Involvement of palliative care in euthanasia practice in a context of legalized euthanasia : a population-based mortality follow-back study

Background: In the international debate about assisted dying, it is commonly stated that euthanasia is incompatible with palliative care. In Belgium, where euthanasia was legalized in 2002, the Federation for Palliative Care Flanders has endorsed the viewpoint that euthanasia can be embedded in palliative care. Aim: To examine the involvement of palliative care services in euthanasia practice in a context of legalized euthanasia. Design: Population-based mortality follow-back survey. Setting/participants: Physicians attending a random sample of 6871 deaths in Flanders, Belgium, in 2013. Results: People requesting euthanasia were more likely to have received palliative care (70.9%) than other people dying non-suddenly (45.2%) (odds ratio=2.1 (95% confidence interval, 1.5-2.9)). The most frequently indicated reasons for non-referral to a palliative care service in those requesting euthanasia were that existing care already sufficiently addressed the patient's palliative and supportive care needs (56.5%) and that the patient did not want to be referred (26.1%). The likelihood of a request being granted did not differ between cases with or without palliative care involvement. Palliative care professionals were involved in the decision-making process and/or performance of euthanasia in 59.8% of all euthanasia deaths; this involvement was higher in hospitals (76.0%) than at home (47.0%) or in nursing homes (49.5%). Conclusion: In Flanders, in a context of legalized euthanasia, euthanasia and palliative care do not seem to be contradictory practices. A substantial proportion of people who make a euthanasia request are seen by palliative care services, and for a majority of these, the request is granted

Controversies surrounding continuous deep sedation at the end of life : the parliamentary and societal debates in France

Background: Continuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying. The practice is generally considered to be legal as a form of symptom control, although this is mostly only assumed. France has passed an amendment to the Public Health Act that would grant certain terminally ill patients an explicit right to continuous deep sedation until they pass away. Such a framework would be unique in the world. Discussion: In this paper we will highlight and reflect on four relevant aspects and shortcomings of the proposed bill. First, that the bill suggests that continuous deeps sedation should be considered as a sui generis practice. Second, that it requires that sedation should always be accompanied by the withholding of all artificial nutrition and hydration. In the most recently amended version of the legal proposal it is stated that life sustaining treatments are withheld unless the patient objects. Third, that the French bill would not require that the suffering for which continuous deep sedation is initiated is unbearable. Fourth, the question as to whether the proposal should be considered as a way to avoid having to decriminalise euthanasia and/or PAS or, on the contrary, as a veiled way to decriminalise these practices. Summary: The French proposal to amend the Public Health Act to include a right to continuous deep sedation for some patients is a unique opportunity to clarify the legality of continuous deep sedation as an end-of-life practice. Moreover, it would recognize that the practice of continuous deep sedation raises ethical and legal issues that are different from those raised by symptom control on the one hand and assisted dying on the other hand. Nevertheless, there are still various issues of significant ethical concern in the French legislative proposal

Characteristics of Belgian 'life-ending acts without explicit patient request' : a large-scale death certificate survey revisited

BACKGROUND: “Life-ending acts without explicit patient request,” as identified in robust international studies, are central in current debates on physician-assisted dying. Despite their contentiousness, little attention has been paid to their actual characteristics and to what extent they truly represent nonvoluntary termination of life. METHODS: We analyzed the 66 cases of life-ending acts without explicit patient request identified in a large-scale survey of physicians certifying a representative sample of deaths (n = 6927) in Flanders, Belgium, in 2007. The characteristics we studied included physicians’ labelling of the act, treatment course and doses used, and patient involvement in the decision. RESULTS: In most cases (87.9%), physicians labelled their acts in terms of symptom treatment rather than in terms of ending life. By comparing drug combinations and doses of opioids used, we found that the life-ending acts were similar to intensified pain and symptom treatment and were distinct from euthanasia. In 45 cases, there was at least 1 characteristic inconsistent with the common understanding of the practice: either patients had previously expressed a wish for ending life (16/66, 24.4%), physicians reported that the administered doses had not been higher than necessary to relieve suffering (22/66, 33.3%), or both (7/66, 10.6%). INTERPRETATION: Most of the cases we studied did not fit the label of “nonvoluntary life-ending” for at least 1 of the following reasons: the drugs were administered with a focus on symptom control; a hastened death was highly unlikely; or the act was taken in accordance with the patient’s previously expressed wishes. Thus, we recommend a more nuanced view of life-ending acts without explicit patient request in the debate on physician-assisted dying

Trends in continuous deep sedation until death between 2007 and 2013 : a repeated nationwide survey

Background: Continuous deep sedation until death is a highly debated medical practice, particularly regarding its potential to hasten death and its proper use in end-of-life care. A thorough analysis of important trends in this practice is needed to identify potentially problematic developments. This study aims to examine trends in the prevalence and practice characteristics of continuous deep sedation until death in Flanders, Belgium between 2007 and 2013, and to study variation on physicians’ degree of palliative training. Methods: Population-based death certificate study in 2007 and 2013 in Flanders, Belgium. Reporting physicians received questionnaires about medical practices preceding the patient’s death. Patient characteristics, clinical characteristics (drugs used, duration, artificial nutrition/hydration, intention and consent), and palliative care training of attending physician were recorded. We posed the following question regarding continuous deep sedation: ‘Was the patient continuously and deeply sedated or kept in a coma until death by the use of one or more drugs’. Results: After the initial rise of continuous deep sedation to 14.5% in 2007 (95%CI 13.1%-15.9%), its use decreased to 12.0% in 2013 (95%CI 10.9%-13.2%). Compared with 2007, in 2013 opioids were less often used as sole drug and the decision to use continuous deep sedation was more often preceded by patient request. Compared to non-experts, palliative care experts more often used benzodiazepines and less often opioids, withheld artificial nutrition/hydration more often and performed sedation more often after a request from or with the consent of the patient or family. Conclusion: Worldwide, this study is the first to show a decrease in the prevalence of continuous deep sedation. Despite positive changes in performance and decision-making towards more compliance with due care requirements, there is still room for improvement in the use of recommended drugs and in the involvement of patients and relatives in the decision-making process

State of palliative care development in European Countries with and without legally regulated physician-assisted dying.

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Nursing and euthanasia : a narrative review of the nursing ethics literature

Background: Medical Assistance in Dying, also known as euthanasia or assisted suicide, is expanding internationally. Canada is the first country to permit Nurse Practitioners to provide euthanasia. These developments highlight the need for nurses to reflect upon the moral and ethical issues that euthanasia presents for nursing practice. Purpose: The purpose of this article is to provide a narrative review of the ethical arguments surrounding euthanasia in relationship to nursing practice. Methods: Systematic search and narrative review. Nine electronic databases were searched using vocabulary developed from a stage 1 search of Medline and CINAHL. Articles that analysed a focused ethical question related to euthanasia in the context of nursing practice were included. Articles were synthesized to provide an overview of the literature of nursing ethics and euthanasia. Ethical Considerations: This review was conducted as per established scientific guidelines. We have tried to be fair and respectful to the authors discussed. Findings: Forty-three articles were identified and arranged inductively into four themes: arguments from the nature of nursing; arguments from ethical principles, concepts and theories; arguments for moral consistency; and arguments from the nature of the social good. Key considerations included nursing's moral ontology, the nurse-patient relationship, potential impact on the profession, ethical principles and theories, moral culpability for acts versus omissions, the role of intention and the nature of the society in which euthanasia would be enacted. In many cases, the same assumptions, values, principles and theories were used to argue both for and against euthanasia. Discussion: The review identified a relative paucity of literature in light of the expansion of euthanasia internationally. However, the literature provided a fulsome range of positions for nurses to consider as they reflect on their own participation in euthanasia. Many of the arguments reviewed were not nursing-specific, but rather are relevant across healthcare disciplines. Arguments explicitly grounded within the nature of nursing and nurse-patient relationships warrant further exploration

Towards an assessment instrument for suffering in patients with psychiatric conditions : assessing cognitive validity

Background: Unbearable suffering is a key criterion in legally granting patients' euthanasia requests in Belgium yet a generally accepted definition of unbearable suffering remains elusive. The ability to understand and assess unbearable suffering is essential, particularly in patients with psychiatric conditions, as the underlying causes of these conditions are not always apparent. To enable research into when and why suffering experiences incite patients with psychiatric conditions to request euthanasia, and to help explore preventive and curative perspectives, the development of an assessment instrument is needed. Aims: To improve the cognitive validity of a large initial item pool used to assess the nature and extent of suffering in patients with psychiatric conditions. Method: Cognitive validity was established via two rounds of cognitive interviews with patients with psychiatric conditions with (n = 9) and without (n = 5) euthanasia requests. Results: During the first round of cognitive interviews, a variety of issues relating to content, form and language were reported and aspects that were missing were identified. During the second round, the items that had been amended were perceived as sufficiently easily to understand, sensitive to delicate nuances, comprehensive and easy to answer accurately. Neither research topic nor method were perceived as emotionally strenuous, but instead as positive, relevant, comforting and valuable. Conclusions: This research resulted in an item pool that covers the concept of suffering more adequately and comprehensively. Further research endeavours should examine potential differences in suffering experiences over time and in patients with psychiatric conditions with and without euthanasia requests. The appreciation patients demonstrated regarding their ability to speak extensively and openly about their suffering and wish to die further supports the need to allow patients to speak freely and honestly during consultations

Psychiatric patients requesting euthanasia : guidelines for sound clinical and ethical decision making

Background: Since Belgium legalised euthanasia, the number of performed euthanasia cases for psychological suffering in psychiatric patients has significantly increased, as well as the number of media reports on controversial cases. This has prompted several healthcare organisations and committees to develop policies on the management of these requests. Method: Five recent initiatives that offer guidance on euthanasia requests by psychiatric patients in Flanders were analysed: the protocol of Ghent University Hospital and advisory texts of the Flemish Federation of Psychiatry, the Brothers of Charity, the Belgian Advisory Committee on Bioethics, and Zorgnet-Icuro. These were examined via critical point-by-point reflection, focusing on all legal due care criteria in order to identify: 1) proposed measures to operationalise the evaluation of the legal criteria; 2) suggestions of additional safeguards going beyond these criteria; and 3) remaining fields of tension. Results: The initiatives are well in keeping with the legal requirements but are often more stringent. Additional safeguards that are formulated include the need for at least two positive advices from at least two psychiatrists; an a priori evaluation system; and a two-track approach, focusing simultaneously on the assessment of the patient's euthanasia request and on that person's continuing treatment. Although the initiatives are similar in intent, some differences in approach were found, reflecting different ethical stances towards euthanasia and an emphasis on practical clinical assessment versus broad ethical reflection. Conclusions: All initiatives offer useful guidance for the management of euthanasia requests by psychiatric patients. By providing information on, and proper operationalisations of, the legal due care criteria, these initiatives are important instruments to prevent potential abuses. Apart from the additional safeguards suggested, the importance of a decision-making policy that includes many actors (e.g. the patient's relatives and other care providers) and of good aftercare for the bereaved are rightly stressed. Shortcomings of the initiatives relate to the aftercare of patients whose euthanasia request is rejected, and to uncertainty regarding the way in which attending physicians should manage negative or conflicting advices, or patients' suicide threats in case of refusal. Given the scarcity of data on how thoroughly and uniformly requests are handled in practice, it is unclear to what extent the recommendations made in these guidelines are currently being implemented

'A palliative end-stage COPD patient does not exist' : a qualitative study of barriers to and facilitators for early integration of palliative home care for end-stage COPD

Early integration of palliative home care (PHC) might positively affect people with chronic obstructive pulmonary disease (COPD). However, PHC as a holistic approach is not well integrated in clinical practice at the end-stage COPD. General practitioners (GPs) and community nurses (CNs) are highly involved in primary and home care and could provide valuable perspectives about barriers to and facilitators for early integrated PHC in end-stage COPD. Three focus groups were organised with GPs (n = 28) and four with CNs (n = 28), transcribed verbatim and comparatively analysed. Barriers were related to the unpredictability of COPD, a lack of disease insight and resistance towards care of the patient, lack of cooperation and experience with PHC for professional caregivers, lack of education about early integrated PHC, insufficient continuity of care from hospital to home, and lack of communication about PHC between professional caregivers and with end-stage COPD patients. Facilitators were the use of trigger moments for early integrating PHC, such as after a hospital admission or when an end-stage COPD patient becomes oxygen-dependent or housebound, positive attitudes towards PHC in informal caregivers, more focus on early integration of PHC in professional caregivers' education, implementing advance care planning in healthcare and PHC systems, and enhancing communication about care and PHC. The results provide insights for clinical practice and the development of key components for successful practice in a phase 0-2 Early Integration of PHC for end-stage COPD (EPIC) trial, such as improving care integration, patients' disease insight and training PHC nurses in care for end-stage COPD