• Jung Kwak, Maggie S Wallendal, Thomas Fritsch, Gary Leo, and Trevor Hyde.
• 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 1;107(3):178-85.

ObjectivesTo examine advance care planning practices and proxy decision making by family healthcare proxies for patients with advanced Parkinson disease (PD).MethodsSixty-four spouses and adult children, self-designated as a/the healthcare proxy for advanced patients with PD, participated in a cross-sectional survey study.ResultsSixty 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.ConclusionsAdvance 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.

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