Kwak Jung, Wallendal Maggie S, Fritsch Thomas, Leo Gary, Hyde Trevor
From the Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee, the Parkinson Research Institute of the Wisconsin Parkinson Association, and the Department of Neurology, Columbia St Mary's Hospital, Milwaukee, Wisconsin.
South Med J. 2014 Mar;107(3):178-85. doi: 10.1097/SMJ.0000000000000075.
To examine advance care planning practices and proxy decision making by family healthcare proxies for patients with advanced Parkinson disease (PD).
Sixty-four spouses and adult children, self-designated as a/the healthcare proxy for advanced patients with PD, participated in a cross-sectional survey study.
Sixty patients with PD (95%) had completed a living will, but only 38% had shared the document with a physician. Among three life-support treatments--cardiopulmonary resuscitation (CPR), ventilator, and feeding tube--47% of patients opted for CPR, 16% for ventilator, and 20% for feeding tube. Forty-two percent of proxies did not know patients' preferences for one or more of the three life-support treatments. Only 28% of proxies reported that patients wanted hospice. Patients who shared advance directives with a physician were significantly less likely to choose CPR and a feeding tube and they were more likely to choose hospice. In a hypothetical end-of-life (EOL) scenario, the majority of proxies chose comfort care as the EOL goal of care (53%) and pain and symptom management only as the course of treatment option (72%); these proxy choices for patients, however, were not associated with patients' preferences for life support. Patients' proxies preferred a form of shared decision making with other family members and physicians.
Advance care planning is effective when patients, families, and healthcare professionals together consider future needs for EOL care decisions. Further efforts are needed by healthcare professionals to provide evidence-based education about care options and facilitate advanced discussion and shared decision making by the patient and families.
研究晚期帕金森病（PD）患者的预先护理计划实践以及家庭医疗代理人的代理决策情况。
64名配偶和成年子女，他们自称为晚期PD患者的医疗代理人，参与了一项横断面调查研究。
60名PD患者（95%）已完成生前预嘱，但只有38%与医生分享了该文件。在三种生命支持治疗——心肺复苏（CPR）、呼吸机和喂食管——中，47%的患者选择了CPR，16%选择了呼吸机，20%选择了喂食管。42%的代理人不知道患者对三种生命支持治疗中一种或多种的偏好。只有28%的代理人报告患者希望接受临终关怀。与医生分享预先指令的患者选择CPR和喂食管的可能性显著降低，且更有可能选择临终关怀。在一个假设的临终（EOL）场景中，大多数代理人选择舒适护理作为EOL护理目标（53%），并仅选择疼痛和症状管理作为治疗方案（72%）；然而，代理人对患者的这些选择与患者对生命支持的偏好无关。患者的代理人更喜欢与其他家庭成员和医生共同决策的形式。
当患者、家庭和医疗专业人员共同考虑EOL护理决策的未来需求时，预先护理计划是有效的。医疗专业人员需要进一步努力，提供关于护理选择的循证教育，并促进患者和家庭进行深入讨论和共同决策。
