Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK
Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK
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DOI：
10.1136/bmj.c4184
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发表时间：
2010-08-18
影响因子：
105.7
通讯作者：
Cooper, Claudia
中科院分区：
文献类型：
--
作者：
Livingston, Gill;Leavey, Gerard;Cooper, Claudia
目的 识别家庭照顾者代表痴呆症患者做出的常见困难决定，以及这些决定的促进者和障碍，以便为家庭照顾者提供克服障碍的信息。设计定性研究，通过焦点小组和个人访谈中决策的复杂性来划定决策范围。设置伦敦的社区环境。参与者焦点小组中的 43 名痴呆症患者家庭照顾者和 46 名已经在个人访谈中做出此类决定的照顾者。结果 家庭护理人员确定了决策的五个核心问题领域： 获得与痴呆症相关的健康和社会服务；护理院；法律财务事宜；非痴呆症相关的医疗保健；如果护理人员病得太重而无法照顾痴呆症患者，则为他们制定计划。他们强调了做出代理决策的困难，特别是面对积极的抵抗，以及他们在仍然是家庭成员的情况下改变了患者管理者的角色。家人制定策略以取得一致意见，以确保痴呆症患者保留尊严。结论 以下策略有助于决策的实施：缓慢引入变革；为护理人员和患者组织法律变更；请专业人员说服患者接受服务；并强调服务的独立性得到优化，而不是受到阻碍。为了获得服务，护理人员为患者进行全科预约，陪同他们去手术室，指出症状，获得接收机密信息的许可，要求转诊至专科服务，并利用专业人士的权威来获得患者的同意。临终决定尤其困难。了解痴呆症患者之前的观点、明确的预后信息和家庭支持对他们有所帮助。已经制定了帮助护理人员克服代理决策障碍的信息表；它们在实践中的影响还有待评估。
Objective To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.Design Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.Setting Community settings in London.Participants 43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.Results Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.Conclusions The following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients' general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals' authority to gain patients' agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia's previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.