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'.

Ought the level of sedation to be reduced during deep palliative sedation? A clinical and ethical analysis.

BACKGROUND: Deep palliative sedation (DPS) is applied as a response to refractory suffering at the end of life when symptoms cannot be relieved in an awake state. DPS entails a dilemma of whether to provide uninterrupted sedation-in which case DPS would turn into deep and continuous palliative sedation (DCPS) -to minimise the risk that any further intolerable suffering will occur or whether to pause sedation to avoid unnecessary sedation. DPS is problematic in that it leaves the patient 'socially dead' by eradicating their autonomy and conscious experiences. AIM: To perform a normative ethical analysis of whether guidelines should recommend attempting to elevate consciousness during DPS. DESIGN: A structured analysis based on the four principles of healthcare ethics and consideration of stakeholders' interests. RESULTS: When DPS is initiated it reflects that symptom relief is valued above the patient's ability to exercise autonomy and experience social interaction. However, if a decrease in symptom burden occurs, waking could be performed without patients experiencing suffering. Such pausing of deep sedation would satisfy the principles of autonomy and beneficence. Certain patients require substantial dose increases to maintain sedation. Waking such patients risks causing distressing symptoms. This does not happen if deep sedation is kept uninterrupted. Thus, the principle of non-maleficence points towards not pausing sedation. The authors' clinical ethics analysis demonstrates why other stakeholders' interests do not appear to override arguments in favour of providing uninterrupted sedation. CONCLUSION: Stopping or pausing DPS should always be considered, but should not be routinely attempted.

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.

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 analyze 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. About 16 studies were included: from Belgium (n = 4), Canada (n = 1), Switzerland (n = 2), and the U.S. (n = 9). We found that 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.

Distinction between euthanasia and palliative sedation is clear-cut.

This article is a response to Thomas David Riisfeldt's paper entitled 'Weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation'. It is shown that as far as euthanasia and palliative sedation are concerned, Riisfeldt has not established that a common ground, or a similarity, between the two is the relief of suffering. Quite the contrary, this is not characteristic of euthanasia, neither by definition nor from a clinical point of view. Hence, the argument hinges on a conceptually and empirically erroneous premise and is accordingly a non-starter.

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.

Misconstrual of EAPC's position paper on euthanasia.

This is a response to Barutta and Vollmann's article 'Physician-assisted death with limited access to palliative care.' I show how they misconstrue a key empirical statement made by the European Association for Palliative Care regarding legalisation of euthanasia and physician-assisted suicide. Additionally, I include some further remarks on the relationship between euthanasia and palliative care. I read with interest the article, which delineate well several positions and gives a nice overview of arguments presented on either side. I also found the line of argument unprejudiced and clear, and am sure people working within palliative care would benefit from reading it.

Intention, procedure, outcome and personhood in palliative sedation and euthanasia.

Palliative sedation at the end of life has become an important last-resort treatment strategy for managing refractory symptoms as well as a topic of controversy within palliative care. Furthermore, palliative sedation is prominent in the public debate about the possible legalisation of voluntary assisted dying (physician-assisted suicide and euthanasia). This article attempts to demonstrate that palliative sedation is fundamentally different from euthanasia when it comes to intention, procedure, outcome and the status of the person. Nonetheless, palliative sedation in its most radical form of terminal deep sedation parallels euthanasia in one respect: both end the experience of suffering. However, only the latter intentionally ends life and also has this as its goal. There is the danger that deep sedation could bring death forward in time due to particular side effects of the treatment. Still that would, if it happens, not be intended, and accordingly is defensible in view of the doctrine of double effect.

Deep and continuous palliative sedation (terminal sedation): clinical-ethical and philosophical aspects.

Terminal sedation continues to fuel debate. When confronted with a patient for whom terminal sedation is considered a possible treatment option, decision making can be difficult. In this paper we focus on the clinical-ethical issues, with an aim to provide clinicians with ways of framing the issue from an ethical point of view. In addition to the clinical-ethical issues, terminal sedation touches upon interesting and complex questions of an essentially philosophical nature. What it means to be a "person" is one such question, and is a topic that is relevant to clinical, daily practice. Accordingly, in the latter part of this paper we draw briefly on selected philosophical positions to elucidate this question. A doctor's belief of what it means to be a "person" might well affect their actions. For example, if a doctor believes terminal sedation involves the destruction of the person, they might not be willing to proceed with it.

Attitudes towards, and wishes for, euthanasia in advanced cancer patients at a palliative medicine unit.

BACKGROUND: Most studies on attitudes towards euthanasia and physician-assisted suicide (PAS) have been conducted in healthy populations. The aim of this study is to explore and describe attitudes towards, and wishes for, euthanasia/PAS in cancer patients with short life expectancy. METHOD: Semi-structured interviews with 18 cancer patients with a life expectancy of less than nine months. All patients were recruited from an inpatient palliative medicine unit. RESULTS: Patients holding a positive attitude towards euthanasia/PAS do not necessarily want euthanasia/PAS for themselves. Wishes are different from requests for euthanasia/PAS. Fear of future pain and a painful death were the main reasons given for a possible wish for euthanasia/PAS. Worries about minimal quality of life and lack of hope also contributed to such thoughts. Wishes for euthanasia/PAS were hypothetical; they were future oriented and with a prerequisite that intense pain, lack of quality of life and/or hope had to be present. Additionally, wishes were fluctuating and ambivalent. CONCLUSION: The wish to die in these patients does not seem to be constant. Rather, this wish is more appropriately seen as an ambivalent and fluctuating mental 'solution' for the future. Health care providers should be aware of this when responding to utterances regarding euthanasia/PAS.