“The system is well intentioned, but complicated and fallible” interviews with caregivers and decision makers about palliative care in Canada

Abstract

Background Canadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families. The primary goal of the study was to identify key factors affecting perceptions of quality PC from the perspective of informal caregivers and decision makers (e.g., program managers) and to understand how their experiences within the health care system may have influenced their perceptions. Methods Nine caregivers and 11 decision makers from Yukon Territory, British Columbia, Alberta, Ontario, & Nova Scotia shared their experiences in PC via interview or focus group. Audio recordings were transcribed verbatim and qualitatively analyzed for themes. Results Three themes emerged, including the Caregiver as Anchor, Bewildering System, and Patient, Caregiver, and Family-Centered Care. While these results resembled other studies on caregivers and individuals receiving PC, the present study also uncovered systemic concerns. There was agreement between the two participant groups across most subthemes, however only caregivers reported feelings of being trapped by the health care system and a general lack of respect from health care professionals. Additionally, caregivers stressed the importance of preserving some sort of normalcy in daily life despite the individual’s illness. Conclusions Caregivers are critical. The health care system expects them to help a great deal, but they often do not feel supported or respected and the system is lacking the capacity and resources to meet their needs while they are grieving loss and struggling to meet demands.

Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care

“…Over 90% of respondents (both users and non-users) relied on the community (family/friends/neighbors/community organizations) to support them before and after bereavement and reported that this informal support was helpful in attending to practical, social, emotional, and spiritual support needs. Other studies support this finding [19][20][21]. The primacy of support from social networks is at the heart of public health approaches to palliative and end of life care which have the potential to enhance integration of services and provide a comprehensive approach that engages the assets of local communities [1,22].…”

“…In the absence of formal case managers, family carers must be supported to develop their capacity in this role if care is to be as effective as possible. Family carer support needs to be at two levels: to help family carers care for the ill person but also to help care for themselves [ 18 , 19 , 20 ]. This can be achieved by instigating a system that assesses and addresses carer support needs, collects regular consumer feedback, and co-designs service improvements.…”

Is progress being made on Canada’s palliative care framework and action plan? A survey of stakeholder perspectives

“…Challenges experienced by palliative family caregivers have been well documented for decades. These include taking on primary responsibility for care without that role necessarily being respected by healthcare providers, challenges navigating a complex system, and physical and emotional effects from heavy caregiving responsibilities [34][35][36][37]. These challenges were exacerbated by the COVID-19 pandemic.…”

A multi-stage process to develop quality indicators for community-based palliative care using interRAI data

“…Despite this, some care caregivers felt that during a crisis, they had to rely on ambulances and the use of the emergency department (ED). Caregivers cited emotional and psychological needs as well as loneliness among those receiving PC [ 45 ]. This rich qualitative data was used to guide QI development in the next phase of the project.…”