[The wish to hasten death: Definition, determinants, issues and perspectives]. / Le souhait de hâter la mort : définition, déterminants, enjeux et perspectives.

In palliative care, it is not uncommon for people with serious illnesses to wish to hasten their death. These wishes present considerable challenges for health care professionals. The purpose of this review is to support healthcare professionals in their understanding and apprehension of patients' wishes to hasten their death. In order to do so, we will present the definition of this wish, and then we will study it, based on three main components, which are intentions, motivations and interactions. The common thread of this review lies in the following question: how to best support the human who faces death?

Physician attitudes to voluntary assisted dying: a scoping review.

BACKGROUND: Voluntary assisted dying (VAD) became legal in the Australian state of Victoria on 19 June 2019 and will be legal in Western Australia from 2021. Other Australian states are progressing similar law reform processes. In Australia and internationally, doctors are central to the operation of all legal VAD regimes. It is broadly accepted that doctors, as a profession, are less in favour of VAD law reform than the rest of the community. To date, there has been little analysis of the factors that motivate doctors' support or opposition to legalised VAD in Australia. AIM: To review all studies reporting the attitudes of Australian doctors regarding the legalisation of VAD, including their willingness to participate in it, and to observe and record common themes in existing attitudinal data. DESIGN: Scoping review and thematic analysis of qualitative and quantitative data. DATA SOURCES: CINAHL, Embase, Scopus, PubMed and Informit were searched from inception to June 2019. RESULTS: 26 publications detailing 19 studies were identified. Thematic analysis of quantitative and qualitative findings was performed. Three overarching themes emerged. 'Attitudes towards regulation' encompassed doctors' orientation towards legalisation, the shortcomings of binary categories of support or opposition and doctors' concerns about additional regulation of their professional practices. 'Professional and personal impact of legalisation' described tensions between palliative care and VAD, and the emotional and social impact of being providers of VAD. 'Practical considerations regarding access' considered doctors' concerns about eligibility criteria and their willingness to provide VAD. CONCLUSION: A detailed understanding of medical perspectives about VAD would facilitate the design of legislative models that take better account of doctors' concerns. This may facilitate their greater participation in VAD and help address potential access issues arising from availability of willing doctors.

Options of Last Resort: Palliative Sedation, Physician Aid in Dying, and Voluntary Cessation of Eating and Drinking.

Some patients with terminal and degenerative illnesses request assistance to hasten death when suffering is refractory to palliative care, or they strongly desire to maximize their autonomy and dignity and minimize suffering. Palliative sedation (PS), voluntarily stopping eating and drinking (VSED), and physician-assisted death (PAD) are possible options of last resort. A decision to choose PS can be made by an informed surrogate decision maker, whereas intact decision-making capacity is required to choose VSED or PAD. For all palliative treatments of last resort, the risk of harm is minimized by the use of checklists, and establishment of policies and procedures.

Physicians' experiences with euthanasia: a cross-sectional survey amongst a random sample of Dutch physicians to explore their concerns, feelings and pressure.

BACKGROUND: Physicians who receive a request for euthanasia or assisted suicide may experience a conflict of duties: the duty to preserve life on the one hand and the duty to relieve suffering on the other hand. Little is known about experiences of physicians with receiving and granting a request for euthanasia or assisted suicide. This study, therefore, aimed to explore the concerns, feelings and pressure experienced by physicians who receive requests for euthanasia or assisted suicide. METHODS: In 2016, a cross-sectional study was conducted. Questionnaires were sent to a random sample of 3000 Dutch physicians. Physicians who had been working in adult patient care in the Netherlands for the last year were included in the sample (n = 2657). Half of the physicians were asked about the most recent case in which they refused a request for euthanasia or assisted suicide, and half about the most recent case in which they granted a request for euthanasia or assisted suicide. RESULTS: Of the 2657 eligible physicians, 1374 (52%) responded. The most reported reason not to participate was lack of time. Of the respondents, 248 answered questions about a refused euthanasia or assisted suicide request and 245 about a granted EAS request. Concerns about specific aspects of the euthanasia and assisted suicide process, such as the emotional burden of preparing and performing euthanasia or assisted suicide were commonly reported by physicians who refused and who granted a request. Pressure to grant a request was mostly experienced by physicians who refused a request, especially if the patient was ≥80 years, had a life-expectancy of ≥6 months and did not have cancer. The large majority of physicians reported contradictory emotions after having performed euthanasia or assisted suicide. CONCLUSIONS: Society should be aware of the impact of euthanasia and assisted suicide requests on physicians. The tension physicians experience may decrease their willingness to perform euthanasia and assisted suicide. On the other hand, physicians should not be forced to cross their own moral boundaries or be tempted to perform euthanasia and assisted suicide in cases that may not meet the due care criteria.

Did I Hear You Right?

As a palliative care physician I am constantly receiving wisdom from my interactions with patients and their families. The situation discussed in this article provides an example of a unique experience, with early requests for euthanasia that transitioned to aggressive end of life care later. Reflecting on this journey has enriched my professional life.

Of dilemmas and tensions: a qualitative study of palliative care physicians' positions regarding voluntary active euthanasia in Quebec, Canada.

OBJECTIVES: In 2015, the Province of Quebec, Canada passed a law that allowed voluntary active euthanasia (VAE). Palliative care stakeholders in Canada have been largely opposed to euthanasia, yet there is little research about their views. The research question guiding this study was the following: How do palliative care physicians in Quebec position themselves regarding the practice of VAE in the context of the new provincial legislation? METHODS: We used interpretive description, an inductive methodology to answer research questions about clinical practice. A total of 18 palliative care physicians participated in semistructured interviews at two university-affiliated hospitals in Quebec. RESULTS: Participants positioned themselves in opposition to euthanasia. Their justifications were framed within their professional commitment to not hasten death, which sat in tension with the value of patients' autonomy to choose how to die. Participants described VAE as unacceptable if it impeded opportunities to evaluate and alleviate suffering. Further, they contested government rhetoric that positioned VAE as a way to improve end-of-life care. Participants felt that VAE would diminish the potential of palliative care to relieve suffering. Dilemmas were apparent in their narratives, about reconciling respect for patient autonomy with broader palliative care values, and the value of accompanying and not abandoning patients who make requests for VAE while being committed to neither prolonging nor hastening death. CONCLUSIONS: This study provides insight into nuanced positions of experienced palliative care physicians in Quebec and confirms expected tensions between an important stakeholder and the practice of VAE as guided by the new legislation.

The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences.

BACKGROUND: Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. AIM: The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). DESIGN: General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. SETTING/PARTICIPANTS: A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. RESULTS: The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants' multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. CONCLUSION: Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.

The wish to die among palliative home care clients in Ontario, Canada: A cross-sectional study.

BACKGROUND: In the pursuit to provide the highest quality of person centered palliative care, client preferences, needs, and wishes surrounding end of life should be used to inform the plan of care. During a clinical assessment for care services, clients may voluntarily express a 'wish to die' either directly to the clinician or it may be indirectly reported second-hand to the clinician through an informal caregiver or family member. This is the first study using data gathered from the interRAI Palliative Care Assessment instrument (interRAI PC) to examine socio-demographic, clinical, and psycho-social factors of palliative home care clients with the voluntary expression of a 'wish to die now'. Factors associated with the risk for depression within this group were also identified. Awareness and understanding of clients who express the 'wish to die' is needed to better tailor a person-centered approach to end-of-life care. METHODS: This cross-sectional study included assessment records gathered from 4,840 palliative home care clients collected as part of pilot implementation of the interRAI PC assessment instrument in Ontario, Canada from 2006 through 2011. RESULTS: During the clinical assessment, 308 palliative home care clients (6.7%) had voluntarily expressed a 'wish to die now'. Independent factors emerging from multivariate logistic regression analyses predicting the expression of a 'wish to die' included not being married/widowed, a shorter estimated prognosis, depressive symptoms, functional impairment, too much sleep (excessive amount), feeling completion regarding financial/legal matters, and struggling with the meaning of life. Among persons who expressed a 'wish to die now', those who exhibited depressive symptoms (23.8%, n = 64) were also more likely to exhibit cognitive impairment, have decline in cognition in the last 90 days, exhibit weight loss, have informal caregivers exhibiting distress, 'not have a consistent positive outlook on life' and report 'struggling with the meaning of life'. CONCLUSION: When clients voluntary express a wish to die clinicians should take notice and initiate follow-up to better understand the context of this meaning for the individual. Clients who expressed a 'wish to die' did not all experience pain, depression, and psychological distress suggesting an individualized approach to care management be taken.

Support for voluntary and nonvoluntary euthanasia: what roles do conditions of suffering and the identity of the terminally ill play?

This study investigated the level of support for voluntary and nonvoluntary euthanasia under three conditions of suffering (pain; debilitated nature of the body; burden on the family) experienced by oneself, a significant other, and a person in general. The sample consisted of 1,897 Thai adults (719 males, 1,178 females) who voluntarily filled in the study's questionnaire. Initial multivariate analysis of variance indicated significant group (oneself, significant other, person in general) differences in level of support for voluntary and nonvoluntary euthanasia and under the three conditions of suffering. Multigroup path analysis conducted on the posited euthanasia model showed that the three conditions of suffering exerted differential direct and indirect influences on the support of voluntary and nonvoluntary euthanasia as a function of the identity of the person for whom euthanasia was being considered. The implications of these findings are discussed.

Can physicians conceive of performing euthanasia in case of psychiatric disease, dementia or being tired of living?

BACKGROUND: Euthanasia and physician-assisted suicide (EAS) in patients with psychiatric disease, dementia or patients who are tired of living (without severe morbidity) is highly controversial. Although such cases can fall under the Dutch Euthanasia Act, Dutch physicians seem reluctant to perform EAS, and it is not clear whether or not physicians reject the possibility of EAS in these cases. AIM: To determine whether physicians can conceive of granting requests for EAS in patients with cancer, another physical disease, psychiatric disease, dementia or patients who are tired of living, and to evaluate whether physician characteristics are associated with conceivability. A cross-sectional study (survey) was conducted among 2269 Dutch general practitioners, elderly care physicians and clinical specialists. RESULTS: The response rate was 64% (n=1456). Most physicians found it conceivable that they would grant a request for EAS in a patient with cancer or another physical disease (85% and 82%). Less than half of the physicians found this conceivable in patients with psychiatric disease (34%), early-stage dementia (40%), advanced dementia (29-33%) or tired of living (27%). General practitioners were most likely to find it conceivable that they would perform EAS. CONCLUSIONS: This study shows that a minority of Dutch physicians find it conceivable that they would grant a request for EAS from a patient with psychiatric disease, dementia or a patient who is tired of living. For physicians who find EAS inconceivable in these cases, legal arguments and personal moral objections both probably play a role.

Recruiting end-of-life cancer patients in the Netherlands for a study on suffering and euthanasia requests.

BACKGROUND: In the Netherlands, GPs performed euthanasia or physician-assisted suicide (EAS) in ∼1 of 10 end-of-life cancer patients in their care. Of all explicit requests for EAS directed at GPs, ∼44% resulted in EAS. However, the suffering of patients who do and do not request EAS has never been studied. An important barrier for such research is the low prevalence of end-of-life cancer patients per practice (on average two/year). We studied whether it is possible to recruit end-of-life cancer patients, following-up for requests for EAS (if any), in an interview study in general practice, whether selection occurred and which were the threats and opportunities to recruitment. Our target was to recruit at least 50 patients. METHODS: Characteristics of all eligible patients were monitored. RESULTS: One in every three eligible patients were recruited by 44 GPs in a 3-year inclusion period, resulting in 64 patients in the interview study with follow-up until death. The prevalence of explicit requests for EAS was higher (27%; P = 0.026) in the interview sample, and the presence of a depressed mood according to the GP was lower (5%; P = 0.013) than in the sample with eligible but not participating patients. CONCLUSIONS: Recruitment of slightly more than the minimal target number of end-of-life cancer patients in this study in general practice was realized. Monitoring of all eligible patients permitted to evaluate the selection which occurred. Recruitment through GPs who were direct professional colleagues of one of the researchers was a positive recruitment factor.

Depression and explicit requests for euthanasia in end-of-life cancer patients in primary care in the Netherlands: a longitudinal, prospective study.

BACKGROUND: In the Netherlands, many (45%) cancer patients die at home, in the care of GPs. About 1 out of 10 end-of-life cancer deaths is hastened by GPs through euthanasia or physician-assisted suicide. However, the relationship between depression and requests for euthanasia has never been prospectively studied directly in primary care. OBJECTIVE: This study aimed to assess the prevalence of depression in end-of-life cancer patients requesting euthanasia in primary care, as well as to assess the relationship between depression and requesting euthanasia. METHODS: Primary care patients with incurable cancer and an estimated life expectancy of half a year or shorter were interviewed every 2 months, using standardized psychometric instruments. Also, non-recruited eligible patients were monitored. RESULTS: Out of 258 eligible patients, 76 patients were recruited, of whom 64 patients were followed up until death. Of these, 27% (n = 17) explicitly requested euthanasia. One patient suffered from major depression. According to the depression subscale of the Hospital Anxiety and Depression Scale, 47% of the patients who explicitly requested euthanasia versus 28% of those without an euthanasia request suffered from a depressed mood at inclusion; the difference was not significant (P = 0.2). Corresponding figures for the last interview before death were 40% and 41% (P = 0.6). CONCLUSIONS: Major depression was not a major factor in explicit requests for euthanasia in end-of-life cancer patients in primary care. Further depressed mood was not associated with explicitly requesting euthanasia in this patient group, although statistical underpower cannot be ruled out in this small sample.

"The choice for death" and neurology.

In the last decade, "end-of-life" issues have gained prominence in political and social debates in many countries. The deliberate ending of the life of a patient upon his/her own request has become a hotly contested topic. This paper discusses the implications of this debate and of corresponding policy and legal developments for neurology. We discuss the nomenclature of the "choices for death", euthanasia, doctor-assisted suicide and palliative care as well as the social dynamics underlying these developments. We suggest that we need a more nuanced and empirically based understanding of the process of the "choice for death and its implications for medical practice."

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients.

In The Netherlands, relatively more patients (20%) with amyotrophic lateral sclerosis (ALS) die due to euthanasia or physician-assisted suicide (EAS) compared with patients with cancer (5%) or heart failure (0.5%). We wanted to gain insight into the reasons for ALS patients requesting EAS and compare these with the reasons of cancer and heart failure patients. Knowing disease-specific reasons for requesting EAS may improve palliative care in these vulnerable patients. The data used in the present study were derived from the Support and Consultation in Euthanasia in The Netherlands (SCEN) evaluation study. This study provided consultation reports and questionnaires filled out by the attending physicians from 3,337 consultations conducted by SCEN physicians in situations where a patient requested EAS. For this study we selected data on all ALS patients (n = 51), all heart failure patients (n = 61), and a random sample of 73 cancer patients. The most frequently reported reasons for unbearable suffering were: fear of suffocation (45%) and dependency (29%) in ALS patients, pain (46%) and fatigue (28%) in cancer patients, and dyspnea (52%) and dependency (37%) in heart failure patients. Somatic complaints were reported more frequently as a reason for EAS by cancer patients [odds ratio (OR) 0.20, 95% confidence interval (CI) 0.09-0.46] and heart failure patients [OR 0.16, 95% CI 0.05-0.46] than by ALS patients. ALS patients should be helped in a timely fashion to cope with psychosocial symptoms, e.g., by informing them about the low risk of suffocation in the terminal phase and the possible means of preventing this.

Unbearable suffering of patients with a request for euthanasia or physician-assisted suicide: an integrative review.

PURPOSE: In the legal performance of the euthanasia procedure, unbearable suffering, one of the requirements of due care, is difficult to assess. Evaluation of the current knowledge of unbearable suffering is needed in the ongoing debate about the conditions on which EAS can be approved. METHODS: Using an integrative literature review, we evaluated publications with definitions of suffering in general or in end-of-life situations and with descriptions of suffering in the context of a request for EAS. DATA SYNTHESIS: From the 1482 citations identified, we included 55 publications: 20 articles about definitions of suffering and 35 empirical studies on suffering. We found no definition of unbearable suffering in the context of a request for EAS. Qualitative patient-centered studies revealed the most motivations, and the most motivations named by only one of the three parties involved. The studies of relatives were limited, mainly quantitative and retrospective. We found no studies that brought together the views of the patients, relatives, and healthcare professionals. CONCLUSIONS: There is no generally accepted definition of 'unbearable suffering' in the context of a request for EAS. On the basis of the articles reviewed, we propose the following conceptual definition: 'Unbearable suffering in the context of a request for EAS is a profoundly personal experience of an actual or perceived impending threat to the integrity or life of the person, which has a significant duration and a central place in the person's mind'. Further patient-centered qualitative research into suffering is needed to clarify this definition.