Patients’ experiences of transfers between care settings in palliative care: an interview study

Abstract

Palliative patients often suffer from serious illness and commonly move between care settings. As such, transfers of patients can take place between acute hospital based care and community based care in both directions. The involvement of multiple caregivers providing care across settings causes fragmentation of care. To address this challenge and to optimize coordination and continuity of care, we explored experiences of palliative patients regarding their transfers between care settings and the perceived role of the treating family physician. Qualitative interview study of 20 palliative patients. Participating settings were the hospital and hospitals' palliative care unit, the nursing home, the home care setting and the palliative day care centre. A constant comparative method was used to analyze data. Although the home was considered the preferred residence, perceptions of unsafety arose in cases of increased symptom burden and when the organization of home care was insufficiently geared to the patients' needs. Both the nursing home and the palliative care unit offered safety and good care when home residence became unfeasible. Upon hospital admission, experiences did not always meet expectations, varying significantly depending on the hospital, type of ward and reason for hospitalization. Perceived issues regarding hospital discharge were premature release, lack of seamless care and home care insufficiently tailored to the patients' needs. The family physician's role assignment ranged from pivotal to minimal. Patients especially expected their family physician to guarantee continuity of care. Home is considered the preferred place of long-term care, as long as it is perceived a safe environment. A person-centered approach, focusing on the patient's complex needs, is not consistently implemented in palliative care settings. Barriers in inter-professional collaboration need to be tackled to provide high quality care across settings.