Palliative care for the geriatric patient in Europe

Beiträge zum Themenschwerpunkt Z Gerontol Geriat 2010 DOI 10.1007/s00391-010-0149-y Received: 27. August 2010 Accepted: 3. September 2010 © Springer-Verlag 2010

R. Piers1 · S. Pautex2 · V. Curale3 · M. Pfisterer4 · M.-C. Van Nes5 · L. Rexach6 · M. Ribbe7 · N. Van Den Noortgate1 1 Department of Geriatric Medicine, University Hospital Ghent, Gent 2 Division of Palliative Medicine, Department of Rehabilitation and Geriatrics,   Geneva Medical School and University Hospital, Geneva 3 Acute Care for Elders Unit, Department of Gerontology, Galliera Hospital, Genoa 4 Klinik für Geriatrie, Evangelisches Krankenhaus Elisabethenstift, Darmstadt 5 Department of Geriatric Medicine, CHR de la Citadelle, Liège 6 Palliative Care Unit, University Hospital Ramón y Cajal Madrid 7 VU University Medical Center, Amsterdam

Palliative care for the geriatric patient in Europe Survey describing the services, policies, legislation, and associations

The majority of persons who die in Europe are older than 65 years and this proportion will continue to rise [1]. Palliative care in long-term care facilities and in geriatric wards is currently insufficiently developed in Europe. In addition, services available vary considerably and do not always meet the specific palliative care needs of the elderly, in particular for noncancer-related terminal diseases. Today, 20% of the European population is aged 60 and older (144 million) and 15% aged 80 and older (108 million). By 2050, the proportion of the population aged 80 and older will reach 26% (187 million) [2]. The prevalence of disability, frailty, and comorbidity will grow quickly and will affect the health care provision with increasing costs for inpatient care and medications, increasing need for formal caregiving, and larger prevalence of acute complications and adverse outcomes [3]. Treating these patients’ complex social, psychological, and medical needs will require specific structures and state-of-the-art knowledge in geriatrics and palliative care. To date, knowledge about the quality of endof-life care in the elderly patient in Europe is fragmented. The Geriatric Palliative Medicine Interest Group of the EUGMS

(European Union Geriatric Medicine Society) recently established a clear definition of geriatric palliative medicine and its characteristics [4]. The next step of the interest group was to estimate the actual situation of clinical settings, policies, legislation, and associations in geriatric palliative medicine in Europe, in order to address the important topics of geriatric palliative medicine and to facilitate the communication between clinicians, researchers, policy makers, and disease management program leaders in order to improve the care for the older patients at the end of life.

Methods A survey was developed by the members of the Geriatric Palliative Medicine Interest Group of the EUGMS. To best describe the clinical settings, the group decided to use written vignette cases of geriatric patients in the terminal phase of their disease according to the different trajectories of dying: an older patient with chronic heart failure, a person with severe dementia, and an older patient with cancer (. Tab. 1). After describing the availability of services for the overall popula-

tion (both geriatric and non-geriatric), the participants were asked to indicate which services are currently used for the vignette patients and which services they think would be the most appropriate. Second, current statements from official authorities, national laws, and policies dealing with the right to receive palliative care and euthanasia/physician-assisted suicide (PAS), advance care planning, and withholding/withdrawal of therapy were surveyed. Finally, the questionnaire asked about the existence of medical associations in both geriatric medicine and palliative medicine. A total of 21 European countries with potential interest for geriatric palliative medicine were identified. The survey was sent via mail to geriatricians with special interest in palliative medicine and palliative care physicians who are working within geriatric medicine structures in each of these European countries (participants). In case there was no such physician known within the EUGMS, the geriatric and palliative medicine societies were contacted and asked to indicate a physician familiar with both geriatric and palliative medicine. The participants were asked to complete the survey in collaboration with difZeitschrift für Gerontologie und Geriatrie 2010 

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Beiträge zum Themenschwerpunkt Tab. 1  Vignettes used in the survey Dementia:

An 85-year-old woman is cared for at home by her 87-year-old husband. Over the past 10 years she has suffered from Alzheimer’s type dementia, general osteoarthritis, and severe osteoporosis. At this moment, she is in a FAST scale stage 7b of her dementia. The family refers her to the hospital because of pneumonia. After recovering from pneumonia, she is seen by the speech therapist who discovers a swallowing problem, indicating a major risk of lung aspiration. Although dehydration and malnutrition are severe, the care team decides to use all possible conservative measures for feeding the patient in order to avoid aspiration without percutaneous endoscopic gastrostomy being inserted. The family agrees and confirms that the patient would not have accepted prolonging life measures at such a stage of her dementia. They, thus, accept the palliative approach. Non-cancer: An 84-year-old woman with long-standing left-sided heart valve disease, atrial fibrillation, and chronic heart failure is admitted to the emergency room because of an atypical chest pain, dyspnea, and peripheral edema. She lives alone although she’s disabled in the basic and in the instrumental activities of daily living (1/8 function preserved on the Lawton Index, 85/100 on the Barthel Index). No cognitive impairment is reported by her daughter. She fell once last week and has a large facial ecchymosis. After treatment adjustments, signs of heart failure slightly improve within 1 week. Careful assessment of symptoms reveals severe prostration, anorexia, nausea, dyspnea, peripheral edema, and leg pain. The patient and her daughter are told that these symptoms are the consequences of severe heart failure. Symptom relief and a palliative approach are offered to the patient. Cancer: An 81-year-old man with long-standing chronic ischemic cardiomyopathy having an implantable cardioverter defibrillator and suffering from COPD is admitted to the emergency room for acute right upper quadrant pain. He lives and cares for his severely disabled wife and is independent in performing the basic and instrumental activities of daily living (Barthel Index 100/100 and Lawton Index 8/8). No cognitive impairment is reported by his daughter. After laparoscopic surgery a cholangiocarcinoma is diagnosed. Due to his comorbidities, a palliative bilio-digestive anastomosis is performed. After discharge home, he is able to live for the next 6 months with the help of formal caregivers. Then, he starts complaining of right upper quadrant pain radiating to the back, nausea, constipation, hiccup, fatigue, and anorexia. He is still independent in ADL (Barthel Index 100/100), but he feels very tired after 3–4 steps and he is now dependent in performing IADL. No cognitive impairment is present. Additional tests confirm progressive advanced disease. Symptom control and a palliative approach are offered to the patient.

Tab. 2  General availability of palliative services in Europe  

Hospital PCU CT

Northern Europe Finland Sweden Denmark Norway England Scotland Northern Ireland Southern Europe Greece Spain Portugal Italy Eastern Europe Poland The Czech Republic Western Europe Austria France Belgium The Netherlands Switzerland Germany

− − − − − 0 +

0 + + − +++ + +++

− − − −

− + − −

− 0 + + + − − +

Palliative care on geriatric ward − + − − + +++ +

Hospices Long-term care Home care PCU CT CT Palliative day center

− + + − − + +++

0 − 0 − − 0 −

0 − − − 0 + 0

− + + − + + +

− − 0 − 0 + −

0 − 0 −

0 + − +++

− + 0 −

− − 0 −

− + − +

0 − − −

− −

0 −

+ +

0 0

0 −

+++ − − 0

− + +++   + −

+ − 0 0 − −

− 0 − +++ − +

− 0 0 + − −

− − +   − −

+ + +++   + −

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Results Participation

− − − − − −

PCU palliative care unit, CT palliative consult team. 0 not available, − rarely available, + often available, +++ routinely available.

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ferent colleagues involved in geriatric palliative medicine in their country.

A total of 19 questionnaires were returned. From northern Europe, Denmark, Finland, Norway, Sweden, and the United Kingdom (England, Northern Ireland, and Scotland) answered. From western Europe, Austria, Belgium, Germany, France, Switzerland, and the Netherlands replied. From southern Europe, Greece, Italy, Portugal, and Spain and from eastern Europe, the Czech Republic and Poland returned the survey.

Organization of palliative care Existing availability of palliative care services for the general population are summarized in . Tab. 2. Most European countries have residential palliative care units (western Europe) or hospices (other countries) and also palliative consult teams in home care. In long-term care facilities, specialized palliative care is only rarely available. Palliative care on geriatric wards is also not frequently available except in Anglo-Saxon countries. Palliative day centers are only available in Scotland.

Abstract · Zusammenfassung Z Gerontol Geriat 2010   DOI 10.1007/s00391-010-0149-y © Springer-Verlag 2010 R. Piers · S. Pautex · V. Curale · M. Pfisterer · M.-C. Van Nes · L. Rexach · M. Ribbe · N. Van Den Noortgate

Palliative care for the geriatric patient in Europe. Survey describing the services, policies, legislation, and associations Abstract Background.  Knowledge about the quality of end-of-life care in the elderly patient in Europe is fragmented. The European Union Geriatric Medicine Society (EUGMS) Geriatric Palliative Medicine (GPM) Interest Group set as one of its goals to better characterize geriatric palliative care in Europe. Objective.  The goal of the current study was to map the existing palliative care structures for geriatric patients, the available policies, legislation, and associations in geriatric palliative medicine in different countries of Europe. Methods.  A questionnaire was sent to Geriatric and Palliative Medicine Societies of European countries through contact persons. The

areas of interest were (1) availability of services for the management of geriatric patients by using vignette patients (advanced cancer, severe cardiac disease, and severe dementia), (2) policies, legislation of palliative care, and (3) associations involved in geriatric palliative medicine. Results.  Out of 21 countries contacted, 19 participated. Palliative care units and home care palliative consultation teams are available in most countries. In contrast, palliative care in long-term care facilities and in geriatric wards is less developed. A disparity was found between the available services and those most appropriate to take care of the three cases described in the

vignettes, especially for the patient dying from non-malignant diseases. The survey also demonstrated that caregivers are not well prepared to care for the elderly palliative patient at home or in nursing homes. Conclusion.  One of the challenges for the years to come will be to develop palliative care structures adapted to the needs of the elderly in Europe, but also to improve the education of health professionals in this field. Keywords Elderly · Palliative care · Services · Europe ·   Advance care planning

Versorgung geriatrischer Palliativpatienten in Europa. Umfrage zu Angeboten, Strategien, Gesetzgebung und Fachgesellschaften Zusammenfassung Hintergrund.  Der verfügbare Kenntnisstand zur europaweiten Qualität der Versorgung von Patienten in der Phase des Lebensendes ist fragmentarisch. Die Arbeitsgemeinschaft Geriatric Palliative Medicine (GPM) der European Union Geriatric Medicine Society (EUGMS) hat sich zum Ziel gesetzt, die Situation der palliativen Versorgung geriatrischer Patienten in Europa adäquater abzubilden. Ziel.  Ziel der Untersuchung war, bestehende Strukturen in der palliativen Versorgung geriatrischer Patienten zu kartieren, außerdem einen aktuellen Stand der Strategien und rechtlichen Rahmenbedingungen sowie der an geriatrischer Palliativmedizin beteiligten Fachgesellschaften in den verschiedenen europäischen Ländern abzubilden. Methode.  Medizinischen Fachgesellschaften in den Bereichen Geriatrie und Palliativmedizin in Europa wurde ein Fragenkatalog

übermittelt. Interessenschwerpunkte waren (1) Verfügbarkeit von Diensten für das Management geriatrischer Patienten (dafür waren Fallvignetten − fortgeschrittenen Krebserkrankung, schwere Herzkrankheit, ausgeprägte Demenz – entwickelt worden), (2) Strategien und gesetzliche Rahmenbedingungen sowie (3) an geriatrischer Palliativmedizin beteiligte Fachgesellschaften. Ergebnisse.  Neunzehn der 21 kontaktierten Länder nahmen an der Studie teil. Palliativmedizinische Einheiten und Teams, die für die palliativmedizinische Betreuung zu Hause beraten, gibt es in den meisten Ländern. Im Gegensatz dazu ist die Palliativversorgung in Langzeiteinrichtungen und in geriatrischen Stationen weniger entwickelt. Es zeigte sich eine Disparität zwischen den zur Verfügung stehenden Diensten und den am ehesten zuständigen Diensten für

die in den Fallvignetten skizzierten Patienten. Dies galt vor allem für die Patienten, die an nichtmalignen Erkrankungen versterben. Die Umfrage zeigte weiterhin, dass die Versorgenden auf die Betreuung älterer Palliativpatienten zu Hause oder in einem Pflegeheim nicht gut vorbereitet sind. Schlussfolgerungen.  Zu den Herausforderungen, denen wir in Europa in den nächsten Jahren gegenüberstehen, zählt die Entwicklung von Versorgungsstrukturen, die den Bedürfnissen älterer Patienten entsprechen, und eine Optimierung der Ausbildung von im Gesundheitswesen Tätigen in diesem Bereich. Schlüsselwörter Geriatrischer Patient · Palliativmedizin ·   Dienstleistungen · Europa ·   Versorgungsplanung

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Beiträge zum Themenschwerpunkt Tab. 3  Usual use and appropriateness of services for the vignette cases in 19 European countries   HOSPITAL Inpatient PCU Hospital CT Palliative care on geriatric wards HOSPICE Hospices LONG-TERM CARE PCU in LTC CT in LTC LTC without CT HOME CARE CT in home care Palliative day center Home care without CT

Dementia Use Appr

Non-cancer Use Appr

Cancer Use Appr

0 − +

ν ν ννν

0 − +

ν ν ννν

− + −

ννν ννν ν

0

ν

−

ν

+

ννν

0 − +++

ννν ννν 0

0 − +

ννν ν 0

− − +

ννν ν 0

− 0 +

ννν ν 0

− 0 +

ννν ν ν

+ − −

ννν ννν 0

Appr appropriateness, PCU palliative care units, CT (palliative) consultation team, LTC long-term care. Use: routinely +++, often +, rarely −, not available 0. Appropriateness: most appropriate ννν, less appropriate ν, not appropriate 0.

The current usage and most appropriate usage of services for the vignette cases are represented in . Tab. 3. Elderly patients dying from dementia or non-malignant diseases are most frequently cared for at home or in long-term care facilities without support from specialized palliative health care providers or in geriatric hospital wards. However, the participants of the survey believe that support from palliative consult teams in these outpatient settings would be more appropriate. Elderly patients dying from cancer are most frequently cared for with support from palliative consultation teams in the home care setting as well as in the hospital and in hospices. Elderly cancer patients in long-term care facilities do not frequently receive specialized palliative care although this is recommended by the participants. Nurses and physicians specialized both in geriatric and palliative care are most frequently available in geriatric wards (13/19 for nurses and 11/19 for physicians) and in consultation teams of home care (11/18 and 9/18, respectively), less frequently in palliative care units (8/19 both for nurses and physicians) and in hospital palliative consultation teams (9/18 and 10/18, respectively), and least often in consultation teams of long-term care facilities (6/17 both for nurses and physicians). The

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number of countries that often or routinely have psychologists with affinity for geriatric palliative patients varies from 2 in long-term care and home care, and 3 in geriatric wards over 5 in inpatient palliative care units and consultation teams, to 8 on geriatric wards.

Legislation and policies In most professional associations in Europe, statements dealing with the right to receive palliative care (16/19) and euthanasia/physician-assisted suicide (17/19) exist. However, in only half (9/18) of the countries, the right to receive palliative care is regulated by law, whereas national laws concerning euthanasia are reported to be present in all but two of the participating countries (i.e., not in Greece and Italy). Euthanasia/PAS is prohibited in all countries except for the Netherlands and Belgium. Statements from professional associations, national policies, and laws dealing with advance care planning (advance directives and surrogate designation) are present in more than half of the participating countries (for advance directives: 14/19, 12/18, and 11/18, respectively; for surrogate designation: 13/19, 11/17, 13/19, respectively). This is the case in Anglo-Saxon countries and in northern and western

Europe, but not in southern and eastern Europe. Guidelines concerning withholding/ withdrawal of therapy (artificial nutrition/ hydration and do-not-resuscitate orders) are written by professional associations in 11 and 12 out of 19 countries, respectively, which are in fact almost all Anglo-Saxon and western European countries. However, withholding/withdrawing of nutrition and do-not-resuscitate decisions are only addressed in a minority of European countries by national policies (6/18 and 7/18, respectively) and/or laws (4/18 and 7/19, respectively).

Associations in geriatric palliative medicine More than half (11/19) have associations dealing with geriatric palliative care, most being part of palliative care (8/11) and/or geriatric care associations (7/11). There were twice as many physician members in the different national geriatric societies compared to the national palliative care societies.

Discussion The response rate for this survey was good, according to other recent European studies [5]. The survey highlights the differences between countries and gaps in palliative care provisions in some countries as described in the European Association of Palliative Care Atlas [6]. Furthermore, elderly patients dying from dementia or non-malignant diseases are presently most frequently cared for at home or in long-term care facilities without support from specialized palliative health care providers or in hospital geriatric wards. However, geriatricians involved in palliative care highlighted the need of support of the palliative consultation teams in these outpatient settings. Consequently, developing palliative specialized care in home care and long-term care facilities for non-cancer trajectories of dying should be a priority as well as attracting more psychologists in these palliative consultation teams in Europe [7]. For hospitalized patients, the acute geriatric ward is believed to be most beneficial for these elderly patients dying from

non-malignant diseases, because of the typical geriatric profile (frail older patient with multiple comorbidities, polypharmacy, and functional dependence) [8, 9]. Elderly patients with cancer are more frequently referred to palliative care services (hospices, palliative care units, or palliative hospital consultation) than elderly patients without cancer, but not as frequently as suggested by the reponders of the survey. This can be partly due to the shortage of number of places available in palliative care units, but also because staff in palliative care units often lack training in specific geriatric aspects of care. Nevertheless, elderly patients in need of palliative care should have the same opportunity as younger patients [10, 11]. Differences in services available in the various European countries may be explained by factors such as variations in health care organization (e.g., reimbursement policy), in referral criteria and medical culture [12, 13, 14]. These aspects were not explored in the survey, whereas differences in legislation were observed. Northern and western European countries report having statements from professional associations and governmental regulations concerning advance care planning. However, this is not frequent in southern and eastern Europe. Almost all European countries report having governmental laws regulating euthanasia/PAS; however the right to receive palliative care is—unfortunately—less often regulated. Guidelines concerning withholding/ withdrawal of artificial nutrition/hydration and do-not-resuscitate orders are less frequently written by professional organizations. Given the fact that health care providers often struggle with ethical questions concerning withholding/withdrawal of therapies and the high prevalence of such decisions in an elderly population, it might be desirable that more attention from professional associations is given to this topic [15, 16]. The question remains whether it is advisable to have governments regulate these decisions. Although geriatrics and palliative medicine have much in common, including an emphasis on optimizing quality of life and function, geriatric palliative medicine is distinct in its focus on provision of care in long-term settings rather than in home

care [17]. Specialist palliative health care providers should also be educated in other geriatric aspects of palliative care, such as atypical presentation of symptoms, multiple comorbidities, and geriatric syndromes. Conversely, geriatricians need to learn palliative care to do their work [18]. The present study has some limitations. Our data are not representative of the large number of countries constituting Europe in 2009, in particular only a small number of eastern European countries were included. However, it was important to have identified geriatricians with special interest in palliative medicine and palliative care physicians in the different countries for the accuracy of responses. Furthermore, the response of appropriateness of care is probably not completely representative of all professionals involved in the care of elderly patients.

Conclusions The priorities for improving geriatric palliative medicine should be to (1) develop palliative specialized care in home care and long-term care facilities for non-cancer trajectories of dying, (2) attract more psychologists in these palliative consultation teams in Europe, (3) promote specialized palliative care for elderly patients with cancer who probably do not have the same access to palliative care units compared to younger patients with malignant disease, and (4) encourage professional associations to develop guidelines concerning withdrawal/withholding of therapies and to start a debate on advisability for governmental regulation of these medical decisions.

Corresponding address

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R. Piers Department of Geriatric Medicine University Hospital Ghent De Pintelaan 185, 9000 Gent Belgien [email protected] Acknowledgments.  We are extremely grateful to the designated participants from all countries. Conflict of interest.  The corresponding author states that there are no conflicts of interest.

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