It can happen surprisingly quickly.

A patient is admitted to the hospital.

The doctor recommends a treatment.

The patient isn’t sure they want it.

Their spouse thinks they should have it.

One adult child agrees with the doctor.

Another doesn’t.

And before long, everyone is talking about what should happen.

But underneath all of those opinions is a much more important question:

Who actually gets to decide?

In healthcare, loving someone doesn’t automatically give you the right to make their decisions.

And being sick doesn’t automatically take away a person’s right to make decisions for themselves.

Start With the Patient

This is the simplest place to begin.

An adult who has the ability to make their own healthcare decisions generally makes those decisions.

Not their spouse.

Not their children.

Not the person in the family who knows the most about medicine.

The patient.

That can be difficult for families, particularly when they believe the patient is making the wrong choice.

I’ve seen families struggle with this.

They love the person. They’re frightened. They want to protect them.

But there is an important difference between disagreeing with someone’s decision and that person being unable to make a decision.

Those are not the same thing.

A Decision You Don’t Like Can Still Be Their Decision

Imagine Dad is told that a procedure could help him.

His children desperately want him to have it.

Dad listens, understands what the doctors are saying, asks questions and says:

“No. I don’t want to do it.”

The family may be devastated.

They may think he’s making a terrible mistake.

But if Dad understands the situation, the choices available and the potential consequences, the fact that his family disagrees doesn’t automatically mean they can override him.

Patients are allowed to have different priorities.

One person may choose every reasonable treatment available.

Another may decide the burdens of a treatment aren’t worth the potential benefit.

Healthcare decisions aren’t made only from medical facts.

They’re also made from values, goals and what matters to the person living with the consequences.

What If the Patient Can’t Decide?

This is where things become more complicated.

Sometimes illness temporarily or permanently affects a person’s ability to make a particular healthcare decision.

Severe confusion.

Delirium.

Unconsciousness.

Advanced cognitive impairment.

Certain neurological conditions.

But decision-making ability isn’t simply:

Sick or not sick.

And it isn’t automatically lost because someone is older, forgetful, hospitalized or has a diagnosis of dementia.

Clinicians assess whether the patient can understand the relevant information, appreciate what it means for their situation, consider the options and communicate a choice.

Capacity can also change.

A patient who is confused during a severe infection may be much clearer several days later.

Whenever possible, the patient should remain involved.

This Is Why Advance Planning Matters

If you couldn’t speak for yourself tomorrow, who would you trust to speak for you?

That’s an uncomfortable question.

It’s also an important one.

Advance directives and healthcare proxy or power-of-attorney documents can help identify the person you want involved if you become unable to make your own healthcare decisions.

The exact rules and terminology vary by state.

But the larger purpose is simple:

Your voice doesn’t disappear just because you can’t speak.

The person making decisions on your behalf should be trying to represent your wishes and values, not simply choosing what they personally would want.

That’s an important distinction.

“But I’m His Wife.”

Family relationships matter enormously.

But being the closest relative doesn’t necessarily settle every question about legal decision-making authority.

State laws determine who may serve as a surrogate when someone cannot make decisions and hasn’t formally named a healthcare agent.

That’s why families shouldn’t have to figure this out for the first time during a crisis.

Knowing who the patient chose—and talking about what the patient would want—can prevent tremendous confusion later.

What Happens When the Family Disagrees?

This can be incredibly difficult.

I’ve seen situations where everyone in the room genuinely loves the patient and still has completely different ideas about what should happen.

Sometimes the disagreement is really about fear.

Sometimes family members understand the medical information differently.

Sometimes old family dynamics walk straight into the hospital room.

The healthcare team can help clarify the medical situation and the available choices.

Social workers, patient advocates, chaplains, palliative-care teams and hospital ethics services may also help when difficult disagreements cannot be resolved.

The goal shouldn’t be to determine which family member wins.

The goal is to keep bringing the conversation back to:

What would this patient want?

Don’t Let the Patient Disappear

This may be the part I care about most.

Healthcare can become incredibly complicated.

Doctors are thinking about treatment.

Nurses are thinking about safety.

Families are frightened.

Everyone is trying to help.

And sometimes, without anyone intending it, the person lying in the bed becomes almost secondary to the decisions being made around them.

We have to keep bringing the patient back into the center.

Ask them when they can answer.

Explain things in a way they can understand.

Give them time to ask questions.

Find out what matters to them.

Because healthcare decisions ultimately aren’t about what is easiest for the family or even what medicine is capable of doing.

They’re about the life of the person receiving the care.

And whenever that person can speak for themselves, perhaps the most important thing everyone else can do is very simple:

Listen.

References

American Medical Association. Decisions for Adult Patients Who Lack Capacity.

National Institute on Aging. Advance Care Planning: Advance Directives for Health Care.

American Bar Association Commission on Law and Aging. Health Care Decision-Making.

The Joint Commission. Speak Up: Your Rights as a Patient.