Values and planning conversations

1. What advance care planning is, and is not

Advance care planning is the process of thinking about, talking about and writing down what a person would want from their health care if they became seriously ill or unable to speak for themselves, and who they would want to speak for them. CMS describes it, from the clinician's side, as a voluntary discussion about the person's health care wishes if they become unable to make their own medical decisions.

Two things follow from that definition, and both shape your work.

• It is a process, not a form. The Conversation Project, an initiative of the Institute for Healthcare Improvement, builds its guide around four steps: think about what matters, plan the talk, start talking, and keep talking. A signed document is one possible result, not the whole point.
• It is voluntary. CMS says people should be given a clear opportunity to decline. Nobody owes anyone this conversation, including you.

Hospitals, nursing homes, home health agencies and hospices that take Medicare or Medicaid already have duties here. Under the federal Patient Self-Determination Act of 1990, they must give adults written information about their right under state law to make medical decisions and to make an advance directive, and record in the chart whether the person has one. A federal policy review (ASPE) describes the Act as mainly an information and education requirement: it does not create new decision-making rights. So the person you sit with has probably been handed a leaflet. What most people have not had is an unhurried conversation. That is where you come in.

2. The documents in plain words, and who signs each

You are not the person who prepares these documents. You do need to know what each one is, so you can use the right word and send the person to the right place. Names, forms and signing rules differ by state; the table gives the general pattern.

The site's advance directives page covers these for families in more depth. Two points trip up even experienced helpers.

POLST is not for everyone. The National POLST Collaborative says POLST is intended for people who are seriously ill or have advanced frailty, that it should never be filled in without a conversation with the person or their surrogate, and that people should not be handed the form to complete on their own. A healthy person who wants their wishes known is usually pointed to an advance directive instead.

An advance directive from one state may not work in another. CaringInfo, a program of the National Alliance for Care at Home, notes that some states honor other states' directives, some only if they are similar to their own law, and some have no clear answer.

How to find your state's forms

• CaringInfo publishes each state's advance directive form with instructions.
• CMS tells clinicians that state forms can generally be found through the state attorney general.
• The National POLST Collaborative keeps a directory of state POLST programs and their names.
• The person's own clinic, hospital or hospice social worker usually has the local forms.

Witnesses, notaries and you

Most states require witnesses, a notary, or a choice of either, and many restrict who may witness. The American Bar Association's Commission on Law and Aging keeps a state-by-state chart (current as of September 2019) of who may not witness a health care power of attorney; depending on the state, the list includes the named agent, relatives, heirs or beneficiaries, people responsible for the person's care costs, and health care providers. Check the form's own instructions; they change.

The rule for this program is simpler than any state's: a doula does not draft, complete, witness or notarize any legal document, and does not advise on one. That protects the person, and it protects you. If you were ever named in a will, given a gift, or might benefit in any way, your signature as a witness could invite a challenge to the whole document. Even where the law would allow it, stepping back keeps everyone's trust clean. If a family asks you to witness, a kind answer is: "I'm not able to be a witness. The form's instructions say who can be, and the social worker or a notary can help."

And you never pressure anyone to sign anything. A person who is not ready to name an agent or fill in a form is exercising the same right the form exists to protect.

3. Two kinds of conversation

The most important line in this module is between a values conversation and a medical-orders conversation. Both are part of advance care planning. Only one is yours.

Clinicians have their own tools for their side of the line. The Serious Illness Conversation Guide from Ariadne Labs is a structured guide for clinicians. Ariadne Labs lists its steps as setting up the conversation, assessing the patient's understanding and information preferences, sharing prognosis, exploring key topics, and closing and documenting. You should know it exists, because a clinician may use its language, and because it shows you plainly where the doula stops: you do not share prognosis, and you do not assess what the person understands about their illness in a clinical sense.

The hand-off, in practice

Values conversations drift toward medical questions all the time. "Would a feeding tube help him?" "Should she have the surgery?" "What does it mean that her kidneys are failing?" The skill is to notice the moment and hand it on without shutting the person down. An example of what that can sound like:

"That's such an important question, and it's one for your doctor, because the answer depends on things only your doctor knows about your illness. Shall we write it down so you have it at your next appointment?"

Then you write it down, in their words.

4. How a values conversation goes

Readiness and permission

Ask before you begin, every time. Some people are relieved to be asked. Some are not ready, and for some cultures and families, speaking directly about death is not the right way at all (see Module 8). Permission is not a formality; it is the first act of respect. Examples of opening offers:

• "Some people find it helps to talk about what matters most to them, so the people they love don't have to guess later. Is that something you'd like to do, now or another day?"
• "Would it be all right if I asked you a few questions about what a good day looks like for you?"

A "no" or a change of subject is an answer. Honour it and try again another day only if the person reopens the door.

Questions that open

Good questions are about the person's life, not about machines and procedures. The Conversation Project's Conversation Starter Guide offers prompts such as what a good day looks like, what or who supports the person in hard times, and finishing the sentence "What matters to me through the end of my life is...". Its guide also asks people to place themselves on scales, for example between wanting only the basics about their condition and wanting all the details, or between worrying about getting too little care and too much. Those scales are useful because they give a person words for things they may never have said.

Other published tools you should know and can point people to:

• The Conversation Project (Institute for Healthcare Improvement): the Conversation Starter Guide, a guide to choosing a health care proxy, a guide to being one, and a guide for talking with the health care team. Downloadable in several languages.
• PREPARE (University of California, San Francisco): step-by-step online programs, "PREPARE for Your Care" for a person's own planning and "PREPARE for Their Care" for people helping someone else.
• Five Wishes (Aging with Dignity): a named advance directive product that covers who makes decisions, the treatment the person wants or does not want, physical comfort, spiritual comfort, and what they want loved ones to know. It is sold, not given away, and Aging with Dignity publishes where it meets legal requirements; check your state before relying on it as a legal document.
• CareGoals, a sister site of this one: its Facing the end page is a gentle place to start putting wishes in writing, with short cards you tap through; nothing is stored. It makes a values document in the person's own words, not a legal one.

Listening for what matters

Your job is not to get through the questions. It is to hear the person. Listen for:

• What they are living for: a grandchild's wedding, the garden, being able to recognise their family.
• What they fear: pain, being a burden, being alone, being kept alive by machines, dying in hospital.
• Trade-offs they have already made: "I'd rather be at home and sleepy than in hospital and sharp."
• Who they trust, and who they do not want deciding for them.

Reflect back rather than advise: "It sounds like being at home matters more to you than anything else." Silence is allowed. So is laughter.

Capturing wishes in their own words

When the person wants something written down, write their words, not your summary. "I don't want to be a vegetable" is theirs; "declines life-sustaining treatment in persistent vegetative state" is a clinical translation that belongs to a clinician and a legal form. Read it back: "You said: 'If I can't recognise Anna, I don't want to be kept going.' Did I get that right?" Let them change it. Date it. Give it to them; it is theirs.

Passing it on, with permission

A wish nobody knows about cannot be honoured. Ask: "Who should know this? Would you like me to help you tell them?" Then, only with permission:

• To the named agent and family: ideally the person tells them, with you present if they want.
• To the clinician: the person brings their words and questions to the next visit, or asks you to pass a note to the hospice or palliative team. The clinician decides what goes into orders.

Keep your own notes private and minimal (Module 13). Any notes you practise with in this course stay on your device.

5. The advance care planning codes are not yours

Medicare pays clinicians for advance care planning under two CPT codes: 99497 for the first 30 minutes and 99498 for each additional 30 minutes. CMS's current fact sheet (MLN909289, March 2026) says the billing is for a face-to-face discussion by a physician or other qualified health care professional; that the codes may be billed by physicians, non-physician practitioners and hospitals whose scope and Medicare benefit category include the service and who are authorized to bill Medicare independently; that at least 16 minutes must be spent and documented; and that the documentation must record that the discussion was voluntary, who was present, and the time spent.

CMS's frequently asked questions add two points that matter here. The billing clinician is expected to manage, participate in and meaningfully contribute to the service, in addition to at least direct supervision of anyone helping under the usual "incident to" rules. And CMS notes that people may get help with legal documents from others outside the Medicare program, separately from the clinician.

Put plainly: 99497 and 99498 pay the billing clinician for the clinician's own time. A conversation a doula holds, at the kitchen table or the bedside, is outside the Medicare program. It cannot be billed under these codes, by the doula or by a clinician who was not there doing the work. The Office of Inspector General audited these codes and reported in November 2022 that, in a sample of 691 advance care planning services billed in an office setting in 2019, 466 did not meet federal requirements, mostly because providers did not understand the documentation and time rules.

What you can do is make the clinician's own conversation better. A person who arrives having already thought about what matters, named an agent, and written down their questions can use the clinician's time on the medical side of the line. Two separate pieces of work, done by two different people.

6. When wishes and reality collide

Decision-making capacity

Decision-making capacity is a person's ability to make a particular medical decision. A review in American Family Physician describes four abilities: understanding the situation, appreciating the consequences, reasoning, and communicating a choice. The same review says capacity is a medical judgment made by the treating physician, while competence is a legal status decided by a court, and that capacity is assessed for a specific decision.

This is never your determination. You will notice changes: a person who repeats questions, loses the thread, or says different things on different days. Describe what you saw to the family and the clinician ("This week she didn't recognise the nurse and asked twice where her husband was"), without the label. Never say "she's lost capacity" or "he's competent." And never treat a person's earlier words as if they settled a medical decision; that is for the agent or surrogate and the clinician.

When no agent is named

If a person cannot decide and has not named an agent, state law decides who can. Many states have a default surrogate law listing who may decide, and the order differs by state. The American Family Physician review gives the typical order as spouse, adult children, parents, siblings, then other relatives. The ABA's chart of default surrogate laws (as of October 2022) shows that states handle disagreements differently: some use majority rule among, for example, adult children; some point to a court. Some also allow a close friend. A doula never decides who the surrogate is. The clinical team works that out under its state's law, often with a social worker and, in many hospitals, an ethics consultation service.

When family members disagree

Families disagree for loving reasons: guilt, distance, hope, old hurts, different faiths. Your part is not to pick a side or make peace by force. It is to help each person be heard, keep bringing the conversation back to what the person themselves said or would have said, and bring in the people whose job this is: the social worker, the chaplain, the palliative team, sometimes a family meeting led by a clinician. Module 7 goes further into family support.

When wishes were never written down

Often there is nothing on paper. That is not a failure you need to fix in a day. What was said in conversations still matters: to the agent or surrogate, and to the clinician. Help the family remember in the person's own words ("Mum always said she never wanted to go back to the ICU after Dad"), write those words down, and give them to the people who decide. Do not reconstruct a legal document after the fact, and do not encourage anyone to sign on the person's behalf.

When the conversation turns to wanting to die

Talking about death is not the same as wanting to end one's life. If a person says they want to kill themselves, or you are worried they might, stay with them, tell the care team, and call or text 988. Questions about medical aid in dying are covered in Module 11 and on the site's medical aid in dying page; a doula never counsels for or against it.