The Lived Experience of Palliative Care Patients During the COVID-19 Pandemic

Outcomes 1. Using a person-centred approach, participants will self-report the ability to analyze how best to apply the human aspects of end-of-life care. Participants will self-report the ability to evaluate the psychological, psychosocial and psychospiritual needs of each patient when caring for them in less-than-optimal conditions.2. Using first-hand lived experiences of palliative in-patients during the pandemic, participants will self-report the ability to mitigate some the challenges patients' face toward the end of life under unconventional circumstances including navigating issues around personal autonomy, control over the dying process, responsive care, psychosocial supports and optimal communication.Key MessageThe COVID-19 pandemic challenged the human aspects of providing palliative are. End-of-life patients reported previously unimaginable distortions in care that affected their final days of life. Infection control measures based on separation and isolation impeded the basic human need for compassion, dignity and care approaching death. Optimal end-of-life care insists on proximity and connection; a core tenet of palliative care.IntroductionThe COVID-19 pandemic not only changed the way people lived, but the way they died. It accentuated the vulnerability of patients approaching death; an experience fraught with physical, psychological, social, and spiritual challenges 1-4. The reorganization and reprioritization of health services impacted the experience of dying and grief, underscoring the need to examine how the pandemic shaped patients' abilities to navigate responsive care, psychosocial supports, personal autonomy and optimal communication 1-7.ObjectivesThis study aimed to explore the lived experience of palliative inpatients dying due to any cause during the COVID-19 pandemic.MethodsWe conducted 22 semi-structured interviews with palliative inpatients registered within the Winnipeg Regional Health Authority (WRHA) Palliative Care Program in Manitoba. Interviews were 40-70 minutes, incorporating questions specific to how the pandemic impacted their experience of approaching end-of-life. We also explored considerations of dignity embedded within the model of dignity in the terminally ill. We used thematic analysis to analyze interviews and create a grounded theory framework.ResultsThe thematic analysis revealed six major themes: 1) Putting off going to the hospital, 2) The influence of the pandemic on hospital experience, 3) Maintaining dignity in care, 4) Emotional impact of nearing death, 5) Making sense of end-of-life circumstances and 6) Coping with end-of-life. Additional sub-themes included attentiveness to personhood, loss of independence, respecting "who we were", emotional toll of symptom distress, processing life-limiting illness and relying on spirituality.ConclusionOur findings highlight how the pandemic accentuated the vulnerability of patients approaching death. Patients reported previously unimaginable distortions in care that affected their final months, weeks and days of life. Findings highlight the importance of human connectedness, whereby the pandemic strained, threatened, and undermined these vital connections. These lived experiences of inpatients approaching death offer guidance for future pandemic planning and strategies for providing optimal palliative care.KeywordsScientific Research / Managing Suffering and Distress 1. Using a person-centred approach, participants will self-report the ability to analyze how best to apply the human aspects of end-of-life care. Participants will self-report the ability to evaluate the psychological, psychosocial and psychospiritual needs of each patient when caring for them in less-than-optimal conditions. 2. Using first-hand lived experiences of palliative in-patients during the pandemic, participants will self-report the ability to mitigate some the challenges patients' face toward the end of life under unconventional circumstances including navigating issues around personal autonomy, control over the dying process, responsive care, psychosocial supports and optimal communication. The COVID-19 pandemic challenged the human aspects of providing palliative are. End-of-life patients reported previously unimaginable distortions in care that affected their final days of life. Infection control measures based on separation and isolation impeded the basic human need for compassion, dignity and care approaching death. Optimal end-of-life care insists on proximity and connection; a core tenet of palliative care.