Background: The care of patients with complex chronic conditions requires an integrated care approach from all sources of care, not just from statutory services. Integration of care improves the patient’s experience and helps to minimise duplication. Informal carers provide day-to-day care but little is known about the extent of their contribution to the integration of care. To support person-centred integrated palliative and end of life care, providers need to understand the experience and contribution of family carers in order to support them and the patient as best as possible.
Aim: To understand the relative contributions made by family carers, health and social care services and the Third Sector towards integrated care from a person-centred perspective.
Methods: The carer of a patient with progressive supranuclear palsy was approached 6 months after death for an interview. Using personal diaries, we extracted data on face-to-face contacts with the Isle of Man’s Department of Health and Social Care (DHSC), Third Sector and private care providers during the last 18 months of life. The date, type of professional and agency were recorded. A variable was created to indicate whether the encounter provided medical care, respite for the carer, end of life care or another type of care. The number of contacts was plotted by month, sector and type of care. The package STATA was used for descriptive statistics. A timeline from pre-diagnosis to after death was created using details provided by the carer and verified by correspondence generated at the time of care. To understand how the carer contributed to care from the perspective of statutory services, the long-term conditions coordinator involved in the case was interviewed one year after the patient’s death.
Results: In the last 18 months of life, the patient received care from 25 DHSC providers, 4 charities, 6 private providers, family and friends. During this period, the patient had 438 contacts, an average of 24 ± 8 encounters per month, not including family and friends. DHSC and Hospice Isle of Man had the greatest number of contacts (42% and 29% respectively). Monthly activity by sector varied from month to month. In the last 2 months of life the voluntary and private sector provided 80-100% of care. Overall, the majority of care was for respite (60%), followed by medical care (21%). The Third Sector provided 61% of respite care, followed by DHSC (31%) and private providers (8%). The carer had developed a system for organising documentation, appointments, medications and outside services but reported that the long-term conditions coordinator was invaluable for coordinating DHSC care. However, he remained the overall coordinator of non-statutory care.
Conclusions: Medical care from statutory services is only a small component of care at the end of life. The Third Sector is a critical partner in supporting carers. Services and voluntary organisations need to support the family carer as the primary coordinator of care. Using diary sources supplemented with correspondence with family and interviews can give a patient-centred perspective of the need for and success of integration.