Starting advance care planning is the hard part

If you are wondering how to start advance care planning, the answer is smaller than you may expect: one honest conversation with one person. The forms come later.

This guide is about the talking, not the paperwork. It is not legal advice. Advance directive forms and signing rules differ between Missouri and Illinois, and an attorney can answer legal questions.

Begin with yourself

First, write down short answers to a few questions. There are no wrong ones.

  • What does a good day look like for me now?
  • Which abilities would be hardest to live without? Knowing my family, feeding myself, living at home?
  • What worries me most about getting sicker? Pain, being a burden, being alone, machines?
  • Thinking of a hospital stay I have seen up close, what would I want done differently?
  • Whom do I trust to speak for me?

Opening lines for family and friends

Pick a quiet time, not a holiday dinner or a hospital hallway. Then borrow one of these:

  • “I need your help with something. If I am ever too sick to speak for myself, I want you to know what I would choose.”
  • “Remember how hard it was when we had to guess what Grandma wanted? I do not want that for you.”
  • “My clinician asked who should make decisions if I cannot. I would like it to be you. Can we talk about what that means?”

If you are the adult child, try: “I want to do right by you. If your health changes, what matters most?”

Asking someone to speak for you

The person who decides for you when you cannot is often called a health care agent. Ask directly, and make three points:

  1. “I am asking you because I trust you to say what I would say, not what you would want.”
  2. “Here is what matters most to me.” Share your answers from the list above.
  3. “You can say no.” A reluctant agent is worse than a second choice who is willing.

Tell the rest of the family whom you chose and why. Our page on advance care planning conversations says more about choosing well.

If memory is starting to slip, do not wait. These talks are easier while a person can explain their own wishes, and a clinician can help with memory concerns.

Questions to bring to a clinician

A clinician can tell you what your choices would look like in real life. Ask:

  • What is likely ahead for me over the next year or two?
  • For someone with my conditions, what do CPR, intensive care or a breathing machine involve, and how do people tend to do afterward?
  • If my wound cannot heal, what would palliative wound care, meaning care aimed at comfort, look like?
  • Will you note my wishes and my agent’s name in my chart?

Some people raise the subject at an annual wellness visit, where planning time may be offered. It is voluntary.

Putting it on paper and passing it around

An advance directive names your agent and records your wishes. A clinician’s office or a hospital social worker can often point you to standard forms. Gateway does not prepare legal documents or advise on them.

A directive that no one can find does not help. Once yours exists:

  • Give copies to your agent, your primary care clinician and the hospital you use
  • Give one to your facility, if you live in one
  • Keep one at home where family can find it
  • Tell your wound care team that it exists and who your agent is

Naming an agent is separate from giving people permission to hear routine updates. Our guide to who can receive wound care updates explains that side.

When to have the conversation again

Wishes change as life does. Go back over them after a new diagnosis, a clear decline, a hospital stay, a move, or a death or divorce that affects your choice of agent. If nothing changes, look again every few years.

How Gateway can help

Gateway arranges in-home primary care follow-up with partner clinicians across Greater St. Louis and the Metro East and keeps your existing physician involved. Tell us you want time for a planning conversation, and we will let the treating clinician know before the visit.

Call 314-325-0126 or send the request care form with a name and phone number only. In an emergency, call 911.

Common questions

What if my family changes the subject every time I bring it up?

“You are going to be fine” is usually love, not refusal. Ask for ten minutes and start with one topic, such as who should speak for you. Some families do better with a letter, or with a clinician leading the talk during a visit. You can also plan with one willing person and tell the others afterward.

Can I change my mind after my wishes are written down?

Yes. While you can make your own decisions, you can change your wishes or choose a different agent. Tell your agent and clinician, and replace the old copies. The formal steps for replacing a document depend on state rules, so ask an attorney or the source of your form.

Does the person I choose have to live nearby?

In practice, distance matters less than being reachable, willing and clear about what you want. Clinicians regularly talk with decision-makers by phone, and many people name a backup. Check your state’s form for its rules about who may serve, and ask an attorney if you are unsure.

What is the difference between an advance directive and a medical order form?

You write an advance directive. It names your agent and guides future decisions, and any adult can have one. A medical order form is signed by a clinician for a person with serious illness or frailty, and it turns specific wishes, such as those about CPR, into orders others can follow. Its name differs by state.

Related pages

General information to help you talk with your own clinician. It is not medical advice, and the treating clinician makes every clinical decision. For a medical emergency, call 911.

Updated October 2026