Beyond Present Patient Realities: Collaboration, Care ...

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Beyond Present Patient Realities


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2015

Collaboration, Care and Identity

Edited by

Peter Bray and Ana Maria Borlescu

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Beyond Present Patient Realities:

7KH ,QWHU'LVFLSOLQDU\ 3UHVV LV SDUW RI ,QWHU'LVFLSOLQDU\1HW ± D JOREDO QHWZRUN IRU UHVHDUFK DQG SXEOLVKLQJ The Inter-Disciplinary Press aims to promote and encourage the kind of work which is collaborative, innovative, imaginative, and which provides an exemplar for inter-disciplinary and multi-disciplinary publishing.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means without the prior permission of Inter-Disciplinary Press.

British Library Cataloguing in Publication Data. A catalogue record for this book is available from the British Library.

Inter-Disciplinary Press, Priory House, 149B Wroslyn Road, Freeland, Oxfordshire. OX29 8HR, United Kingdom. +44 (0)1993 882087

ISBN: 978-1-84888-408-3 First published in the United Kingdom in Paperback format in 2015. First Edition.


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Table of Contents

Part I

Realities and Perceptions The Prince Is the Patient: A Shakespearean Tragi-Fantasy of Total Institutional Care Peter Bray

Part II

vii

3

Healing Representations in Literature and Cinema Davina Marques and Fabiana Carelli

35

‘At the two poles of birth and death’: The Failure of Care in Hilary Mantel’s Every Day Is Mother’s Day and Vacant Possession Eric Sandberg

49

‘To be or not to be…’: Identity Lost or Identity (Re)Gained in Pedro Almodóvar’s La ley del deseo (1987) and La piel que habito (2011)? Jytte Holmqvist

67

Realities: Patient Roles, Rights and Relationships Performing Illness: Patients’ Narrative Constructions of Illness, Interactions and Resistance Ana Maria Borlescu In Exploration of the Moral Underpinnings of the Decision to Euthanize Iva Apostolova

87

113

Part III Realities of Care in Practice Re-Conceptualising Critical Care Nursing: One Team’s Approach Janett Kajic Jackson and Svatka Micik

137

Coaching, Commitment, Courage: Keys to Patient Centred Care Svatka Micik and Nihada Besic

161


Beyond Present Patient Realities Peter Bray and Ana Maria Borlescu

173

The Fennell Four Phase Model: A Programme for Addressing Culture Shock, Trauma, and Counter-Transference in Volunteerism Patricia Fennell, Sara Rieder Bennett, Ann Fantauzzi and Kelly Bertrand

189


Crises Lead to Opportunity Susanna Bujtas


Introducing ‘The Patient’: Project and Publications Over the last decade ‘The Patient’ project has been fortunate enough to have been supported by people across the globe who have been actively involved in patient care as patients and patients-in-waiting, as practitioners and academics. The editors and contributors to the project’s publications have often been uniquely positioned to provide first-hand accounts of patient experiences, to discuss and examine what patienthood means to human beings, and to discuss what makes it infinitely more bearable. Without exception the conversations, debates and academic research that the project has attracted and encouraged have talked about the liminal and dependent nature of the patient’s position and the significance of human contact and caring. It has implicitly and explicitly challenged the academy and the institution, governments, and the communities that they serve, to be mindful of health service provisions and practices. Delegates have championed the preservation of human values, identity, and agency, and have puzzled over why health services are still unable to convincingly operate models of practice that place the patient at their centre. As the 2013, 3rd Global conference on The Patient concluded, For the patient’s position in the therapeutic relationship to be reconfigured, perhaps the healthcare professional’s position needs to be likewise explored and reconsidered. For patienthood to be compatible with personhood, professionalism too may need to be compatible with personhood.1 Beginning with the First Global Conference in Salzburg, Austria, in November 2008, as a project, ‘The Patient’ emerged from and extended previous conference discussions begun in 2006 that were concerned with ‘making sense of health, illness and disease and interested in examining the liminal identity of the patient.’ By posing the following simple questions: ‘Who is a patient nowadays - an individual, a collective identity?’ and, ‘How and by whom is “the patient” as a cultural concept created and circulated?’ one of the earliest eBooks in this project’s series examined, from multiple interdisciplinary perspectives, the ‘totality of patienthood’, the nature of physicianship and suggested that even the apparently isolated patient always has a place in a larger social network.2 Noting that modern life has reinterpreted many of its institutions and values, this collection suggested that our understanding of health and illness must equally be held up to scrutiny and negotiation. Thus, human beings as social actors in medicalized settings are forced to reconsider those roles too; ‘Illness as a social reality, while affecting individual bodies, concerns the social body as well.’3 Contributors to this book powerfully



viii


indicated that the social identity of the patient was being treated literally and figuratively as a site for, and the subject and object of, suffering. They claimed that as the patient, as a recipient of healthcare services, grows increasingly self-aware, informed, and even militant, so physicians and other medical care workers use their expertise to impose ideologies that reinforce or resist or counter these positions. Subsequently the influential impact and experience of the unsettled and the illdefined relationship between patients, healers, and carers figured largely in the first volume and have continued to be a central point of investigation and discussion in subsequent publications. What emerged was a need to rethink the patients’ experiences. This concern was more fully articulated in The Patient: Global Interdisciplinary Perspectives, published in 2010. In this collection, editor Kimberly Myers represents the view that ‘the experience, understanding, and expression’ of an individual who is also a patient is influenced by the nature of the suffering, the degree of its cultural acceptance, and the individual’s very unique responses.4 She suggests that as a result, and prompted by social and cultural cues, the identity of the patient is configured by the nature and cultural significance of his or her illness. Consequently the documentary examples provided by this book’s contributors were presented as historical snapshots to be used to ‘measure our progress in healthcare accessibility and funding as we reflect on the similarities and differences that exist between people across the globe.’5 In this collection clinical aspects of ethical practice, treatment, and prevention in the therapeutic encounter were also argued alongside the characteristics of an idealised ‘good doctor-patient relationship.’6 The emerging difficulties of identity and power in this relationship, especially when people become objectified or sexualised as patients is a theme that subsequent publications have returned to again and again. Questions of agency over one’s wellness are of little account when one is healthy but when illness and vulnerability take centre-stage the increasingly liminal individual must contend with powerful medical institutions and the pressure of peers, family, and carers. Re-packaged as ‘the patient,’ one is naturally faced with existential questions and challenges that have a more immediate priority. This broad collection also examined how different cultures engage with the actual and the notional reality of the patient and how those concepts, particularly when applied to the suffering individual, are represented in the Arts and through the media. Myers concluded that the value of the ideas presented within this collection raised the ‘“critical consciousness” of the issues confronting patients,’ in the hope that they will be ‘rehumanising’ and foster ‘a reorientation of perspective towards a commitment to social justice.’7 Responding to the Third Global Conference, held in Lisbon in 2013, Peter Bray and Teresa Casal published a collection of interdisciplinary work entitled Beyond Diagnosis: Relating the Person to the Patient – the Patient to the Person, shaped by the project’s growing interest in investigating what it means to be a patient.8


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Drawing from interdisciplinary perspectives that illuminated the patient experiences of individuals impacted by mental health issues and chronic, acute, and terminal illnesses, their work asked the question, ‘What has happened to the person?’ Thus, ‘patienthood,’ in all its facets emerged in this collection as a central topic for debate and the patient as an object of scrutiny, both in its connoted identity as a health service customer, consumer, and client, and as a character of growing independence and agency. Positively drawing upon the liminal character of the patient, but no longer contingent or dependent for its definition upon its relationship with professional service providers, patienthood emerged as an independent concept to be explored literally and figuratively. It was suggested that as human beings have better health and life expectancy so they are likely to assume the mantle of patienthood in all its manifestations at some time in their lives. Consequently, just as one might take out medical insurance, it has become a correspondingly urgent task to prepare oneself and others for this inevitable transition. Arguably, even as individuals continue to freely present themselves for diagnosis and to receive the additional label of ‘the patient,’ so patients-in-waiting are increasingly unlikely to leave their questions or agency at the waiting room door. Patients who are expected to unquestioningly and naively place their trust, and their bodies into the hands of more powerful expert providers may soon, it was suggested, be a thing of the past.9 When illness temporarily or permanently comes to challenge and disable our bodies and dismantle our minds, when our inability to complete simple tasks steals away our independence, in our vulnerability we will still need to be heard, understood, and supported – to be treated as people.10 This volume reflected the conference and overall project concern to view the patient as a purposeful individual who is a pro-active partner in the service arrangement, contract, or relational. It argued that patient-centred practices through their reciprocity serve to reposition and transform the older order of medicalised service transaction into a relationship between human beings of integrity and equal value. This was vividly demonstrated by the experience of transformational nursing that serves its patients by distancing health professionals from their dependence upon, and the influence of, technologies as the only response to illness. The necessity and skills to relate interpersonally are ‘identified in this collection as central to the caring and healing relationship.’11 It championed a model of care that challenges medical staff to be more self-aware, more skilful in their treatment of patients as resourceful human beings, and create opportunities to develop more intimate relationships with them.


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Beyond Present Patient Realities How will health providers, already under pressure to meet even minimum service requirements, manage to develop a truly patient-centred ethos without rethinking the way that it positions the people that it serves?12

Thus, in echoing the sentiments of the first conference in this series, Bray and Casal conclude by stressing the importance of constructing models of care around human beings. The quality of patient-carer relationships, therefore, directly corresponds to the quality of care and patients’ satisfaction with their treatment and outcomes. They suggest that a service whose practices put its needs before the patients’ most basic need for relationship, responding only to their clinical treatment, is a service that is unconscionable, inadequate, and unacceptable. Unsurprisingly, the Fourth Global Conference on The Patient, held in Prague in 2014, thoughtfully iterated and pursued many of the themes and issues that had occupied the presentations of previous conferences. What it confirmed, and widely detailed in its eBook was that there is a passionate concern amongst academics, practitioners, and carers across the world to conceptualise the patient and the role in positive ways.13 Nevertheless, it is also realistically accepted that disabling institutional patient relationships continue to be the norm rather than the exception. At best the position of patient-centred relationships, practices, and services within institutional medicalised models continues slowly in its development and growth or is still relatively marginalised or clandestine. The evidence suggests, however, that practitioners and carers want opportunities and time to recognise the humanity of their patients and to work collaboratively. These professionals are inevitably driven beyond singular and restrictive linear approaches to more fully engage with patients in mutually respectful, empowering, and healing ways. Whilst the following chapters will provide a flavour of the conference and the project’s ongoing discussions concerning traditional perspectives of patient care and objectification, it is hoped that by discussing the individual at the heart of medical care this present collection will more thoughtfully examine the realities of patient roles, rights, and relationships and suggest alternative approaches to patient caring. As usual there are no simple answers but this collection will provide multiple perspectives, or realities, that will assist the reader to think more broadly about the position of the patient, the character of the institution, and how future practice and research into patient-provider relationships might be grown and guided by patient realities rather than by simple socio-political exigencies. The Patient: Care, Suffering and Collaboration In the modern era, healthcare has generally been conceptualised through a biomedical approach. Biomedical terms and explanations have coloured our understanding of illness and consequently of the patient. Care for the patient has become increasingly standardized and alienating with technology performing an


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ever greater role in the process of reaching a diagnosis and treating the illness. This has changed the expression and interpretation of illness on both sides of the doctorpatient relationship. With health information available through a multitude of media channels, patients are more knowledgeable about possible interpretations of illness signs and available tests or treatments. Likewise, patients can browse through various health service providers before choosing the treatment plan best suited to their needs. However, there is a down side to this expanded availability of health information: a source’s reliability is not always verifiable while its actions might be motivated by interests other than providing proper treatment to patients. The possibility that patients will be misinformed is as great as the possibility that they will be better informed. Following the right treatment plan to a full recovery thus becomes ever more complicated. Simultaneously, individuals are considered responsible for their personal health, with failure to control and maintain physical health interpreted as a sign of social maladjustment. In western societies, health is becoming a dimension of an individual’s social identity and its successful management is a primary indicator of a productive and engaged member of society. On the other side of the doctor-patient relation, technological advancements in the field of medicine provide physicians with the resources to identify and treat illness well before it manifests itself through noticeable symptoms. The vast available resources and their overuse in diagnosis and treatment have spurred a debate about the over-medicalisation of health.14 How much care is too much care and where do tests and treatments stop alleviating symptoms and begin to cause suffering? How do the battery of medical tests performed affect the interaction with the patient and the latter’s account of illness? Is the patient’s voice still heard over the illness story told by biomedical diagnosis methods? Ideally, a healthcare system would balance an informed diagnosis with a responsible consideration for a patient’s personal and social needs. However, the complexity of providing proper care often leads to incomplete or incorrect results. Likewise, economic and administrative factors meant to improve the productivity of the healthcare system as a whole can impact upon a carer’s performance diminishing the quality of provided care.15 Some of the chapters in this volume present discussions of incomplete and, at times, dysfunctional care. Provided either by an institution or the family, care which does not place the patient at its centre and instead works to serve its selfinterests will ultimately undermine both the patient’s and the institution’s or family’s integrity. Transforming patients from the subjects to the objects of care, reduces them in the eyes of the institution to a set of numbers and symptoms’ listings. A patient’s identity is stripped away and replaced with a set of attributes which must be met in order to keep the patient contained. When healthcare is more concerned with meeting quotas and treating illness, rather than treating the patient as an individual with a complex identity beyond the


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manifestation of illness, it can cause additional suffering on the road to a cure. Research from inside the medical profession as well as the social sciences regarding patients’ satisfaction with healthcare services and doctor-patient interactions has revealed how difficulties in communication between patients and clinicians and the latter’s prioritisation of medical tasks can increase patients suffering and negative experiences with healthcare.16 Proper care includes acknowledging a patient’s identity and being attentive to one’s sensibilities. Suffering is a complex experience which goes beyond physical ailments, reverberating into an individual’s social context and impinging upon one’s identity. The experience of suffering and how it affects a patient’s identity is a recurrent theme in the present volume. Contributors reflect upon how the integrity of individual identity is challenged by the experience of suffering and how individuals can overcome it with the support of others and through personal resilience in the face of adversity. At times, only through significant change can one overcome suffering that limits the expression of self. Despite traumatic experiences, one’s identity can prevail and a renewed appreciation for life can help an individual regain purpose. The authors included in the present volume also discuss cases of suffering caused by harm brought to one’s own body and self or that of loved ones, and in each they show that it is a transforming experience which can affect every aspect of our lives. It can strengthen our ability to appreciate every moment and find comfort in the knowledge of a life well lived surrounded by close friends, or it can relentlessly chip away at our identity, paralysing us in our helplessness. The presence and help of others is often crucial in overcoming suffering, as the chapters in this volume show. Suffering is also a moral issue when care affects a patient’s wellbeing and integrity. Is it right to try and eliminate physical suffering only to prolong emotional suffering? How does seeing other peoples’ suffering impact upon us and when should we pull back from helping others in order to maintain our physical and psychological health? Both carers and patients lean towards ‘doing more’ and exhausting all available treatment methods. The authors included here show that at times the quality of a patient’s life should be given more consideration before performing complex treatments or interventions. They discuss ways of enacting care which acknowledge the emotional hardship illness and, at times, treatment can have on an individual and which also actively engage the patient in healing processes. Either by examining the failure of care or by emphasizing its achievements, all chapters return to the significance of the social aspects of caring. We are shown how an institution or caregiver can distort a patients’ identity and perception of self, how it can manifest an inverted representation of the social meanings attributed to basic care, and how deeply the social context of an individual can influence one’s health and wellbeing. Furthermore, this volume provides multiple


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perspectives on the patient’s body as a social construct and how aspects which at first seem to be personal autonomous decisions are in fact best interpreted as having an interactional component. All the chapters in this volume gravitate towards a relational perspective as a model for improved care. Contributors reveal how treatment decisions and practices impact upon all areas of a patient’s life as well as the lives of one’s friends and family, and how a collaborative approach can alleviate the burden. Not only is this approach beneficial for the patient, but also for the caregiver as it provides the opportunity to fully engage in one’s practice and have a meaningful relation with work. Through a plurality of voices, supported both empirically and theoretically, this volume provides a discussion of patient care and identity beyond their conceptualisation through illness-centred medicine. It furthers the dialogue on the significance of a collaborative approach to care, one in which the patient is an informed and active agent, supported and guided by a compassionate medical professional towards restoring health.

Notes 1

Arising from the 3rd Global Conference held in Lisbon in 2013, the editors’ conclusion aligns with delegates’ opinions that in order to change what has now become the generally accepted as the patient identity and patient-carer relationship, providers and practitioners would need to rethink how they position themselves and how they correspondingly allow the repositioning of their patients. Peter Bray and Teresa Casal, eds., ‘Introduction,’ in Beyond Diagnosis: Relating the Person to the Patient – the Patient to the Person (Oxford: Inter-Disciplinary Press, 2014), xii. 2 Aleksandra Bartoszko and Maria Vaccarella, eds., ‘Introduction,’ in The Patient: Probing the Interdisciplinary Boundaries (Oxford: Inter-Disciplinary Press, 2009), ix-xiii. 3 Ibid., ix. 4 Kimberly R. Myers, ed., ‘Global Perspectives on Patients: Observations and Implications,’ 3-15, in The Patient: Global Interdisciplinary Perspectives (Oxford: Inter-Disciplinary Press, 2010), 4. 5 Ibid. 6 Ibid., 5. 7 Ibid., 12; Here Myers cites Ano K. Kumagai and Monica L. Lypson, ‘Beyond Cultural Competence: Critical Consciousness, Social Justice, and Multicultural Education,’ Academic Medicine 84.6 (June 2009): 783. 8 Bray and Casal, Beyond Diagnosis. This volume was developed from the chapters contributed to the eBook: Peter Bray and Diana Mack, eds., People Being Patients:


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International, Interdisciplinary Perspectives (Oxford: Inter-Disciplinary Press, 2013). 9 Erving Goffman, Asylums: Essays on the Social Situation of Mental Patients and Other Inmates (London: Penguin Books, 1961/1991). 10 Bray and Casal, Beyond Diagnosis, viii. 11 Ibid., vii. 12 Ibid., viii. 13 Eric Sandberg and Maren Scheurer, eds., Culture, Experience and Care: (Re-) Centring the Patient (Oxford: Inter-Disciplinary Press, 2014). 14 See for example: Denis Campbell, ‘Doctors to Withhold Treatments in Campaign against “too Much Medicine”,’ The Guardian, 12 May 2015, Viewed on 20 May 2015, http://www.theguardian.com/society/2015/may/12/doctors-towithhold-treatments-in-campaign-against-too-much-medicine?CMP=fb_gu; Atul Gawande, ‘Overkill,’ The New Yorker, May 11, 2015, Viewed on 20 May 2015, http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande. 15 See for example: Pamela Hartzband and Jerome Groopman, ‘How Medical Care Is Being Corrupted,’ The New York Times, November 18, 2014, Viewed on 20 May 2015, http://www.nytimes.com/2014/11/19/opinion/how-medical-care-isbeing-corrupted.html?smid=fb-nytimes. 16 For example: Diana Slade et al., ‘Emergency Communication: The Discursive Challenges Facing Emergency Clinicians and Patients in Hospital Emergency Departments,’ Discourse & Communication 2.3 (2008): 271-298; Gina Kolata, ‘Doctors Strive to Do Less Harm by Inattentive Care,’ The New York Times, February 17, 2015, Viewed on 20 May 2015, http://www.nytimes.com/2015/02/18/health/doctors-strive-to-do-less-harm-byinattentive-care.html?partner=rss&emc=rss&smid=fbnytimes&bicmst=1409232722000&bicmet=1419773522000&smtyp=aut&bicmp= AD&bicmlukp=WT.mc_id; Aaron E. Caroll, ‘To Be Sued Less, Doctors Should Consider Talking to Patients More,’ The New York Times - The Upshot, June 1, 2015, Viewed on 1 June 2015, http://www.nytimes.com/2015/06/02/upshot/to-besued-less-doctors-should-talk-to-patients-more.html?smid=fbnytimes&smtyp=cur&abt=0002&abg=1.

Bibliography Bartoszko, Aleksandra and Maria Vaccarella, eds. ‘Introduction.’ In The Patient: Probing the Interdisciplinary Boundaries, ix-xiii. Oxford: Inter-Disciplinary Press, 2009.


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Bray, Peter and Teresa Casal, eds. ‘Introduction.’ In Beyond Diagnosis: Relating the Person to the Patient – the Patient to the Person, vii-xiv. Oxford: InterDisciplinary Press, 2014. Bray, Peter and Diana Mack, eds. People Being Patients: International, Interdisciplinary Perspectives. Oxford, England: Inter-Disciplinary Press, 2013. Campbell, Denis. ‘Doctors to Withhold Treatments in Campaign against “too Much Medicine”.’ The Guardian, 12 May 2015. Viewed on 20 May 2015. http://www.theguardian.com/society/2015/may/12/doctors-to-withhold-treatmentsin-campaign-against-too-much-medicine?CMP=fb_gu. Caroll, Aaron E. ‘To Be Sued Less, Doctors Should Consider Talking to Patients More.’ The New York Times - The Upshot, June 1, 2015. Viewed on 1 June 2015. http://www.nytimes.com/2015/06/02/upshot/to-be-sued-less-doctors-should-talkto-patients-more.html?smid=fb-nytimes&smtyp=cur&abt=0002&abg=1. Gawande, Atul. ‘Overkill.’ The New Yorker, May 11, 2015. Viewed on 20 May 2015. http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande. Goffman, Erving. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. London: Penguin Books, 1961/1991. Hartzband, Pamela and Jerome Groopman. ‘How Medical Care Is Being Corrupted.’ The New York Times, November 18, 2014. Viewed on 20 May 2015. http://www.nytimes.com/2014/11/19/opinion/how-medical-care-is-beingcorrupted.html?smid=fb-nytimes. Kolata, Gina. ‘Doctors Strive to Do Less Harm by Inattentive Care.’ The New York Times, February 17, 2015. Viewed on 20 May 2015. http://www.nytimes.com/2015/02/18/health/doctors-strive-to-do-less-harm-byinattentive-care.html?partner=rss&emc=rss&smid=fbnytimes&bicmst=1409232722000&bicmet=1419773522000&smtyp=aut&bicmp= AD&bicmlukp=WT.mc_id. Kumagai, Ano K. and Monica L. Lypson. ‘Beyond Cultural Competence: Critical Consciousness, Social Justice, and Multicultural Education.’ Academic Medicine, 84.6 (June 2009): 792-787.


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Myers, Kimberly R. ed. ‘Global Perspectives on Patients: Observations and Implications.’ In The Patient: Global Interdisciplinary Perspectives, 3-15. Oxford: Inter-Disciplinary Press, 2010. Sandberg, Eric and Maren Scheurer, eds. Culture, Experience and Care: (Re-) Centring the Patient. Oxford: Inter-Disciplinary Press, 2014. Slade, Diana, Hermine Scheeres, Marie Manidis, Rick Iedema, Roger Dunston, Jane Stein-Parbury, Christian Matthiessen, Maria Herke and Jeannette McGregor. ‘Emergency Communication: The Discursive Challenges Facing Emergency Clinicians and Patients in Hospital Emergency Departments.’ Discourse & Communication 2.3 (2008): 271-298.


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