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帕金森病的姑息治疗和临终规划。

Palliative care and end-of-life planning in Parkinson's disease.

机构信息

Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH, UK.

出版信息

J Neural Transm (Vienna). 2013 Apr;120(4):635-8. doi: 10.1007/s00702-013-0967-3. Epub 2013 Jan 18.

Abstract

In Parkinson's disease (PD) typical "palliative care" type symptoms, such as pain, nausea, weight loss and breathlessness can occur throughout the condition, but become more prevalent in later disease stages. Pain may be specifically related to PD, e.g. dystonic pain with wearing off, but is more commonly due to other conditions. The cause can usually be elicited by a careful history and examination, and this guides intervention, both non-pharmaceutical, and pharmaceutical. For example, dystonic pain will respond best to appropriate changes to dopaminergic medication. In later disease stages people have increasing problems with swallowing, and also cognitive impairment. Impaired swallowing may lead to aspiration pneumonia, which is a common cause of hospital admission, and also death. Decisions about interventions towards the end of life, such as insertion of percutaneous endoscopic gastrostomy (PEG) tube for nutrition, can be very challenging, particularly if, as in most cases, the person with PD has not previously expressed their views upon this while they still maintained capacity to make decisions. Advance care planning (ACP) in PD should be encouraged in relation to interventions such as PEG tubes. It may also cover issues such as preferred place of death. Over recent years lower proportions of people have been dying at home, and this is especially true for PD, but home may well be where they would have preferred to die. However, there is little evidence to guide health professionals about how, when, and by whom, ACP should be approached.

摘要

在帕金森病(PD)中,会出现典型的“姑息治疗”类型的症状,如疼痛、恶心、体重减轻和呼吸困难,这些症状可能在整个疾病过程中都会出现,但在疾病后期更为常见。疼痛可能与 PD 特定相关,例如药物作用消失时的肌张力障碍性疼痛,但更常见于其他疾病。通过仔细的病史和检查通常可以确定病因,这有助于指导非药物和药物干预。例如,肌张力障碍性疼痛会对适当改变多巴胺能药物反应最好。在疾病后期,人们吞咽问题越来越严重,认知障碍也越来越严重。吞咽困难可能导致吸入性肺炎,这是住院的常见原因,也是死亡的常见原因。在生命末期做出干预决定,例如插入经皮内镜胃造口术(PEG)管进行营养支持,可能非常具有挑战性,特别是在大多数情况下,PD 患者在仍然有能力做出决策时,并没有事先表达过他们对这些问题的看法。应鼓励 PD 患者进行预立医疗照护计划(ACP),以涉及 PEG 管等干预措施。它也可能涵盖首选死亡地点等问题。近年来,在家中死亡的人数比例有所下降,这在 PD 中尤其如此,但他们可能更愿意在家中去世。然而,几乎没有证据可以指导卫生专业人员了解如何、何时以及由谁来进行 ACP。

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