Patients without proxies face hospital overtreatment or care limbo

This story is from The Pulse, a weekly health and science podcast.

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Imagine this scenario. A man, 87, is taken to the emergency room from a nursing home. He has a very serious respiratory infection and dementia. Doctors are trying to decide next steps for this patient and how invasive the treatment should be. Usually, they would call somebody to help guide the process, a family member, or somebody who’s named in a medical directive. 

But this patient doesn’t seem to have anyone the doctors could call. 

Intensive care physician David Oxman has encountered this scenario several times.

“These people don’t have anyone to speak for them when they become incapacitated. And this creates not only big problems for the patient, but also for the hospital,” he said.

Oxman says unrepresented patients are a small, but growing group. Some have outlived their family members, or are estranged from them. Maybe they’ve moved a lot, sometimes substance use or homelessness plays a role. The situation is especially complicated with patients who have dementia, or who can’t communicate their wishes for other reasons.

Oxman, Associate Professor of Medicine, Sidney Kimmel Medical College at Thomas Jefferson University, is also a medical ethicist. He says unrepresented patients are at risk for not getting a treatment they need, because if it’s not an emergency situation, doctors can’t offer treatments they don’t have consent for. But, there is also a big issue with overtreatment, especially with patients at the end of life. 

“There’s no one there to tell doctors not to do something. And for many reasons, because of the system we live in, doctors feel compelled to offer maximal treatment unless someone tells them to stop,” Oxman said.

Most states have provisions where medical guardians and medical decision makers can be appointed by a court, but that takes a long time. In the meantime, a search for relatives begins.

“The hospital spends a lot of time trying to identify somebody,” said Oxman. “Oftentimes, we get police engaged to try to find some long-lost relative. Sometimes we approach friends or people who may not traditionally be looked at to act as a health care agent, but who know the patient in some way, know their values, and may be able to help us make a decision.”

Sometimes, Oxman gets on the phone himself to find family members, even distant ones and if he does, he has to jump right into uncomfortable conversations with them.

“‘Your great uncle is critically ill, but he has advanced cancer. And perhaps advanced dementia,’” he said, giving a hypothetical example. “‘I don’t suspect him to survive this illness. I recommend that we don’t pursue putting him on a ventilator and going through intensive critical care. Do you agree with that? Would you help us make that decision?’” He says it’s another question if that person is really in a good position to make any decisions for the patient, but they’re trying to find somebody who has some standing.