Summary of Completed Project
The research project "The Role of Close Relations in Cancer Patients’ Decisions on Home Death" explored the preference for home death when one partner in a couple was seriously ill with cancer and wanted to die at home. The study utilized a qualitative design and was based on 23 interviews with couples, individual interviews with the widows or widowers from these couples, and interviews with bereaved spouses who had experienced the home death of a partner.
The interviews highlighted the relational aspects of home death, and how couples negotiated care, autonomy, and the emotional and practical challenges of dying at home. The results demonstrated how the home served as a sanctuary—a refuge providing security, control, and continuity—while navigating serious illness and impending death. Even as challenges arose as death approached, the home maintained its existential significance as a place where life endured through illness and beyond. However, the sense of security at home was essential for both patients and their spouses. As increased symptoms and care needs led to a decline in this feeling, transitioning to a healthcare institution became necessary. In cases where a home death was not possible, despite the couple's initial hopes, the widowed partner found that this outcome ultimately turned out for the best for all involved. The results also highlighted the impact of cultural expectations on both the preference for a home death and communication about death. Navigating ideals and realities proved difficult for some, possibly adding to concerns in an already distressed time.
Overall, the project underscores that dying at home is fundamentally a relational matter, shaped by considerations of mutual care, love, and shared biography, which influence the preference and management of dying at home.
About the project
In this project we wish to explore how the question of home death is raised and handled between couples. In addition, we will consider how patients and their spouses/partners experience spending time together and prepare for the patient to die at home, and what makes home death possible, or not. Knowledge from the project might help health care services to support dying patients and their families and better facilitate home death, when this is wished for.
Background
For many cancer patients in Norway, the preferred place of death is in their own home. However, the gap between cancer patients' preferences and actual place of death is significant.
In order for home death to be possible, the cancer patient must have access to home services and palliative care, not live alone, but have a close relative, preferably a spouse / partner. The latter aspect being highlighted as a crucial condition for home death. Care and help from the spouse / partner is of great importance for a person to be able to spend time at home and die at home. However, home death is a complex process, involving the patient, family and professionals, where the knowledge on how couples discuss, handle and plan for home death is limited.
Methods
The study has a qualitative research design with semi structured interviews. We wish to meet the couples in their own home. The interviews will have emphasis on how the question of home death was brought up, how the couple experience the present situation at home, and what they think about the time ahead. After the patient´s death, we wish to interview the bereaved person about the end-of-life period of time at home, and the circumstances leading to the actual place of death.
Objectives
Knowledge from the project might help cancer patients and their spouses/partners to plan for home death when this is wished for. In addition, it can help health care services to support dying patients and their families and better facilitate home death.
Financing
Cooperation
Norwegian Cancer Soceity; Nes municipality; Horten municipality; Fransiskushjelpen; Frogner district in Oslo; Palliative care unit, Akershus University Hospital.
Start – Finish
April 2021 – December 2024