Home-based Palliative End-of-Life Care

The Research Question

“What does the scientific evidence tell us about the effectiveness of home-based palliative end-of-life care in maximizing the likelihood of death at home and in minimizing symptom burden? What does the evidence tell us about the resources required for the effective delivery of such care?”

Background

The focus of this CHRSP project, home-based palliative end-of-life care, is of interest to health system partners from across Newfoundland and Labrador. This subject was ranked highly enough by all provincial health system partners to be included in the 2020 cycle of CHRSP research projects. The provincial government of Newfoundland and Labrador, in partnership with the Government of Canada is working towards a Home First initiative to ensure that more people can access care in their own communities and in their own homes – an initiative that will include palliative care delivered in the home.

Research indicates that fewer patients die at home than patients and their families would prefer. A key outcome of interest in this report was therefore the place of death— in particular, whether or not a patient died at home. Home-based palliative care (HPC) is an intervention that provincial stakeholders believe has the potential to increase the likelihood that a patient will experience a death at home rather than a death in an institutional care setting. In addition to looking at the place of death, our research examined whether HPC might also improve patient and caregiver lives in other ways, including: reducing overall symptom burden and relieving specific symptoms common in palliative care patients; improving quality of life indicators, such as psychological well-being, physical function, and survival; outcomes specific to caregivers, who are often family members and friends; admission to an institution; and death in an institution. 

Provincial stakeholders also asked us what resources would be required for effective home-based palliative care programs. Unfortunately, the limited research on this issue and the many ambiguities in how resource allocation was reported presented a problem. This led us to try to infer the research results in tables that emphasize the professional personnel and services noted in the highest-quality research literature. This analysis did not definitively answer the question posed.

To carry out this study, CHRSP assembled a multi-disciplinary project team that included research staff at NLCAHR; a Subject Matter Expert, Barbara Pesut, PhD, RN, Research Chair in Palliative and End-of-Life Care at the University of British Columbia; a Health System Leader, Karen Stone, Deputy Minister of Health and Community Services in Newfoundland and Labrador; and representatives from all four NL Regional Health Authorities: Eastern Health, Central Health, Western Health, and Labrador-Grenfell Health. In addition, the project team included researchers from Memorial University and representatives from the Government of Newfoundland and Labrador’s Departments of Children, Seniors, and Social Development, and of Health and Community Services. Patient and caregiver advisers and other community stakeholders also assisted with the contextualization of the synthesis findings.

Key Findings

The following key messages summarize the most relevant findings synthesized in this report and reflect the state of the available research evidence:

  1. The research evidence indicates that patients receiving home-based palliative end-of-life care have a greater likelihood of dying at home when compared to patients receiving usual care.
  2. The research evidence suggests that receiving home-based palliative end-of-life care tends to reduce overall symptom burden for patients.
  3. Competent home-based palliative end-of-life care teams tend to provide patients with a sense of security. Patients view home-based palliative end-of-life care teams as being competent when such teams manage symptoms effectively and communicate skillfully.
  4. Both quality of life and caregiver outcomes are notoriously hard to measure, and the evidence is inconclusive about the impact of home-based palliative end-of-life care on these outcomes. However, we found no evidence to indicate that patients and their caregivers are worse off when they receive home-based palliative end-of-life care.
  5. Limitations in the evidence about the resources that are required to provide effective home-based palliative end-of-life care make it difficult to draw firm conclusions.