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Commentary on "Advance care planning and proxy decision making for patients with advanced Parkinson disease".

Proxy or surrogate decision making is an issue that arises regularly in hospitals and other healthcare facilities as patients age, become ill, and lose their capacity to make their wishes and choices known. End-of-life (EOL) decision making is stressful for families, who often fill the role of proxy decision makers, particularly if they do not know or do not have documentation of the patient’s wishes. The burden of trying to understand the patient’s condition, diagnosis, and prognosis, the medical jargon, and the treatment options is emotionally and psychologically weighty. Proxies may not have had conversations with the patient about his or her EOL wishes and, therefore, may be left to base choices on their sense of what the patient would have wanted or the proxy’s own values. What seems increasingly common is that physicians are trained to avoid being paternalistic at all costs; instead, they are encouraged to provide a menu of medical options from which the proxy is supposed to choose. In the worst-case scenario, this approach leaves the proxy having to wade through the choices without much guidance and with varying degrees of understanding and a feeling of being overwhelmed. The potential and actual guilt of choosing the ‘‘wrong’’ option is real and evident when dealing with these situations. In the best-case scenario, the physician, healthcare team, and proxy make the decision together in accordance with the patient’s values and known wishes. Too often in modern health care, however, it seems that this is not the case. In this issue of the Southern Medical Journal, Kwak and colleagues contribute to our limited knowledge of proxy decision making in the specific population of patients with advanced Parkinson disease (PD). Thirty-one percent of this patient population also had dementia. It is a group of people who is likely to be dependent on others to care for them and who may have difficulty expressing their wishes as the disease progresses. The authors focus on proxy decision makers, with the aim of examining what proxies choose and how closely those choices correlate to patients’ wishes. Although we know there is often a gap, little is known about this group of patients and their proxies. This study sample contained a high percentage of patients who had completed a living will (95%) and shared it with their proxy (91%); however, only 38% had shared it with their physician. Interestingly, in this sample, proxy EOL care choices were not generally consistent with the patient’s life-support choices. Proxies more often chose pain and symptom control only. One reason may have been that some patients wanted cardiopulmonary resuscitation (CPR) but not ventilator support, and these may not be easily predictable preferences consistent with their other EOL choices (eg, no ventilator, no feeding tubes). The authors speculate as to why patients indicate they want CPR and note that a higher proportion of patients who shared their advanced directive with a physician chose hospice and declined CPR or a feeding tube. This notable finding highlights the importance of EOL discussions involving the physician or a healthcare professional, who may have given the patient key information about outcomes that affected his or her choices. The study raises key questions about how to move forward in facilitating EOL decision making, particularly in a population affected by PD, which may be applicable to other patient groups as well. Further work on how to increase the correlation between patient and proxy choices needs to be done. In some ways, perhaps this gap is inevitable because patients do not always know what they would choose until they reach the point of needing to make a decision. Some patients who are against Invited Commentary