Outcomes, experiences and palliative care in major stroke: a multicentre, mixed-method, longitudinal study

Kendall, M., Cowey, E. , Mead, G., Barber, M., McAlpine, C., Stott, D. J. , Boyd, K. and Murray, S. A. (2018) Outcomes, experiences and palliative care in major stroke: a multicentre, mixed-method, longitudinal study. Canadian Medical Association Journal, 190(9), E238-E246. (doi: 10.1503/cmaj.170604) (PMID:29507155)

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Abstract

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.

Item Type:Articles
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Stott J, Professor David and McAlpine, Dr Christine and Cowey, Dr Eileen
Authors: Kendall, M., Cowey, E., Mead, G., Barber, M., McAlpine, C., Stott, D. J., Boyd, K., and Murray, S. A.
College/School:College of Medical Veterinary and Life Sciences > Institute of Cardiovascular and Medical Sciences
College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing > Nursing and Health Care
Journal Name:Canadian Medical Association Journal
Publisher:Canadian Medical Association
ISSN:0820-3946
ISSN (Online):1488-2329
Published Online:04 March 2018
Copyright Holders:Copyright © 2018 Joule Inc. or its licensors
First Published:First published in Canadian Medical Association Journal 190(9): E238-E246
Publisher Policy:Reproduced in accordance with the publisher copyright policy

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