The Evolving Roles and Expectations of Inpatient Palliative Care Through COVID-19: a Systematic Review and Meta-synthesis.

BACKGROUND: Palliative care performed a central role in responding to the systemic suffering incurred by the COVID-19 pandemic. Yet, few studies have elucidated the inpatient palliative care specialists' experiences and perceptions. OBJECTIVE: Systematically review and synthesize the evolving roles and expectations of inpatient palliative care specialists in response to COVID-19. DESIGN: A systematic review and meta-synthesis informed by Thomas and Harden's framework and Pozzar et al.'s approach was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. DATA SOURCES: MEDLINE, EMBASE, CINAHL, and PubMed were systematically searched for articles published between December 2019 and March 2023. We included all peer-reviewed qualitative and mixed-method literature studying the roles and expectations of inpatient palliative care specialists. A mixed-method appraisal tool was used for quality assessment. RESULTS: Of 3869 unique articles, 52 were included. Studies represented North American (n = 23), European (n = 16), South American (n = 4), Oceanic (n = 2), Asian (n = 2), West African (n = 1), Middle Eastern (n = 1), and inter-continental settings (n = 3). Most were reported in English (n = 50), conducted in 2020 (n = 28), and focused on the perspectives of inpatient palliative care clinicians (n = 28). Three descriptive themes captured the roles and expectations of inpatient palliative care specialists: shifting foundations, reorienting to relationships, and evolving identity. Two analytical themes were synthesized: palliative care propagates compassion through a healing presence, and palliative care enhances the systemic response to suffering through nimble leadership. CONCLUSION: Inpatient palliative care specialists responded to the COVID-19 pandemic by establishing their healing presence and leading with their adaptability. To develop institutionally tailored and collaborative responses to future pandemics, future studies are needed to understand how inpatient palliative care clinicians are recognized and valued within their institutions.

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.

Teleological care and the last years of life.

The final years of life present challenges for care. In middle-/high-income countries, the percentage of people of advanced age in the population is growing, and the dying process continues to become more complex and protracted. We propose that a new understanding of care, 'teleological care', be considered as an important response to the contemporary challenges of the final years of life. Teleological care is a philosophy of care built around the root idea of a telos (i.e. end) in three senses: (1) the end of life as a temporal limit; (2) the ends of life as the individual's purpose and meaning; (3) the end of life as the meaning of life as a whole. In its practice, teleological care adheres to principles of (1) fidelity of practitioner to patient; (2) generalism of practitioners; and (3) coordination of care within existing services. With this philosophy and practice, care is administered by generalist health care professionals arranging for flow between care that attempts to reverse, stop or slow the disease process when appropriate, with care to address symptoms, and with care that responds to the difficulties of dying. Teleological care involves already existing programmes in roughly their present forms, serving as an overarching layer of organization added to the existing systems. Teleological care refocuses the concept of care to the patient's perspective with emotional, spiritual and practical support for facing the end of life, and a space for narrative and reflection within a wider circle of care.

Framework for continuous palliative sedation therapy in Canada.

BACKGROUND: Canada does not have a standardized ethical and practice framework for continuous palliative sedation therapy (CPST). Although a number of institutional and regional guidelines exist, Canadian practice varies. Given the lack of international and national consensus on CPST, the Canadian Society for Palliative Care Physicians (CSPCP) formed a special task force to develop a consensus-based framework for CPST. OBJECTIVE: Through a preliminary review of sedation practices nationally and internationally, it was determined that although considerable consensus was emerging on this topic, there remained both areas of contention and a lack of credible scientific evidence to support a definitive clinical practice guideline. This led to the creation of a framework to help guide policy, practice, and research. METHODS: This framework was developed through the following steps: 1) literature review; 2) identification of issues; 3) preparation of a draft framework; 4) expert consultation and revision; 5) presentation at conferences and further revision; and 6) further revision and national consensus building. RESULTS: A thorough literature review, including gray literature, of sedation therapy at the end of life was conducted from which an initial framework was drafted. This document was reviewed by 30 multidisciplinary experts in Canada and internationally, revised several times, and then submitted to CSPCP members for review. Consensus was high on most parts of the framework. CONCLUSION: The framework for CPST will provide a basis for the development of safe, effective, and ethical use of CPST for patients in palliative care and at the end of life.

'Early terminal sedation' is a distinct entity.

There has been much discussion regarding the acceptable use of sedation for palliation. A particularly contentious practice concerns deep, continuous sedation given to patients who are not imminently dying and given without provision of hydration or nutrition, with the end result that death is hastened. This has been called 'early terminal sedation'. Early terminal sedation is a practice composed of two legally and ethically accepted treatment options. Under certain conditions, patients have the right to reject hydration and nutrition, even if these are life-sustaining. Patients are also entitled to sedation as palliation for intolerable, intractable suffering. Though early terminal sedation is thought to be rare at present, the changing nature of palliative medicine suggests its use will increase. Arguments regarding early terminal sedation have failed to recognize early terminal sedation as a distinct legal and ethical entity. It can be seen as both the simple sum of treatment refusal and sedation for palliation, analogous to terminal sedation. It can also be seen as an indivisible palliative treatment, more analogous to assisted suicide or euthanasia. But ultimately, it is wholly analogous neither to terminal sedation given when death is imminent, nor to assisted suicide or euthanasia. This paper contends that early terminal sedation should be considered as a distinct entity. Such a reconception promises to provide a way forward in the debate, practice and policy regarding this contentious area of palliative medicine.

Women experience higher levels of fatigue than men at the end of life: a longitudinal home palliative care study.

Few studies have evaluated sex differences in the prevalence, severity, and correlates of fatigue at the end of life. The Brief Fatigue Inventory, McGill Quality of Life (MQOL) Questionnaire, and Karnofsky Performance Scale were administered at two-week intervals to 102 patients in a home palliative program. Outcomes in the sample and a regional palliative database (n=3,096) were analyzed. Cancer was the diagnosis in 96% of patients enrolled. Prevalence (P=0.0091) and severity of fatigue (P<0.001) were higher in women at entry and in a repeated measures analysis over time (severity, P=0.0048). Performance status did not explain this difference. MQOL scores were inversely correlated to fatigue (Spearman coefficient=-0.48, P<0.0001), but did not differ by sex. There was no difference in fatigue interference with MQOL in women and men. Although depression was higher in women (P=0.042) and related to fatigue at entry, it did not explain the sex difference in fatigue scores. Of the sociodemographic variables examined, neither education nor living situation contributed to the fatigue difference. This study shows a sex effect in the fatigue experienced by patients with advanced illnesses, which is not explained by baseline differences in performance, depression, MQOL, education, or living situation. That fatigue interference with MQOL is the same for men and women suggests that higher fatigue scores in women reflect not only a difference in the dimension of fatigue severity, but are also relevant in relation to impact on QOL. Assessment of fatigue should include the dimension of QOL important for both women and men.