Prepare: improving end-of-life care practice in stroke care: insights from a national survey and semi-structured interviews

Background: Stroke has high mortality. Challenges in providing end-of-life care include uncertainty among healthcare professionals about when to start care. While generic tools and guidelines exist, which outline components of quality end-of life care, they may not fully address stroke’s unpredictable trajectories, complicating care planning. Objective: To enhance understanding of end-of-life care post-stroke. Methods: We undertook an explanatory sequential mixed methods approach, including a cross-sectional survey and semi-structured interviews. All 286 United Kingdom (UK) National Health Service (NHS) hospitals providing inpatient stroke care were approached for participation in an on-line cross-sectional survey. The survey of healthcare professionals from UK stroke units was used to map current stroke end-of-life care and models of care. Fourteen staff who completed the survey and agreed to a future interview were purposively selected. The semi-structured interviews with healthcare professionals involved in delivering end-of-life care post-stroke were conducted and interpreted using the Theoretical Domains Framework. We aimed to enhance our understanding of the experiences, expectations, challenges and barriers in providing end-of-life care post-stroke, including effective clinical decision-making. Results: Across 108 responding survey sites, 317 responses were received. Results showed a lack of structured tools and approaches, an absence of stroke-specific guidance and variable delivery of end-of-life care post-stroke. Thirteen staff (nurses, occupational therapists, medical stroke consultants, and a speech and language therapist) agreed to be interviewed. The data provided a fuller understanding of the context within which end-of-life care post-stroke is delivered. The varied challenges faced include: uncertain prognosis, complex decision-making process, varying skill levels, staffing levels, the hospital environment, emotional strain on both families and staff, inequitable access to specialist palliative care, and difficulties associated with different models of care (stroke service structures and cultural context). Conclusions: Provision of end-of-life care post-stroke is complex, challenging, uncertain, and inconsistent. There is limited evidence or guidance to support healthcare professionals. There is a need for implementation support, which includes education, to better enable quality and more consistent end-of-life care post-stroke. Further research is required to assess interventions that can support end-of-life care post-stroke to aid clinicians in providing quality palliative care for stroke patients.