ABSTRACT
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'.
Subject(s)
Deep Sedation , Suicide, Assisted , Terminal Care , Death , Health Personnel , Humans , Palliative CareABSTRACT
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.
ABSTRACT
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.
Subject(s)
Suicide, Assisted , Terminal Care , Canada , Humans , Oregon , Palliative Care , QuebecABSTRACT
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.
Subject(s)
Palliative Care , Suicide, Assisted , Belgium , Canada , Humans , SwitzerlandABSTRACT
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.
Subject(s)
Euthanasia , Opioid-Related Disorders , Humans , Morals , Palliative CareABSTRACT
[This corrects the article DOI: 10.1371/journal.pone.0146184.].
ABSTRACT
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.
Subject(s)
Health Personnel/ethics , Health Personnel/psychology , Morals , Professional-Patient Relations , Vulnerable Populations , Adaptation, Psychological , Conflict, Psychological , Ethical Analysis , Humans , Philosophy, Medical , Qualitative Research , SwedenABSTRACT
BACKGROUND: Surveys on attitudes towards assisted dying play an important role in informing public debate, policy and legislation. Unfortunately, surveys are often designed with insufficient attention to framing effects; that is, effects on the respondents' stated attitudes caused by question wording and context. The purpose of this study was to demonstrate and measure such framing effects. METHODS: Survey experiment in which an eight-question survey on attitudes towards assisted dying was distributed to Norwegian citizens through a web-based panel. Two variations of question wording as well as two variations of question order were employed. Respondents were randomized to receive one of four questionnaire versions. RESULTS: Three thousand and fifty responses were received. There were moderate to large question wording and question order effects. A majority of Norwegian citizens favour the legalization of assisted dying for patients with terminal or chronic disease. CONCLUSIONS: Stakeholders in the assisted dying debate need to acknowledge potential framing effects, and accordingly should interpret survey results with caution. The same holds for researchers who conduct attitude surveys in the field of bioethics.
Subject(s)
Attitude to Death , Communication , Euthanasia , Public Opinion , Research Design , Suicide, Assisted , Surveys and Questionnaires , Adolescent , Adult , Aged , Female , Humans , Language , Male , Middle Aged , Norway , Young AdultABSTRACT
This article is a response to Raphael Cohen-Almagor's paper entitled 'First do no harm: intentionally shortening lives of patients without their explicit request in Belgium'. His paper deals with very important matters of life and death, however its concept usage is in part misleading. For instance, the fact that medical murder takes place both in Belgium and the Netherlands is missed. Cohen-Almagor calls such acts 'worrying' and considers them to be 'abuse'. However, it remains an open question whether or not there can be such a thing as legitimate murder in a medical context. From the combined perspectives of justice and the duty to end unbearable suffering, there might be. Thus, key arguments for euthanasia are also prominent in an argument for medical murder.
Subject(s)
Ethics, Medical , Euthanasia, Active, Voluntary , Hippocratic Oath , Paternalism , Terminal Care/ethics , Value of Life , Belgium/epidemiology , Euthanasia, Active, Voluntary/ethics , Euthanasia, Active, Voluntary/legislation & jurisprudence , Humans , Informed Consent , Netherlands/epidemiology , Paternalism/ethics , Physician's Role , Practice Patterns, Physicians' , Social Responsibility , Terminal Care/legislation & jurisprudence , Terminology as TopicABSTRACT
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.
Subject(s)
Attitude to Death , Patient Preference , Patients/psychology , Consensus , Delphi Technique , Depression , Europe , Humans , Internationality , North America , Palliative Care , Pilot Projects , Stress, Psychological/psychology , Suicidal Ideation , Surveys and Questionnaires , Terminal Care , Terminally Ill/psychologyABSTRACT
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.
Subject(s)
Euthanasia, Active, Voluntary , Health Services Accessibility/standards , Palliative Care , Physician's Role , Suicide, Assisted , Terminally Ill/psychology , HumansABSTRACT
BACKGROUND: We wished to investigate prevailing attitudes among future doctors regarding legalisation of euthanasia and physician-assisted suicide. This issue is important, since any legalisation of these practices would confer a completely new role on doctors. MATERIAL AND METHOD: Attitudes were identified with the aid of a questionnaire-based survey among medical students in their 5th and 6th year of study in the four Norwegian medical schools. RESULTS: Altogether 531 students responded (59.5% of all students in these cohorts). Of these, 102 (19%) were of the opinion that euthanasia should be legalised in the case of terminal illness, 164 (31%) responded that physician-assisted suicide should be permitted for this indication, while 145 (28%) did not know. A minority of the respondents would permit euthanasia and physician-assisted suicide in other situations. Women and those who reported that religion was important to them were less positive than men to permitting euthanasia or physician-assisted suicide. INTERPRETATION: In most of the situations described, the majority of the students in this survey rejected legalisation. Opinions are more divided in the case of terminal illness, since a larger proportion is in favour of legalisation and more respondents are undecided.
Subject(s)
Euthanasia , Students, Medical/psychology , Suicide, Assisted , Attitude of Health Personnel , Attitude to Death , Attitude to Health , Euthanasia/legislation & jurisprudence , Euthanasia/psychology , Female , Humans , Male , Religion and Medicine , Sex Factors , Suicide, Assisted/legislation & jurisprudence , Suicide, Assisted/psychology , Surveys and QuestionnairesABSTRACT
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.