at the Paris Conference on psychiatry for the person [11] that psychiatrists should extend themselves as full human beings to bridge the gap between professionals and users of mental health services.


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References 1. Nechmad A, Ratzoni G, Poyurovsky M, Meged S, Avidan G, Fuchs C, et al. Obsessive compulsive disorder in adolescent schizophrenia patients. American Journal of Psychiatry 2003 May;160(5):1002–4. 2. Jeammet PH. Les prémices de la schizophrénie [The premices of schizofrenia]. In: De Clercq M, Peuskens J. editors. Les troubles schizophréniques. Bruxelles: De Boeck Université; 2000. [in French]. 3. Mises R, Quemada N, Botbol M, Burzsteijn C, Garrabe J, Golse B, et al. French classification for child and adolescent mental disorders. Psychopathology 2002 Mar–Jun;35(2–3):176–80. 4. Tordjman S, Ferrari P, Golse B, et al. Dysharmonie psychotique et multiplex developmental disorder: histoire d’une convergence [Disharmonic psychotic and multiplex developmental disorder: history of a convergence]. Psychiatrie de l’enfant 1997;2:473–504. [in French]. 5. Johnson JG, Cohen P, Skodol AE, Oldham JM, Kasen S, Brook JS. Personality disorders in adolescence and risk for major mental disorders and suicidality during adulthood. Archives of General Psychiatry 1999 Sep;56(9):805–11. 6. Diller L. Coca Cola, Mac Donald’s et Ritaline® [Coca Cola, Mac Donald’s and Ritaline®]. Enfance et Psychologie 2001;14:137–41. [in French]. 7. Berger DM. Clinical empathy. Northvale: Jason Aronson, Inc; 1987. 8. Mezzich JE. Psychiatry for the person: articulating medicine’s science and humanism. World Psychiatry 2007 Jun; 6(2):65–7. 9. Ricoeur P. Time and narrative. Chicago: University of Chicago Press; 1984. (Original tile: Temps et récit, 3 vols. translated by Kathleen McLaughlin and David Pellauer). 10. Lebovici S. Le bébé, le psychanalyste et la métaphore [The baby, the psycho analist and the metaphore]. Paris: Ed. Odile Jacob; 2002. [in French]. 11. Filliol S. EUFAMI perspectives. Paper presented at the Paris Conference on Psychiatry for the Person, February 6–8, 2008.


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Person-centered clinical practice Evelyn van Weel-Baumgarten, MD, PhD, Radboud University Medical Centre Nijmegen, The Netherlands Correspondence to: Evelyn van Weel-Baumgarten, E-mail: [email protected]

Background In clinical care consultations are often doctor-centered. Patients are not seen as persons, but as cases or diagnoses. Doctors focus on symptoms and lack attention for context. The doctor does most of the talking and takes decisions on diagnosis and treatment, without shared responsibility and decision-making, and without a therapeutic alliance thus contributing to low compliance. And when meeting resistance persuasion and professional status are used [1]. In many cases better outcomes can be achieved with person-centered approaches.

Patient/person-centeredness In patient-centered consultations there is more attention for context, taking into account social and psychological as well as biomedical factors. The patient is seen as a person and there is emphasis on a dialogue with that person. Engels biopsychosocial model is still used frequently to clarify various dimensions of the persons’ context, and it is also used in medical education for this purpose [2]. Lack of time and knowing what is best for patients are reasons frequently mentioned for being doctor-centered. Undeniably, patients usually present more than one problem in consultations in every-day (general) practice and the problem with the highest priority gets attention first. In trying to address as much as possible, psychological and social aspects are likely to get too little attention. To win time, physicians tend to interrupt patients fairly quickly and focus on their own agenda fearing that a patients’ monologue will go on for too long [3]. Inhibiting behavior actually makes patients voice their perspective and concerns more often and is inefficient [4].

Life style Life style related risk factors contribute negatively to outcomes of many chronic illnesses and avoidable deaths [5]. Physicians advising patients to change their lifestyle are disappointed so few take the advice seriously. But behavior changes are difficult to achieve. With only giving advise steps are skipped. One of the many theories underpinning (effective) life-style interventions is the ‘Stages of Change’ (Trans Theoretical) [6]. Five stages are identified: precontemplation, contemplation, preparation, action, and maintenance. Moving too quickly and trying to persuade a patient to change behavior too early, in fact impedes change. Motivational interviewing is an effective directive, person-centered counseling style to help individuals move through the stages, based on the theory that motivation is a state of readiness for change, fluctuating over time [7, 8]. When someone is motivated to make a change, intentions can be converted into actions and changes can be made. Actions planned by physicians, are not as successful as actions planned by the individuals themselves. In ‘Actionplanning’, a collaborative process, the person/patient chooses the goals, clinician and patient negotiate a specific plan. Changes can sometimes be achieved quickly and some patients even convert directly from the pre-contemplative to the action stage [9].


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Solution focused and problem solving strategies can also be used to plan actions [10, 11]. Problem solving is used with success as brief psychological treatment but also in various management programs for chronic illnesses, for instance in diabetes care [12–14]. Key point is empowerment, helping a person to (re)exert control over practical problems and increase confidence about the own ability to solve problems. An unhealthy behavior can be seen as a problem, which needs to be solved. The physician guides the person through the process but the person finds the solutions and solves the problem. A sequence of the above-mentioned effective person-centered techniques is practical for every-day clinical practice.

Treatment Studies from a broad range of clinical contexts demonstrate better outcomes of person-centered care in clinical practice [15]. A systematic review on pain for instance, concluded that the quality of the interaction between physician and patient could be extremely influential on pain outcomes and lead to more relief of pain [16].

Bad news Studies in oncology and various other specialties showed that most patients receiving bad news preferred a patient to a doctor-centered style when discussing diagnosis, treatment and prognosis [17]. Most people prefer full disclosure, but not all. With a person-centered style, knowing that not all patients want to know everything, the information can be adjusted to the individuals’ preferences and cultural context [18]. Medically Unexplained Symptoms and depression In Medically Unexplained Symptoms (MUS) difficulties in the doctor—patient relationship arise because doctors are the one to choose the direction [19–21]. These patients value GPs who provide convincing, legitimating and empowering explanations for their symptoms, but their concerns are less likely to be explored than in patients presenting explained symptoms, and reassurance is provided without a symptom explanation [22–24]. Recent research pointed out that GPs typically disregard patients’ psychological cues and assert a somatic agenda and help maintain or even cause the problem of MUS [15]. Another example from mental health refers to ‘the doctor knowing what is best for patients’. Even when doctors in theory know better than patients what the ‘diagnosis’ is and what the options for treatment are, they are no expert on every persons’ life and context. Van Os, looked at guideline concordant treatment for depression. GP’s were most effective when they used the guideline together with empathetic person-centered communication. Using guidelines in a dry technical way was less effective, even though the treatment was protocollaritily correct [25].

Conclusion There are many examples in favor of a person-centered approach but physicians often have not been trained in patient-centered communication. Fortunately in modern medical education patient-centered communication is considered important and so is teaching of additional patient-centered techniques in residency programs and continuous medical education. Hopefully this will impact positively on the health of many in the future.

References 1. Kottke TE, Battista RN, DeFriese GH, Brekke ML. Attributes of successful smoking cessation interventions in medical practice. A meta-analysis of 39 controlled trials. JAMA 1988 May 20;259(19):2883–9. 2. Borell F, Suchman, Epstein R. The biopsychosocial model 25 years later: principles, practice, and scientific inquiry. Annals of Family Medicine 2004 Nov–Dec;2(6):576–82. 3. Rabinowitz I, Luzatti R, Tamir A, Reis S. Length of patient’s monologue, rate and completion, and relation to other components of clinical encounter: observational intervention study in primary care. BMJ 2004 Feb 28;328(7438):501–2. 4. Zandbelt L, Smets E, Oort F, Godfried M, Haes H de. Patient participation in the medical specialist encounter: does physicians’ patient-centered communication matter? Patient Education and Counseling 2007 Mar;65(3):396–406. 5. van der Wilk EA, Jansen J. Lifestyle-related risks: are trends in Europe converging? Public Health 2005 Jan;119(1):55–66.


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6. Prochaska A, DiClemente CC. Transtheoretical therapy: toward a more integrative model of change. Psychotherapy: Theory, Research and Practice 19(3):276–288. 7. Miller JH, Moyers T. Motivational interviewing in substance abuse: applications for occupational medicine. Occupational Medicine 2002 Jan–Mar;17(1):51–65. iv. 8. Britt E, Hudson SM, Blampied NM. Motivational interviewing in health settings: a review. Patient Education and Counseling 2004 May;53(2):147–55. 9. Handley M, MacGregor K, Schillinger D, Sharifi C, Wong S, Bodenheimer T. Using action plans to help primary care patients adopt healthy behaviors: a descriptive study. Journal of the American Board of Family Medicine 2006 May–Jun;19(3): 224–31. 10. Gingerich WJ, Eisengart S. Solution-focused brief therapy: a review of the outcome research. Family process 2000 Winter;39(4):477–98. 11. Mynors WL. Problem-solving treatment: evidence for effectiveness and feasibility in primary care. International Journal of Psychiatry in Medicine 1996;26(3):249–62. 12. Heuts PH, de Bie R, Drietelaar M, Aretz K, Hopman-Rock M, Bastiaenen CH, et al. Self-management in osteoarthritis of hip or knee: a randomized clinical trial in a primary healthcare setting. Journal of Rheumatology 2005 Mar;32(3):543–9. 13. Hout JH van den, Vlaeyen JW, Heuts PH, Zijlema JH, Wijnen JA. Secondary prevention of work-related disability in nonspecific low back pain: does problem-solving therapy help? A randomized clinical trial. Clinical Journal of Pain 2003 Mar–Apr;19(2):87–96. 14. Didjurgeit U, Kruse J, Schmitz N, Stuckenschneider P, Sawicki PT. A time-limited, problem-orientated psychotherapeutic intervention in Type 1 diabetic patients with complications: a randomized controlled trial. Diabetic Medicine 2002 Oct;19(10):814–21. 15. Di Blasi Z, Harkness E, Ernst E, Georgiou A, Kleijnen J. Influence of context effects on health outcomes: a systematic review. Lancet 2001 Mar 10;357(9258):757–62. 16. Turner JA, Deyo RA, Loeser JD, Von Korff M, Fordyce WE. The importance of placebo effects in pain treatment and research. JAMA 1994 May 25;271(20):1609–14. 17. Dowsett SM, Saul JL, Butow PN, Dunn SM, Boyer MJ, Findlow R, Dunsmore J. Communication styles in the cancer consultation: preferences for a patient-centered approach. Psycho-oncology 2000 Mar–Apr;9(2):147–56. 18. Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet 2004 Jan 24;363(9405):312–9. 19. Peters S, Stanley I, Rose M, Salmon P. Patients with medically unexplained symptoms: sources of patients’ authority and implications for demands on medical care. Social Science and Medicine 1998 Feb–Mar;46(4–5):559–65. 20. Kirmayer LJ, Robbins JM. Patients who somatize in primary care: a longitudinal study of cognitive and social characteristics. Psychological Medicine 1996 Sep;26(5):937–51. 21. Epstein RM, Shields CG, Meldrum SC, Fiscella K, Carroll J, Carney PA, et al. Physicians’ responses to patients’ medically unexplained symptoms. Psychosomatic Medicine 2006 Mar–Apr;68(2):269–76. 22. Salmon P, Peters S, Stanley I. Patients’ perceptions of medical explanations for somatisation disorders: qualitative analysis. BMJ 1999 Feb 6;318(7180):372–6. 23. Dowrick CF, Ring A, Humphris GM, Salmon P. Normalisation of unexplained symptoms by general practitioners: a functional typology. British Journal of General Practice 2004 Mar;54(500):165–70. 24. Ring A, Dowrick CF, Humphris GM. What do general practice patients want when they present medically unexplained symptoms, and why do their doctors feel pressurized? Journal of Pschosomatic Research 2005;59(4):255–60. 25. Os TW van, Brink RH van den, Tiemens BG, Jenner JA, Meer K van der, Ormel J. Communicative skills of general practitioners augment the effectiveness of guideline-based depression treatment. Journal of Affective Disorders 2005 Jan;84(1):43–51.


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Person-centered medicine from deep inside: personal reflections of my depression and recovery Michael Paré, MD, Tyndale University College, Canada Correspondence to: Michael Paré, E-mail: [email protected]

I myself have suffered from serious mental illness. This is my story of suffering and recovery. In the year of 2006, I volunteered as a Face of Mental Illness Awareness Week, a Canada wide anti-stigma public service campaign organized—in part—by the Canadian Psychiatric Association [1]. I voluntarily chose to do this public service to fight against the stigma of mental illness. This stigma against illnesses of the mind/brain are the result of both internal stigma (self-stigma), and external stigma (social stigma [2]) and both types of stigma are especially strong in the field of medicine [3]. It is very difficult to know how to describe how depression really feels. So I’ll try to get some much needed assistance from the author Franz Kafka [4]; the painter Salvador Dali; and by using the lyrics of the Beatle John Lennon [5]. A student taking a science degree in college I suffered from what is sometimes called double depression. For a while I functioned fairly well externally: meaning only that I could put one foot in front of other and wasn’t actually flunking out. I did not realize at the time that I was suffering a serious combination of two depressive disorders. I was unlucky enough to be afflicted with a newly diagnosed case of major depressive disorder, yet also—in addition to this very unwelcomed bio-psych-brain condition—I was also suffering a preexisting—more chronic depressive condition called dysthymia. It was not quite a second dose of destructive depressive despair, but it sure felt that way. So I went from feeling weird and crappy to feeling very much worse. At times I felt I was mentally falling apart. This strange impression was due to the unfortunate fact that I was, indeed—in a sense—falling apart inside. I became increasingly socially anxious, developed progressively more and more alienation and, little by little, withdrew from most social contact. To simply say that I was excessively ‘selfconscious’ and that I had a problem with a ‘negative self image’ and leave the explanation at that—would be to use horribly ludicrous hyperbole. In point of fact I actually had a horrendously sadistic relentlessly self punishing self image. To say I hated aspects of myself is, a huge understatement. I had an enormously exaggerated sense of my own social, academic, intellectual and physical imperfections. As it is often said: it is very difficult to know how to accurately describe how depression actually feels. In this case the cliché is absolutely correct: it is simply not possible to adequately describe the experience of depression in mere words. For this reason I have decided to use some visual images to communicate where words plainly fail. My life was like living inside a Dali painting. Dali is rightly regarded as a first class artistic genius and his paintings are highly treasured. Nevertheless, even hard-core aficionados would balk at actually being an inhabitant ‘in’ Dali’s strange surrealistic landscapes! Not only was the world around me perceived as exceedingly dangerous; but also my own self was seen as horribly dangerously alien. I did suffer from some acne, nevertheless I progressed to being overly and intensely ashamed of my acne—which was objectively never really that bad. I progressed to a psychologically distorted cognition, where I didn’t simply have a bad case of pimples—(even huge ridiculously embarrassing pimples): but rather I had a (non-psychotic) belief that I was a bad case of acne. Indeed I saw myself as a huge walking and sometimes


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talking pimple. It’s bad enough for a person’s self-esteem and self-confidence to have a bad case of acne, on the other hand, it’s a quantum jump of shame and embarrassment to actual be a ‘giant walking pimple’. At times I felt like the central character in Franz Kafka’s novel: The metamorphosis—I felt like a bizarre awkward giant insect in a world of human beings. In his very popular album ‘Imagine’, John Lennon sang these memorable lines: “You can wear a collar and a tie, one thing you can’t hide, is when you’re crippled inside.” And this is surely how my life often felt to me. I felt like a giant insect in a suit and tie. Nevertheless, when around my family I was able to fake some sort of passing performance of mental health. Basically to do so I simply kept my mouth tightly shut, and basically that was enough to convince them that I was ok. Nevertheless, internally I was increasingly hopeless, intensely anxious and filled with a profound and hostile self-loathing. And then my depression got worse. I suffered huge harrowing pangs of emotional pain; I felt I was the outsider, the alien, the freak, the weirdo. I was in almost constant psychological turmoil. For me depression was like an endless and relentless burning of my mind. I felt my brain was on fire. Eventually that feeling of burning alive was completely consuming. At that point I started thinking of suicide. I felt almost constant mental torture: day by day by day by day by day by day by day by day by day by day by day by day by day by day by day by day … by day. (Sounds painfully tedious does it not?) And then my depression got even worse. It was not so much that living was painful, it is more correct to say that living was pure pain. For most people the words: ‘Living’, ‘Life’, and being ‘Alive’ when heard or contemplated lead logically to at least some positive emotional associations. These words bring with them some positive connotations of: physical health, positive enjoyment, connection and friendship, and various pleasurable and meaningful activities. Yet for me these words were by some means translated by the deeply distorted neuronal lexicon buried in my disordered brain (in it’s profoundly depression state) as: ‘Living’ = ‘Burning alive’; ‘Life’ = ‘Endless suffering’; ‘Alive’ = ‘living hell’. These feelings went on for many agonizing months with only an occasional brief mirage-like oasis of relief. Eventually there was no oasis and no emotional relief at all. And then my depression got even worse. I went from thinking of suicide to carefully planning my desperate escape from life by any means. To escape the endless torture, I made a truly serious suicide attempt by taking a very large overdose of muscle relaxant pills. I took enough pills to kill myself. I was admitted to hospital in a coma, yet I was quickly helped by medical and psychiatric treatment. After being discharged from hospital, I immediately entered individual psychotherapy and also took part in group psychotherapy. I soon returned to college and resumed my previous academic life. At first I was still very shaky but at least I was much less depressed. The pimple (that was me) had been popped, the contents drained. That fulminating abscess excised, opened, drained and cleaned. My damaged psyche, had been somewhat renewed, and definitely rejuvenated, and although certainly not yet entirely restored, at least was on the way in a positive healing direction. A few months after I attempted suicide I got into university—a bachelors of science program. I had a new more hopeful attitude—and although I would need many more years of psychotherapy, I was substantially better and on my way in life. I have not suffered from depressive disorder for over twenty-five years. I am so lucky to have survived, I came close to not making it. I am now a physician and medical psychotherapist who treats patients (including fellow physicians) suffering from clinical depression and other emotional disorders. I believe my own experience of severe depression has helped me identify with, and have extra empathy for these victims. I have also been keenly motivated—because of my own traumatic emotional experiences—to help educate the public and decrease the stigma experienced by others who have also been afflicted by mental illness. In medical training and practice the stigma of mental illness is—if anything—even more of a problem than with the general public. Although physicians are taught that they are super-human beings, in actual reality physicians are,


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of course: simply people. Or as the psychiatrist Harry Stack Sullivan said: “All of us are much more human than otherwise.” And doctors are at least as vulnerable to mood disorders and stress as are other people. I now have a very rewarding and successful career in clinical medicine. My work has several interesting and constructive facets including: patient care, teaching, educational development, administrative innovation, and with further learning and scholarly components as well. With the essential and much appreciated help that I received, I am so fortunate to not only have survived a severe depressive illness, but even, in many ways, to actually have thrived.

References 1. A new face for mental illness awareness week 2004. Canadian Psychiatric Association Bulletin, September 2004. Available from: http://ww1.cpa-apc.org:8080/publications/bulletin/current/news4En.asp. 2. Out of the shadows at least transforming mental health, mental illness and addiction services in Canada. Final Report of the Standing Senate Committee on Social Affairs, Science and Technology, May 2006. 3. Ontario Medical Association Physician Health Program Website. [webpage on the internet]. Available from http://www. phpoma.org/. 4. Kafka F. The metamorphosis. USA: Bantam Books; 1972. 5. John Lennon. Imagine. Lyrics available from: http://johnlennon.com/html/videos.aspx.


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Section on Person-centered Public Health

The service user as a person in health care—service users organising for self empowerment Jan Wallcraft, Dr., UK Department of Health, London, UK Correspondence to: Jan Wallcraft, E-mail: [email protected]

Introduction In 2009, we are discussing how to return to psychiatric patients their right to be treated as a person. The fact that we are having these events is an acceptance that there has been a problem in treating patients as people, as full citizens. In all societies there are specific laws and practices which exclude people thought to be mad or mentally ill, and medicine and law have worked together to achieve this exclusion. I am writing here as a person who became a mental patient in 1972 and received a PhD in 2002 through study of the mental health system and patients’ perspectives.

Loss of personhood in psychiatric healthcare—the history The treatment of madness in previous centuries has rarely been humane or democratic: “They called me mad, and I called them mad, and damn them, they outvoted me” Nathaniel Lee, Restoration poet on being committed to Bethlem in the 17th century [1].

Law and science in the 19th century was intended to offer justice and better health-care for the ‘mad’. There was an awareness that people could be arbitrarily labelled as lunatics and their liberty and property unfairly taken from them. The Lunacy Acts in England and other countries were aimed to make loss of freedom less arbitrary. However, this did not improve the way that the mad were treated, or the conditions in the madhouses. Science and law did not liberate the ‘mad’. It provided an objective justification for isolating those deemed to be ‘mad’ from the rest of society—usually permanently. There was little conception that people might recover, and little distinction was made between permanent conditions of brain damage or learning disabilities and problems that might have been temporary. Theories of madness set out a depressing prognosis for ‘madness’ which reinforced the role of doctors. An early 19th century medical journal [2, p. 149–150] states: “Insanity is purely a disease of the brain. The physician is now the responsible guardian of the lunatic and must ever remain so”. Lord Shaftesbury, an English aristocrat and member of parliament, dedicated his life to trying to help the poor. He was instrumental in the Lunacy Act of 1845. He spoke of the way that people deemed to be mad lose their personhood: “What an awful condition that of a lunatic! His words are generally disbelieved… . We know him to be insane, at least we are told that he is so, and we place ourselves on guard—that is, we give to every word, look, gesture a value and meaning which… it would never bear in ordinary life. Thus, we too readily get him in, and too sluggishly get him out, and yet what a destiny!” [1].

In the 1990s, Shaftesbury’s words are echoed in an article by service users: “Typically, on admission to a psychiatric ward, you are interviewed by a doctor. Many people expect this to be an opportunity to tell all that is troubling them to an expert who will help. But much of the interview is … baffling. ‘Count backwards from 100 in sevens’ ‘Do you believe your thoughts are being controlled?’ There appears to be no space to say on your own terms and in your own words, just what are the difficulties that have reduced you to this situation.” [3].


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Reformers and allies in the 20th century Many reformers have addressed the de-humanising effect of psychiatry on the person. In the USA, Erving Goffman wrote about institutionalisation and stigma, Thomas Szasz argued against the inhumanity of forced treatment, Peter Breggin wrote about the damaging effects of treatments, Phyllis Chessler discussed women’s position in psychiatry given patriarchal assumptions about ‘normality’. In the UK, R.D. Laing called for patients’ experience to be the central focus and Suman Fernando wrote about the Western imperialist assumptions of psychiatry.

Forced treatment In the 20th century, psychiatric patients and former patients began to set up self help and campaigning groups in the USA, UK, and many parts of Europe. Early groups were small, vocal and angry, sensing their lack of power and the unwillingness of society or professionals to take them seriously. Many wanted psychiatry abolished, and were against medication and ECT because of their damaging effects. It was only when this movement gained strength and numbers (with the support of non-patient allies) that it was possible to refute the assumption that we could never be full members of society or participate in philosophical, political and scientific debates about mental illness. Judi Chamberlin in the USA wrote an influential book about her own recovery and about how survivors of psychiatry were organising to raise their consciousness and help each other: “As [ex-patient] groups become more visible they recruit more members. This occurs because ex-patient groups speak to a truth of the patient-hood experience: that people’s anger and frustration are real and valid, and that only by speaking out can individuals who have been harmed by the entrenched power of psychiatry mount a challenge against it ” [4, p. 323–336].

Post-psychiatry UK Psychiatrists Thomas and Bracken [5] argue for psychiatry to abandon its grandiose modernist assumptions that it had, or was about to discover, the explanation of and answer to mental illness. They propose a more equal place for psychiatry among other professions, such as social work and psychology. They argue its concern should be good mental health care, not control, coercion and social exclusion, and for real partnership between doctors and patients. They call for an end to pharmaceutical company funding of research.

The service user/survivor movement in the 21st century British journalist, Jeremy Laurance [6] describes how patients are reclaiming their personhood: “In Britain, the growth of the users movement over the past decade is the … most striking development in the mental health services. A plethora of groups representing different user interests have sprung up … the organisations are demanding the right for mentally ill people to take charge of their own lives and, wherever possible, their treatment. ‘Preserving independence and wresting control from the professionals are key themes … non-medical alternatives … such as crisis houses are in vogue.’ ”

My report [7] showed that there is a shared agenda among service users in mental health: “Although service users/survivors are a diverse group, the On Our Own Terms report found important shared issues. A key shared issue is the right to be an individual and to have services that fit the person, not the label.”

Key elements in the common agenda I found include: •• •• •• •• ••

Staff need to be more empathic and supportive Acute services should be drastically improved, perhaps with the help of advance directives Doctors should address life issues, not automatically prescribe medication ECT should be banned or at least more strictly regulated There should be more emphasis on prevention and non-medical alternatives, such as safe houses

With regard to psychiatric and mental health research, service users want to be involved in setting research agendas and to be fully involved in how research is conducted, analysed and disseminated [8]. Conceptual Explorations on Person-centered Medicine

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Diagnosis and assessment—a service user perspective Based on my life and work experience these are views commonly expressed by patients and service users: •• Nosological diagnoses do not help us much. They are for classification and resource allocation. We need comprehensive or integrative person-centered diagnosis where we are enabled to tell our stories in our own way and in our own time. •• Assessment of needs can be done in full partnership with the person and their family and/or friends who will be part of their support system. •• Real partnership requires real changes in power dynamics, law and medical training.

References 1. Porter R. The Faber Book of Madness. London: Faber; 1991. 2. Johnstone L. Users and abusers of psychiatry: a critical look at psychiatric practice. 2nd ed. London: Routledge; 2000. 3. Rose D, Campbell P, Neeter A. Community care: users’ perspectives. In: Weller M, Muijen M, editors. Dimensions of community mental health care. London: W.B. Saunders; 1993. p. 320–1. 4. Chamberlin J. ‘The Ex-Patients’ Movement’. Journal of Mind and Behaviour 1990 Summer;11(3):323–36. 5. Bracken P, Thomas P. Postpsychiatry: mental health in a postmodern world. Oxford: Oxford University Press; 2005. 6. Laurance J. Pure madness. London: Routledge; 2003. 7. Wallcraft J. On our own terms. Sainsbury Centre for Mental Health; 2003. 8. Wallcraft J, Schrank B, Amering M, editors. Handbook of service user involvement in mental health research. Chichester: Wiley-Blackwell; 2009.


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Section on Person-centered Public Health

Person-centered prevention and health promotion Iona Heath, Dr., Executive Committee, World Organization of Family Doctors (Wonca), Royal College of General Practitioners President 2009–2012, UK Correspondence to: Iona Health, E-mail: [email protected]

Since at least the time of Hippocrates in the 5th century AD, doctors have sought to prevent diseases, as well as to offer treatments and cures, and consideration of preventive advice remains an essential element of every medical encounter. In 1979, Stott and Davies listed four possible components of each consultation in primary care [1]. The last of these was opportunistic health promotion, advice made more effective by being directly linked to the content of the preceding consultation. For example, advice to stop smoking is proportionately more powerful when it is linked to an episode of acute bronchitis or a first presentation of angina. In contrast, the blanket application of preventive imperatives poses a grave threat to authentically person-centered medicine. Fear is present to a greater or lesser extent in every medical encounter—fear of serious disease or chronic pain or disability or premature death—and, even when this scale of fear proves unwarranted, it can be easily replaced by the fear of embarrassment. One of the many tasks for the doctor in this situation is to locate and acknowledge the fear, to calm inappropriate fear and, for well-founded fear, to find some measure of hope in the identification of alternative better futures. The doctor is in a position, because of his or her particular professional knowledge, to envisage possibilities which can be offered to the patient but should never be imposed. A better and more hopeful future might result from changes in life circumstance, or from giving up smoking or drinking, or from the effects of medication or more complex medical treatments. The prevention of disease is a noble aspiration but it causes harm as well as good and the certainty of death places limits on its effectiveness that are not sufficiently acknowledged [2]. When the prevention of disease begins to assume greater priority than the relief of suffering, something very fundamental begins to go awry. With the development of increasingly sophisticated methods of biometric measurement, the definition of disease has shifted and has become increasingly dependent on number and on an assessment of the deviance of an individual’s measurement from the statistical norm. This has begun an apparently inexorable process by which an ever greater proportion of the population is classified as being in some way abnormal. The classification of disease has become detached from the experience of suffering. This is happening with the definitions of diseases and even more with the identification of risk factors for disease. Linn Getz and colleagues [3] applied the thresholds recommended in the 2003 European guidelines on cardiovascular disease prevention to the entire adult population of the Norwegian county of Nord-Tröndelag. They discovered that half of the population are considered to be at risk by the early age of 24 years. By the age of 49, this proportion rises to 90% and as much as 76% of the total adult population are found to be at ‘increased risk.’ Yet the current life expectancy at birth in Norway is 78.9 years, making it one of the longest living populations ever. Something appears to be going very wrong—it is simply not possible for three quarters of one of the longest living populations in history to be at increased risk of early death and yet, fear is sewn in every preventive health consultation which follows these guidelines and fear itself throws a shadow across life and undermines health [4]. These huge prevalences of designated risk are driving rapid increases in the rates of prescribing of pharmaceuticals aimed at minimising the risk factors. In whose interests do these trends operate? Many commercial and professional interests are well served by them but clearly the pharmaceutical industry is first in line and seeks to consolidate its advantage by providing support to those who write the guidelines. Every single one of the authors of the 2003 European guidelines on cardiovascular disease prevention has a significant connection with the pharmaceutical industry [5]. Conceptual Explorations on Person-centered Medicine

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These disturbing trends pose huge threats to the viability of healthcare systems funded through taxation and based on social solidarity. The treatment of disease and the relief of pain and suffering do not demand limitless resources and can be achieved by such a system. However, primary prevention involving the wholesale treatment of all known risk factors for serious disease has the capacity to bankrupt any healthcare system funded through taxation [6]. Allowing the imperatives of primary preventive public health medicine to run contrary to the concept of personcentered medicine has the potential to damage healthcare [7]: Doctors with a public health orientation can be quick to say what general practitioners should be doing on the basis of population data. Yet doctors and nurses in general practice face the frustration of being bribed or bullied by governments to achieve targets that many patients are not ready to accept for personal and social reasons. Nothing is more likely to reduce the likelihood of long-term ‘success’. Coercion may in the short-term achieve apparent health gain targets, but at what cost to relationships and the professionals’ feelings of integrity and self respect? The opportunity costs are still unevaluated.

This is the recurring problem of utilitarianism [8]: In the name of taking each person’s pain seriously—the noblest motivation in the birth of utilitarianism—we have a view that cannot adequately fathom any person’s pain in its social context or see it as the pain of a separate person.

In his Groundwork of the Metaphysic of Morals of 1788, Immanuel Kant laid out his categorical imperative: Act in such a way that you always treat humanity, whether in your own person or in the person of any other, never simply as a means, but always at the same time as an end.

For doctors, Kant’s imperative becomes that we treat our patients always at the same time as an end, whatever else we seek to achieve. And also that we treat ourselves, ourselves as doctors, as an end and do not allow ourselves to be treated simply as a means. Contemporary healthcare systems, perhaps themselves increasingly subservient to multinational commercial interests [9], have a worrying tendency to treat both patients and doctors as the means to some other greater purpose and neglect to treat them, at the same time, as ends in themselves. The greater purpose might be something very worthy, such as a cure, or a longer life or something rather vaguer like ‘the public health’ or ‘the public interest’ but, however, worthy the end, turning humanity into simply the means to achieve it, is to undermine what it is to be human in a very fundamental way and this holds even if those who are used as the means stand to benefit directly. In order to treat someone as an end in him or herself, one is obliged to pay a very particular attention to each individual and there can be nothing cursory. Philip Roth [10] sees this very clearly: Keeping the particular alive in a simplifying, generalizing world—that’s where the battle is joined.

Like writers, and perhaps even more so, doctors must keep the particular alive. Biomedicine is an intensely simplifying and generalising world. We make generalisations about people and categorise them all the time—and we have to, but, as we do so, we simplify, censor and devalue individual experience, values and aspirations.

References 1. Stott NCH, Davies RH. The exceptional potential of the consultation in primary care. Journal of the Royal College of General Practitioners 1979 Apr;29(201):201–5. 2. Barnard D. Love and death: existential dimensions of physicians’ difficulties with moral problems. Journal of Medicine and Philosophy 1988 Nov;13(4):393–409. 3. Getz L, Kirkengen AL, Hetlevik I, Romundstad S, Sigurdsson JA. Ethical dilemmas arising from implementation of the European guidelines on cardiovascular disease prevention in clinical practice. Scandinavian Journal of Primary Health Care 2004 Dec;22(4):202–8. 4. Getz L, Sigurdsson JA, Hetlevik I. Is opportunistic disease prevention in the consultation ethically justifiable? British Medical Journal 2003 Aug 30;327(7413):498–500. 5. De Backer G, Ambrosioni E, Borch-Johnsen K, Brotons C, Cifkova R, Dallongeville J, et al. European guidelines on cardiovascular disease prevention in clinical practice. European Heart Journal 2003 Sep;24(17):1601–10. 6. McKinlay JB, Marceau LD. A tale of 3 tails. American Journal of Public Health 1999 Mar;89(3):295–8. 7. Stott NCH, Kinnersley P, Rollnick S. The limits to health promotion. British Medical Journal 1994 Oct 15;309(6960):971–2. 8. Nussbaum MC. Poetic justice: the literary imagination and public life. Boston: Beacon Press; 1995. 9. Heath I. Promotion of disease and corrosion of medicine. Canadian Family Physician 2005 Oct;51:1320–2, 1326–9. 10. Roth P. I married a communist. London: Jonathan Cape; 1998.


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