title: Advance care planning and proxy decision making for patients with advanced Parkinson disease.
abstract: OBJECTIVE
  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.
authors.affiliation: 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.
authors.forename: Jung
authors.initials: J
authors.lastname: Kwak
authors.affiliation: 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.
authors.forename: Maggie S
authors.initials: MS
authors.lastname: Wallendal
authors.affiliation: 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.
authors.forename: Thomas
authors.initials: T
authors.lastname: Fritsch
authors.affiliation: 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.
authors.forename: Gary
authors.initials: G
authors.lastname: Leo
authors.affiliation: 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.
authors.forename: Trevor
authors.initials: T
authors.lastname: Hyde
mesh_terms: D032722:Advance Care Planning / Q000706:statistics & numerical data*; D000368:Aged; D003430:Cross-Sectional Studies; D005190:Family; D005260:Female; D006801:Humans; D016224:Living Wills / Q000706:statistics & numerical data; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000628:therapy*; D019727:Proxy / Q000706:statistics & numerical data*; D018454:Spouses; D013727:Terminal Care / Q000706:statistics & numerical data; D014481:United States / Q000453:epidemiology