Speaking for older patients who lack a voice

When patients are unable to speak for themselves and don’t have a friend or family member to do so, a court-appointed stranger can take up the task. These so-called professional guardians or conservators are often allowed to make a broad range of decisions involving not only medical treatment, but also property, marriage, and where a person resides. Forbes has called the mechanism “among the harshest remedies in the American legal system,” but Andrew B. Cohen, MD, DPhil, HS ’13, has found that very little is known about it. He called the complex ethical and logistical interplay among guardians, patients, and clinicians a “black box.”

Typically, Cohen said, a guardian is appointed for a patient with diminished capacity who is expected to last for weeks or years, as is the case with Alzheimer’s disease. Patients who don’t have an appropriate family member or friend to make decisions can languish in hospitals longer than is medically necessary until the court can appoint a professional guardian as a long-term decision maker.

In Connecticut at least, most professional guardians are lawyers or social workers, said Cohen, an assistant professor of internal medicine (geriatrics). The guardians typically don’t receive credentialing, and he has found that they receive little guidance from state laws about some of the most pivotal decisions they have to make—including decisions about treatment at the end of life.

Guardians find themselves “in this unique and quite difficult position of making decisions for a person they didn’t meet before,” Cohen said. They may fail to provide clinicians with clear direction. “When confronted with particularly difficult decisions—and probably the most difficult of all has to do with offering or continuing life-sustaining treatment—[clinicians have reported that] guardians were not willing to make those decisions in a timely or effective way,” he said. And that’s assuming you can get them on the phone. Many clinicians find that professional guardians can be difficult to reach, which can delay care, Cohen said.

Studying guardianship is difficult. Most states do not maintain databases of people in this situation, so the identities of these patients or their guardians are unclear. One exception: the Veterans Health Administration, from whose data Cohen was able to identify patients with court-appointed guardians. By doing so, Cohen has gained a better understanding of the patients who wind up in this situation.

Most, he found, are not alone in the world. Rather, their families for various reasons are simply not up to the responsibility. About one patient in four even had an advance directive appointing a health care representative, but their chosen appointees were unable to serve.

To his own surprise, Cohen did not find evidence that people under guardianship from a stranger undergo more high-intensity care, such as mechanical ventilation or CPR, than do other people. That finding could mean that strangers and loved ones alike hesitate to choose palliative options, even when doing so may be more in line with what the patient would have wanted. “We don’t really talk to surrogate decision makers about how to be good surrogate decision makers,” Cohen said. “We just kind of assume that people will know how to do that.”

Improving on the current system, he suggested, might mean training community volunteers for the role—an approach currently being piloted in Indiana—or a proposed new profession of certified health fiduciaries.

Meanwhile, for the sake of patients who need court-appointed oversight, Cohen urges physicians “not to shy away from learning about that interface between medicine and the courts.” When making decisions about guardianship, he explained, judges read and weigh physicians’ comments—and guardians seek out clinicians’ advice, too. “It’s good for patients and it’s good for the legal system for [physicians] to be very actively involved in those patients’ care,” he said.