Impact of a clinical pathway on end-of-life care following stroke: a mixed methods study

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.