I Need to Talk With Them About What They Want

Start With What Matters, Not a List of Procedures

You don’t have to begin with CPR, feeding tubes, ventilators, or other specific treatments.

Those questions are easier to answer once you understand what the person is trying to protect.

They may care most about:

• being able to communicate or recognize people
• staying independent or at home
• being comfortable
• staying mentally alert
• having more time even if treatment is difficult
• avoiding burdens they’d find unacceptable
• religious, cultural, or relationship priorities

Learn what makes treatment worth it to them before trying to predict every treatment they’d choose.

Ask About the Tradeoffs

People often want more than one thing at the same time.

Ask:

“What are you hoping for?”

“What are you most afraid might happen?”

“What would you be willing to go through for the chance of more time?”

“What would make treatment feel like too much?”

Values become useful when someone knows which tradeoffs the person would and wouldn’t accept.

Ask Who They Trust

Once they’ve named someone, ask whether there’s anyone else they want included, or anyone they don’t want involved.

Then make sure that person knows and is willing to do it. Ask the person to say it directly:

“I’d like you to speak for me if I can’t. Is there anything about what I want that you’re unsure about?”

Telling people who you want to speak for you may not formally appoint them. To formally name that person, complete the document your state uses.

If the Conversation Goes Badly

If it upsets them, you can stop and come back to it.

You can say, “I’m asking because I want to get this right, not because anything’s wrong.”

If Their Ability to Participate Changes

The person may be clearer at some times than others, or able to answer some questions but not others. Use the times when they’re most alert.

Even if someone else is helping make decisions, keep asking what the person can still tell you about their fears, hopes, preferences, and who they trust.

Don’t stop listening to the person just because someone else has authority to decide.

If the question has become who’s authorized to decide, or what to do when the person can no longer clearly answer, use I Don’t Know What They Would Want →

If They Don’t Want to Talk

Don’t force the whole conversation. Ask one smaller question:

“You don’t have to decide everything. Is there one thing you’d want us to know if you got sicker?”

or:

“Is there anything you definitely wouldn’t want?”

Some people would rather talk with a clinician, social worker, chaplain, friend, or another trusted person.

If they clearly don’t want to discuss it, respect that.

A short honest answer is more useful than a long conversation they don’t want to have.

Tell the Care Team What Matters

Share the priorities that may affect care.

For example:

“Being awake enough to talk with family matters more to her than extending life at any cost.”

“He wants to stay home if that can be done safely.”

“She’d accept difficult treatment if there were a reasonable chance of getting back to living independently.”

If a specific medical decision is already in front of you, use I Need Help Making a Medical Decision for Someone Else →

Put the Important Parts in Writing

Write down what someone may need later:

• what matters most
• what the person would find unacceptable
• who they trust to speak for them, and who they want involved
• any religious or cultural priorities that could affect care

Then tell the chosen decision-maker where that information is.

The conversation gives the forms meaning.

If formal documents are needed, use I Need Advance Directive Forms →

Before You Rely on the Plan

Confirm:

• the person chosen to speak for them knows they were chosen
• that person understands what matters most
• important preferences have been shared with the care team
• the most important wishes are written somewhere they can be found

A good decision-maker shouldn’t have to invent the person’s values during a crisis.