Marilyn Kendall1, Eileen Cowey1, Gillian Mead2, Mark Barber1, Christine McAlpine1, David J Stott1, Kirsty Boyd1, Scott A Murray1. 1. Primary Palliative Care Research Group (Kendall, Boyd, Murray), University of Edinburgh, Usher Institute of Population Health Sciences & Informatics, Medical School, Edinburgh, Scotland; School of Medicine, Dentistry & Nursing (Nursing & Health Care) (Cowey), University of Glasgow, Glasgow, Scotland; Royal Infirmary of Edinburgh (Mead), Edinburgh, Scotland; Department of Medicine for the Elderly (Barber), Monklands Hospital, Airdrie, UK; Glasgow Royal Infirmary (McAlpine), Glasgow, Scotland; Institute of Cardiovascular and Medical Sciences (Stott), University of Glasgow, Glasgow Royal Infirmary, Glasgow, Scotland. 2. Primary Palliative Care Research Group (Kendall, Boyd, Murray), University of Edinburgh, Usher Institute of Population Health Sciences & Informatics, Medical School, Edinburgh, Scotland; School of Medicine, Dentistry & Nursing (Nursing & Health Care) (Cowey), University of Glasgow, Glasgow, Scotland; Royal Infirmary of Edinburgh (Mead), Edinburgh, Scotland; Department of Medicine for the Elderly (Barber), Monklands Hospital, Airdrie, UK; Glasgow Royal Infirmary (McAlpine), Glasgow, Scotland; Institute of Cardiovascular and Medical Sciences (Stott), University of Glasgow, Glasgow Royal Infirmary, Glasgow, Scotland gillian.mead@ed.ac.uk.
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.
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.
Authors: Scott A Murray; Marilyn Kendall; Emma Carduff; Allison Worth; Fiona M Harris; Anna Lloyd; Debbie Cavers; Liz Grant; Aziz Sheikh Journal: BMJ Date: 2009-09-28