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BackgroundTreatment decision-making by family members on behalf of patients with major stroke can be challenging because of the shock of the diagnosis and lack of knowledge of the patient's treatment preferences. We aimed to understand how, and why, family members made certain treatment decisions, and explored their information and support needs.MethodSemi-structured interviews with family members (n = 24) of patients with major stroke, within 2 weeks of hospital admission. Data were analysed thematically.ResultsFamilies' approach to treatment decision-making lay on a spectrum according to the patient's state of health pre-stroke (i.e. patient's prior experience of illness and functional status) and any views expressed about treatment preferences in the event of life-threatening illness. Support and information needs varied according to where they were on this spectrum. At one extreme, family members described deciding not to initiate life-extending treatments from the outset because of the patients' deteriorating health and preferences expressed pre-stroke. Information from doctors about poor prognosis was merely used to confirm this decision. In the middle of the spectrum were family members of patients who had been moderately independent pre-stroke. They described the initial shock of the diagnosis and how they had initially wanted all treatments to continue. However, once they overcame their shock, and had gathered relevant information, including information about poor prognosis from doctors, they decided that life-extending treatments were no longer appropriate. Many reported this process to be upsetting and expressed a need for psychological support. At the other end of the spectrum were family members of previously independent patients whose preferences pre-stroke had not been known. Family members described feeling extremely distressed at such an unexpected situation and wanting all treatments to continue. They described needing psychological support and hope that the patient would survive.ConclusionThe knowledge that family members' treatment decision-making approaches lay on a spectrum depending on the patient's state of health and stated preferences pre-stroke may allow doctors to better prepare for discussions regarding the patient's prognosis. This may enable doctors to provide information and support that is tailored towards family members' needs.

Original publication

DOI

10.1186/s12911-020-01137-7

Type

Journal article

Journal

BMC medical informatics and decision making

Publication Date

06/2020

Volume

20

Addresses

Clinical Academic Fellow (Chief Scientist Office), Centre for Clinical Brain Sciences, The University of Edinburgh, 49 Chancellor's Building, Edinburgh, EH16 4SB, UK. avisvana@exseed.ed.ac.uk.

Keywords

Humans, Hospitalization, Terminal Care, Family, Decision Making, Qualitative Research, Adult, Aged, Middle Aged, Female, Male, Stroke