Hall Kirk, Sumrall Malenna, Thelen Gil, Kluger Benzi M
Parkinson's Disease Patient and Advocate, Highlands Ranch, CO USA.
Carepartner for Parkinson's Disease Patient and Advocate, Castle Rock, CO USA.
NPJ Parkinsons Dis. 2017 May 22;3:16. doi: 10.1038/s41531-017-0016-2. eCollection 2017.
In 2015, the Parkinson's Disease Foundation sponsored the first international meeting on Palliative Care and Parkinson's disease and the Patient Centered Outcomes Research Institute funded the first comparative effectiveness trial of palliative care for Parkinson's disease. A council of Parkinson's disease patients and carepartners was engaged to assist with both projects. This council wrote the following manuscript as an opinion piece addressed to the clinical and research community on how palliative care could be applied to people living with Parkinson's disease and their families. The council endorses palliative care as an approach to the care of Parkinson's disease patients and their families that seeks to reduce suffering through spiritual, psychosocial, and medical support. This approach should start at the time of diagnosis, as this is a very challenging time for patients and carepartners; includes better emotional support, educational resources, and closer follow-up than is currently standard; and continue through end-of-life care and bereavement.
2015年，帕金森病基金会主办了首届帕金森病姑息治疗国际会议，患者为中心的结果研究协会资助了首个帕金森病姑息治疗比较有效性试验。一个由帕金森病患者和护理伙伴组成的委员会参与协助这两个项目。该委员会撰写了以下文稿，作为一篇观点文章，面向临床和研究界，阐述如何将姑息治疗应用于帕金森病患者及其家人。该委员会认可姑息治疗是一种照顾帕金森病患者及其家人的方法，旨在通过精神、心理社会和医疗支持来减轻痛苦。这种方法应在诊断时就开始，因为这对患者和护理伙伴来说是极具挑战性的时期；包括比目前标准更好的情感支持、教育资源和更密切的随访；并贯穿临终关怀和哀伤期。
