Background The term ‘prolonged disorder of consciousness’ (PDOC) describes any disorder of consciousness that has continued for ≥4 weeks following sudden onset brain injury, and includes the subcategories of vegetative state and minimally conscious state (Royal College of Physicians. Prolonged disorders of consciousness following sudden onset brain injury: National clinical guidelines. RCP, 2020). The care of patients dying with PDOC is especially challenging. Alongside the management of complex symptoms, the process of dying can be prolonged and difficult to predict. Family participation in highly emotive ethical decision-making, e.g. withdrawing life-sustaining treatments, often amplifies distress and can further complicate the grieving process. National guidelines recommend close coordination between neuro-disability and palliative care specialists (Royal College of Physicians. Prolonged disorders of consciousness following sudden onset brain injury: National clinical guidelines. RCP, 2020), but there remains a lack of studies exploring hospice care in this patient group.

Aim To understand the role of the hospice in the management of patients with PDOC, and identify key aspects of best practice.

Method A multi-disciplinary hospice working group was established. We conducted a rapid review of the literature and evaluated the clinical records for three patients with PDOC admitted to our hospice for end-of-life care. We held reflective sessions with staff, and conducted qualitative interviews with bereaved family members. Our findings were triangulated and key aspects of high-quality care identified.

Results Of the three patients admitted to the hospice all had a diagnosis of vegetative state, and all were admitted for withdrawal of clinically assisted nutrition and hydration. The average time between brain injury and hospice admission was 271 days; the time between hospice admission and death was 11 days (range 6–17). Themes that emerged from reflective sessions included: (1) a need for support and information about PDOC; (2) witnessing high levels of complex distress from families.

Conclusion Hospices have much to offer patients with PDOC. To provide high-quality care, staff need information and training that includes practical guidance on how to care for and communicate with PDOC patients and their families.