Life situation and participation as experienced by adult patients in palliative home care

Background: Many patients are currently cared for at the end-of-life stage at home, and the number is expected to increase. The patient’s participation is a prerequisite for good care, which also relates to ethical principles and evidence-based action. Aim: To describe adult patients’ experiences of their life situation and their participation in palliative home care. Method: A reflective lifeworld approach and a phenomenological meaning analysis were conducted. Six adult patients in palliative home care were interviewed in Sweden during 2018. Results: One essential meaning and five elements of that meaning describe adult patients’ life situations and participation in their palliative home care. The essential meaning referred to needing and endeavouring to live as usual and taking responsibility for life. The five essential elements were: The home should be my home, where I know who is coming through the door; I should know when help is coming and be included when decisions are made; routines should be maintained, but without booking up tomorrow; accept death, feel hope, and plan for relatives after my death; and be aware that death is imminent, but not know when it will come. Conclusions: Participation in palliative home care can be maintained and improved by caregivers behaving as guests in the patient’s home, building up the patient’s trust, showing consideration for patients and their relatives, promoting patients living everyday life as they previously had, asking about the patient’s habits, and giving patients time and continuity in the caregiving relationship. Education should focus on how to have supportive conversations with a patient who is dying and preparing for death