Burlá Claudia, Rego Guilhermina, Nunes Rui
Palliative Care of the Federal Council of Medicine, Brasília, Brazil.
Med Health Care Philos. 2014 Aug;17(3):389-95. doi: 10.1007/s11019-014-9559-8.
The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, even though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician-patient-family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached.
在二十世纪，全球人口显著老龄化，导致患渐进性、使人丧失能力且无法治愈的慢性退行性疾病的人数增加。医学上延长寿命的进展促使人们建立了确保患者自我决定权的手段，即生前预嘱，它允许有行为能力的人根据自己的价值观拒绝某种被认为不可接受的治疗。根据对阿尔茨海默病进展情况的了解，即便尚无可用的治疗方法，也能够规划医疗护理。不可逆转的认知能力丧失突显了痴呆患者自主性的持续丧失。这种丧失需要提供特定的长期护理。即便痴呆尚处于早期阶段，医患家庭关系中也存在重大伦理问题。作者建议，为了对阿尔茨海默病进行充分的医疗护理规划，生前预嘱可在老年护理初期，一旦完成临床、代谢甚至基因诊断，就向患者出示。他们还建议，应在患者认知能力尚健全时指定医疗代理人，并且应在疾病早期就向任何患者传达预先指示的存在及范围。因此，应该存在伦理准则，以便神经科医生以及其他诊治这些患者的医生在确诊后尽快讨论这些问题。
