title: End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families.
abstract: The aims of this qualitative study were to identify patients' and family members' experiences of acute stroke and their preferences for end-of-life care. Twenty-eight purposely sampled patients with an acute stroke who had high (n = 13) and low (n = 15) disability were selected from 191 sequential cases admitted to two general hospitals in north-east England. In addition, 25 family members of other stroke patients were recruited. Views about current stroke services and preferences for end-of-life care were elicited in semi-structured interviews. Communication between patients and family members and healthcare professionals was consistently highlighted as central to a positive experience of stroke care. Honesty and clarity of information was required, even where prognoses were bleak or uncertain. Patients and family members appeared to attach as much importance to the style of communication as to the substance of the transfer of information. Where decisions had been made to shift the focus of care from active to more passive support, families, and where possible patients, still wished to be included in ongoing dialogue with professionals. Where patients were thought to be dying, family members were keen to ensure that the death was peaceful and dignified. Families reported few opportunities for engagement in any form of choice over place or style of end-of-life care. No family member reported being offered the possibility of the patient dying at home. Uncertainty about prognosis is inevitable in clinical practice, and this can be difficult for patients and families. Our findings demonstrate the importance of improving communication between patient, family and health professionals for seriously ill patients with stroke in UK hospitals.
authors.affiliation: International Observatory on End of Life Care, Institute for Health Research, Lancaster University, Lancaster, UK. s.a.payne@lancaster.ac.uk
authors.forename: Sheila
authors.initials: S
authors.lastname: Payne
authors.forename: Christopher
authors.initials: C
authors.lastname: Burton
authors.forename: Julia
authors.initials: J
authors.lastname: Addington-Hall
authors.forename: Amanda
authors.initials: A
authors.lastname: Jones
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D003142:Communication; D003430:Cross-Sectional Studies; D004739:England; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology / Q000592:standards*; D011368:Professional-Family Relations; D036301:Qualitative Research; D011787:Quality of Health Care / Q000592:standards; D012111:Residence Characteristics; D020521:Stroke / Q000523:psychology* / Q000628:therapy; D013727:Terminal Care