AIMS AND OBJECTIVES: To describes nurses' moral experiences with Medical Assistance in Dying in the Canadian context.
BACKGROUND: Nurses perform important roles in Medical Assistance in Dying in Canada and do so within a unique context in which Medical Assistance in Dying is provided through healthcare services and where accessibility is an important principle. International literature indicates that participating in Medical Assistance in Dying can be deeply impactful for nurses and requires a high degree of moral sense-making.
DESIGN: A qualitative interview study guided by Interpretive Description using the COREQ checklist.
RESULTS: Fifty-nine nurses from across Canada participated in the study. The decision to participate in Medical Assistance in Dying was influenced by family and community, professional experience and nurses' proximity to the act of Medical Assistance in Dying. Nurses described a range of deep and sometimes conflicting emotional reactions provoked by Medical Assistance in Dying. Nurses used a number of moral waypoints to make sense of their decision including patient choice, control and certainty; an understanding that it was not about the nurse; a commitment to staying with patients through suffering; consideration of moral consistency; issues related to the afterlife; and the peace and gratitude demonstrated by patients and families.
DISCUSSION: The depth of nurses' intuitional moral responses and their need to make sense of these responses are consistent with Haidt's theory of moral experience in which individuals use reasoning primarily to explain their moral intuition and in which moral change occurs primarily through compassionate social interaction. Further, work on the moral identity of nursing provides robust explanation of how nurses' moral decisions are contextually and relationally mediated and how they seek to guard patient vulnerability, even at their own emotional cost.
CONCLUSION: Medical Assistance in Dying is impactful for nurses, and for some, it requires intensive and ongoing moral sense-making.
RELEVANCE TO CLINICAL PRACTICE: There is a need to provide support for nurses' moral deliberation and emotional well-being in the context of Medical Assistance in Dying care.
BACKGROUND: At the end of patients' lives, physicians sometimes provide medication with the explicit intention to hasten death. Physicians' assessment of such acts varies. We studied which characteristics are associated with physicians' classification of these acts.
METHODS: This study concerns a secondary analysis of a nationwide study on the practice of medical decision-making at the end of life. In 2015, attending physicians of a sample of deceased people (n=9,351) received a questionnaire about end-of-life care and decision-making. The response rate was 78%. We studied 851 cases in which physicians reported that the patient had died as a result of medication they had provided with the explicit intention to hasten death. Chi-square tests and logistic regression analyses were performed.
RESULTS: If medication had been provided with the explicit intention to hasten death at the explicit request of the patient, physicians considered "euthanasia", "assisted suicide" or "ending of life" the most appropriate term for their course of action in 82% of all cases, while 17% of physicians chose the term "palliative or terminal sedation". Physicians' classification of their act as "euthanasia", "assisted suicide" or "ending of life" was less likely when patients had a short (1-7 days) or very short (max. 24 hours) life expectancy. Furthermore, such classification was less likely when their act had involved the use of other medication than muscle relaxants. The limited number of cases in which patients had been provided with medication without an explicit patient request were never classified as "euthanasia", "assisted suicide" or "ending of life".
CONCLUSIONS: Physicians rarely classify the provision of medication with the explicit intention of hastening death as "euthanasia", "assisted suicide" or "ending of life" when patients are in the dying phase and when they provide other medication than muscle relaxants. In these cases, acts are mostly classified as "palliative or terminal sedation". This suggests that the legal distinction between euthanasia and palliative care may not always be clear in clinical practice.
This study focuses on the impact of common spiritual beliefs regarding metaphysical questions in agreeability with the practice of hastened death. A sample of 497 Portuguese medical students was collected. Differences between genders and religions, predictors for agreeability with hastened death and the association between spiritual beliefs and opinion towards hastened death cases were assessed. Respondents were mostly favourable to the practice of hastened death. Formal religious affiliation and higher levels of religiosity significantly associated with lesser agreeability with hastened death. Statistically significant association was found between every hastened death scenario and multiple of the spiritual beliefs used. A number of spiritual beliefs were predictors of agreeability. We discuss the implications of religion and spirituality in agreeability with hastened death. Further research is required to better understand the true weight of spirituality in one's opinion towards this ethical dilemma.
Background: Over the last two decades an increasing number of countries have legalized euthanasia and physician-assisted suicide (EAS) leading to considerable debate over the inherent ethical dilemmas. Increasing numbers of people with personality disorders, faced with unbearable suffering, have requested and received assistance in terminating their lives. EAS in people with personality disorders has, however, received very sparse attention from clinicians and researchers. In this paper, we examine the literature on the practice and prevalence of EAS in people with personality disorders to date and discuss the associated challenges for research and practice.
Methods: Narrative review of the literature combined with the authors' collective experience and knowledge of personality disorders.
Results: In six of the eight countries where EAS is currently legal, mental disorders are accepted as disorders for which EAS may be granted. In four of these countries, EAS in minors with mental disorders is also accepted. Our literature search resulted in 9 papers on the subject of EAS in people with personality disorders. These studies suggest that most clinicians who grant EAS have indeed perceived their patients' suffering as chronic, unbearable and untreatable without prospect of improvement. The majority of patients with personality disorders had tried some form of psychotherapy, but very few had received any of the relevant evidence-based treatments. The decision to grant EAS based on a perception of the patient's illness as being untreatable with no prospect of improvement, could, thus, in many cases fail to meet the due care criteria listed in EAS laws. People with personality disorders more often wish for death for extended periods of time than people without these disorders. However, there is ample empirical data to show that suicidal tendencies and behaviour can be treated and that they fluctuate rapidly over time.
Conclusions: In light of our findings, we believe that the current legislation and practice of EAS for people with personality disorders is based on an inadequate understanding of underlying psychopathology and a lack of awareness about the contemporary treatment literature. Moreover, we assert that this practice neglects the individual's potential for having a life worth living.
The number of countries and states that have legalized assistance in dying under various names (Medical Assistance in Dying, Death with Dignity, etc.) has continued to grow in recent years, allowing this option for more patients. Most of these laws include restrictions for eligibility based on a terminal diagnosis and estimated prognosis, as well as asking certifying providers to attest to the cognitive and psychiatric competence and capacity of patients requesting access. Some laws also require that patients must be able to 'self-administer' the regimen, though details vary. Such determinations can be vague and difficult to clearly apply to patients with neurologic conditions and primary or metastatic brain tumors. There is currently a lack of rigorous studies guiding providers on how to apply these important legal criteria to this special and common patient population. As access to legal assistance in dying expands, more research is needed on how to ethically apply the laws and guide patients, families and providers through the process.
Current debates about assisted dying and assisted suicide cover a series of medical, legal, moral, ethical and religious aspects. Yet, public views on the subject remain underexplored and, therefore, not always accounted for in the formation of public policy. This paper reports on empirical data from a cross-sectional study in the UK in 2019, which examines public views about the legalisation of assisted dying and assisted suicide, by means of a self-administered Qualtrics-based survey (self-devised vignettes). A combination of simple random and convenience sampling was used. Participants (n = 297) state their preference that both assisted dying and assisted suicide should be legalised in the UK (n = 70%), while doctors should be legally allowed to support such wishes of patients with an incurable and painful illness from which they will die (n = 62.22%). The paper concludes that public opinion needs to be further accounted for in policymaking and discourses regarding patient autonomy and dignity of care.
In November 2017, the Victorian Voluntary Assisted Dying (VAD) Act was passed enabling people with a progressive terminal illness to end their life voluntarily. Heated debate abounded including, to some extent within palliative care, which was also challenged with developing processes around the legislation enactment.
OBJECTIVE: In response, the lead author convened a series of meetings of palliative care physicians: 1. To share ideas about preparations being undertaken within services; and 2. To re-establish professional cohesion following the divide that the legislation had presented.
DESIGN: Setting/Participants: A series of three closed meetings were held between the legislation passage and its implementation, with all Victorian palliative care physicians invited to attend. Meetings were facilitated by an experienced psychiatrist from outside the field.
RESULTS: These meetings proved very valuable as physicians collectively sought to define and respond to challenges, simultaneously reflecting on the personal and professional implications for individuals and the field. Key areas raised including gauging institutional 'readiness' for the legislation through staff surveys; the educational role of palliative care staff of the legislation implications; communication skills training; the role (if any) of palliative care in the processes of VAD; and the perceptions of palliative care itself in health services and the community. It was during the processes of discussing challenges and sharing solutions that the attendees appeared to re-affirm their professional interconnections. A description of the key elements of these discussions may be useful to others who may yet face similar circumstances with the introduction of VAD legislation.
BACKGROUND: Voluntary assisted dying was legalized in Victoria, Australia in June 2019, and was the first jurisdiction internationally to legislatively mandate training for doctors conducting eligibility assessments of patients. Mandatory training was designed as a safeguard to ensure compliance within the system, so that only eligible patients would gain access to voluntary assisted dying.
OBJECTIVE: This article outlines the development of training mandated for doctors prior to undertaking eligibility assessments for voluntary assisted dying. The training addressed required legal knowledge, including doctors' roles, duties and legal protections, and also provided instruction on relevant clinical skills.
DESIGN: Training design was based on 2 main principles: to comprehensively impart the legal duties imposed by the legislation; and to be readily accessible for busy doctors. The law was first mapped into a curriculum, and circulated to medical colleges, societies and professional organizations as well as international experts for feedback. The training was converted into an online e-learning format and tested at a focus group of doctors.
RESULTS: The training comprises 9 modules including an assessment module. While the predominant focus of the modules is on law, they also contain some clinical components and links to further resources. Modules also contain videos, case studies and interactive exercises. The assessment consists of 30 questions, selected randomly from a question bank, with a pass mark of 90%.
CONCLUSION: The Victorian legislatively-mandated voluntary assisted dying training provides standardized baseline knowledge to enhance the quality and consistency of decision-making by doctors. While further evaluation of this training is needed, it may provide a model for other jurisdictions considering making voluntary assisted dying lawful.
Critical care clinicians strive to reverse the disease process and are frequently faced with difficult end-of-life (EoL) situations, which include transitions from curative to palliative care, avoidance of disproportionate care, withholding or withdrawing therapy, responding to advance treatment directives, as well as requests for assistance in dying. This article presents a summary of the most common issues encountered by intensivists caring for patients around the end of their life. Topics explored are the practices around limitations of life-sustaining treatment, with specific mention to the thorny subject of assisted dying and euthanasia, as well as the difficulties encountered regarding the adoption of advance care directives in clinical practice and the importance of integrating palliative care in the everyday practice of critical-care physicians. The aim of this article is to enhance understanding around the complexity of EoL decisions, highlight the intricate cultural, religious, and social dimensions around death and dying, and identify areas of potential improvement for individual practice.
In this paper we document some of the practical aspects of implementing medical assistance in dying (MAiD) since it became legal in Canada in 2016. The percentage of annual deaths in Canada due to MAiD varies widely, ranging from less than 0.5% in some areas to over 5% in others. By the end of 2019, approximately 13,000 people had an assisted death in Canada (1.6% of all deaths). The average age is 73 years and the majority have cancer (64%), followed by end-stage organ failure (17%), and neurological disease (11%). The safeguards in Canadian law include having two witnesses sign the patient request form, having two independent clinicians agree that the patient is eligible, and requiring a 10-day waiting period after the request is made. Although the criminal law is federal and applies throughout the nation, health services managed provincially, and there are many different models of care being used. Some provinces have standardized prescriptions and procedures for assisted dying with centralized care coordinators supporting both patients and providers. Other provinces expect individual providers to manage all aspects of assisted dying. The procedure and medications are provided free of charge to patients, but it took years before many providers were remunerated for their services. Access for patients has been a problem because there are too few providers of care (especially in rural areas), and many people have difficulty getting accurate information about the process. Many faith-based health care facilities continue to refuse to allow assisted dying within their facilities, so patients requesting MAiD need to be transferred to other locations in their last hours of life. Solutions to these problems have included the development of more training and support for providers and the creation of coordinating centres that provide information and support for patients throughout the process. Telemedicine is used for assessment of eligibility when required, especially during the COVID pandemic. There are similarities in problems of access to all end of life care options, including palliative care and residential hospices. The relationships between providers of assisted dying and specialists in palliative care vary, and examples exist throughout the spectrum from collegial to hostile. This is slowly improving, as individual clinicians gain more experience with patients choosing assisted dying. Public culture is changing as there are more conversations occurring about death and dying.
Background: How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists.
Methods: Semi-structured interviews with six nurses and six doctors working in palliative care in five Norwegian hospitals. Transcripts were analysed with systematic text condensation, a qualitative analysis framework.
Results: Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control.
Conclusions: If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved.
In the Western world including Canada, grievous and irredeemable health conditions, which cause unbearable suffering, has given support to the legalization of medical aid in dying (MAiD). It is unknown how Asian Buddhists who are in contact with the Western culture perceive MAiD. In this qualitative study, 16 Asian Buddhists living in Montreal took part in a semi-structured interview. Contrary to general findings in the literature, religious affiliation do not always determine moral stances and practical decisions when it comes to MAiD. Some participants were willing to take some freedom with the doctrine and based their approval of MAiD on the right to self-determination. Those who disapproved the use of MAiD perceived it as causing unnatural death, creating bad karma, and interfering with a conscious death. End-of-life (EoL) care providers have to remain sensitive to each patient's spiritual principles and beliefs to understand their needs and choices for EoL care.
Physician-assisted death for patients suffering from psychiatric disorders is allowed in the Netherlands under certain circumstances. One of the central problems that arise with regard to this practice is the question of whether it is possible to distinguish between suicidality and a request for physician-assisted death. We set up this study to gain insight into how psychiatrists and general practitioners distinguish between suicidality and physician-assisted death. The data for this study were collected through qualitative interviews with 20 general practitioners and 17 psychiatrists in the Netherlands. From the interviews, we conclude that physicians distinguish three types of death wishes among patients suffering from psychiatric disorders: 'impulsive suicidality,' 'chronic suicidality,' and 'rational death wishes.' To discern between them they evaluate whether the death wish is seen as part of the psychopathology, whether it is consistent over time, and whether they consider it treatable. Some considered physician-assisted death an alternative to a 'rational suicide,' as this was perceived to be a more humane manner of death for the patient and their relatives. We argue that physician-assisted death can be justified also in some cases in which the death wish is part of the psychopathology, as the patient's suffering can be unbearable and irremediable. Physician-assisted death in these cases may remain the only option left to relieve the suffering.
CONTEXT: Since Canada decriminalized medical assistance in dying (MAID) in 2015, clinicians and organizations have developed policies and protocols to implement assisted dying in clinical practice. Five years on, there is little consensus as to what constitutes high-quality care in MAID.
OBJECTIVES: To describe MAID clinicians' perspectives on quality of care in MAID, including challenges, successes, and clinical practice suggestions.
METHODS: We conducted an exploratory, multi-centre, qualitative study at four Canadian centres. Using a semi-structured interview guide, we conducted interviews with 20 health care providers. Interviews were transcribed and de-identified prior to analysis. Adopting a qualitative descriptive approach, we used a thematic analysis to identify primary and secondary themes in the interviews and practice suggestions to improve quality of care to patients who request MAID.
RESULTS: We identified three major themes. 1) Improving access and patient experience: clinicians described struggles in ensuring equitable access to MAID and supporting MAID patients and their families. 2) Supporting providers and sustainability: clinicians described managing MAID workload, remuneration, educational needs, and the emotional impact of participating in assisted dying. 3) Institutional support: descriptions of MAID communication tools and training, use of standardized care pathways, inter-professional collaboration, and human resource planning. Clinicians also described suggestions for clinical practice to improve quality of care.
CONCLUSION: Canadian health care providers described unique challenges in caring for patients who request MAID, along with practices to improve the quality of care.
Staff reported paranormal experiences in connection with the outpatient Medical Assistance in Dying (MAiD) room at the hospital. This case study reports on staff experiences and illustrates how the Ethics team’s role expanded to deal with this novel situation by facilitating an interdisciplinary response.
Context: In most jurisdictions where medical-aid-in-dying (MAiD) is available, this option is reserved for individuals suffering from incurable physical conditions. Currently, in Canada, people who have a mental illness are legally excluded from accessing MAiD.
Methods: We developed a questionnaire for mental health care providers to better understand their perspectives related to ethical issues in relation to MAiD in the context of severe and persistent suffering caused by mental illness. We used a mixed-methods survey approach, using a concurrent embedded model with both closed and open-ended questions.
Findings: 477 healthcare providers from the province of Québec (Canada) completed the questionnaire. One third of the sample (34.4%) were nurses, one quarter psychologists (24.3%) and one quarter psycho-educators (24%). Nearly half of the respondents (48.4%) considered that people with a severe mental illness should be granted the right to opt for MAiD as a way to end their suffering. Respondents were more likely to feel comfortable listening to the person and participating in discussions related to MAiD for a mental illness than offering care or the means for the person to access MAiD. Most (86.2%) reported that they had not received adequate/sufficient training, education or preparation in order to address ethical questions surrounding MAiD.
Conclusions: The findings highlight how extending MAiD to people with a mental illness would affect daily practices for mental healthcare providers who work directly with people who may request MAiD. The survey results also reinforce the need for adequate training and professional education in this complex area of care.
AIM: To consider the possibility of consequences beyond the alleviation of perceived individual suffering, for families left behind, communities and society as a whole should the End of Life Choice Act gain public support in the September 2020 referendum in New Zealand.
METHOD: This study used the Yin case study approach to undertake a single semi-structured in-depth interview with a participant who self-identified as having first-hand experience of assisted dying from a relative's perspective (in a country where this is legal). Thematic analysis was used to identify themes and trends from the interview transcript.
RESULTS: Three key themes emerged from the interview: the potential for assisted dying becoming an expectation for others to pursue when unwell and possibly facing a life-threatening illness; the notion of stigma being associated with the individual using assisted dying legislation and the family left behind; and that there may be the potential for such legislation to produce a contagion effect.
CONCLUSION: The introduction of assisted dying legislation into New Zealand culture provides a potential hotspot for family, community and social discord that may not be easily remedied. Further study in New Zealand is required to investigate whether a contagion effect of assisted dying is possible, and how as a society, we negotiate what could become a conflicted pathway potentially complicated by prejudice, judgement and stigma.
The Voluntary Assisted Dying Act 2017 (Vic) came into effect in Victoria on 19 June 2019. We present the case of an inpatient death under the voluntary assisted dying Act in our health service and describe a short case history followed by a discussion examining two relevant topics related to voluntary assisted dying and palliative care: conscientious objection and the complexity of palliative care involvement.
OBJECTIVE: Advance request euthanasia and/or assisted suicide (AR-EAS) in persons with dementia is highly controversial. Results of typical public opinion surveys may not reflect the ethical and practical issues involved in the practice. We tested the impact of incorporating such issues in the assessment of public attitudes toward legalization of AR-EAS.
DESIGN: Online survey (April 27-30, 2020) of 1,711 adults recruited via CloudResearch PrimePanel, matched to U.S. population in age, sex, race and/or ethnicity, education, household income, and political affiliation. After assessing initial attitudes toward legalization of AR-EAS, respondents viewed one of six randomly assigned scenarios depicting an ethical or practical issue in AR-EAS; acceptability of EAS in each scenario as well as general attitudes toward AR-EAS legalization were then elicited.
RESULTS: Approximately 54.4% initially agreed/strongly agreed with AR-EAS legalization; agreement was associated with lower dementia quality-of-life rating, younger age, not being religious, liberal politics, and $75,000–$99,999 income range. After viewing the scenarios, a minority in each scenario arm found the AR-EAS depicted acceptable (20.7%–39.1%; p<0.0001 for all six arms, in comparison with initial legalization question response). Support (agree/strongly agree) for AR-EAS legalization after reading specific scenarios was generally lower (range 36.5%–49.3%; p=0.0002); change in support for legalization was associated with initial support for legalization, acceptability of AR-EAS in the scenarios, dementia quality-of-life ratings, and race.
CONCLUSION: Informing the public of the ethical and practical complexities in AR-EAS may have significant effects on their attitudes toward legalization. Future surveys should ensure that the public's views reflect sufficient exposure to these complexities.
Cette "interruption volontaire de vieillesse", c'est avant tout un témoignage touchant pour comprendre le choix et le combat de Jacqueline Jencquel afin d'avoir le droit de terminer sa vie dignement et d'en choisir les conditions. Mourir avant d'être déjà à moitié mort, c'est la vision que défend une femme qui a passionnément aimé la vie et la liberté.