Relational autonomy in the care of the vulnerable: health care professionals' reasoning in Moral Case Deliberation (MCD)

In Moral Case Deliberation (MCD), healthcare professionals discuss ethically difficult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical reflection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals' moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. The moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justifications for influencing the patient, the incapacitated patient's nebulous interests, and coping with the conflict between using coercion to achieve good while protecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals reflected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, defining their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient's autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients' influence and at the same time take responsibility for their needs as vulnerable humans

The relationship of palliative care with assisted dying where assisted dying is lawful: A systematic scoping review of the literature

Context: A central approach of palliative care has been to provide holistic care for people who are dying, terminally ill or facing life-limiting illnesses while neither hastening nor postponing death. Assisted dying laws allow eligible individuals to receive medically administered or self-administered medication from a health provider to end their life. The implementation of these laws in a growing number of jurisdictions therefore poses certain challenges for palliative care. Objectives: To analyse the research literature about the relationship of assisted dying with palliative care, in countries where it is lawful. Methods: A five-stage scoping review process was adapted from the Joanna Briggs Institute. Data sources searched through October 2018 were MEDLINE, CINAHL, PsychINFO, SCOPUS, and ProQuest dissertations and theses, with additional material identified through hand searching. Research studies of any design were included, but editorials or opinion articles were excluded. Results: After reviewing 5778 references from searches, 105 were subject to full-text review. 16 studies were included: from Belgium (4), Canada (1), Switzerland (2) and the United States (9). We found the relationship between assisted dying and palliative care practices in these locations took varied and sometimes combined forms: supportive, neutral, coexisting, not mutually exclusive, integrated, synergistic, cooperative, collaborative, opposed, ambivalent and conflicted. Conclusion: The studies in this review cast only partial light on challenges faced by palliative care when assisted dying is legal. There is pressing need for more research on the involvement of palliative care in the developing practices of assisted dying, across a growing number of jurisdictions

Medicalisation, suffering and control at the end of life: The interplay of deep continuous palliative sedation and assisted dying

Medicalisation is a pervasive feature of contemporary end of life and dying in Western Europe and North America. In this article, we focus on the relationship between two specific aspects of the medicalisation of dying: deep continuous palliative sedation until death and assisted dying. We draw upon a qualitative interview study with 29 health professionals from three jurisdictions where assisted dying is lawful: Flanders, Belgium; Oregon, USA; and Quebec, Canada. Our findings demonstrate that the relationship between palliative sedation and assisted dying is often perceived as fluid and complex. This is inconsistent with current laws as well as with ethical and clinical guidelines according to which the two are categorically distinct. The article contributes to the literature examining health professionals’ opinions and experiences. Moreover, our findings inform a discussion about emergent themes: suffering, timing, autonomy and control – which appear central in the wider discourse in which both palliative sedation and assisted dying are situated, and which in turn relate to the wider ideas about what constitutes a ‘good death’

Assisted dying and palliative care in three jurisdictions: Flanders, Oregon, and Quebec

Background: An increasing number of jurisdictions around the world are legalizing assisted dying. This creates a particular challenge for the field of palliative care, which often precludes producing premature death by the injection or self-administration of lethal medications upon a patient’s voluntary request. A 2019 systematic scoping review of the literature about the relationship between palliative care and assisted dying in contexts where assisted dying is lawful, found just 16 relevant studies that included varied and combined stances ranging from complete opposition, to collaboration and integration. Building on that review, the present study was conducted in Quebec (Canada), Flanders (Belgium), and Oregon (USA), with the objective of exploring the relationship between palliative care and assisted dying in these settings, from the perspective of clinicians and other professionals involved in the practice. Methods: Semi-structured in-depth qualitative interviews were conducted with 29 professionals from Oregon [10], Quebec [9] and Flanders [10]. Participants were involved in the development of policy, management, or delivery of end of life care services in each of the jurisdictions. Data was analyzed thematically and followed a procedure of data immersion, and the construction of a thematic and interpretive account. Results: Three themes were identified from each of the locations. Flanders: the integrated approach; discontents in palliative care; concerns about liberalization of assisted dying laws. Oregon: the role of hospice; non-standardized protocols and policies; concerns about access to medications and care. Quebec: a contested relationship; the special situation of independent hospice; lack of knowledge about and access to palliative care. Conclusions: No clear and uniform relationship between palliative care and assisted dying can be identified in any of the three locations. The context and practicalities of how assisted dying is being implemented alongside access to palliative care need to be considered to inform future laws. We seek a better understanding of whether and in what ways assisted dying presents a threat to palliative care

An International Consensus Definition of the Wish to Hasten Death and Its Related Factors

Background: The desire for hastened death or wish to hasten death (WTHD) that is experienced by some patients with advanced illness is a complex phenomenon for which no widely accepted definition exists. This lack of a common conceptualization hinders understanding and cooperation between clinicians and researchers. The aim of this study was to develop an internationally agreed definition of the WTHD. Methods: Following an exhaustive literature review, a modified nominal group process and an international, modified Delphi process were carried out. The nominal group served to produce a preliminary definition that was then subjected to a Delphi process in which 24 experts from 19 institutions from Europe, Canada and the USA participated. Delphi responses and comments were analysed using a pre-established strategy. Findings: All 24 experts completed the three rounds of the Delphi process, and all the proposed statements achieved at least 79% agreement. Key concepts in the final definition include the WTHD as a reaction to suffering, the fact that such a wish is not always expressed spontaneously, and the need to distinguish the WTHD from the acceptance of impending death or from a wish to die naturally, although preferably soon. The proposed definition also makes reference to possible factors related to the WTHD. Conclusions: This international consensus definition of the WTHD should make it easier for clinicians and researchers to share their knowledge. This would foster an improved understanding of the phenomenon and help in developing strategies for early therapeutic intervention

An International Consensus Definition of the Wish to Hasten Death and Its Related Factors

Abstract Backgroun

An international consensus definition of thewish to hasten death and Its related factors

Abstract Background The desire for hastened death or wish to hasten death (WTHD) that is experienced by some patients with advanced illness is a complex phenomenon for which no widely accepted definition exists. This lack of a common conceptualization hinders understanding and cooperation between clinicians and researchers. The aim of this study was to develop an internationally agreed definition of the WTHD. Methods Following an exhaustive literature review, a modified nominal group process and an international, modified Delphi process were carried out. The nominal group served to produce a preliminary definition that was then subjected to a Delphi process in which 24 experts from 19 institutions from Europe, Canada and the USA participated. Delphi responses and comments were analysed using a pre-established strategy. Findings All 24 experts completed the three rounds of the Delphi process, and all the proposed statements achieved at least 79% agreement. Key concepts in the final definition include the WTHD as a reaction to suffering, the fact that such a wish is not always expressed spontaneously, and the need to distinguish the WTHD from the acceptance of impending death or from a wish to die naturally, although preferably soon. The proposed definition also makes reference to possible factors related to the WTHD. Conclusions This international consensus definition of the WTHD should make it easier for clinicians and researchers to share their knowledge. This would foster an improved understanding of the phenomenon and help in developing strategies for early therapeutic intervention

Den medisinske selvmorderen i individualismens tid

SAMMENDRAGArtikkelen starter med en drøfting av selvmordets rasjonalitetsett fra en filosofisk synsvinkel. Deretter forklares og definerestermene «eutanasi» og «legeassistert selvmord», som beggefortolkes moralsk som former for kontrollerte, medikaliserteselvmord. Det gis deretter en beskrivelse av hvor normalisertbegge deler har blitt i BeNeLux-landene, og at dette kan lesessom uttrykk for en individualistisk kultur der kontroll med egendød er blitt stadig viktigere. Artikkelen beskriver også hvordanpraksisen med assistert selvmord i Sveits er spesiell vedat den ikke involverer helsepersonell i særlig grad. Dernestbeskrives norsk forskning på kreftpasienters forhold til eutanasiog legeassistert selvmord, samt at pasienters ønske omdisse typene unaturlig død kan være svært komplekse. Til sluttproblematiseres forestillingen om at vi vet vår eget beste, ogdet antydes at vi er mindre rasjonelle enn vi har for vane å tro.The present article takes as its point of departure a discussionof the rationality of suicide from a philosophical point of view.It goes on to explain and define the terms “euthanasia” and“physician-assisted suicide”, which are both given a moralinterpretation as forms of controlled, medicalised suicide.Subsequently, a description is offered of how normalised bothpractices have become in the BeNeLux countries, and that thisphenomenon may be seen as an expression of an individualisticculture in which control of one’s own death has gained increasedimportance over the years. The article also delineates in whatway the practice of assisted suicide in Switzerland is particular inthat health care personnel are involved in a quite limited fashion.There follows a presentation of research carried out in Norwaydirected at cancer patients regarding their views of, and attitudestowards, euthanasia and physician-assisted suicide. It is alsopointed out that a wish for either type of unnatural death can bevery complex. The article ends by casting doubt on the idea thatwe know our own best interests, and it is suggested that we areless rational than we normally see ourselves as