I Don’t Know What They Would Want

Find Out Who’s Authorized to Decide

Ask the care team:

“Who’s recognized as the decision-maker for this decision?”

Ask whether there’s an advance directive, health care power of attorney, proxy, or another document that applies.

Don’t assume the closest relative is automatically the decision-maker.

If authority is disputed or unclear, use I Need Legal Help →

Start With What the Person Said

Look for what the person said before, not what other people think they should have wanted.

Ask:

• Did they ever talk about serious illness or dying?
• Did they say what outcomes they’d find unacceptable?
• Did they say whether more time, comfort, independence, mental alertness, or being at home mattered most?
• Did they ever talk about treatments they would or wouldn’t want?
• Did they name someone whose judgment they trusted?

Look for advance directives, medical orders, notes, messages, or other documentation.

A specific statement about a similar situation may tell you more than a vague comment made years ago.

Look for the Pattern

When there’s no exact statement, look at how the person lived and made other serious decisions.

Consider:

• what they valued most
• what burdens they were willing to accept
• what they feared
• what abilities or relationships mattered most
• how they felt about dependence, institutions, machines, or prolonged treatment

Ask yourself:

• What did they say mattered most when they were sick before?
• How did they make other serious health decisions?

Don’t turn one casual comment into the whole answer.

Look for a pattern, not a quote you can make fit.

Ask What Choice Best Fits Them

The decision-maker’s job isn’t simply to choose what they’d want for themselves.

Ask:

“We may not know exactly what they’d choose. Which option best fits what we actually know about them?”

Then bring that back to the medical decision. Ask the clinician:

“How would each option affect the things that mattered most to this person?”

You can also ask:

“Based on what I’ve told you about them, what do you recommend, and why?”

If you’re the authorized decision-maker, you still make the decision, but you don’t have to build it alone.

If you need help understanding the treatment choices, likely outcomes, burdens, or whether a time-limited trial would help, use I Need Help Making a Medical Decision for Someone Else →

If There Isn’t Enough Information

Sometimes there’s no clear answer. Say that.

Ask what has to be decided now, and whether there’s time to get more information or another opinion.

If nothing is known about what they’d want, ask which option is most likely to benefit them with the least burden or harm. Ask the clinician to help you weigh the likely benefits, burdens, and what life may be like with each option.

Don’t create certainty that isn’t there. The goal is the best-supported decision possible with the information that exists.

If Family Members Disagree

Name what the disagreement is about.

“What are we disagreeing about: the medical facts, what’s likely to happen, or what this person would have wanted?”

Then bring it back to the person, not to who argues best.

If disagreement is stopping a decision that has to be made, see We Disagree About What Should Happen →

If the Person Left Conflicting Instructions

People may say different things at different times.

Ask which statement was more recent, and whether the person was talking about this situation or something different.

Also ask whether their health or priorities changed afterward, and whether there’s a written directive or current medical order.

If an advance directive exists but the care being provided doesn’t seem to follow it, use I Need Help When an Advance Directive Isn’t Being Followed →

Before You Rely on the Decision

Confirm:

• who’s authorized to decide, and what the person can still decide for themselves
• what prior statements, documents, or patterns support the decision
• what the care team understands about why this choice fits the person