The Capacity of Surrogate Decision-Makers

During my many years in healthcare as a clinician, researcher and hospital ethics consultant, I am dismayed by how little relative attention is given to ensuring that surrogate decision-makers (or “proxies”) have the “capacity” to make sound medical decisions for adult patients without decision-making capacity. Some attention has been given to this in the literature, but not a lot. And, practically, it is routine in most clinical situations to defer to a proxy without much assessment of his/her capabilities.

For example, it has been demonstrated through many empirical studies that family members experience high distress when loved ones are admitted to ICUs, quite understandably — many families experience such high distress that decision-making abilities can be compromised. Others, even if distress is well-managed, are simply not aware of the patients’ previously stated wishes, to enable them to make decisions based upon substituted judgment. And, still others may not know enough of the medical situation to make good decisions based upon the patient’s best interests. Then, sadly, we also have a portion of proxies who may not want to keep the best interests of the patient at heart — in fact, I have done research among people with cancer who are also suffering from domestic violence from their primary caregiver (and presumed proxy). In these situations, the proxy may actually want to cause harm to the patient. Or, another example is when the harm may not be intended, but the proxy makes decisions based upon their own needs. An example is a proxy who chooses to keep a person in a terminal condition on life-support for their own financial gain (for pension checks to keep coming, for example).

We need to pay more attention to the capabilities of health care proxies. For example, in addition to encouraging clinicians to assess patients’ decision-making capabilities, clinicians should also be assessing the proxies’ decision-making abilities – early in the process. However, to my knowledge, there are no clear methods, guidelines, policies or laws “removing” established proxies from their posts as decision-makers (aside from taking the person to court, which is often impractical), when their judgment seems compromised. Clinicians are often left without guidance. Perhaps folks in clinical bioethics can help establish some clear standards for proxy decision-making, which might serve as a guide for clinicians, but also for future policy development. Just some initial thoughts…