Palliative care principles in ALS.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease associated with progressive dysphagia, dysarthria, extremity weakness, and dyspnea. Although there are some disease-modifying pharmacological treatments available which can modestly slow disease progression, the disease is relentlessly progressive and is ultimately fatal. Patients living with ALS should be supported using the principles of palliative care, and in particular, the use of a holistic approach to support the patients and their families. Evidence would support management of patients living with ALS by a multidisciplinary ALS specialty clinic. These multidisciplinary clinics will help support the multitude of symptoms a patient living with ALS can experience, including dysphagia, communication impairments, dexterity impairments, mobility deficits, and respiratory insufficiency. Formal involvement of specialist-trained palliative practitioners can occur throughout the course of the illness, or when the patient is open to their involvement. There are several models of palliative care that can be followed, including integration of palliative care into the multidisciplinary ALS clinic, separate involvement of a palliative care specialty team, home-based palliative care, telemedicine supported care, and hospice care. Key components of palliative care in ALS are goals-of-care discussions advance directive planning, symptoms management, and end-of-life support.

Advance Care Planning for Seniors Diagnosed with Dementia: A Scoping Review of the Canadian Literature.

Advance care planning (ACP) is commonly recommended for persons living with dementia. Increasing age and uncertain disease trajectory add complexity to this process. A scoping review of the Canadian literature was completed to assess the feasibility and acceptability of ACP for seniors (≥ 65 years of age) diagnosed with dementia and to provide practice, policy, and research recommendations towards ACP as a critical aspect of care. Twenty-nine articles were grouped into five themes: (1) feasibility of patient engagement in ACP; (2) opinions regarding medical assistance in dying (MAiD) for incompetent patients; (3) knowledge translation to support persons living with dementia, professionals, and caregivers; (4) barriers to and facilitators of the delivery of holistic dementia care; and (5) Indigenous health considerations. Additional research should consider socio-demographic and social/cultural factors associated with older persons living with dementia's engagement in ACP. Future policies warrant a multidisciplinary approach when reviewing legalities. Finally, ACP knowledge translation should become a routine aspect of dementia care.

Care Considerations in a Patient- and Family-Centered Medical Assistance in Dying Program.

Objective: Medical Assistance in Dying (MAID) became legal in Canada in June 2016. As part of a project designed to improve end-of-life care for those requesting MAID, qualitative data from patients, families, and providers were used to assess opportunities to enhance patient-and family-centered care (PFCC) in this program. Methods: Thirty interviews were conducted with patients, families, and healthcare providers. Five patients who requested an assessment for MAID, 11 family members, and 14 healthcare providers were interviewed about their experiences in 2017. Comparative coding and thematic analysis were completed with the support of NVivo12. Results: Emotional PFCC considerations included: exploring and validating the emotional journey, navigating the uncertain, judgmental experiences, and the emotional impact on families and the care team. Physical PFCC considerations included: sensitivity in eligibility assessments, weaving in interdisciplinary care, provision of anticipatory guidance, and death location. Spiritual PFCC considerations included: honoring choice, listening to life stories, supporting spiritual needs, and acknowledging loss. Relational PFCC considerations included: defining the circle of support, supporting the circle, and relational investments. Conclusion: Fundamental to a PFCC MAID program, practitioners must be afforded time to provide holistic care. Program-related suggestions include incorporating interdisciplinary care early, and throughout the illness trajectory, consistency in care providers, appropriate anticipatory guidance, and bereavement supports for family, and dedicate space for MAID provisions. Patients and families must be included in the ongoing development and re-evaluation of MAID programs to ensure continued focus on quality end-of-life care.

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.

Hospice care providers experiences of grappling with medical assistance in dying in a hospice setting: a qualitative descriptive study.

BACKGROUND: Rapid implementation of Medical Assistance in Dying (MAiD) across care settings has challenged providers and organizations, including hospices, to develop and implement new modes of practice. The aim of this study was to examine the effects that legalization of MAiD has had on hospice care provider roles within the non-provider context. METHODS: Eight in-depth semi-structured interviews were conducted and a qualitative descriptive approach used to examine hospice care providers experiences in a small western Canadian city. In the study context, patients who choose MAiD are cared for until immediately prior to the procedure when they are transferred off-site to undergo MAiD. Inductive and thematic analyses were undertaken. RESULTS: Participants experienced practical, philosophical, and professional challenges. Despite the overwhelming desire to support patient autonomy and decision-making, some interpreted patient choice for MAiD as rejection of the natural death experience at the hospice. Patient choice for MAiD initiated a new and different pathway of end-of-life care. While participants felt uncertain how best to support patients undergoing MAiD, they shared mixed optimism on how their care provider roles were evolving as their level of experience broadened. While implementation of MAiD was rapid, the introduction of practical and professional supports has remained slow to materialize, leaving many providers to navigate their own personal and professional positions and practices. CONCLUSION: Care providers require a multi-faceted range of clinical, legal, and logistical supports at the practice, organizational, and health system levels, to facilitate care delivery to those requesting and undergoing MAiD and to promote coordinated and holistic patient-centered care. The different pathway for those who chose MAiD may lead care providers to struggle with relational challenges and interpersonal unease. Further research may address how to support those undergoing MAiD within the hospice context.

Hospice Palliative Care (HPC) and Medical Assistance in Dying (MAiD): Results From a Canada-Wide Survey.

BACKGROUND: With the legalization of medical assistance in dying (MAiD) in Canada, physicians and nurse practitioners now have another option within their scope of practice to consider alongside hospice palliative care (HPC) to support the patient and family regardless of their choice toward natural or medically assisted death. To elucidate insights and experiences with MAiD since its inception and to help adjust to this new end-of-life care environment, the membership of the Canadian Hospice Palliative Care Association (CHPCA) was surveyed. METHODS: The CHPCA developed and distributed a 16-item survey to its membership in June 2017, one year following the legalization of MAiD. Data were arranged in Microsoft® Excel and open-ended responses were analyzed thematically using NVivo 12 software. RESULTS: From across Canada, 452 responses were received (response rate: 15%). The majority of individuals worked as nurses (n = 161, 33%), administrators (n = 79, 16%), volunteers (n = 76, 16%) and physicians (n = 56, 11%). Almost 75% (n = 320) of all respondents indicated that they had experienced a patient in their program who had requested MAiD. Participants expressed dissatisfaction with the current psychological and professional support being provided by their health care organization and Ministry of Health - during and after the MAiD procedure. CONCLUSION: The new complexities of MAiD present unique challenges to those working in the health-care field. There needs to be an increased focus on educating/training providers as without proper support, health-care workers will be unable to perform to their full potential/scope of practice while also providing patients with holistic and accessible care.

Barriers to Access: A Feminist Analysis of Medically Assisted Dying and the Experience of Marginalized Groups.

In this article, I argue that a holistic strategy is needed to ascertain how implicit bias, on the part of health-care providers, and structural impediments work together to produce significant barriers to access to medical assistance in dying for marginalized groups-particularly those experiencing intersecting or interlocking forms of identity-based oppressions. In doing so, I also make the case that this kind of primary, patient-centered, and institutional research could benefit from the insights of critical feminism and materialist feminist theory by highlighting and challenging inequalities, opening up debate, and exploring new forms of knowledge production. It also offers a way to shape future research of medical assistance in dying, as it relates specifically to the study of how overlapping forms of structural and interpersonal marginalization (e.g., implicit bias), inclusive of race, gender, class, ethnicity, dis/ability, sexuality, and so on are expressed and experienced.

Canada's Evolving Medicare: End-of-Life Care.

A challenging issue in contemporary Canadian Medicare is the evolution of end-of-life care. Utilizing data from the 2016 and 2018 Health Care in Canada (HCIC) surveys, this paper compares the support and priorities of the adult public (n = 1500), health professionals (n = 400), and administrators (n = 100) regarding key components for end-of-life care just prior to and post legalization of medical assistance in dying (MAiD) in Canada. In 2016 and 2018, the public, health professionals and administrators strongly supported enhanced availability of all proposed end-of-life care options: pain management, hospice and palliative care, home care supports, and medically assisted death. In 2018, when asked which option should be top priority, the public rated enhanced medically assisted death first (32%), followed by enhanced hospice and palliative care (22%) and home care (21%). Enhanced hospice and palliative care was the top priority for health professionals (33%), while administrators rated enhanced medically assisted death first (26%). Despite legalization and increasing support for MAiD over time, health professionals have increasing fear of legal or regulatory reprisal for personal involvement in medically assisted death, ranging from 38% to 84% in 2018, versus 23% to 42% in 2016. While administrators fear doubled since 2016 (40%-84%), they felt the necessary system supports were in place to easily implement medically assisted death. Optimal management of end-of-life care is strongly supported by all stakeholders, although priorities for specific approaches vary. Over time, professionals increasingly supported MAiD but with a rising fear of legal/regulatory reprisal despite legalization. To enhance future end-of-life care patterns, continued measurement and reporting of implemented treatment options and their system supports, particularly around medically assisted death, are needed.

Perceptions and intentions toward medical assistance in dying among Canadian medical students.

BACKGROUND: Medical assistance in dying (MAID) was legalized in Canada in 2016. As of July 2017, approximately 2149 patients have accessed MAID. There remains no national-level data on the perspectives of future physicians about MAID or its changing legal status. We provide evidence from a national survey of Canadian medical students about their opinions, intentions, and concerns about MAID. METHODS: From October 2016 to July 2017, we distributed an anonymous online survey to all students at 15 of Canada's 17 medical schools. The survey collected data on respondent socio-demographic characteristics, features of their medical education, intentions for medical practice, and perspectives on MAID. We analyzed responses using univariate descriptive and stepwise multivariate logistic regression. RESULTS: In 1210 completed surveys, 71% of respondents reported being willing to provide MAID under a legal framework that permits it. Non-religious respondents reported greater willingness to participate in MAID than respondents of any religious affiliation (p < 0.001). Frequency of religious attendance was inversely associated with willingness to provide MAID (p < 0.001). Medical students born in Québec were more willing to provide MAID than respondents from other provinces (OR 2.21; p < 0.001). Age, sex, socioeconomic status, year of medical study, previous academic major, and rural/urban city of birth were not associated with willingness to provide MAID. CONCLUSION: As the current class of medical students becomes the first cohort of new physicians to enter Canada's changing medical and legal landscape around MAID, our findings inform the public debate by examining attributes associated with support or opposition to the practice.

Medical assistance in dying for cancer patients one year after legalization: a collaborative approach at a comprehensive cancer centre.

Medical assistance in dying (maid) is a new medical service in Canada. Access to maid for patients with advanced cancer can be daunting during periods of declining health near the end of life. In this report, we describe a collaborative approach between the centralized coordination service and a regional cancer centre as an effective strategy for enabling interdisciplinary care delivery and enhancing patient-centred care at the end of the patient's cancer journey.

Medical Assistance in Dying: Challenges for Muslim Healthcare Professionals.

There appears to be a great deal of discussion among non-Muslim healthcare professionals, especially nurses and physicians, about medical assistance in dying. However, the discussion of medical assistance in dying among Muslim health caregivers including physicians, social workers, spiritual caregivers, etc. remains insufficient. A thorough analysis of the content of available resources revealed that we need more literature to analyze the attitude of Muslim health caregivers towards medical assistance in dying. This article describes the general attitude towards medical assistance in dying among non-Muslim. This will allow us to observe the challenges and dilemmas faced by Muslim healthcare professionals around medical assistance in dying.

This moral coil: a cross-sectional survey of Canadian medical student attitudes toward medical assistance in dying.

BACKGROUND: In February, 2015, the Supreme Court of Canada struck down the ban on medical assistance in dying (MAiD). In June, 2016, the federal government passed Bill C-14, permitting MAiD. Current medical students will be the first physician cohort to enter a system permissive of MAiD, and may help to ensure equitable access to care. This study assessed medical student views on MAiD, factors influencing these views, and opportunities for medical education. METHODS: An exploratory cross-sectional survey was developed and distributed to medical students across all years of a three-year Canadian undergraduate medical program. The investigators administered the survey to participants during academic sessions from November to December, 2015. Analysis of the results included summary descriptive statistics, Pearson's chi-square test of independence to identify differences between participants by year of study, logistic regression to identify factors that influence students' stances on MAiD, and Wilcoxon signed rank test to measure changes in student support for MAiD and comfort discussing MAiD. RESULTS: There were 405 participants for a response rate of 87%. The majority of students (88%) supported the Supreme Court's decision, 61% would provide the means for a patient to end their life, and 38% would personally administer a lethal medication. Students who were more willing to provide the means for MAiD found medical education/clinical experience and patient autonomy to be important contributors to their stances on MAiD. Those students who were less willing to provide the means for MAiD found religious/spiritual beliefs and teachings, as well as concern about potential negative consequences, to be important contributors to their stances on MAiD. Educational training desired by participants included medicolegal (91%), communication skills (80%), technical skills (75%), and religious (49%). CONCLUSIONS: Medical students generally supported and would provide the means for MAiD to patients. They also indicated a desire for directed medical education on MAiD.