Burton, Christopher, Payne, Sheila, Turner, Mary, Bucknall, Tracey, Rycroft-Malone, Jo, Tyrrell, Pippa, Horne, Maria, Ntambwe, Lupetu Ives, Tyson, Sarah, Mitchell, Helen, Williams, Sion and Elghenzai, Salah (2014) The study protocol of: 'Initiating end of life care in stroke: Clinical decision-making around prognosis'. BMC Palliative Care, 13 (55). ISSN 1472-684X

Background: The initiation of end of life care in an acute stroke context should be focused on those patients and
families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of
dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of
dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative
interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end
of life care within trajectories typical of the acute stroke population.

Methods/design: This two-phase, mixed methods study comprises investigation of dying trajectories in acute
stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative
care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient
and public involvement is integral to this research, with service users involved at each stage.

Discussion: This study will be the first to examine whether patterns of dying reported in other diagnostic groups
are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will
produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute
stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills
and confidence in this challenging aspect of acute stroke care.

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