A Novel Solution to Find Decision-Makers for Unrepresented Patients: Creating A Volunteer Health Care Agent Matching Program

In a recent study, 40% of individuals who had not formally designated a health care surrogate claimed that they did not have anyone in their life to name for the role. Such “unrepresented individuals” are among the most vulnerable in society. When unrepresented individuals lose medical decision-making capacity, they have nobody to ensure their values, goals, and preferences (“VGP”) are honored by healthcare providers, making them most at risk for truly losing their autonomy. Oftentimes, post-acute facilities (in Massachusetts) refuse to admit such individuals because they do not have a designated surrogate even though they presently have capacity to make their own decisions. The default response is to get a guardian appointed when the individual loses capacity. First, this does not solve the admission barrier. More importantly, a guardian can never know the individual’s VGP while they had capacity and therefore cannot ensure their autonomy is respected. Accordingly, four organizations-- an academic medical center, an integrated health plan and provider system, an insurance company, and a state-based coalition to improve serious illness care-– established the Health Care Agent Matching Program (the “Program”). The Program recruits volunteers willing to serve as another person’s surrogate, or “health care agent” (“HCA”), and matches them to unrepresented patients interested in voluntarily naming a HCA. During the session, the panelists (representing law, medicine, nursing and public health) will discuss why and how they created the Program; describe how it operates; and, share success stories and valuable lessons learned during the Program’s operation to date.