Original Article

Advance Care Planning and Proxy Decision Making for Patients with Advanced Parkinson Disease

Authors: Jung Kwak, PhD, Maggie S. Wallendal, MSW, Thomas Fritsch, PhD, Gary Leo, DO, Trevor Hyde, PhD

Abstract

Objectives: To examine advance care planning practices and proxy decision making by family healthcare proxies for patients with advanced Parkinson disease (PD).

Methods: 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.

Results: 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.

Conclusions:
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.

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