Naming racism as a root cause of inequities in palliative care research: a scoping review.

BACKGROUND: Racial and ethnic inequities in palliative care are well-established. The way researchers design and interpret studies investigating race- and ethnicity-based disparities has future implications on the interventions aimed to reduce these inequities. If racism is not discussed when contextualizing findings, it is less likely to be addressed and inequities will persist. OBJECTIVE: To summarize the characteristics of 12 years of academic literature that investigates race- or ethnicity-based disparities in palliative care access, outcomes and experiences, and determine the extent to which racism is discussed when interpreting findings. METHODS: Following Arksey & O'Malley's methodology for scoping reviews, we searched bibliographic databases for primary, peer reviewed studies globally, in all languages, that collected race or ethnicity variables in a palliative care context (January 1, 2011 to October 17, 2023). We recorded study characteristics and categorized citations based on their research focus-whether race or ethnicity were examined as a major focus (analyzed as a primary independent variable or population of interest) or minor focus (analyzed as a secondary variable) of the research purpose, and the interpretation of findings-whether authors directly or indirectly discussed racism when contextualizing the study results. RESULTS: We identified 3000 citations and included 181 in our review. Of these, most were from the United States (88.95%) and examined race or ethnicity as a major focus (71.27%). When interpreting findings, authors directly named racism in 7.18% of publications. They were more likely to use words closely associated with racism (20.44%) or describe systemic or individual factors (41.44%). Racism was directly named in 33.33% of articles published since 2021 versus 3.92% in the 10 years prior, suggesting it is becoming more common. CONCLUSION: While the focus on race and ethnicity in palliative care research is increasing, there is room for improvement when acknowledging systemic factors - including racism - during data analysis. Researchers must be purposeful when investigating race and ethnicity, and identify how racism shapes palliative care access, outcomes and experiences of racially and ethnically minoritized patients.

The interaction of socioeconomic status with place of death: a qualitative analysis of physician experiences.

BACKGROUND: Home is a preferred place of death for many people; however, access to a home death may not be equitable. The impact of socioeconomic status on one's ability to die at home has been documented, yet there remains little literature exploring mechanisms that contribute to this disparity. By exploring the experiences and insights of physicians who provide end-of-life care in the home, this study aims to identify the factors perceived to influence patients' likelihood of home death and describe the mechanisms by which they interact with socioeconomic status. METHODS: In this exploratory qualitative study, we conducted interviews with 9 physicians who provide home-based care at a specialized palliative care centre. Participants were asked about their experiences caring for patients at the end of life, focusing on factors believed to impact likelihood of home death with an emphasis on socioeconomic status, and opportunities for intervention. We relied on participants' perceptions of SES, rather than objective measures. We used an inductive content analysis to identify and describe factors that physicians perceive to influence a patient's likelihood of dying at home. RESULTS: Factors identified by physicians were organized into three categories: patient characteristics, physical environment and support network. Patient preference for home death was seen as a necessary factor. If this was established, participants suggested that having a strong support network to supplement professional care was critical to achieving home death. Finally, safe and sustainable housing were also felt to improve likelihood of home death. Higher SES was perceived to increase the likelihood of a desired home death by affording access to more resources within each of the categories. This included better health and health care understanding, a higher capacity for advocacy, a more stable home environment, and more caregiver support. CONCLUSIONS: SES was not perceived to be an isolated factor impacting likelihood of home death, but rather a means to address shortfalls in the three identified categories. Identifying the factors that influence ability is the first step in ensuring home death is accessible to all patients who desire it, regardless of socioeconomic status.

Changing access to mental health care and social support when people living with HIV/AIDS become service providers.

As people living with HIV/AIDS (PHAs) achieve more stable health, many have taken on active peer support and professional roles within AIDS service organizations. Although the increased engagement has been associated with many improved health outcomes, emerging program and research evidence have identified new challenges associated with such transition. This paper reports on the results of a qualitative interpretive study that explored the effect of this role transition on PHA service providers' access to mental health support and self care. A total of 27 PHA service providers of diverse ethno-racial backgrounds took part in the study. Results show that while role transition often improves access to financial and health-care benefits, it also leads to new stress from workload demands, emotional triggers from client's narratives, feeling of burnout from over-immersion in HIV at both personal and professional levels, and diminished self care. Barriers to seeking support included: concerns regarding confidentiality; self-imposed and enacted stigma associated with accessing mental health services; and boundary issues resulting from changes in relationships with peers and other service providers. Evolving support mechanisms included: new formal and informal peer support networks amongst colleagues or other PHA service providers to address both personal and professional challenges, and having access to professional support offered through the workplace. The findings suggest the need for increased organizational recognition of HIV support work as a form of emotional labor that places complex demands on PHA service providers. Increased access to employer-provided mental health services, supportive workplace policies, and adequate job-specific training will contribute to reduced work-related stress. Community level strategies that support expansion of social networks amongst PHA service providers would reduce isolation. Systemic policies to increase access to insurance benefits and enhance sector-wide job preparedness and post-employment support will sustain long-term and meaningful involvement of PHAs in service provision.

The Impact of Socioeconomic Status on Place of Death Among Patients Receiving Home Palliative Care in Toronto, Canada: A Retrospective Cohort Study.

BACKGROUND: Socioeconomic disparities in home death have been noted in the literature. Home-based palliative care increases access to home death and has been suggested as a means to decrease these disparities. AIM: Our study examines the association between socioeconomic status and other demographic factors on place of death in a population receiving home palliative care in Toronto, Canada. DESIGN: This is a retrospective chart review of patients who died between August 2013 and August 2015 when admitted to a home-based palliative care service. Multivariate multinomial regression examined the relationship between the place of death (home, palliative care unit [PCU], or acute care) with age, gender, primary diagnosis, and income quintile. Bivariate logistic regression was fitted to calculate the odds ratio (OR) and probability of preference for home death. SETTING/PARTICIPANTS: Patients receiving home-based palliative care services from the Latner Centre for Palliative Care in Toronto, Canada. RESULTS: A total of 2066 patients were included in multivariate analysis. Patients in the lowest income quintile had increased odds of dying in acute care (OR = 2.41, P < .001) or dying in PCU (OR = 1.64, P = .008) than patients in highest income quintile. Patients in the next lowest income quintiles 2 and 3 were also more likely to die in acute care. The rate of preference for home death was significantly lower in the lowest income quintile (OR = 0.47, P = .0047). CONCLUSIONS: Patients in lower income quintiles are less likely to die at home, despite receiving home-based palliative care, although they may also be less likely to prefer home death.

Residents' reflections on end-of-life conversations: how a palliative care clinical rotation creates meaningful learning opportunities.

BACKGROUND: Good communication at the end-of-life is important for patient outcomes and satisfaction. However, many healthcare providers are hesitant to engage in these conversations due to inadequate training. Classroom and bedside palliative care training have been effective in improving resident communication with patients at the end-of-life, yet the educational mechanisms that promote development remain uncharacterized. The purpose of this study was to better understand how family medicine residents are trained to have goals of care (GOC) conversations during a clinical rotation at a specialized palliative care center. METHODS: We conducted 15 semi-structured interviews with first- and second-year family medicine residents who completed a 4-week palliative care rotation at a specialized palliative care center between July 2013 and June 2014. We asked residents about their educational experiences during the rotation, which included both inpatient and home-visit experiences. Using thematic analysis, we identified and described recurrent experiences reported by participants related to their exposure to and development of GOC conversations. RESULTS: Participants reported feeling more comfortable approaching GOC conversations at the end of the rotation. Residents noted two elements of their training experience that may have facilitated this development: a constructive learning environment that included time and support during and after GOC conversations, and learning activities that provided various levels of supervision and independence. CONCLUSIONS: A palliative care rotation may be an optimal environment for developing GOC conversation skills. Direct observation of learners and fewer time pressures provide important opportunities for mentoring, support, feedback and reflection, which were all noted to facilitate GOC conversation development.

An entrustable professional activity descriptor for medical aid in dying: a mixed-methods study.

BACKGROUND: In jurisdictions where medical aid in dying (MAiD) is legal, there is an obligation to ensure the competence of those who assess eligibility and provide MAiD to patients. Entrustable professional activities (EPAs) are one framework for incorporating competency-based training and assessment into the workplace, so we convened a group of experienced MAiD providers to develop an EPA descriptor for MAiD. METHODS: We performed a mixed-methods sequential qualitative (focus group via 2 teleconferences) and quantitative (survey) study to generate and refine a consensus descriptor using open coding followed by a modified Delphi approach. Participants were experienced MAiD assessors and providers identified purposively from a national community of practice in Canada. RESULTS: Of the 22 MAiD assessors and providers invited to participate in the focus group, 13 (59%) agreed. The focus group divided MAiD into 3 components: assessment, preparation and provision of MAiD. Participants identified key knowledge, skills and attitudes for each component. They also suggested teaching approaches, potential sources of information to evaluate progress and a potential basis for evaluating progress and entrustment. Key points from this descriptor were sent via survey to 88 assessors and providers, of whom 64 (73%) responded. Respondents agreed on all key points except for the conditions of entrustment; these were modified based on feedback and sent back to the respondents for a second Delphi round, where agreement was achieved. INTERPRETATION: We achieved a high degree of agreement on a competency-based descriptor of MAiD in the form of an EPA. This can be used to inform practice standards, curriculum development and/or assessment of competence among learners and practising providers alike.

Providing Medical Assistance in Dying within a Home Palliative Care Program in Toronto, Canada: An Observational Study of the First Year of Experience.

BACKGROUND: Medical Assistance in Dying (MAiD) was legalized in Canada in June 2016. There are no documented experiences of MAiD provision within a home palliative care program. The majority of palliative care physicians in Canada object to MAiD. As one of the largest home-based palliative care providers in Canada, the Temmy Latner Centre for Palliative Care (TLCPC) developed processes to implement MAiD provision within a home palliative care team with diverse attitudes toward MAiD. OBJECTIVE: To demonstrate the feasibility of providing MAiD within a home palliative care setting and describe the population that received MAiD in the first year of legalization. DESIGN: A retrospective chart review identified patients who received or were assessed for MAiD and had a known outcome between June 17, 2016 and June 30, 2017. SETTING/SUBJECTS: Patients receiving home-based palliative care. MEASUREMENTS: Data extracted included age, gender, primary diagnosis, length of time receiving home-based palliative care, and final clinical outcome. RESULTS: Of the 45 patients who were assessed for MAiD, 27 (60%) received MAiD and 18 (40%) did not. The mean age was 74 (range 20-95), 24 (53%) were male, and 33 (73%) had cancer as a primary diagnosis. These 27 patients represent 1.2% of our total patient population during this time period. CONCLUSIONS: MAiD was accessed by 1.2% of the patients within a home palliative care center in the first year of legalization. Patient demographics were consistent with those documented elsewhere. The TLCPC process accommodates the diverse viewpoints of clinicians and emphasizes continuity of palliative care provision.