Exploring the Experiences and Sense-making of Patients and Informal Caregivers in the Inpatient Specialist Palliative Care Context

Abstract

Palliative and end-of-life care (PEOLC) involves the use of an interprofessional approach to improve quality of life for patients facing life-threatening illness, and their informal caregivers (e.g. family, other loved ones). Though many patients with life-threatening illness report desires to die at home, people with PEOLC needs continue to die in hospital settings. Given the considerable differences between inpatient and outpatient PEOLC settings, and the potentially increased future need for inpatient PEOLC services, it is critical to explore how patients and caregivers experience and make sense of illness and care in such settings. To contribute to this gap in the literature, I conducted a scoping review on patient and informal caregiver experiences in inpatient specialist palliative care (SPC) settings and semi-structured interviews with patients and caregivers on the Bruyère inpatient SPC unit. I identified three overarching themes from included studies (n=104), including patient and informal caregiver: i) perceptions of care, the interprofessional palliative care team, and the care environment; ii) communication with the interprofessional team; and iii) impacts of illness and care on quality of life. I conducted interviews with three patients and four informal caregivers. Using an inductive thematic analysis approach, I identified three key themes of patient and informal caregiver experiences within the context of the Bruyère inpatient SPC unit: i) the journey of dealing with life-threatening illness; ii) impacts of the COVID-19 pandemic; and iii) attempts to cope and find peace. Based on my findings, improvements are needed to the provision of person-centred care to address patients’ and informal caregivers’ supportive needs. Further work is needed to identify reforms to support improved education and awareness about palliative care to patients, informal caregivers, and the general public.