How family caregivers help older relatives navigate statutory services at the end of life: A descriptive qualitative study

Background: A key challenge in meeting the palliative care needs of people in advanced age is the multiple healthcare and social service agencies typically involved in their care. The 'patient navigator' model, originally developed in cancer care, is the professional solution most often recommended to address this challenge. However, little attention has been paid, or is known, about the role that family carers play in enabling their dying relatives to negotiate service gaps. Aim: To explore the role family caregivers play in helping people dying in advanced old age navigate health services at the end of life. Design: Qualitative study using semi-structured interviews and analysed via thematic analysis. Setting/participants: A total of 58 interviews were conducted in New Zealand with the family caregivers of 52 deceased older relatives who had been participants in Life and Living in Advanced Age: a Cohort Study in New Zealand. Results: Fragmentation of services was the key concern, causing distress both for the older person and their family caregivers. Carers identified and engaged with appropriate services in order to facilitate care and treatment. Their involvement was not always met by healthcare professionals with respect or regard to their knowledge of the older person's needs. Conclusion: Family caregivers are trying to help their older relatives overcome the limitations of fragmented health systems at the end of life. They are doing so at times by stepping in to perform patient navigator tasks usually conceptualised as a role for statutory services to carry out. Programmes and services need to be implemented that will better support family carers who are acting as care navigators.