Patients’ Experiences of Dying at Home: Systematic Review and Interpretive Meta-synthesis

Background Home is internationally recognised as the preferred environment for end-of-life care and death in many countries and idealised in policy and clinical discourses as a critical component of experiencing a ‘good death’. However, these assumptions overlook the complex realities of dying at home. Lived experiences of patients in their last months of life can be starkly different to the idealised rhetoric of dying peacefully in a safe and comforting environment. Aim To systematically review and synthesise the published evidence on patients’ experiences of dying at home in the United Kingdom to inform the development of patient-centred community end-of-life care services. Design Systematic review and interpretive meta-synthesis. Methods Seven literature databases were searched from January 2004 and December 2024, alongside reference and journal hand-searches. Included papers presented primary research on first-hand adult patients’ experiences of dying at home in the United Kingdom. These were appraised using Gough’s Weight of Evidence framework. The interpretive meta-synthesis was guided by Noblit and Hare’s meta-ethnographic approach. Results Fourteen papers were included in the synthesis. Patients and their families assumed multifaceted roles, bearing the brunt of the work of care, navigating interactions with multiple care providers and trying to join up fragmented care. Patients living alone described feeling at a disadvantage, the presence or absence of their support networks shaping their capacity to manage care. Dying at home came with considerable financial costs, including expensive electricity bills for running essential equipment and staying warm. Conclusions Fragmented and poorly integrated services undermine the quality of home-based end-of-life care. Practice recommendations include putting in place integrated single point of contact for community services and shared electronic records. Targeted support is also vital for patients living alone or in poverty. Research must prioritise first-hand patient accounts in the final weeks of life, especially from under-represented groups.