“It’s my religion, my decision!” they yelled as the elevator doors closed, the climax of their escape (though no one was stopping them) from the hospital. They often spoke in rhymes. Where they would go and what condition they’d be in when they got there were mysteries. They’d been in the hospital for almost 2 weeks as we tried to find a safe place for them to discharge to. Their house was in such disrepair that their electricity had been turned off because leaving it on was a fire hazard. They’d had frostbite before, and winter was near. Their mental state was such that we did not believe they could make safe decisions for themselves. They had no way of getting home without our help. Despite all these features they were not in immediate danger of harm and so we had no legal grounds to keep them when they decided they were ready to leave the hospital. We tried to convince them to stay, but they would not listen. They were ready to leave; they wouldn’t wait for us any longer, not even to arrange a ride home. We were worried that they were leaving without a safe plan, but the US medical system is not a jail system. Except for several clear situations, our patients are free to leave the hospital whenever they please even if their doctors think it’s a bad idea.  

Capacity, a patient’s ability to make informed decisions about their healthcare, is more complex than one might think. It’s grounded in the ethical principle of autonomy, which means that patients have the right to decide what happens to their bodies. To understand the complexity of capacity requires at least some understanding of the history of medicine and how we conduct medicine today.

Medicine was paternalistic historically (and in some places it still is). It also wasn’t, seemly, originally centered on doing what was best for patients. There are classic examples of medicine’s unpleasant history, among them: the Tuskegee Syphilis Study, Henrietta Lacks’ stolen cells, stealing corpses to supply cadavers for anatomy labs, and the history of insane asylums. Given its concerning past, there are strict laws outlining which patients can be kept in the hospital against their will and for how long. There are also laws ensuring patients are informed about the risks and benefits of their healthcare and allowed to decide if they would like to pursue or decline tests and treatments their doctors recommend.

When a patient doesn’t have the ability to make their own decisions (for reasons such as acute illness or chronic conditions like dementia) we say that they “lack capacity.” In such instances we identify a person who can legally make decisions on their behalf. Capacity is decision dependent – so a patient may have capacity to say they don’t want to eat lunch but lack capacity to decide to undergo vs. decline a life-saving surgery. Capacity also can be fluid, so perhaps an acutely ill person doesn’t have capacity initially but as they start to recover, they regain capacity. For patients with conditions like dementia, often capacity is never restored if lost.

In tricky cases like the patient described above, the healthcare system can do less than you might think. We can easily treat acute illnesses that are a complication of a patient’s confusion (such as frost bite) but we have few ways to help avoid frost bite in the first place. Hospital social workers can help find nursing facilities to offer at discharge, but seldom can we force patients to go to a nursing facility if they don’t want to go. It’s also worth noting that we do not have the ability to find housing for people experiencing homelessness – so unless they need a short-term skilled nursing facility at discharge, we often have no choice but to discharge patients experiencing homelessness back to the street once they’re medically stable.

In these circumstances, sometimes those of us in healthcare are left with unsettling discharges either because our patients discharge even though we don’t think they’re ready or because we discharge them to the street (or to an unsafe home). In the case of the patient who yelled “It’s my religion, my decision!” as they made their dramatic exit, the patient declined our safe discharge ideas. Even though their medical decision-makers agreed with us, no one could force the patient to do something they did not want to do. After discharging the patient, we (their care team) found ourselves keeping an eye out for them as we drove to and from work. Our plan was to call Adult Protective Services if we saw the patient – because we all knew they had no way to get home. We couldn’t force them to wait for a ride and they had no money for the bus. We also weren’t convinced they knew how to get home. We all suspected they’d end up wandering the streets. As I drove on the lookout, I was reminded how limited our healthcare system can be. I was also reminded that balancing patient autonomy and medical beneficence is not always easy.