1. Advance care planning and proxy decision making for patients with advanced Parkinson disease.
- Author
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Kwak J, Wallendal MS, Fritsch T, Leo G, and Hyde T
- Subjects
- Aged, Cross-Sectional Studies, Family, Female, Humans, Living Wills statistics & numerical data, Male, Middle Aged, Spouses, Terminal Care statistics & numerical data, United States epidemiology, Advance Care Planning statistics & numerical data, Parkinson Disease therapy, Proxy statistics & numerical data
- 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.
- Published
- 2014
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