The Unspeakable Nature of Death & Dying During Childhood: A Silenced Phenomenon in Pediatric Care

In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating the benefits of open communication at the end of life. In this paper, we describe the unspeakable nature of death and dying in childhood, including its conceptual and clinical causes and dimensions, its persistence, and the associated challenges for children and youth facing critical illnesses, their families, and society. We explore how the tension between hope and death can be reframed and apply our analysis to the context of medical assistance in dying for mature minors in Canada. Considering the lack of related literature, this paper offers initial reflections to form a framework for the unspeakable nature of death and dying in childhood and to advance the crucial need for research.

“Dying with a Smile, Just Knowing that Somebody’s Listened to Me”: End-Of-Life Care and Medical Assistance in Dying in Canadian Prisons

Medical assistance in dying (MAiD) has been legal in Canada since 2016 and some incarcerated patients who are at the end of their lives are eligible for the procedure. Interviews with nine incarcerated men at a federal penitentiary in Canada provide insight into some of the ways that people who are navigating aging and end-of-life in prison think about MAiD. Interview themes are organized around: experience with death and dying; possibilities and barriers related to applications for release from prison at end-of-life; experiences of peer-caregiving in a prison palliative care program; support for MAiD and the expansion of eligibility criteria; what a good death looks like. Themes are contextualized alongside federal guidelines related to end-of-life care (EOLC) and MAiD for prisoners, highlighting that sound policy requires both generalizable principles and attention to nuance. MAiD rests on patient voluntariness, and thus autonomy over EOLC decisions is paramount for prisoners.

Canadian Undergraduates’ Perspectives on Medical Assistance in Dying (MAiD): A Quantitative Study

Background and Objectives: In 2016, Medical Assistance in Dying (MAiD) became legal in Canada for those suffering a grievous and untreatable medical condition. Currently, it is not available to minors or to those with an untreatable mental illness, although it is likely the scope of MAiD will be widened to include persons with severe and untreatable mental illnesses. However, little is known about the factors predicting acceptance or rejection of MAiD for persons with either a grievous medical condition or an untreatable mental illness. Methods: A survey was administered to 438 undergraduate students to examine factors associated with their acceptance or rejection of MAiD. The survey included four different scenarios: a young or old person with an untreatable medical condition, and a young or old person with an untreatable mental illness. Demographic questions (age, sex, religion, etc), personality measures, and an attitude towards euthanasia scale were also administered, as well as questions assessing participants’ general understanding of MAiD and their life experiences with death and suicide. Results/Conclusion: Overall, most of the Canadian undergraduate participants accepted MAiD for both terminally ill and mentally ill patients; however, different variables, such as age, religion, and ethnicity, predicted the acceptance or rejection of MAiD for each scenario.

Exploring key stakeholders’ attitudes and opinions on medical assistance in dying and palliative care in Canada: a qualitative study protocol

IntroductionCanadians have had legal access to medical assistance in dying (MAiD) since 2016. However, despite substantial overlap in populations who request MAiD and who require palliative care (PC) services, policies and recommended practices regarding the optimal relationship between MAiD and PC services are not well developed. Multiple models are possible, including autonomous delivery of these services and formal or informal coordination, collaboration or integration. However, it is not clear which of these approaches are most appropriate, feasible or acceptable in different Canadian health settings in the context of the COVID-19 pandemic and in the post-pandemic period. The aim of this qualitative study is to understand the attitudes and opinions of key stakeholders from the government, health system, patient groups and academia in Canada regarding the optimal relationship between MAiD and PC services.Methods and analysisA qualitative, purposeful sampling approach will elicit stakeholder feedback of 25–30 participants using semistructured interviews. Stakeholders with expertise and engagement in MAiD or PC who hold leadership positions in their respective organisations across Canada will be invited to provide their perspectives on the relationship between MAiD and PC; capacity-building needs; policy development opportunities; and the impact of the COVID-19 pandemic on the relationship between MAiD and PC services. Transcripts will be analysed using content analysis. A framework for integrated health services will be used to assess the impact of integrating services on multiple levels.Ethics and disseminationThis study has received ethical approval from the University Health Network Research Ethics Board (No 19-5518; Toronto, Canada). All participants will be required to provide informed electronic consent before a qualitative interview is scheduled, and to provide verbal consent prior to the start of the qualitative interview. Findings from this study could inform healthcare policy, the delivery of MAiD and PC, and enhance the understanding of the multilevel factors relevant for the delivery of these services. Findings will be disseminated in conferences and peer-reviewed publications.

How can we improve the experiences of patients and families who request medical assistance in dying? A multi-centre qualitative study

Background Medical assistance in dying has been available in Canada for 5 years, but it is unclear which practices contribute to high-quality care. We aimed to describe patient and family perspectives of quality of care for medical assistance in dying. Methods We conducted a multi-centre, qualitative descriptive study, including face to face or virtual one-hour interviews using a semi-structured guide. We interviewed 21 english-speaking patients found eligible for medical assistance in dying and 17 family members at four sites in Canada, between November 2017 and September 2019. Interviews were de-identified, and analyzed in an iterative process of thematic analysis. Results We identified 18 themes. Sixteen themes were related to a single step in the process of medical assistance in dying (MAID requests, MAID assessments, preparation for dying, death and aftercare). Two themes (coordination and patient-centred care) were theme consistently across multiple steps in the MAID process. From these themes, alongside participant recommendations, we developed clinical practice suggestions which can guide care. Conclusions Patients and families identified process-specific successes and challenges during the process of medical assistance in dying. Most importantly, they identified the need for care coordination and a patient-centred approach as central to high-quality care. More research is required to characterize which aspects of care most influence patient and family satisfaction.

Characteristics of Older Adults Accessing Medical Assistance in Dying (MAiD): a Descriptive Study

Background Medical Assistance in Dying (MAiD) is an end-of-life option for Canadians accounting for 2% of all deaths in Canada in 2019. Adults over 80 years old represent a significant proportion of these deaths, yet little is known about how they compare with their younger counterparts. Methods This study retrospectively reviewed our tertiary care institution’s MAiD database to compare MAiD recipients <65, 65–80, and >80 years of age. Extracted data included basic demographics, illness characteristics, functional status, social living arrangements/contacts, and outcomes of MAiD assessments. Results Of 267 patients assessed for MAiD, 38.2% were over 80. Compared to the younger groups, those over 80 were more likely to be female, to live alone, and to be widowed; however, they did not self-identify as ‘socially isolated’. The majority fit into the illness categories of malignancy, cardiopulmonary or neurologic diseases, but those over 80 were more likely to have other more chronic/subacute conditions leading to the MAiD request. Conclusions Older adults accessing MAiD are distinct in that they tend to be increasingly frail and without a predominant underlying diagnosis as compared with younger adults, but rather have an accumulation of losses resulting in global functional decline and subsequent loss of autonomy and independence.