TY - JOUR

T1 - End-of-life issues in acute stroke care : a qualitative study of the experiences and preferences of patients and families.

AU - Payne, Sheila

AU - Burton, Christopher

AU - Addington-Hall, Julia

AU - Jones, Amanda

PY - 2010/3

Y1 - 2010/3

N2 - 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.

AB - 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.

KW - communication • end-of-life care • family support • palliative care • stroke

U2 - 10.1177/0269216309350252

DO - 10.1177/0269216309350252

M3 - Journal article

VL - 24

SP - 146

EP - 153

JO - Palliative Medicine

JF - Palliative Medicine

SN - 1477-030X

IS - 2

ER -