Swiss Med Wkly. 2018 Nov 14;148:w14663. doi: 10.4414/smw.2018.14663. eCollection 2018 Nov 5.
The number of people with dementia in Switzerland is currently around 150,000. The prevalence of this condition rises steeply after the age of 65. As a result of demographic changes, the number of people affected in Switzerland is thus expected to increase markedly over the coming decades. The course of dementia – which frequently occurs in combination with chronic somatic and/or mental disorders (multimorbidity) – is often protracted and is difficult to predict. Cognitive impairments mean that self-determination and alleviation of symptoms are more difficult to achieve in everyday practice. People with severe dementia generally lack capacity, and decisions then have to be made by representatives on the basis of the patient’s previously expressed or presumed wishes. The management and care of patients may be complicated by disease-related behavioural disturbances. The public, as well as the individuals affected, are fearful of the loss of independence and possible changes in personality associated with progressive dementia; in addition, people are often afraid of becoming a burden on their relatives or society. Against this background, difficult decisions and significant ethical conflicts are not unusual – all the more so since life with dementia runs counter to guiding values, such as independence, productivity and rationality, which are central to our society. The aim of these guidelines is to offer practical guidance for dealing with ethical conflict situations relating to the care and treatment of people with dementia. Specific issues are addressed which may ultimately arise for all those involved in dementia care, irrespective of the setting (domestic, hospital, residential) and professional group. Which of these ethical issues is the most salient will depend largely on the stage of the condition. Once the condition has been diagnosed, management should be based on the principles that are also applicable, for example, in palliative care: a focus on quality of life, equality of care, interprofessional collaboration and continuity, open and appropriate communication, support for decision-making processes, anticipation, a multidimensional approach, and involvement of those close to the patient. These guidelines were prepared in cooperation with the Swiss Society of Gerontology (SGG SSG) as part of the National Dementia Strategy 2014–2019 (subproject 5.1: “Establishment of ethical guidelines”).
瑞士目前患有痴呆症的人数约为15万。65岁之后，这种疾病的患病率急剧上升。由于人口结构的变化，预计在未来几十年里，瑞士受影响的人数将显著增加。痴呆症的病程往往很长，且难以预测，它经常与慢性躯体和/或精神疾病（共病）同时出现。认知障碍意味着在日常实践中更难实现自主决策和缓解症状。重度痴呆症患者通常缺乏行为能力，此时必须由代表根据患者先前表达的或推测的意愿做出决定。与疾病相关的行为障碍可能会使患者的管理和护理变得复杂。公众以及患者本人都担心与进行性痴呆症相关的独立性丧失和性格可能发生的变化；此外，人们常常害怕成为亲属或社会的负担。在此背景下，艰难的决策和重大的伦理冲突并不罕见——尤其是因为痴呆症患者的生活与我们社会核心的指导价值观，如独立性、生产力和理性背道而驰。这些指南的目的是为处理与痴呆症患者护理和治疗相关的伦理冲突情况提供实用指导。文中讨论了一些具体问题，这些问题最终可能会出现在所有参与痴呆症护理的人员身上，无论其所处环境（家庭、医院、养老院）和专业群体如何。这些伦理问题中哪一个最为突出，在很大程度上取决于疾病的阶段。一旦确诊，管理应基于例如在姑息治疗中也适用的原则：关注生活质量、平等护理、跨专业协作与连续性、开放和恰当的沟通、支持决策过程、预期、多维度方法以及患者亲近之人的参与。这些指南是与瑞士老年医学协会（SGG SSG）合作编写的，是2014 - 2019年国家痴呆症战略（子项目5.1：“制定伦理指南”）的一部分。
