Carlo Leget

Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care

Background: In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. Aim: This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. Design: Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process Participants: A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. Results: Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. Conclusion: The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash.

Dealing With Delicate Issues in Continuous Deep Sedation Varying Practices Among Dutch Medical Specialists, General Practitioners, and Nursing Home Physicians

BACKGROUND This article examines delicate issues in continuous deep sedation (CDS) from the perspectives of different types of physicians. The following sensitive issues involved in CDS were investigated: artificial hydration, sedation for nonphysical discomfort, the relationship between CDS and euthanasia, and patient involvement in decision making for CDS. METHODS A structured retrospective questionnaire concerning the most recent case of CDS during the past 12 months was sent to a sample of medical specialists (n = 727), general practitioners (n = 626), and nursing home physicians (n = 111). RESULTS Response rates were 26.4% for medical specialists, 37.4% for general practitioners, and 59.5% for nursing home physicians. Indications for CDS differed among the types of physicians. General practitioners (25.0%) were most often confronted with a patient request for euthanasia before starting CDS compared with medical specialists (8.9%) and nursing home physicians (6.5%). A decision to forgo artificial hydration in CDS was more often made by nursing home physicians (91.3%) compared with medical specialists (53.7%) and general practitioners (51.2%). Shorter survival was found for patients sedated for nonphysical discomfort (vs other patients) by general practitioners. Among all patients, 74.5% were involved in decision making before the start of CDS. CONCLUSIONS The present study demonstrates notable differences in CDS practice among various types of physicians. To what extent this is related to different patient populations or to different expertise requires further investigation. The use of CDS for nonphysical discomfort calls for critical examination to avoid ambiguous practice.

The Caring Relationship in Hospice Care: An analysis based on the ethics of the caring conversation

Good nursing is more than exercising a specific set of skills. It involves the personal identity of the nurse. The aim of this article is to answer two questions: (1) what kind of person should the hospice nurse be? and (2) how should the hospice nurse engage in caring conversations? To answer these questions we analyse a nurse’s story that is intended to be a profile of an exemplary hospice nurse. This story was constructed from an analysis of five semistructured interviews with hospice nurses, based on the ‘ethics of the caring conversation’, which is inspired by the ethical perspective of Paul Ricoeur. The research questions concentrate on the norms of respect, responsibility and reciprocity, which are integral parts of the ‘ethics of the caring conversation’.

Analyzing dignity: a perspective from the ethics of care

The concept of dignity is notoriously vague. In this paper it is argued that the reason for this is that there are three versions of dignity that are often confused. First we will take a short look at the history of the concept of dignity in order to demonstrate how already from Roman Antiquity two versions of dignity can be distinguished. Subsequently, the third version will be introduced and it will be argued that although the three versions of dignity hang together, they should also be clearly distinguished in order to avoid confusion. The reason for distinguishing the three versions is because all three of them are only partially effective. This will be demonstrated by taking the discussion about voluntary ‘dying with dignity’ as an example. Inspired by both Paul Ricoeur’s concept of ethics and the ethics of care a proposition will be done as to how the three versions of dignity may sustain each other and help achieve what neither one of the versions can do on its own.

Who wants to live forever? Three arguments against extending the human lifespan

The wish to extend the human lifespan has a long tradition in many cultures. Optimistic views of the possibility of achieving this goal through the latest developments in medicine feature increasingly in serious scientific and philosophical discussion. The authors of this paper argue that research with the explicit aim of extending the human lifespan is both undesirable and morally unacceptable. They present three serious objections, relating to justice, the community and the meaning of life.

Compassion as a basis for ethics in medical education

The idea that ethics is a matter of personal feeling is a dogma widespread among medical students. Because emotivism is firmly rooted in contemporary culture, the authors think that focusing on personal feeling can be an important point of departure for moral education. In this contribution, they clarify how personal feelings can be a solid basis for moral education by focusing on the analysis of compassion by the French phenomenologist Emmanuel Housset. This leads to three important issues regarding ethics education: (1) the necessity of a continuous attention for and interpretation of the meaning of language, (2) the importance of examining what aspect of “the other” touches one and what it is that evokes the urge to act morally and (3) the need to relate oneself to the community, both to the medical community and to collectively formulated rules and laws. These issues can have a place in medical education by means of an ethical portfolio that supports students in their moral development. First, keeping a portfolio will improve their expression of the moral dimension of medical practice. Second, the effects of self-knowledge and language mastery will limit the pitfalls of emotivism and ethical subjectivism and will stimulate the inclination to really encounter the other. Third, it will show medical students from the start that their moral responsibility is more than following rules and that they are involved personally.

Should palliative care patients' hope be truthful, helpful or valuable? An interpretative synthesis of literature describing healthcare professionals' perspectives on hope of palliative care patients

Background: Healthcare professionals’ perspectives on palliative care patients’ hope influence communication. However, these perspectives have hardly been examined. Aim: To describe healthcare professionals’ perspectives on palliative care patients’ hope found in the literature. Design: The interpretative synthesis consisted of a quality assessment and thematic analysis of included articles. Data sources: Literature search of articles between January 1980 and July 2011 in PubMed, CINAHL, PsycINFO and EMBASE and references of included studies. Search strategy: (palliat* or hospice or terminal* in title/abstract or as subject heading) AND (hope* or hoping or desir* or optimis* in title or as subject heading). Results: Of the 37 articles, 31 articles were of sufficient quality. The majority of these 31 articles described perspectives of nurses or physicians. Three perspectives on hope of palliative care patients were found: (1) realistic perspective – hope as an expectation should be truthful, and healthcare professionals focused on adjusting hope to truth, (2) functional perspective – hope as coping mechanism should help patients, and professionals focused on fostering hope, and (3) narrative perspective – hope as meaning should be valuable for patients, and healthcare professionals focused on interpreting it. Conclusions: Healthcare professionals who are able to work with three perspectives on hope may improve their communication with their palliative care patients, which leads to a better quality of care.

Experiences and motivations underlying wishes to die in older people who are tired of living: a research area in its infancy.

The wish to die in older people who are tired of living and the possibilities to organize death are currently being discussed within the debate on self-determination and physician-assisted suicide. Until now insight into the experiences and thoughts of people who are tired of life but not suffering from a severe depression or a life-threatening disease is lacking. Studies focussing specifically on this topic are rare. This review provides an overview of this research area in its infancy. The existential impact of age-related loss experiences play an important role in developing a wish to die. Other influencing factors are: personal characteristics, biographical factors, social context, perceptions and values. Further research to experiences and motivations underlying these specific age-related wishes to die and the existential impact of the loss-experiences seems necessary to deepen the understanding of this group of older people and for the development of policy and good care.

Why shared decision making is not good enough: lessons from patients

A closer look at the lived illness experiences of medical professionals themselves shows that shared decision making is in need of a logic of care. This paper underlines that medical decision making inevitably takes place in a messy and uncertain context in which sharing responsibilities may impose a considerable burden on patients. A better understanding of patients’ lived experiences enables healthcare professionals to attune to what individual patients deem important in their lives. This will contribute to making medical decisions in a good and caring manner, taking into account the lived experience of being ill.

Quality indicators for palliative care: Debates and dilemmas

Meaningful engagement in palliative care is widely believed to enhance the quality of life and quality of care for patients and their families.1 It is embedded within the mission statement of the European Association for Palliative Care (EAPC), which seeks to ‘bring together many voices to forge a vision of excellence in palliative care that meets the needs of patients and families. It strives to develop and promote palliative care in Europe through information, education and research using multi-professional collaboration while engaging with stakeholders at all levels’ (www.eapcnet.eu). The purpose of this editorial is to draw together the debates about quality indicators for palliative care that have been highlighted in the lively blogs posted on the EAPC site (www.eapcnet.wordpress.com) since April 2012. The context to the debates that emerged was the opportunity to influence the World Health Assembly’s adoption of a global health indicator for non-communicable diseases (NCDs) that focused on palliative care for the first time. This was not a stand-alone indicator, but one of 12 indicators that could provide the framework to influence health for the next decade or so. It is noteworthy that this is the first time that palliative care has received major attention in global health politics. The proposed indicator was ‘Access to palliative care assessed by morphineequivalent consumption of strong opioid analgesia (excluding methadone) per death from cancer’. It was the selection of this indicator that is so controversial. The debates hinged around the question of whether is it better to have an indicator, even if not ideal, than none at all. There are also tensions around the suitability of indicators for palliative care that had to be applicable across the world, even when there is great diversity in demographic and epidemiological challenges, socio-economic resources, health care systems, and in the availability and access to palliative care services.2,3 It is recognised that indicators should be readily measurable, and a prerequisite that data could be collected by all countries. Another tension that emerged was between proponents of ‘advocacy’, where the intent is to promote a course of action based on beliefs and values about ‘a greater good’ or from those where a rigorous analysis of the best available scientific evidence to ensure sustainability and to reduce harm to other population groups was the main driver. It also raises questions about where such discussions are held: is it in research journals and professional conferences or in the public media? Indeed, what is defined as ‘best evidence’ is also a debate and hotly disputed.