Finding representation for the unrepresented patient: Creating a volunteer health care agent matching program in Massachusetts

Abstract

A foundational principle of health care is patient autonomy – respecting an individual's right to control what happens to their body, including what care they do and do not receive. That right is not lost when an individual loses the ability to speak for themselves or make reasoned decisions. One way to ensure health care decision-making aligns with a patient's wishes is for an individual to appoint a health care agent (HCA) to make decisions on their behalf if they are unable to. However, some people are ‘unrepresented’, meaning they do not have anyone to appoint. Lack of an HCA can result in delays in care, care that does not reflect a patient's wishes, and avoidable costs to the health care system. Strategies to address this have largely focused on courts appointing a guardian after an individual has lost decision-making capacity-a lengthy process that often exacerbates delays and, most importantly, does not result in a decision-maker who knows the individual's priorities and preferences. To address this challenge, four Massachusetts organizations developed a volunteer HCA program matching employees of each organization as HCAs for ‘unrepresented’ individuals receiving care at the other organizations. This model shows promise as an approach to ensure individuals can choose their HCA and personally communicate their priorities and preferences to them. Additionally, training volunteers as HCAs for strangers and learning from their experiences may offer insights into how everyone can be better at these conversations and representing the choices of others - especially with people close to them.