When “Patient Safety” Starts to Look Like Patient Control

Healthcare professionals talk a lot about patient autonomy.

 

We talk about informed consent and a patient’s right to participate in their care. We talk about  respecting individual choices.

 

But I sometimes wonder how much we actually believe in those principles when a patient makes a decision we don’t like.

 

Recently, I cared for an older gentleman who had been hospitalized and was being evaluated for discharge. The physician felt strongly that he should go to a rehabilitation or nursing facility before returning home.

 

The patient felt just as strongly that he wanted to go home.

 

He wasn’t confused. He wasn’t disoriented. He wasn’t unable to communicate what he wanted.

 

Quite the opposite.

 

During the day, I watched him interact with a trusted friend who was helping manage things at home while he was hospitalized. He discussed his bills, wrote checks, explained exactly how each payment should be handled, and gave detailed instructions about his finances. I have known 20-year-olds who couldn’t do what he was doing.

 

This was not a man who had no idea what was happening around him. He was engaged, organized, and very clear about his wishes.

 

Throughout the day, I watched him walk to the bathroom with his walker. Physical therapy had evaluated him, and, while he had some issues with weakness, he did very well. Both the physical therapist and I communicated to the physician that he did not want rehabilitation and that he was able to safely ambulate to address his needs.

 

Still, the answer remained the same: He should go to rehab.

 

At one point, the physician asked me to call his daughter and try to get her to persuade him; that bothered me. Family can be invaluable in healthcare. Families help us understand patients, support them, advocate for them, and sometimes help them make difficult decisions.

 

But when a capable adult has already made his decision, his family should not suddenly become a tool for the healthcare team to obtain the answer we wanted in the first place. His daughter doesn’t get a vote simply because we prefer her answer to his.

 

Then the physician told the patient that if he refused rehabilitation, he would have to leave the hospital against medical advice.

 

That was the moment the situation turned with me. We were no longer offering a patient options for his healthcare; we were attempting to direct the outcome.

 

I told the physician I thought it was unfair to put an alert, capable adult in that position.

 

What exactly are we saying when we tell someone: Go where we want you to go, or your discharge becomes “against medical advice”?

 

To be clear, physicians absolutely have an obligation to make recommendations. If a doctor believes a patient is at significant risk of falling, being unable to care for himself, missing medications, becoming injured, or returning to the hospital, she should say so. She should explain those risks clearly. She should tell the patient why rehabilitation is recommended. She should make certain the patient understands what could happen if he chooses differently.

 

After that? There comes a point when the decision belongs to the patient.

 

That is the part of patient autonomy that healthcare sometimes struggles with. Autonomy is easy when the patient agrees with us.

 

“Yes, I’ll go to rehab.”

 

“Yes, I’ll take the medication.”

 

“Yes, I’ll have the procedure.”

 

“Yes, I’ll stay in the hospital.”

 

It becomes considerably harder when the answer is no. And that is exactly when autonomy matters most.

 

A patient does not lose ownership of his life because a healthcare professional believes she knows what is best for him.

 

We can educate and recommend. We can strongly discourage a decision. We can explain consequences, document our concerns, and offer safer alternatives.

 

What we should be very careful about doing is turning our recommendation into something that feels like an ultimatum.

 

There is an enormous difference between saying: “I believe rehabilitation is the safest option for you. Here are the risks I am concerned about if you return home. I want you to understand those risks before you decide.” and saying: “If you won’t go to rehab, you’ll have to leave AMA.”

 

One is informed medical advice. The other can start to feel a lot like pressure. And healthcare professionals should be willing to examine that distinction.

 

Of course, decision-making capacity matters. Being awake and oriented does not automatically mean someone has the ability to make safe medical decisions. A patient has to understand the decision, appreciate the potential consequences, understand the available options, and communicate a choice.

 

When someone cannot do those things, the situation is different.

 

But when a capable adult understands what we are recommending, understands the risks of refusing it, and continues to say, “No. I want to go home,” we have to confront an uncomfortable reality: He has the right to make a decision we believe is a bad one.

 

That doesn’t mean we stop caring. It means we change the question. Instead of: “How do we make him go to rehab?” maybe we ask: “How do we make going home as safe as possible?” Can home health be arranged? Can physical therapy continue at home? Does he need equipment? Does he need medication organization? Does he have neighbors, friends, or family who can check on him? Does he understand exactly what symptoms should bring him back? Can follow-up appointments be scheduled before he leaves?

 

That is still patient safety. But it’s patient safety built around the patient’s goals instead of around our preferred outcome.

 

Nurses are taught to advocate for their patients. Sometimes advocacy means pushing until someone receives treatment they desperately need. Sometimes it means noticing a subtle change nobody else has seen. Sometimes it means speaking up when something feels unsafe.

 

And sometimes advocacy means something much less comfortable: Standing beside a capable patient when he makes a decision that the healthcare team wouldn’t make for him.

 

We don’t have to agree with every patient decision. We probably shouldn’t. But if patient autonomy means anything, it has to mean more than: “You are free to choose—as long as you choose what we recommended.”

 

The measure of whether we truly respect autonomy isn’t what happens when the patient says yes. It’s what we do when the patient looks at us, understands everything we’ve told him, and says: “No”.

*Fueled by Purpose.*

— Code Coffee