Older persons’ perceptions and experiences of community palliative care: a systematic review of qualitative evidence

Abstract

Objective: The objective of this review was to critically appraise and synthesize qualitative evidence of older persons’ perceptions and experiences of community palliative care. Introduction: Palliative care focuses on the relief of symptoms and suffering at the end of life and is needed by approximately 56.8 million people globally each year. An increase in aging populations coupled with the desire to die at home highlights the growing demand for community palliative care. This review provides an understanding of the unique experiences and perceptions of older adults receiving community palliative care. Inclusion criteria: This review appraised qualitative studies examining the perceptions and experiences of older adults (65 years or older) receiving community palliative care. Eligible research designs included, but were not limited to, ethnography, grounded theory, and phenomenology. Methods: A search of the literature across CINAHL (EBSCOhost), MEDLINE (Ovid), Embase (Ovid SP), Web of Science Core Collection, and Scopus databases was undertaken in July 2021 and updated November 1, 2022. Included studies were published in English between 2000 and 2022. The search for unpublished studies included ProQuest Dissertations and Theses. Study selection, quality appraisal, and data extraction were performed by 2 independent reviewers. Findings from the included studies were pooled using the JBI meta-aggregation method. Results: Nine qualitative studies involving 98 participants were included in this review. A total of 100 findings were extracted and grouped into 14 categories. Four synthesized findings evolved from these categories: i) Older persons receiving palliative care in the community recognize that their life is changed and come to terms with their situation, redefining what is normal, appreciating life lived, and celebrating the life they still have by living one day at a time; ii) Older persons receiving palliative care in the community experience isolation and loneliness exacerbated by their detachment and withdrawal from and by others; iii) Older persons receiving palliative care in the community face major challenges managing prevailing symptoms, medication management difficulties, and costs of medical care and equipment; and iv) Older persons want to receive palliative care and to die at home; however, this requires both informal and formal supports including continuity of care, good communication, and positive relationships with health care providers. Conclusions: Experiences and perceptions of community palliative care vary among older adults. These are influenced by the individual’s expectations and needs, available services, and cost. Older adults’ input into decision-making about their care is fundamental to their needs being met and is contingent on effective communication between the patient, family, and staff across services. Policy that advocates for trained palliative care staff to provide care is necessary to optimize care outcomes, while collaboration between staff and services is critical to enabling holistic care, managing symptoms, and providing compassionate care and support.