Practices of and Perspectives on Palliative Sedation Among Palliative Care Physicians in Ontario, Canada: A Mixed-Methods Study.

Background: Palliative sedation (PS) is a therapeutic intervention employed to manage severe and refractory symptoms in terminally ill patients at end of life. Inconsistencies in PS practice guidelines coupled with clinician ambiguity have resulted in confusion about how PS is best integrated into practice. Understanding the perspectives, experiences, and practices relating to this modality will provide insight into its clinical application and challenges within the palliative care landscape. Objective: The aim is to explore the perspectives of palliative care physicians administering PS, including how practitioners define PS, factors influencing decision making about the use of PS, and possible reasons for changes in practice patterns over time. Methods: A survey (n = 37) and semistructured interviews (n = 23) were conducted with palliative care physicians throughout Ontario. Codes were determined collaboratively and applied line-by-line by two independent investigators. Survey responses were analyzed alongside interview transcripts and noted to be concordant. Themes were generated through reflexive thematic analysis. Results: Five key themes were identified: (1) lack of standardization, (2) differing definitions, (3) logistical challenges, (4) perceived "back-up" to Medical Assistance in Dying, and (5) tool of the most responsible physician. Conclusion: There was significant variability in how participants defined PS and in frequency of use of PS. Physicians described greater ease implementing PS when practicing in palliative care units, with significant barriers faced by individuals providing home-based palliative care or working as consultants on inpatient units. Educational efforts are required about the intent and practice of PS, particularly among inpatient interprofessional teams.

Use of palliative sedation following Medical Assistance in Dying (MAiD) legislation: A mixed-methods study of palliative care providers.

OBJECTIVES: Palliative sedation (PS) and Medical Assistance in Dying (MAiD) are options for end-of-life (EOL) care in Canada, since the latter was legalized in 2016. Little research to date has explored the potential impact of MAiD on PS practices. This study investigated physicians' perceptions of their practices surrounding PS and how they may have changed since 2016. METHODS: A survey (n=37) and semi-structured interviews (n=23) were conducted with palliative care providers throughout Ontario. Questions focused on PS practices and explored potential changes following the implementation of MAiD. Codes were determined collaboratively and applied line-by-line by 2 independent investigators. Survey responses were analyzed alongside interview transcripts and noted to be concordant. Themes were generated via reflexive thematic analysis. RESULTS: Thematic analysis yielded the following themes: (1) Increased patient/family knowledge of EOL care; (2) More frequent/fulsome discussions; (3) Normalization/repositioning of PS; and (4) Conflation and differentiation of PS/MAiD. Across these themes, participants espoused increased patient, family, and provider comfort with PS, which may stem equally from the advent of MAiD and the growth of palliative care in general. Participants also emphasized that, following MAiD, PS is viewed as a less radical intervention. SIGNIFICANCE OF RESULTS: This is the first study to investigate physicians' perspectives on the impact of MAiD on PS. Participants strongly opposed treating MAiD and PS as direct equivalents, given the differences in intent and eligibility. Participants stressed that MAiD requests/inquiries should prompt individualized assessments exploring all avenues of symptom management - the results of which may or may not include PS.

RAPID framework for improved access to precision oncology for lethal disease: Results from a modified multi-round delphi study.

Introduction: Predictive oncology, germline technologies, and adaptive seamless trials are promising advances in the treatment of lethal cancers. Yet, access to these therapies is stymied by costly research, regulatory barriers, and structural inequalities worsened by the COVID-19 pandemic. Methods: To address the need for a comprehensive strategy for rapid and more equitable access to breakthrough therapies for lethal cancers, we conducted a modified multi-round Delphi study with 70 experts in oncology, clinical trials, legal and regulatory processes, patient advocacy, ethics, drug development, and health policy in Canada, Europe, and the US. Semi-structured ethnographic interviews (n = 33) were used to identify issues and solutions that participants subsequently evaluated in a survey (n = 47). Survey and interview data were co-analyzed to refine topics for an in-person roundtable where recommendations for system change were deliberated and drafted by 26 participants. Results: Participants emphasized major issues in patient access to novel therapeutics including burdens of time, cost, and transportation required to complete eligibility requirements or to participate in trials. Only 12% of respondents reported satisfaction with current research systems, with "patient access to trials" and "delays in study approval" the topmost concerns. Conclusion: Experts agree that an equity-centered precision oncology communication model should be developed to improve access to adaptive seamless trials, eligibility reforms, and just-in-time trial activation. International advocacy groups are a key mobilizer of patient trust and should be involved at every stage of research and therapy approval. Our results also show that governments can promote better and faster access to life-saving therapeutics by engaging researchers and payors in an ecosystem approach that responds to the unique clinical, structural, temporal, and risk-benefit situations that patients with life-threatening cancers confront.

Perception of roles across the interprofessional team for delivery of medical assistance in dying.

In 2016, Canada joined many jurisdictions worldwide in legalizing Medical Assistance in Dying (MAiD). Given the paucity of qualitative research regarding the involvement of interprofessional health care providers (HCPs) in MAiD, the goal of this study was to better understand how HCPs viewed their role(s). Semi-structured interviews were conducted with 3 pharmacists, 10 nurses, and 8 social workers at an academic hospital in Toronto. Thematic analysis generated six broad themes: 1) Practical/Technical Component, 2) Education, 3) Support, 4) "Part of the Job," 5) "All of the Job," and 6) Lack of Published Information. While nurses and social workers espoused many commonalities, nursing roles were more "in the moment," whereas social workers viewed their roles as beginning earlier and extending after provision of MAiD. There was a spectrum of how participants perceived their role: pharmacists minimized the task of dispensing medications as an insignificant experience, nurses viewed involvement as consistent with their other professional duties (specifically non-MAiD deaths), and social workers described MAiD as a unique opportunity to employ the full gamut of their skills. The study highlights the importance of supporting HCPs through education and information at both regulatory and research levels, recognizing the key roles they play in MAiD.

Medical assistance in dying and the meaning of care: Perspectives of nurses, pharmacists, and social workers.

Medical Assistance in Dying (MAiD) was legalized in Canada in 2016. While it has generated significant academic interest, the experiences of healthcare workers other than physicians remain understudied. This paper reports on a qualitative study of interprofessional Healthcare Providers (HCPs) involved in the provision of MAiD in order to: (1) characterize providers' views about the care they offer in general; (2) examine whether or not they consider MAiD a form of care; and (3) explore their reasons for viewing or not viewing MAiD as care. Semi-structured qualitative interviews were conducted with ten nurses, eight social workers, and three pharmacists with firsthand experience delivering MAiD at an academic hospital in Toronto, Canada. The study was approved by the hospital's REB. Written informed consent was obtained prior to participation. Codebook thematic analysis and template analysis generated four themes: (1) care as advocacy, (2) care as easing suffering, (3) care as psychosocial, and (4) care as relational. Every participant viewed MAiD as a form of care and drew on these four themes to authenticate MAiD as care. Participants consider MAiD a form of care for patients, families, other healthcare workers, and even themselves. In alternating and composite fashion, they describe MAiD in terms of autonomy, easing suffering, and a kind death for the dying (and those entrusted with their care)-a complex choreography of social discourses and moral logics that refuse to settle into a simple dichotomy of "choice versus care." Participants depict MAiD in many of the same terms and imagery they use to describe the care they offer in general. In light of ongoing social controversies surrounding MAiD, HCPs utilize a range of logics strategically to repel negative attention and enable their participation in what they see as a caring end for their patients.

Allied Health Care Providers Participating in Medical Assistance in Dying: Perceptions of Support.

This study explored the experience of pharmacists, social workers, and nurses who participated in Medical Assistance in Dying (MAiD) in a tertiary care Canadian hospital. Consenting staff participated in qualitative semistructured interviews, which were then analyzed for thematic content. This article reports on the broad theme of "support" from the perspective of the 3 professions, focusing on the diversity in perceptions of support, how MAiD was discussed within health care teams, feelings of gratuitous or excessive gestures of support, ambivalence over debriefs, and the importance of informal support. While pharmacists and social workers generally felt part of a community that supported MAiD, nurses more often expressed opinions as highly divergent. The key finding across all themes was the central importance of the culture on any unit with respect to MAiD and specifically the role of the unit manager in creating either a positive open space for communication or a more silent or closed space. Nursing noted that in the latter setting many gestures of support were experienced as insincere and counterproductive, as were debriefs. We outline several recommendations for managers based on the study results with the intent of tailoring support for all professionals involved in MAiD.