BACKGROUND: Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care. METHODS: From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year. Interviews were transcribed for thematic and narrative analysis. The Palliative Care Outcome Scale, EuroQol-5D-5L and Caregiver Strain Index questionnaires were completed after interviews. We also conducted a data linkage study of all patients with anterior circulation stroke admitted to the 3 services over 6 months, which included case fatality, place of death and readmissions. RESULTS: Data linkage (n = 219) showed that 57% of patients with total anterior circulation stroke died within 6 months. The questionnaires recorded that the patients experienced immediate and persistent emotional distress and poor quality of life. We conducted 99 interviews with 34 patients and their informal and professional careers. We identified several major themes. Patients and caregivers faced death or a life not worth living. Those who survived felt grief for a former life. Professionals focused on physical rehabilitation rather than preparation for death or limited recovery. Future planning was challenging. “Palliative care” had connotations of treatment withdrawal and imminent death. INTERPRETATION: Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal caregivers should be offered, raising the possibility of death or survival with disability. Practising the principles of palliative care is needed, but the term “palliative care” should be avoided or reframed.

Background: Palliative care is an integral aspect of stroke unit care. In 2016, the American Stroke Association published a policy statement on palliative care and stroke. Since then there has been an expansion in the literature on palliative care and stroke. Aim: Our aim was to narratively review research on palliative care and stroke, published since 2015. Results: The literature fell into three broad categories: (a) scope and scale of palliative care needs, (b) organization of palliative care for stroke, and (c) shared decision making. Most literature was observational. There was a lack of evidence about interventions that address specific palliative symptoms or improve shared decision making. Racial disparities exist in access to palliative care after stroke. There was a dearth of literature from low- and middle-income countries. Conclusion: We recommend further research, especially in low- and middle-income countries, including research to explore why racial disparities in access to palliative care exist. Randomized trials are needed to address specific palliative care needs after stroke and to understand how best to facilitate shared decision making.

Aim: To determine the top 10 research priorities specific to stroke nursing.Background: It is important that stroke nurses build their research capability and capacity. This project built on a previous James Lind Alliance prioritization project, which established the shared stroke research priorities of stroke survivors, carers and health professionals.Design: Research priority setting project using James Lind Alliance methods; a survey for interim prioritization and a consensus meeting for final priority setting.Methods: Between September ‐ November 2014, stroke nurses were invited to select their top 10 priorities from a previously established list of 226 unique unanswered questions. These data were used to generate a list of shared research priorities (interim priority setting stage). A purposefully selected group of stroke nurses attended a final consensus meeting (April 2015) to determine the top 10 research priorities.Results: During the interim prioritization stage, 97 stroke nurses identified 28 shared priority treatment uncertainties. At the final consensus meeting, 27 stroke nurses reached agreement on the top 10 stroke nursing research priorities. Five of the top 10 questions relate to stroke‐specific impairments and five relate to rehabilitation and long‐term consequences of stroke.Conclusions: The research agenda for stroke nursing has now been clearly defined, facilitating nurses to undertake research, which is of importance to stroke survivors and carers and central to supporting optimal recovery and quality of life after stroke.

Background: Death after stroke is common, but little is known about end-of-life care processes in acute stroke units. Aim: (1) To identify family and health-care worker perceptions of an end-of-life care pathway for patients who die after acute stroke. (2) To determine whether patients with fatal stroke judged to require an end-of-life care pathway differ from patients with fatal stroke who die without introduction of such a pathway. Design: Mixed methods study integrating qualitative semistructured interviews with quantitative casenote review. Setting/participants: In four Scottish acute stroke units, 17 relatives of deceased stroke patients and 23 health-care professionals were interviewed. Thematic analysis used a modified grounded theory approach. Multivariate analysis was performed on casenote data, identified prospectively from 100 consecutive stroke deaths. Results: Deciding pathway use was a consultative process, occurring within normal working hours. Families were commonly involved and could veto or trigger aspects of end-of-life care. Families sometimes felt responsible for decisions such as pathway use, resuscitation or hydration. Families were often led to expect their relative’s death early in the post-stroke period. Prolonged dying processes, particularly where patients had severe dysphagia, added to distress for families. Preferences for place of care were discussed infrequently. No link was found between demographic or clinical characteristics and care pathway use. Conclusion: Distressing stroke-related clinical problems dominated relatives’ concerns rather than use of the end-of-life care pathway. At times, relatives felt primarily responsible for key aspects of decision-making. Relatives often felt unprepared for a prolonged dying process after stroke, particularly where patients had persistent major swallowing difficulties.

Objective: To determine what influences the decision to insert an indwelling urinary catheter in acute stroke patients. Design: A prospective casenote review and semi-structured interviews were conducted and corporate catheterization policy in the study sites was investigated. Setting: Three teaching hospitals, typical of stroke service provision in most developed countries. Subjects: Casenotes from 70 consecutive acute stroke admissions; 50 doctors, nurses and physiotherapists working in acute stroke units and medical receiving units. Results: Stroke patients were catheterized for output monitoring, relief of urinary retention or, especially for older patients, continence-related issues. Half of all catheterizations occurred in acute stroke units. Continence and catheterization were considered less important than other aspects of acute stroke care. No catheterization policy or standardized continence assessment tool was in use. Documentation was often lacking. Patients and relatives were not fully involved in the decision to catheterize. Continence assessment and catheterization practices varied widely. Complex unwritten rules relating to gender proliferated. Such rules demonstrated heuristic problem-solving could potentially cause conflict. Decisions to catheterize ‘belonged’ to doctors or nurses depending upon clinical indications. Clinical assessment and specialist referrals were often seen as ‘not my job’. Conclusions: Clear corporate policy on catheterization is required to direct practice. Use of standardized continence assessment tools is recommended to set and monitor standards of care. Documentation relating to urinary catheterization needs to improve.