Neuro-oncology clinicians' perspectives on factors affecting brain cancer patients' access to medical assistance in dying: A qualitative study.

In most jurisdictions where medical assistance in dying (MAiD) is legal, patients must have decision-making capacity. Brain cancer often damages the cognitive networks required to maintain decision-making capacity. Using qualitative methodology guided by a relational ethics conceptual framework, this study explored neuro-oncology clinicians' perspectives on access to and eligibility for MAiD for patients diagnosed with brain cancer. We interviewed 24 neuro-oncology clinicians from 6 countries. Participants described the unique challenges facing brain cancer patients, potentially resulting in their inequitable access to MAiD. The findings highlight the importance of early end-of-life conversations, advance care planning, and access to end-of-life treatment options.

Experiences of healthcare providers with eligible patients' loss of decision-making capacity while awaiting medical assistance in dying.

Background: In Canada, under Bill C-14, patients who met all eligibility requirements were prevented from accessing medical assistance in dying (MAiD) following their loss of decision-making capacity while awaiting MAiD. The changes introduced with Bill C-7 continue to limit access to patients who did not enter a waiver of final consent agreement with their healthcare providers. Little is known about the experiences with patients' loss of capacity to consent and subsequent ineligibility for MAiD. Understanding healthcare providers' experiences has important implications for improving end-of-life care for those with capacity-limiting conditions. Purpose: To explore Canadian healthcare providers' experiences with end-of-life of eligible patients who became ineligible for MAiD due to their loss of decision-making capacity to consent and the relational influences on their experiences prior to the implementation of Bill C-7 in Canada. Method: A critical qualitative methodology and a feminist ethics theoretical lens guided this study. A voice-centred relational approach that allowed an in-depth exploration of how power, relationality and moral agency influenced participants' experiences was used for data analysis. Data consisted of semi-structured interviews with 30 healthcare providers. Findings: The analysis resulted in the following four main themes and corresponding subthemes: (1) identifying factors that may result in ineligibility for MAiD due to capacity loss; (2) maintaining eligibility required to access MAiD; (3) preparing for an alternative end-of-life; (4) experiencing patients' capacity loss. Discussion: This study highlights that while MAiD is legally available to eligible Canadians, access to MAiD and care for eligible patients who were unable to access MAiD due to their loss of decision-making varied based on the geographical locations and access to willing MAiD and end-of-life care providers. The availability of high-quality palliative care for patients throughout the MAiD process, including following the loss of capacity to consent and subsequent ineligibility, would improve the end-of-life experience for all those involved. The need to establish a systematic approach to prepare and care for patients and their families following the patients' loss of capacity and subsequent ineligibility for MAiD is also identified.

Nurses' Experiences of their Ethical Responsibilities during Coronavirus Outbreaks: A Scoping Review.

Globally, nurses have experienced changes to the moral conditions of their work during coronavirus outbreaks. To identify the challenges and sources of support in nurses' efforts to meet their ethical responsibilities during SARS, MERS, and COVID-19 outbreaks a scoping review design was chosen. A search was conducted for eligible studies in Ovid MEDLINE, Ovid Embase and Embase Classic, EBSCO CINAHL Plus, OVID APA PsycInfo, ProQuest ASSIA, and ProQuest Sociological Abstracts on August 19, 2020 and November 9, 2020. The PRISMA-ScR checklist was used to ensure rigor. A total of 5204 records were identified of which 41 studies were included. Three themes were identified related challenges in meeting ethical responsibilities: 1) substandard care, 2) impeded relationships, 3) organizational and system responses and six themes relating to sources of support: 1) team and supervisor relationships, 2) organizational change leading to improved patient care, 3) speaking out, 4) finding meaning, 5) responses by patients and the public, 6) self-care strategies.Our review revealed how substandard care and public health measures resulted in nurses not being fully able to meet their ethical responsibilities of care. These included the visitation policies that impeded the support of patients by nurses and families, particularly with respect to face-to-face relationships. Organizational and system responses to the evolving outbreaks, such as inadequate staffing, also contributed to these challenges. Supportive relationships with colleagues and supervisors, however, were very beneficial, along with positive responses from patients and the public.

Health care providers' ethical perspectives on waiver of final consent for Medical Assistance in Dying (MAiD): a qualitative study.

BACKGROUND: With the enactment of Bill C-7 in Canada in March 2021, people who are eligible for medical assistance in dying (MAiD), whose death is reasonably foreseeable and are at risk of losing decision-making capacity, may enter into a written agreement with their healthcare provider to waive the final consent requirement at the time of provision. This study explored healthcare providers' perspectives on honouring eligible patients' request for MAiD in the absence of a contemporaneous consent following their loss of decision-making capacity. METHOD: A critical qualitative methodology, using a feminist ethics theoretical lens with its focus on power and relationality, was used to examine how socio-political and environmental contexts influenced healthcare providers' moral agency and perspectives. Semi-structured interviews were conducted with 30 healthcare providers (13 physicians, six nurse practitioners, nine nurses and two social workers) from across Canada who provide MAiD-related care. RESULTS: Themes identified include; (1) balancing personal values and professional responsibilities, (2) anticipating strengths and limitations of the proposed waiver of final consent amendment, (3) experiencing ethical influences on decisions to enter into written agreements with eligible patients, (4) recognizing barriers to the enactment of MAiD in the absence of a contemporaneous consent and (5) navigating the potential for increased risks and burden. DISCUSSION: To our knowledge, this is the first study in Canada to explore healthcare providers' perspectives on waiving the final consent for MAiD using a written agreement. Most participants supported expanding eligible people's access to MAiD following loss of capacity, as they believed it would improve the patients' comfort and minimize suffering. However, the lack of patients' input at the time of provision and related ethical and legal challenges may impact healthcare providers' moral agency and reduce some patients' access to MAiD. Providers indicated they would enter into written agreements to waive final consent for MAiD on a case-by-case basis. This study highlights the importance of organizational, legal and professional support, adequate resources, clear policies and guidelines for the safety and wellbeing of healthcare providers and to ensure equitable access to MAiD.

Nurses' experiences of ethical responsibilities of care during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has forced rapid and widespread change to standards of patient care and nursing practice, inevitably leading to unprecedented shifts in the moral conditions of nursing work. Less is known about how these challenges have affected nurses' capacity to meet their ethical responsibilities and what has helped to sustain their efforts to continue to care. RESEARCH OBJECTIVES: 1) To explore nurses' experiences of striving to fulfill their ethical responsibilities of care during the COVID-19 pandemic and 2) to explore what has fostered nurses' capacity to fulfill these responsibilities. RESEARCH DESIGN: A generic qualitative approach was used incorporating concepts coming from fundamental features of care. PARTICIPANTS: Twenty-four Canadian Registered Nurses from a variety of practice settings were interviewed. ETHICAL CONSIDERATIONS: After receiving ethics approval, signed informed consent was obtained before participants were interviewed. FINDINGS: Four themes were identified. 1) Challenges providing good care in response to sudden changes in practice. 2) Tensions in juggling the responsibility to prevent COVID-19 infections with other competing moral responsibilities. 3) Supports to foster nurses' capacity to meet their caring responsibilities. 4) The preservation of nurses' moral identity through expressions of gratitude and health improvement. DISCUSSION: Infection control measures and priorities set in response to the pandemic made at distant population and organizational levels impacted nurses who continued to try to meet the ideals of care in close proximity to patients and their families. Despite the challenges that nurses encountered, the care they received themselves enabled them to continue to care for others. Nurses benefited most from the moral communities they had with their colleagues and occasionally nurse leaders, especially when they were supported in a face-to-face manner.Conclusion: Moral community can only be sustained if nurses are afforded the working conditions that make it possible for them to support each other.

Neuro-Oncology Clinicians' Attitudes and Perspectives on Medical Assistance in Dying.

BACKGROUND: Medical assistance in dying (MAiD), also known as physician-assisted death, is currently legal in several locations across the globe. Brain cancer or its treatments can lead to cognitive impairment, which can impact decision-making capacity for MAiD. OBJECTIVE: We sought to explore neuro-oncology clinicians' attitudes and perspectives on MAiD, including interpretation of decision-making capacity for patient MAiD eligibility. METHODS: An online survey was distributed to members of national and international neuro-oncology societies. We asked questions about decision-making capacity and MAiD, in part using hypothetical patient scenarios. Multiple choice and free-text responses were captured. RESULTS: There were 125 survey respondents. Impaired cognition was identified as the most important factor that would signal a decline in patient capacity. At least 26% of survey respondents had moral objections to MAiD. Respondents thought that different hypothetical patients had capacity to make a decision about MAiD (range 18%-58%). In other hypothetical scenarios, fewer clinicians were willing to support a MAiD decision for a patient with an oligodendroglioma (26%) vs. glioblastoma (41%-70%, depending on the scenario). Time since diagnosis, performance status, and patient age seemed to affect support for MAiD decisions (Fisher's exact P-values 0.007, < 0.001, and 0.049, respectively). CONCLUSION: While there are differing opinions on the moral permissibility of MAiD in general and for neuro-oncology patients, most clinicians agree that capacity must be assessed carefully before a decision is made. End-of-life discussions should happen early, before the capacity is lost. Our results can inform assessments of patient capacity in jurisdictions where MAiD is legal.

An Analysis of the Long-Term Care Policy Mandates Implemented in Canada during the First Wave of the COVID-19 Pandemic.

The first wave of the COVID-19 pandemic had a catastrophic impact on Canada's long-term care system. This report compares the experiences of the five Canadian provinces that were most affected by COVID-19. This includes a comparison of the five mandates that provincial governments implemented in order to protect long-term care residents. Findings from this report indicate that the Canadian provinces whose long-term care systems were most devastated by COVID-19 failed their residents by responding too slowly compared with provinces with similar long-term care systems. This lesson should guide policy reform to safeguard residents during the second wave and beyond.

Expanding the Concept of End-of-life Care in Long-term Care: A Scoping Review Exploring the Role of Healthcare Assistants.

BACKGROUND: The context of care provided in long-term care homes is changing, as an increasing number of older adults are entering long-term care with advance stages of illness and higher care needs. Long-term care homes are quickly becoming the place of death for an increasing number of older adults, despite recent literature identifying inadequate and suboptimal levels of end-of-life care. Within long-term care, healthcare assistants represent 60%-70% of the unregulated workforce and provide 70%-90% of the direct care to residents. Research indicates that a high level of uncertainty exists surrounding the role of healthcare assistants in end-of-life care, with numerous studies reporting the role of healthcare assistants to be 'unclear' with varying levels of responsibilities and autonomy. OBJECTIVE: The purpose of this scoping review was to explore healthcare assistants' experiences and perspectives of their role in end-of-life care in long-term care. METHODS: We applied Arksey and O'Malley's methodological framework, with recommendations from Levac and colleagues' guiding principles. Electronic databases and the grey literature were searched for relevant articles. Search concepts included end-of-life care and healthcare assistants. Articles were included in this review if they explored healthcare assistants' experiences or perspectives of providing end-of-life care in long-term care. The peaceful end of life theory by Ruland and Moore (1998) was used to organise data extraction and analysis. RESULTS: A total of n = 15 articles met the inclusion criteria. The most predominant role-required behaviours reported by healthcare assistants were as follows: psychosocial support to significant others, knows the resident's care wishes and physical care with respect and dignity. The most predominant extra-role behaviours reported by healthcare assistants were as follows: becoming emotionally involved, acting as extended family and ensuring residents do not die alone. CONCLUSIONS: Findings from this review expanded the concept of end-of-life care by illustrating the role-required and extra-role behaviours healthcare assistants perform when providing end-of-life care in long-term care. IMPLICATIONS FOR PRACTICE: Findings from this scoping review highlight the numerous behaviours healthcare assistants perform outside their role description in order to provide end-of-life care to dying residents in long-term care. These findings could inform policymakers and managers of long-term care homes.

Relational influences on experiences with assisted dying: A scoping review.

BACKGROUND: Family members and healthcare providers play an integral role in a person's assisted dying journey. Their own needs during the assisted dying journey are often, however, unrecognized and underrepresented in policies and guidelines. Circumstances under which people choose assisted dying, and relational contexts such as the sociopolitical environment, may influence the experiences of family members and healthcare providers. ETHICAL CONSIDERATIONS: Ethics approval was not required to conduct this review. AIM: This scoping review aims to identify the relational influences on the experiences of family members and healthcare providers of adults who underwent assisted dying and of those unable to access assisted dying due to the loss of capacity to consent. METHODS: A literature search was conducted in four databases, including MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PsycINFO. The search retrieved 12,074 articles, a number narrowed down to 172 articles for full-text screening. Thirty-six articles met the established inclusion criteria. A feminist relational framework guided the data analysis. RESULTS: Five key themes on the influences of family members' and healthcare providers' experiences throughout the assisted dying process were synthesized from the data. They include (1) relationships as central to beginning the process, (2) social and political influences on decision making, (3) complex roles and responsibilities of family members and healthcare providers, (4) a unique experience of death, and (5) varying experiences following death. CONCLUSION: The feminist relational lens, used to guide analysis, shed light on the effect of the sociopolitical influences and the relationships among patients, families, and healthcare providers on each other's experiences. Addressing the needs of the family members and healthcare providers is vital to improving the assisted dying process. Including families' and healthcare providers' needs within institutional policies and enhancing collaboration and communication among those involved could improve the overall experience.