The Experiences of Patients with Palliative Care needs and their Carers who have accessed Out-of-Hours Care in the Community: A Systematic Review.

Problem

Patients in the community with palliative care needs can struggle to access adequate care during the evenings, nights and weekends. The provision of high quality palliative care in the out of hours community setting is an enduring concern for policy makers and is a top priority for future research as identified by the James Lind Alliance.

Approach

To understand the experiences of patients with palliative care needs, and their carers, who have received care from community out-of-hours services. This will identify areas of good practice as well as providing information to improve out-of-hours services.

This systematic review studies the experiences of patients in the community with palliative care needs when accessing unscheduled care. Keyword searches were carried out in medical databases (Web of Science, Medline via OVID, SCOPUS and Embase via Ovid) to identify studies published in English between 1980 and 2021. Systematic narrative synthesis was undertaken, identifying cross-cutting themes from each study.

Findings

Nine studies were included. Unscheduled community care services accessed by patients with palliative care needs and their carers include out of hours General Practice and hospice at home services. Three themes have been identified: (1) there are multiple factors that influence the decision of a patient and carer decisions to access out-of-hours care, (2) the care received is highly variable, and (3) patients and carers value continuity of care.

The design of the out-of-hours service can be off putting when patients and carers are considering accessing care as they are required to repeat their story multiple times. They are more likely to contact out of hours services if they are encouraged to do so and if they are contacting a familiar service where they have previously had a positive experience.

Hospice at home services are described in a positive manner. They have the potential provide continuity of care throughout the out-of-hours setting. They can help carers with the decision making process and facilitate the navigation of the out-of-hours services.

Consequences

Patients and carers have difficulties in deciding when to access help and where to seek help during the out-of-hours period. Hospice at home services may have the potential to provide the continuity of care during the out-of-hours setting that patient’s desire. Patients and carers have positive experiences if they receive care from well informed health care professionals in a timely manner and negative experiences if these are not maintained.

Future research is needed to understand the experiences of patients from more diverse ethnic backgrounds, those without a diagnosis of cancer, those who reside in care homes, and how hospice at home services can bridge a gap between in hours and out-of-hours care.