Achievements of palliative care and societal responses: An ethical perspective Diversity in palliative care needs, delivery and outcomes in Europe Lukas Radbruch (President of the European Association for Palliative Care)   Starting out from St. Christopher's Hospice in London, founded in 1967 by Dame Cicely Saunders, palliative care has spread out all over Europe in the last four decades. The European Institutions have acknowledged the need for palliative care, in 2003 Recommendation 24 of the Council of Europe has provided guidelines on high quality palliative care for the members states. Palliative care is accepted as an emerging medical discipline in many countries in Europe. The hospice movement has recruited a significant number of volunteers in some countries and has become a major social force, changing slowly the attitudes towards death and dying in the community. In Germany, hospice volunteers visit school classes to work with the children on dying, death and bereavement issues. Indeed, a recent report to the Parliamentary Assembly of the Council of Europe described palliative care as a model for innovative health care policy. However, there is a wide scope of development in the different European countries and regions. A report to the European Parliament produced by Martin Moreno et al. in 2008 revealed broad discrepancies in the provision of palliative care as well as in the vitality of development between European Union Member States. The statistics suggest profound differences between countries such as UK, Ireland, Sweden and the Netherlands, who were rated highest in these two indicators, and the countries of Greece, Portugal, Slovakia and Estonia. Similarly, the more recent report of the Economist on quality of death ranked the UK highest in the overall score and another 5 European countries among the top 10, but again other European countries such as Portugal, Turkey and Russia scored very low. These differences are due mostly to the differences in the health care systems in the European countries. Eastern Europe countries lack resources, as the economy is only slowly improving after the end of communist regimes. Legislation on narcotic laws is much more restrictive than in Western European countries, and patients will have problems to find a physician with palliative care expertise or to get opioid prescriptions. The provision of palliative care also depends on the underlying disease. Palliative care in Europe is focused primarily on cancer patients, and patients with other diseases such as advanced obstructive pulmonary disease often lack information about the option of palliative care or find it hard to access palliative care services. Problems to access palliative care have also been described for members of other ethnic groups, such as Irish travellers or migrants. These groups may also require specific care. Irish travellers for example may wish to die in an inpatient hospice rather than at home, as the family might not wish to continue to live in the trailer or home where someone has died. Cultural differences have become most evident in the legalization of euthanasia in some European countries (Netherlands, Belgium and Luxemburg). Differences in the ethical principles and frameworks of palliative care related to the use of euthanasia in these countries have been described. Cultural difference can also be observed in the ways healthcare provision is organized. An example of this is the role played by volunteers. In some countries volunteers play an integral and key role in supporting hospices and providing care in the home, while in others they are less central. In Germany, volunteers play a substantial role in hospice home care programs. Volunteering is well-organized, and sickness funds provide reimbursement for volunteer coordinators. By contrast, volunteering is a less recognized element in healthcare provision in Spain, where the tasks that volunteers could take on usually are delegated to family members, and the family may consider outside help as an intrusion rather than support. Language and culture also shape and infuse our attitudes towards death and dying. Words like the French 'crèver” or German 'krepieren' (to die in a terrible way) can be translated in many European languages. However, the distress conveyed by these words cannot be expressed in other languages, for example English, where expressions such as 'die', 'perish', or 'kick the bucket' are only weak substitutions. Our attitudes to pain and death are so saturated in cultural indicators that they become a part of the stereotype, for example with the English ‘stiff upper lip’, or the ‘Mediterranean Syndrome’. The diversity of needs and delivery may be illustrated with a case example. Gisela is 50 years old and has metastatic cancer of the left eye. She cannot obtain adequate symptom relief in spite of treatment with low doses of opioids, but she wants to go home. She has an eight-year-old son, and an abusive husband. She is entitled to respect for her autonomy, but her decision on whether to stay in hospital, to go home, or to enter a hospice, will depend on a number of factors, including: availability of the facilities; community support; the value of autonomy in the individuals and groups concerned; on family tradition; and on the model of decision making which dominates. All this factors will vary from country to country, from region to region, and from family to family. EAPC has prepared a white paper on standards and norms for hospice and palliative care across Europe based on a consensus procedure with the national associations in the European countries. This white paper reports on discrepancies in terminology and differences in the philosophy of palliative care, but also provides standards for structural, procedural and outcome quality of palliative care in different settings. This white paper will be used as a first step towards the development of a European standard providing high quality palliative care to all patients and care givers who need it. Address for correspondence: Prof. Dr. Lukas Radbruch President of the European Association for Palliative Care Klinik für Palliativmedizin, Universitätsklinikum Bonn Sigmund Freud Str. 25, 53127 Bonn Zentrum für Palliativmedizin, Malteser Krankenhaus Bonn / Rhein-Sieg Von Hompesch Str. 1, 53123 Bonn Lukas.Radbruch@malteser.org http://www.coe.int/t/dg3/health/Source/Rec(2003)24_en.pdf http://assembly.coe.int/Documents/AdoptedText/ta09/ERES1649.htm http://www.europarl.europa.eu/activities/committees/studies/download.do?file=21421 www.eiu.com/sponsor/lienfoundation/qualityofdeath http://www.eapcnet.org/download/forPublications/StandardsWP_EJPC2010.pdf

St. Christopher Hospice, London David Tasma, ein 40-jähriger agnostischer polnischer Exil-Jude aus dem Warschauer Ghetto, der an einem unheilbaren Tumor erkrankt war, wurde 1948 ca. 25mal von der jungen Sozialarbeiterin Cicely Saunders besucht. Er war zu dieser Zeit in einer chirurgischen Station eines Londoner Krankenhauses. Nach seinem Tod hinterließ er ihr 500 Pfund mit der Widmung: “Ich werde ein Fenster sein in Deinem Haus”. Sie brauchte 19 Jahre, um das Haus um dieses Fenster zu bauen, aber in 1967 wurde das St. Christopher Hospice in London eröffnet.

Palliative Care Development Europe Palliative care as a medical specialty in the UK and Ireland, as a subspecialty in Poland, Romania, Slovakia, Germany, France and Czech Republic Increasing number of academic chairs in palliative medicine, including nursing, psychosocial, spiritual and hospice care National strategies for palliative care, for example: Swiss National Strategy for Palliative Care 2010-12 UK End of Life Care Strategy 2008 More than 80.000 volunteers in Germany trained Centeno et al PallMed 21 (2007) 683-7 Palliative medicine has official certification in seven European countries (Table 1). Full-specialty status exists in the UK (1987) and Ireland (1995). In other countries, palliative medicine is regarded as a sub-specialty, which consists in a second specialization In 10 countries there was an evidence of discussion and actions in process relating to certification in palliative medicine (Table 2). In the Czech Republic, Norway and Sweden, the certification process is in an advanced stage of development; in the Czech Republic, the plans are for a specialty in palliative medicine and pain management. The process of certification has also started in Finland, Iceland and Spain. In Latvia, palliative medicine is certified as a specific area, but work is being carried out to achieve sub-specialty certification. In Spain, the relevant qualification will be obtained following other specialty certification and is referred to as a ‘specific area of competency’. In Israel, discussions on the certification of palliative medicine as a sub-specialty are moving very quickly.12 Elsewhere the evidence is less clear, but there is information to show that there are at least postgraduate courses or university diplomas in: Italy, Lithuania and Portugal. In Belgium, Bosnia and Herzegovina, Estonia, Georgia, Hungary and Luxemburg, there are courses offered by different organizations (Table 3). following certification in a fullspecialty; this is the case in Poland (1999), Romania (2000), Slovakia (2005) and Germany (2006). During the final stages of preparing this paper, we earned that certification for palliative care physicians was approved in France in the early months of 2007.1

WHO Executive Board January 2014 Resolution on palliative care Initiated by Panama, supported by Australia, Chile, Ghana, Libyia, Malaysia, South Africa, Spain, Switzerland, USA World Health Assembly in June New: Public health approach with 4 elements: National strategies, adequate ressources, training and education, access to essential medicines 4

Palliative Care Development Germany: Legislation 2004 Palliative care units: fixed daily rates, no DRGs 2004 Volunteer services: reimbursement for coordinators 2007 Hospitals: code for complex palliative care 2007 Home : patients’ right for specialist palliative care 2009 ACP: Amendment to the guardianship law 2009 Medical training: palliative care mandatory 2010 Hospices: drugs of deceased patients can be redispensed Workgroup 5   The impact of the provision of adequate palliative care for patients with incurable and progressive disease is increasingly acknowledged in the public opinion, and palliative and hospice care are receiving increasing coverage in the media. The need to lay the foundations for this kind of care is undisputed by decision makers in the health care system as well. This is supported by recent changes in the German legislation. Right for hospice and palliative care The health service reform (Wettbewerbsstärkunggesetz) introduced among many other points a right  for adequate palliative home  care. This was followed by a discourse on the organisation of palliative care in the Joint Federal Committee and later in the national sickness funds associations and the Associations of Statutory Health Insurance Physicians. Only now the first contracts for specialist palliative home care are signed with specialist palliative care teams or multiprofessional networks who will deliver palliative care at home or in the nursing home with adequate reimbursement. However, in preparation for these contracts networks and teams with competent physicians, nurses and other professionals have been established. Advanced directives In September 2009 the third amendment to the guardianship law came into effect, regulating advanced directives and lasting power of attorney. This was preceded by intensive discussions on the importance of these measures, which can be used by patients to set down their preferences and wishes for end-of-life care in the event of losing their decision-making capacity. The amendment settles as law what has been court law for 6 years, following Supreme Court rules in 2003 and 2005, so no fundamental change is to be expected for clinical practice in palliative care. However, the lively discussion to different drafts of the amendment led to a significant increase in the awareness of clinical care givers, decision makers and – maybe most important – those concerned. Palliative medicine in the medical curriculum In contrast, largely unnoticed a new legislation regulating nursing assistance in the hospital was approved by both chambers of the German parliament and came into effect in September 2009. The central aim of the law is to ensure that disabled patients requiring special nursing assistance will have access to this assistance also during an inpatient stay in a hospital. However, a later significant addition to the draft introduced palliative medicine as mandatory in the medical curriculum. This was seen as the only option to improve the deficits in the care of severely ill or dying patients. Only very few universities (Aachen, Bonn, Göttingen, Munich) have included palliative medicine as a mandatory subject. Most will have to implement palliative care education in the curriculum in the next years, as medical students have to deliver a proof of performance from 2014 on. Hospice care The financial background of inpatient hospices was improved by another recent change in legislation. The amendment on medical-legal regulations changed hospice reimbursement in the social code. Patients do not have to pay subsidies and the sickness fund reimbursement for outpatient and inpatient hospice services are regulated and unified. Inpatient hospices still have to raise 10% of their budget, either by charity funding or by redistribution of other means. Outlook The recent changes in legislation offer a wealth of exciting options for hospice and palliative care in Germany. However, they also introduce changes that will influence the work climate considerably. With increasing acknowledgement of palliative care in the health care system new players enter the game, and conflicting interests may weaken hospice and palliative care with competition and power struggles. Palliative care thus has proceeded from the first phase of development to implementation in the health care system – from pioneers to standard care. This implies that established centres have to refocus their work, as good quality of clinical care may not be sufficient any longer. Networking and quality assurance are gaining importance. With the Hospice and Palliative care Evaluation (HOPE) the German Hospice Association and the German Association for Palliative Medicine offer a quality assurance programme which includes yearly benchmarking exercises. Gesetz zur Stärkung des Wettbewerbs in der Gesetzlichen Krankenversicherung (GKV-Wettbewerbsstärkungsgesetz - GKV-WSG) vom 26 März 2007 (BGBl. 2007 Teil I Nr. 11, S. 378), § 37b erläutern:„Gemeinsamer Bundesausschuss“ is…(Definition SGB V) composition: 3 partners erläutern „Kassenärztliche Bundesvereinigung“ is……(Definition SGB V) Drittes Gesetz zur Änderung des Betreuungsrechts vom 29. Juli 2009, (BtÄndG 3) (BGBl. 2009 Teil I Nr. 48, S. 2286) Gesetz zur Regelung des Assistenzpflegebedarfs im Krankenhaus vom 30. Juli 2009 (Bundesgesetzblatt 2009 Teil I Nr. 50, S. 2495) Art. 6, 7 Gesetz zur Änderung arzneimittelrechtlicher und anderer Vorschriften (AMG-ÄndG) vom 17. Juli 2009 (Bundesgesetzblatt 2009 Teil I Nr. 43, S.1990): Art 15 Nr. 02 ff: Kostentragung bei Palliativversorgung in Hospizen Sozialgesetzbuch Band 5, §39 und §37  Genauen Text des Gesetzes(§37b SGB V) verwenden?  auch stationär: § 37b Abs.2 SGB V)

Palliative Care Development Germany: Society Volunteers: 80.000 volunteers in hospice and palliative care Trained in hospice (and bereavement) care Media: Media week in November 2012 More than 40 films and documentaries Charta for the severely ill and dying: Round table with 50 society or health-policy related institutions The presence of volunteers in palliative care was considered important in all participating countries. In two countries (DE and NL) some settings consist of volunteers [R1] only whereas [R2] in Spain volunteer work does have less strength and recognition. In Spain, the tasks which are performed by volunteers in other countries are traditionally delegated to the family members and not to external services. In France volunteer work reduces the dependence rather on social and emotional support than on practical work. In Germany, the Netherlands and England the care of the patient in some type of settings is dependent on the presence of volunteers (see table 3). In Germany, the home and hospice care service relies on volunteers. In North-Rhine-Westphalia, for example, half of the 400 existing outpatient hospice settings are specialized in the coordination of volunteer work and completely rely on volunteers. Nevertheless, volunteer work is not a mandatory part of inpatient palliative care units. In Spain, each individual organisation decides whether or not to involve volunteers. The Cancer Care Hospice Foundation (CUDECA) coordinates the volunteers (57). The majority of Spanish volunteers contribute to home care. The minority is regional restricted because only in  [R1]Explain  [R2]Why whereas? I s there a relationship?

Hospice goes to School Germany Project week in primary schools with hospice volunteers Stories, films, playing, handicrafts, final presentation with parents Children and parents were really enthusiastic, and even the sceptics were not critical any more… (teacher) www.hospizmachtschule.de

Caring communities Community care palliative care delivered by professionals at the home of the patient Caring community care as part of the community life neighbors and volunteers in collaboration with professionals The presence of volunteers in palliative care was considered important in all participating countries. In two countries (DE and NL) some settings consist of volunteers [R1] only whereas [R2] in Spain volunteer work does have less strength and recognition. In Spain, the tasks which are performed by volunteers in other countries are traditionally delegated to the family members and not to external services. In France volunteer work reduces the dependence rather on social and emotional support than on practical work. In Germany, the Netherlands and England the care of the patient in some type of settings is dependent on the presence of volunteers (see table 3). In Germany, the home and hospice care service relies on volunteers. In North-Rhine-Westphalia, for example, half of the 400 existing outpatient hospice settings are specialized in the coordination of volunteer work and completely rely on volunteers. Nevertheless, volunteer work is not a mandatory part of inpatient palliative care units. In Spain, each individual organisation decides whether or not to involve volunteers. The Cancer Care Hospice Foundation (CUDECA) coordinates the volunteers (57). The majority of Spanish volunteers contribute to home care. The minority is regional restricted because only in  [R1]Explain  [R2]Why whereas? I s there a relationship?

Community Model Kerala, India Empowerment of the local community to look after the bed-ridden patients in their area Develop a cost-effective method for the provision of palliative care in the low/middle income setting The presence of volunteers in palliative care was considered important in all participating countries. In two countries (DE and NL) some settings consist of volunteers [R1] only whereas [R2] in Spain volunteer work does have less strength and recognition. In Spain, the tasks which are performed by volunteers in other countries are traditionally delegated to the family members and not to external services. In France volunteer work reduces the dependence rather on social and emotional support than on practical work. In Germany, the Netherlands and England the care of the patient in some type of settings is dependent on the presence of volunteers (see table 3). In Germany, the home and hospice care service relies on volunteers. In North-Rhine-Westphalia, for example, half of the 400 existing outpatient hospice settings are specialized in the coordination of volunteer work and completely rely on volunteers. Nevertheless, volunteer work is not a mandatory part of inpatient palliative care units. In Spain, each individual organisation decides whether or not to involve volunteers. The Cancer Care Hospice Foundation (CUDECA) coordinates the volunteers (57). The majority of Spanish volunteers contribute to home care. The minority is regional restricted because only in  [R1]Explain  [R2]Why whereas? I s there a relationship? Kumar. JPSM 33 (2007) 623-7

Cultural Differences

Ethnic Groups Ireland What would be considered the extended family in the settled community is the close family for Travellers… Travellers believed that speaking openly about serious illness, such as cancer, would cause the patient to give up hope… Travellers prefer hospital to hospice care, as hospital care represents hope… Travellers do not consider death at home acceptable… Family. Family is very important in Traveller life. What would be considered the extended family in the settled community is the close family for Travellers and can number two to three hundred people. At times of illness, the family is the priority; Travellers will put other demands on their time (such as jobs or courses) on hold and gather close to each other to know what is happening and support each other. The support of the family to prevent loneliness and isolation is also important. The participants were aware that large family gatherings of Travellers in hospitals caused stress and anxiety for hospital staff. In bereavement, Travellers were more likely to see family as a source of support (with spiritual advisers or priests) rather than bereavement counsellors. namely, openness of communication, differences Travellers noted between their style of communication and that of settled people and the effect of education. Travellers did not like to talk about cancer – they frequently blessed themselves and touched wood during the focus group discussion. Travellers believed that speaking openly about serious illness, such as cancer, would cause the patient to give up hope. The research participants said Travellers feared cancer because of the possibility of institutional care and death. In the focus groups they remarked on the difference between how medical staff and settled people spoke about serious illness and how travellers spoke of it. but also because of better education were less demonstrative and better able to deal with grief. Travellers attributed some of their own reaction to a death as evidence of their lack of education. Travellers are also aware that their lower level of knowledge about services and education puts them at a disadvantage. They appreciated staff who spent time ensuring they understood what was happening. This was one of the features of hospice care, which was appreciated by participants. Hope. The over-riding sense of the importance of hope, especially hope for cure and a longer life was clear in the discussions. Talking about illness, cancer, dying or death with the patient was avoided because it was felt it would cause the patient to give up hope and die. Hospitals were considered favourably as representing places of cure. As well as attending hospitals, Travellers also turned to traditional healers and religious leaders for cures. All the Travellers except for some of the younger women, spoke of the importance of having a priest present at the time of illness, dying and death. Place. Travellers feared institutional care because of the loneliness associated with it. They thought that being at home with family around them was the best place for those who were old and sick. Travellers prefer hospital to hospice care, as hospital care represents hope and hospice care, though appreciated by those who had experienced it, it was not considered appropriate because of its association with acknowledgement of inevitable death. Hospices were considered ‘the last resort’. Travellers do not consider death at home acceptable. The sadness and loneliness associated with a place of death can mean families burn trailers or board up houses and move temporarily, only returning to a house when it has been redecorated and blessed. McQuillan R, Van Doorslaer O, Pall Med 21 (2007) 635-41

Belgium „A substantial proportion of Belgian care givers seem to consider euthanasia as a medical act that, with due prudence, is in line with their commitment to palliative care.“ Bernheim et al. BMJ 336 (2008) 864-7

EAPC Task Force on Ethics The provision of euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care. `Terminal’ or `palliative’ sedation in those imminently dying must be distinguished from euthanasia. Matersvejd et al., Pall Med 17 (2003) 97-101

Request for Euthanasia Lack of information Efficacy of pain and symptom control Confusion on terminology What do patients mean and want? Ambivalence Anticipated suffering Burden to others Illusion of control Slippery slope

Euthanasia in the media Germany: newspapers 2006 / 2007 Dignity Autonomy Unsecurity Anxieties Hahnen et al. Ethik Med 21 (2009) 289 - 305

Request for Euthanasia Patients are involved in an active process of constructing the course of disease. They try to balance life time and anticipated agony  perception of time is distressing. Dying process is anticipated as terrible and scary  conflict with available schemes of a rapid and painless dying. Anticipated pictures (agony and dying process) are highly available  patients experience them as intrusive. Coping strategies are focused on avoidance. Die Bedeutung von Zeit relativiert sich am antizipierten Leid. Es findet eine Balancierung der Lebenszeit und antizipiertem Leid statt. Der Sterbeprozess wird im zeitlichen Verlauf (Stunden) antizipiert und als qualvoll, Angst auslösend beschrieben, was im Widerspruch zu verfügbaren Schemata über Sterben (Sekundentod, mit einem Schlag) steht. Leidensbilder werden antizipiert und erreichen einen intrusiven Charakter. Die Krankheitsverarbeitung fokussiert sich auf Vermeidungsstrategien. Veränderungen im Leben durch die Erkrankung bringen Verlust von Autonomie und Kontrolle. (Wunsch nach Sicherheit)! Entscheidungen treffen zu können ist Indikator für den Grad der eigenen Autonomie. Entlastung von privaten und professionellen Helfern wird durch die Maximierung von Autonomie, Kontrolle und Verantwortung angestrebt. Kontrolle über den Zeitpunkt des Sterbens schafft Sicherheit. Antizipiertes Leid (Zeit) bedeutet Unsicherheit. Palliativmedizin und Sterbewunsch schließt sich nicht gegenseitig aus. (Kontext) Sterbewunsch als Vermeidungsstrategie entsteht im Spiegel des Zeitempfindens. Es fehlen Gesprächspartner über den Sterbewunsch, sowohl im professionellen als auch im privaten Bereich. Ausdruck im Gespräch entspricht dem Bedürfnis wahrgenommen, ernst genommen zu werden. Pestinger et al. (submitted)

Sokrates (496 – 399 v.Chr.) The hour of departure has arrived, and we go our ways - I to die, and you to live. Which is better God only knows. J.L. David, 1796: Tod des Sokrates, Metropolitan Museum New York www.wikipedia.de: Sokrates (altgr. Σωκράτης Sōkrátēs * 469 v. Chr.; † 399 v. Chr., durch Gift hingerichtet) war ein für das abendländische Denken äußerst bedeutsamer griechischer Philosoph; er lebte und wirkte in Athen. Tod Jacques-Louis Davids Der Tod des Sokrates (1787) Der Verurteilung zum Tode ging ein Prozess voraus, in dem Sokrates wegen Gottlosigkeit und verderblichen Einflusses auf die Jugend angeklagt wurde. Gottlosigkeit (Asebie) bedeutete, nicht an die Staatsgötter Athens zu glauben, ein Verbrechen, das mit dem Tod durch Vergiften geahndet wurde. Diese Art von Prozessen wurde Asebieprozess genannt. In seiner überlieferten Verteidigungsrede stritt er beide Vorwürfe ab, indem er die Gründe für sein öffentliches Verhalten offenlegte. Dennoch wurde er mit knapper Stimmenmehrheit (281 von 500 Stimmen) von einem der zahlreichen demokratischen Gerichtshöfe (dikasteria) Athens für schuldig befunden. Nach damaligem Brauch durfte Sokrates nach der Schuldigsprechung eine Strafe für sich selbst vorschlagen. In diesem (zweiten) Teil seiner Verteidigungsrede erklärte Sokrates eben das Verhalten, das zu seiner Schuldigsprechung geführt hatte, für höchst nützlich, er könne daher keine Bestrafung vorschlagen, wo eine Belohnung angemessener sei. Die Richter verurteilten ihn nun mit einer Mehrheit von 361 Stimmen zum Tod durch Trinken des Schierlingsbechers. Sokrates hätte sein Leben retten können, wenn er bereit gewesen wäre, die Anklage als berechtigt anzuerkennen oder Athen zu verlassen, wie sein Freund Kriton ihm dies eindringlich nahelegte. Letzteres tat er nicht, da sein Daimonion ihm davon abriet. Außerdem betrachtete er die Flucht als Tat politischen Unrechts gegenüber den Gesetzen der Athener Bürger. Die Anklage als berechtigt anzunehmen, kam ebenso wenig in Frage. Er hielt die Wahrheit für wichtiger als sein Leben. Er versicherte, nur zum Besten des Staates gehandelt zu haben. Die Verhandlung und der Tod Sokrates' sind in Platons Schriften Apologie, Kriton und Phaidon und in Xenophons Apologie des Sokrates beschrieben.

Euthanasia in Belgium 1432 deaths in 2012 (1,35% of all deaths)

Slippery Slope

Conclusions The provision of euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care Patients wishing for hastened death need respectful communication and acknowledgement of their wish Information on range and efficacy of palliative care options is needed Legislation of euthanasia or physician-assisted suicide has inherent risks

Palliative Care: Making a Difference www.eapcnet.eu