Making Care Decisions: A Guide to Advance Care Planning and Who Decides

Maybe a clinician said “advance directive” and you nodded without knowing what it meant. Maybe someone you love is struggling, and you are not sure who gets a say. Or maybe a decision is already on the table and you want to make it with a clear head.

This guide walks you through it one step at a time. Making care decisions means choosing among real medical options with your clinicians, based on what matters to you. Advance care planning helps you explain what matters to you and make care decisions that fit your values.

When a person cannot speak for themselves, a surrogate decision-maker usually steps in. The chapters below explain how that person is chosen and what you can do now.

Step 1: Name the decision in one sentence

You are at the start. There is a choice in front of you, and the whole situation feels heavy.

Start by writing the decision as one sentence, such as whether to try a treatment now or wait. A 2024 review on shared decision-making in patient care describes four questions that help: what the benefits are, what the risks are, what the alternatives are, and what happens if you do nothing.

A 2017 review of shared decision-making in stroke care found that shared decisions and decision tools can improve patients’ knowledge, participation, satisfaction and trust in the care team.

Weigh your choices against what matters most to you. A Care Decision Has Tradeoffs: Ranking What Matters Most to You walks through that ranking, and Asking About Alternatives: Benefits, Harms, and Doing Nothing covers the “do nothing” question.

Once the decision has a name, you know what you are asking for. That makes the next step easier.

Step 2: Know how your say in the decision works

You are now choosing how to speak up. Your say is strongest when you take part in the decision itself.

The FP Essentials review describes decision-making capacity as your ability to understand information about options, express a choice, appreciate the benefits and risks, and explain your reasoning. It notes that capacity is a clinical judgment, which is different from legal competence. The review calls shared decision-making the ideal, with clinicians sharing options and supporting choices based on your values.

A 2020 review on shared decision-making in food allergy care says clinicians should help clarify your values without putting their own values into your choice. For the legal side of your rights where you live, ask your clinic or a lawyer.

Before you sign anything, Questions to Ask Before You Sign a Healthcare Consent Form lists what to ask. You can also use How to Explain What Matters Most When a Healthcare Choice Has Tradeoffs to tell your clinician your priorities.

With your right to take part in view, the next question is what you want on record for later.

Step 3: Write down your wishes before you need them

You are now thinking ahead. You want your wishes known even on a day you cannot speak for yourself.

Advance care planning helps you articulate what matters to you and the care you would want. A 2018 review on advance care planning for patients with cancer calls it fundamental to supporting a patient’s personhood. The review says clinicians should encourage patients to say what matters and gives meaning to them as they live, cope and receive treatment.

Forms for this vary, and the research above does not list them. Ask your clinic which forms it accepts, where it files them, and how it shares them with your care team.

If your goals and your clinician’s words do not match, A Clinician and Patient Use Different Words for the Goal: Finding Agreement shows how to close that gap. Keep copies of your records with Request and Organize Health Records.

Once your wishes are written down, the next question is who speaks for you if you cannot.

Step 4: Find out who decides when you cannot

You are now asking who is allowed to decide, and for whom. This question often comes up when a family member is ill or a parent is worried about an adult child.

The FP Essentials review uses the term surrogate decision-maker. It says that if a patient lacks decision-making capacity, clinicians have an ethical obligation to seek a surrogate. Surrogates ideally are chosen by the patient in advance, and state laws outline who can serve when no one was chosen. A 2021 review of end-of-life decisions in stroke says surrogates often face hard choices and recommends clear, consistent communication with them.

Whether a parent can decide for an adult child depends on state rules and on what the adult child has or has not arranged. Those rules differ by state, so ask the clinic which document it needs and which state rule it follows. If your adult child can still speak for themselves, the most useful step is asking them. MedlinePlus Caregiver Health notes that caregivers often help with health and financial decisions.

If someone will join a visit for you, Joining a Medical Visit by Phone covers the setup. A Support Person Joins by Phone: Clarifying Consent and Roles explains how to agree on roles first.

Knowing who can speak is only useful if the person who speaks is ready. That is where the next conversation begins.

Step 5: Help someone close to you who is struggling

You are now the person worried about someone else. You want to help, and you may not know where to start.

This guide cannot assess your son or anyone else. Only that person’s clinician can look into what is going on. Your part can start with a simple question: what would help, and what would they like you to do?

MedlinePlus Caregiver Health says caregiving can be rewarding but also stressful and sometimes overwhelming. It lists signs of caregiver stress, including feeling overwhelmed, feeling alone, and sleeping too much or too little. It suggests asking for and accepting help, joining a caregiver support group, and staying in touch with family and friends.

A 2020 systematic review of qualitative studies on placement decisions for people with dementia found that families often felt vulnerable, disempowered and guilty. The review calls for person-centered communication and support that builds confidence.

When you are ready to speak for someone at a visit, Patient Advocacy Examples: What You Can Ask For gives examples of what to ask.

With support in place, the last step is to prepare the conversation itself.

Step 6: Prepare for the conversation and check the plan

You are now getting ready to sit down with a clinician. The goal is to leave with a plan you can repeat back.

Shared decision-making brings the medical evidence together with your goals, preferences, and values. The 2024 review on shared decision-making says that visual aids, extended appointments and cognitive assessments can help when time or health literacy is a barrier. Ask for those if they would help you.

Before you leave, repeat the plan in your own words and ask the clinician to correct any gap. Then check that the written instructions match what you heard.

If the visit gives you several instructions, You Leave a Visit With Three Different Instructions: A Teach-Back Sheet helps you sort them. Ask for written instructions with Ask for Written Instructions to Use at Home.

Once you leave, the plan has to hold up at home and in the calendar. That is the last step.

Step 7: Keep the plan on track after the visit

You are now back home with a plan. The decision is made, but the follow-through still matters.

Gaps can cause problems, such as a follow-up date that never gets set or two instructions that do not match. The Follow-Up Date Was Never Confirmed explains what to do next. If instructions conflict, Organize Conflicting Healthcare Instructions helps you sort them.

Use the list below to choose your next step, then return to any guide that fits your situation.

Your next step

1. Write your decision in one sentence.
2. Ask your clinic which advance care forms it accepts and where it files them.
3. Name the person you would want to speak for you, and tell them.
4. Ask who the clinic can talk with, and what document it needs.
5. Confirm your next date and call-back number before you leave.

Questions to ask your clinic

• Which advance care forms do you accept, and where do you file them?
• Who can I name to speak for me if I cannot speak for myself?
• What does this clinic need before it can talk with a family member about my care?
• Can you show me an example of a completed plan?

Every guide on this topic

Deciding with your clinician

• Prepare Questions and Priorities for a Shared Healthcare Decision
• A Care Decision Has Tradeoffs: Ranking What Matters Most to You
• Before a Difficult Care Conversation: Write the Decision You Need Help With
• How to Explain What Matters Most When a Healthcare Choice Has Tradeoffs
• Questions That Help You Compare Care Options When Tradeoffs Matter
• Asking About Alternatives: Benefits, Harms, and Doing Nothing
• A Test Recommendation You Are Unsure About: Questions on Purpose and Timing
• Preparing for a Second Opinion: State the Decision, Not a Preferred Answer
• How to Prepare a Second-Opinion Conversation Without Starting Over
• Questions to Ask Before You Sign a Healthcare Consent Form
• Bringing Cost Questions Into a Shared Healthcare Decision
• Asking About the Cost of a Care Option
• How to Recognize a Patient Decision Aid
• A Clinician and Patient Use Different Words for the Goal: Finding Agreement

Speaking up and getting ready

• How to Advocate for Yourself at the Doctor
• Patient Advocacy Examples: What You Can Ask For
• How to Better Advocate for Yourself in Healthcare
• Clinical Questions to Ask Your Doctor
• 100 Questions to Ask Your Doctor
• How to Prioritize Healthcare Questions
• Prepare for a Telehealth Visit
• Is a Televisit Cheaper Than an In-Person Visit?

Family, support and records

• Caregiver Handoff Note With Permission
• Joining a Medical Visit by Phone
• A Support Person Joins by Phone: Clarifying Consent and Roles
• Request and Organize Health Records
• A Medical Record Has an Error: Organizing the Correction Request
• Make a Care Team Contact Log
• Patient and Family Advisory Councils

After the visit

• When a Portal Message Is Too Complex: Asking for a Conversation
• You Leave a Visit With Three Different Instructions: A Teach-Back Sheet
• The Follow-Up Date Was Never Confirmed
• When You Do Not Understand a Care Plan
• Track a Referral and Its Next Step
• Ask for Written Instructions to Use at Home
• Organize Conflicting Healthcare Instructions
• How to Read an After-Visit Summary

This guide is for education. It is not medical or legal advice, and it does not replace care from a qualified professional.

By Better Health Questions Editorial Team