Clinical Academic Fellow (Chief Scientist Office), Centre for Clinical Brain Sciences, The University of Edinburgh, 49 Chancellor's Building, Edinburgh, EH16 4SB, UK.
Usher Institute, The University of Edinburgh, Teviot Place, Edinburgh, EH8 9AG, UK.
BMC Med Inform Decis Mak. 2020 Jun 1;20(1):98. doi: 10.1186/s12911-020-01137-7.
Treatment 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.
Semi-structured interviews with family members (n = 24) of patients with major stroke, within 2 weeks of hospital admission. Data were analysed thematically.
Families' 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.
The 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.
由于对诊断的震惊和缺乏对患者治疗偏好的了解，家庭成员代表患有重大中风的患者做出治疗决策可能具有挑战性。我们旨在了解家庭成员如何做出某些治疗决策，以及探讨他们的信息和支持需求。
对 24 名重大中风患者的家庭成员（患者入院后 2 周内）进行半结构化访谈。数据进行主题分析。
家庭的治疗决策方法取决于患者中风前的健康状况（即患者之前的疾病经历和功能状态），以及在危及生命的疾病情况下对治疗偏好的任何表达。支持和信息需求根据他们在这个频谱上的位置而有所不同。在一个极端，家庭成员描述了由于患者健康状况恶化和中风前表达的偏好，他们从一开始就决定不启动延长生命的治疗。医生关于预后不良的信息只是用来确认这个决定。在频谱的中间是中风前生活较为独立的患者的家庭成员。他们描述了诊断初期的震惊以及他们最初希望继续所有治疗的愿望。然而，一旦他们克服了震惊，并收集了相关信息，包括医生提供的关于预后不良的信息，他们就决定不再进行延长生命的治疗。许多人表示这一过程令人不安，并表示需要心理支持。在频谱的另一个极端是中风前偏好不为人知的独立患者的家庭成员。家庭成员描述了在这种意外情况下感到非常痛苦，并希望继续所有治疗。他们描述了需要心理支持和希望患者能够存活。
了解家庭成员的治疗决策方法取决于患者的健康状况和中风前表达的偏好，这可能使医生能够更好地为讨论患者的预后做准备。这可以使医生提供针对家庭成员需求的信息和支持。
