The influence of informal caregivers on the place of death: A study within a home palliative care team.

Abstract

Background: The increase in the prevalence of chronic, complex, or life-limiting diseases is intrinsically associated with population aging. Therefore, it is necessary to reflect on health and social care, and community palliative care can play a fundamental role in responding to this phenomenon.

Objective: This research aimed to understand the factors that affect the care place at the end of life and death, identifying the informal caregivers' profile, the challenges of the all-care process, and the impact of a Community Palliative Care Team (CPCT).

Design: An observational retrospective cohort study was carried out.

Methods: The population of this study was caregivers of patients monitored by a Community Palliative Care Support Team between 2020 and 2022. In the sample, 78 caregivers were included according to inclusion and exclusion criteria, of whom 44 caregivers answered, representing a 55.70% response rate.

Results: Although it is not possible to generalize as we do not have statistically significant correlations, this study concludes that the informal caregivers included in the sample have a profile similar to the national profile in Portugal. They reported high emotional exhaustion, but also physical and financial exhaustion, as the primary care challenges. In addition, the results show that managing the progression of the disease was also highlighted as a challenge by 63.6% of caregivers. The impact of the team monitoring was also evaluated as positive and having an effect in achieving the patient's preference regarding the place of death.

Conclusion: CPCT and informal caregivers are two factors intrinsically linked and influencing the place of death at home when there is congruence between the patients and their caregivers' choices. Social resources and investment in a support network outside the hospital are essential to fulfilling the wishes of patients and families, allowing dignity and quality of life for both. From a medical point of view, these patients are so well or better treated in the community than in the hospital wards.