Understanding Patients’ Experiences of Dying at Home

One in three UK deaths now happens at home, yet dying patients are rarely asked what that experience is actually like for them. Family members often report that their loved ones suffered distressing symptoms in their final days, but the patients’ own voices are missing from the evidence. This project will systematically review UK studies published over the past 20 years to piece together what patients themselves say about their last four months of life at home. The gap is straightforward: care is planned around what families and clinicians assume patients need, not what patients report. If this synthesis succeeds, it will give healthcare providers and policymakers a clearer, patient-grounded picture of where home dying falls short of the ideal. That could reshape how community palliative care is delivered—for example, by targeting symptom management, emotional support, or practical help in the weeks before death. The research does not test a new intervention or device; it fills a foundational gap in knowledge. Without that foundation, efforts to improve end-of-life care risk missing what matters most to the person at the centre of it.