Understanding why patients request euthanasia when it is illegal: a qualitative study in palliative care units on the personal and practical impact of euthanasia requests

Context: Some patients in palliative care units request euthanasia regardless of legislation. Although studies have explored the reasons for these requests, little is known about the subjective, relational, and contextual repercussions for the patient. Objectives: The aim of this study is to understand the purpose of euthanasia requests from the patient’s viewpoint and their personal and practical impact. Methods: We conducted in-depth interviews with patients requesting euthanasia, their family members, and health care providers in 11 French palliative care units. A thematic analysis of the data was performed. Results: In total, 18 patients were interviewed within 48 h of the request being made; 1 week later, 9 patients were interviewed again. Five main themes emerged: assuming the possibility of transgressing the forbidden, a call for unbearable suffering to be recognized, encouragement to change clinical practice, reclaiming a sense of freedom over medical constraints, and imagining a desirable future for oneself. Conclusions: A request for euthanasia appears to be a willful means to remove oneself from the impasse of an existence paralyzed by suffering. It creates a space for discussion, which promotes negotiation with patients on care practices and therapeutics, and strengthens patients’ sense of autonomy. Investigating the relationship between the evolution of euthanasia requests within the palliative care setting could be beneficial. It is important to encourage health care professionals to adopt a readiness to listen by interacting with patients in a way that is not momentarily action-oriented but rather focused on proactive discussion.

The safety and efficacy of using moxibustion and or acupuncture for cancer-related insomnia: a systematic review and meta-analysis of randomised controlled trials

Introduction: This study aimed to synthesise the best available evidence on the safety and efficacy of using moxibustion and/or acupuncture to manage cancer-related insomnia (CRI). Methods: The PRISMA framework guided the review. Nine databases were searched from its inception to July 2020, published in English or Chinese. Randomised clinical trials (RCTs) of moxibustion and or acupuncture for the treatment of CRI were selected for inclusion. Methodological quality was assessed using the method suggested by the Cochrane collaboration. The Cochrane Review Manager was used to conduct a meta-analysis. Results: Fourteen RCTs met the eligibility criteria. Twelve RCTs used the Pittsburgh Sleep Quality Index (PSQI) score as continuous data and a meta-analysis showed positive effects of moxibustion and or acupuncture ( n = 997, mean difference (MD) = −1.84, 95% confidence interval (CI) = −2.75 to −0.94, p < 0.01). Five RCTs using continuous data and a meta-analysis in these studies also showed significant difference between two groups ( n = 358, risk ratio (RR) = 0.45, 95% CI = 0.26–0.80, I2 = 39%). Conclusion: The meta-analyses demonstrated that moxibustion and or acupuncture showed a positive effect in managing CRI. Such modalities could be considered an add-on option in the current CRI management regimen.

Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease

Background: There are few illnesses as disruptive as motor neurone disease, a fatal neurodegenerative condition, where diagnosis introduces a clinical narrative of inevitable decline through progressive immobilisation into death. Recent evidence suggests that bereaved motor neurone disease family caregivers are more likely to be at moderate or high risk of complicated grief. Methods: Qualitative data from an anonymous national survey of bereaved motor neurone disease caregivers ( n = 393) was examined through thematic analysis to explore the experiences of people who are at low, moderate, and high risk of complicated grief. Up to 40% responded to three open-ended questions: How caregivers viewed their coping strategies; the advice they had for others and what had been positive about their experience. Results: Ten themes informed the narratives of illness and loss. All three groups shared similar experiences but differed in their capacity to address them. The low-risk group seemed to recognise the uncertainty of life and that meaning needed to be created by them. For the moderate-risk group, while motor neurone disease was a major disruption, they could with support, regroup and plan in different ways. The high-risk group did not have many resources, external or internal. They felt let down when professionals did not have answers and could not see or did not know how to change their ways of responding to this unwanted situation. Conclusion: The differences in these three profiles and their narratives of loss should alert health and community service providers to identify and address the caregivers’ support needs early and throughout the caregiving journey. Motor Neurone Disease Associations are involved throughout the illness journey and need to invest in a continuum of care incorporating end-of-life care and bereavement support. Community grief literacy and enhancement of social networks are keys to improved support from families and friends that can enable the focus to be on feelings of empowerment rather than abandonment.

Centering sexual and gender diversity within Compassionate Communities: insights from a community network of LGBTQ2S+ older adults

Background and Rationale: The Compassionate Communities movement emphasizes the importance of illness, disability, dying, caregiving, and grief across the lifespan and highlights the communal responsibility of caring for one another. There is a need to recognize and incorporate the needs of diverse communities within this movement and research on dying, caregiving and grief. An important axis of this diversity is related to individuals’ sexual orientation and gender identity. Methods: As part of the early phases of Healthy End of Life Project Ottawa, a Compassionate Communities, community-based, participatory action research project, we held focus groups with older members of lesbian, gay, bisexual, transgender, queer, and two-spirit communities. Nine older lesbian, gay, bisexual, transgender, queer, and two-spirit people participated in the focus groups (mean age = 72 years). Data were analysed using an inductive, reflexive thematic approach. Results: Through an iterative analysis process, we identified themes related to lifecourse experiences of trauma, the need for safety within care contexts, the importance of relationships and connection, as well as participants’ ability to ask for and receive help. A core tenet of Compassionate Communities involves responding to the needs of diverse communities with respect to aging, end-of-life, and grief. Our findings emphasize the importance of incorporating the voices of diverse sexual and gender identities and promoting health equity within Compassionate Community initiatives.

Development and evaluation of an LGBT+ education programme for palliative care interdisciplinary teams

Background: Despite national policy recommendations to enhance healthcare access for LGBT+ (lesbian, gay, bisexual, transgender, and those who do not identify as cisgender heterosexual) people, education on LGBT+ issues and needs is still lacking in health and social care curricula. Most of the available resources are focused on primary care, mental health, and sexual health, with little consideration to broader LGBT+ health issues and needs. The limited available educational programmes pertaining to LGBT+ individuals outside the context of sexual or mental health have mainly focused on cancer care or older adults. Aim: To support palliative care interdisciplinary teams to provide LGBT+ affirmative care for people receiving and needing palliative and end-of-life care. Methods: A 1½-h workshop was developed and evaluated using Kotter’s eight-step process for leading change. Across four hospices, 145 health and social professionals participated in the training. A quasi-experimental non-equivalent groups pre–post-test design was used to measure self-reported levels of knowledge, confidence, and comfort with issues, and needs and terminology related to LGBT+ and palliative care. Results: There was a significant increase in the reported levels of knowledge, confidence, and comfort with issues, needs, and terminology related to LGBT+ and palliative care after attending the training. Most participants reported that they would be interested in further training, that the training is useful for their practice, and that they would recommend it to colleagues. Conclusion: The project illustrates the importance of such programmes and recommends that such educational work is situated alongside wider cultural change to embed LGBT+-inclusive approaches within palliative and end-of-life care services.

How does Medical Assistance in Dying affect end-of-life care planning discussions? Experiences of Canadian multidisciplinary palliative care providers

Background: More than a dozen countries have now legalized some form of assisted dying, and additional jurisdictions are considering similar legislations or expanding eligibility criteria. Despite the persistent controversies about the relationship between medicine, palliative care, and assisted dying, many people are interested in assisted dying. Understanding how end-of-life care discussions between patients and specialist palliative care providers may be affected by such legislation can inform end-of-life care delivery in the evolving socio-cultural and legal environment. Aim: To explore how the Canadian Medical Assistance in Dying legislation affects end-of-life care discussions between patients and multidisciplinary specialist palliative care providers. Design: Qualitative thematic analysis of semi-structured interviews. Participants: Forty-eight specialist palliative care providers from Vancouver (n = 26) and Toronto ( n = 22) were interviewed in person or by phone. Participants included physicians ( n = 22), nurses ( n = 15), social workers ( n = 7), and allied health professionals ( n = 4). Results: Qualitative thematic analysis identified five notable considerations associated with Medical Assistance in Dying affecting end-of-life care discussions: (1) concerns over having proactive conversations about the desire to hasten death, (2) uncertainties regarding wish-to-die statements, (3) conversation complexities around procedural matters, (4) shifting discussions about suffering and quality of life, and (5) the need and challenges of promoting open-ended discussions. Conclusion: Medical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. It remains essential to address psychosocial and existential suffering in medicine, but also to provide timely palliative care to ensure suffering is addressed before it is deemed irremediable. Hence, clarification is required regarding assisted dying as an intervention of last resort. Furthermore, professional and institutional guidance needs to better support palliative care providers in maintaining their holistic standard of care.

Palliative care services for cancer patients in Nepal, a lower-middle-income country

With the rise in cancer burden, need for palliative care services has increased simultaneously and majority of people requiring services are from low- and middle-income countries where palliative care is in primitive stage. Nepal is also facing similar challenges of dealing with cancer care and end-of-life care. From its initiation in the early 1990s, there has been gradual progress in the development of palliative care with joint effort of government as well as non-governmental organizations. Morphine, a major milestone for pain management, is being manufactured in the country for nearly a decade, yet morphine equivalence mg per capita is far below the global average. Currently, Nepal has been placed under ‘Category 3a’ with isolated care provision and there are a lot of challenges to overcome to improve the existing services. Majority of hospice and palliative care centres are located in the capital city and only a few in the periphery. Scarcity of treatment centres and expertise, limited finances, lack of awareness among patients and health care workers, and difficult terrain are major barriers for optimal care. Proper implementation of national guidelines, human resource development and integration of palliative care to primary healthcare level would be crucial steps for further improvement.

New public health approaches to palliative care, a brave new horizon or an impractical ideal? An Integrative literature review with thematic synthesis

Access to palliative care for marginalized communities is frequently problematized as a major challenge facing palliative care services. The traditional response of asking what services can do for the disadvantaged has been invigorated by a new wave of public health measures that embrace death and dying as social processes and ask, what can be done together with such communities as partners working in palliative care. Such work has generated a significant amount of academic, social and political interests over the last 20 years; however, we are yet to see a consistent and sustained change in approach from providers. We argue that this is due to inherent tensions that arise when modelling death, dying and loss as a unified and shared social process. Unresolved tensions destabilize the theoretical foundations and risk misrepresentation of core philosophies. In this integrative review of 75 articles, we present previously undiscussed areas of contention drawing from a pan-disciplinary field of theoretical and empirical evidence. We conclude that new public health approaches lack a consistent and unified theoretical approach. From philosophical, ontological and existential ideas relating to how different stakeholders conceptualize death, to the processes by which communities are motivated and their constituent members empowered through responsibilized notions of duty and reciprocity, there is little acknowledgement of the complex tensions at hand. Increasing academic and political initiative alone is not enough to progress this movement in a manner that achieves its full potential. Instead, we must pay greater attention to the tensions described. This article aims to work with such tensions to better define the landscape of collective moral responsibility in end-of-life care. We believe that this is crucial if palliative care is to avoid becoming a technical speciality with community and communitization reduced to a mere technical solution to more profound questions.

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care.