Background: There are 32,000 stroke related deaths in England annually and 21% of patients die within 30 days of hospital admission. There is uncertainty around what effective end-of-life-care (EoLC) stroke patients and their families receive. Our audit of EoLC after stroke identified limited access to specialist palliative care services; conversations around dying were held mostly with families rather than patients, and only two-thirds had an individualised care-plan. This is the first part of a planned wider programme of research to develop ‘PREPARE’ (ImPRoving End of life care Practice in stroke cARE): a package of education and clinical practice development around the specific EoLC needs of patients with stroke and their families
Aims: To refine our understanding of patients’ and families’ EoL needs, within the first 30 days after stroke. Identify barriers and challenges to the delivery of EoLC in acute stroke units. Explore how to assess the needs of patients and families and provide them with appropriate support, and how to improve prognostic and EoL communication by healthcare professionals.
Method: Databases searched included Medline, CINAHL, PsycINFO, Cochrane and EMBASE. Records identified: 20234, Screened: 14663, Retrieved: 57, Included: 20. Inclusion: English language, published after 2007, patients aged 18+ who died in hospital from a stroke, their relatives and staff who deliver hospital based EoLC to patients’ post-stroke. Quality was assessed using the Mixed Methods Appraisal Tool (MMAT). Synthesis was achieved using a Meta-ethnographic approach.
Findings: Experiences of Staff, Patients, and their Relatives of Hospital Based Post-Stroke EoLC indicated that they recognised dying in the context of uncertainty, Navigating the relationship between staff and next of kin, Meaningful lived space of the stroke unit. Barriers and Enablers to the Delivery of Quality EoLC were identified. Barriers included: Understanding the role of palliative care within the context of stroke unit care, Uncertainty of stroke prognosis, Clinical realities impacting care, The role of physicians in care decisions, Staff readiness to engage, and Dissonance around care. Enablers included: Responsiveness and reassurance in stroke specialist palliative care, Hospital based provision, structure, and practice, Personalising the patient through information from next of kin, Collaborative decision making, and Integrity in communication with next of kin.
Implications: Support staff development, increase confidence in the delivery of EoLC, greater staff satisfaction & help with recruitment & retention. Improve access to, and reduction in, variability of EoLC provision after stroke. Current focus on care in stroke units in acute settings; future hopes to explore the transferability of the EoLC package into other settings.
For more information, please contact Dr Clare Thetford cthetford@uclan.ac.uk