Challenges in home-based palliative care in Norway: a qualitative study of spouses' experiences

INTRODUCTION: Issues around patients' preferred place of care and death are taking greater precedence of late. However, little is known about patients' and carers' experiences of palliative care in the home setting. This study explored carers' views of what determines the quality of home care at the end of life. METHODS: The study made use of systems theory, the purpose of which is to obtain a broad understanding of a phenomenon by looking at the relations between its individual elements. Seven carers (spouses) of people who died having received home-based palliative care in three different municipalities in Norway were interviewed. RESULTS: None of the participants had planned to give or receive palliative care in the home. However, they did not regret that the home had been the place of care. Factors deemed important to acheiving the best possible home-based palliative care included around-the-clock help, holistic care, and affirmation of the significance of the carer's role. CONCLUSION: Health professionals should be more forthcoming in discussing the benefits and challenges of home-based palliative care and make greater acknowledgment of the carer's role. Treatment plans may be helpful in acheiving these goals.