Loss, transition and trust: perspectives of terminally ill patients and their oncologists when transferring care from the hospital into the community at the end of life.

ABSTRACT

INTRODUCTION: Most people prefer to die at home. However, most continue to die in hospital. Little is known about the impact on the patient of transferring care from acute sector specialist follow-up to the community. In one cancer centre, a new service-Hospital2Home was set up to facilitate this transfer of care. This study aimed to explore patients' and oncologists' perspectives of the meanings involved in this transition. METHODS: Qualitative study using semistructured one-to-one interviews with 8 terminally ill cancer patients and 13 oncologists. The interviews were audio recorded, transcribed verbatim and analysed using the framework approach. RESULTS: 3 main themes were identified loss, transition and community care. The theme of loss referred to losses associated with the end of treatment and losses associated with the familiar safe relationship between the patient and oncologist. Transition refers to the change from hospital-led to community-based care. Barriers to transition included patient and family acceptance, attachment and concerns about community services. Transition was more acceptable if initiated in a gradual manner. Community care participants found the Hospital2Home service crucial in establishing new trustworthy relationships between community providers and the patient. CONCLUSIONS: Transfer of care from the acute sector to the community represents a delicate crossroad where complex notions of loss should not be underestimated. A gradual transfer of care may improve this if the patient's condition allows. Therefore, introductions to the community team should be timely, and a staggered transfer should be planned. This would improve the experience of the patient, carer and oncologist.