[End-of-life support experiences at home during the Covid-19 pandemic: Issues and challenges].

Abstract

Objective The aim of this text is to describe the challenges and issues associated with family caregivers during the experience of caring for a person at the end of life at home, in the context of a pandemic. This support situation, already normally demanding, turned out to be more difficult and complicated than usual due to the many challenges and issues associated, in particular, with the health restrictions imposed at the time. Here, we present an analysis of comments gathered from family caregivers during the pandemic. Method Testimonials from caregivers were drawn from a research study entitled COVIDEUIL. The qualitative component of this study included many rich comments drawn from the voices of PPA and collected by questionnaire. For the present article, the focus was on qualitative data relating to the end-of-life situation at home of a loved one. This theme was documented by analyzing the responses of 71 caregivers. These people described, sometimes in detail, the particular circumstances surrounding their loved one's final days and death. Results PPAs report various issues in end-of-life care at home during the pandemic. Some results are similar to studies already carried out, including fatigue and the benefits of outside help, while others are perhaps more amplified, including the lack of support from caregivers, isolation, and the absence of continuity in services, due to the pandemic context. Testimonies show that home care requires physical and mental availability on the part of PPAs; the burden is imposing. In some cases, financial resources have been invested to pay for home care services. Moreover, formal and informal help remains an important element in maintaining home care until the end, otherwise it is compromised and institutional care becomes necessary. Conclusion For PPAs who were able to provide end-of-life care at home for their loved one at the end of life, various challenges were reported. In short, if end-of-life care at home is to be a safe and satisfying experience, PPAs must receive adequate support, and care must be tailored to the needs of the person being cared for. Support at the end of life at home is part of a long process of assistance and care provided by PPAs. The formal assistance offered should follow the evolution of the dyad's journey-PPA and cared-for person. End-of-life care at home is likely to increase as the population ages. As such, care and services must be orchestrated and adapted from the moment the diagnosis is announced. The Observatoire québécois de la proche aidance will certainly be able to assess the impact of the national policy on PPAs and measure the effects on their health, well-being and quality of life (art. 40) (ministère de la Santé et des Services sociaux, 2021a).