End-of-life conversations with a parent How to start when they keep changing the subject

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Do not open with a formal talk about death. Use something that happened to someone else as the way in, then ask one question about what matters to them. Let the rest of it wait for another day.

The guidance below comes from five public sources. They are the National Institute on Aging's advance care planning guidance, the Alzheimer's Association's legal planning pages, The Conversation Project's free guides, Medicare's coverage page, and CaringInfo's state forms. The National Institute on Aging describes The Conversation Project as a public engagement initiative led by the Institute for Healthcare Improvement. None of the conversation guidance treats this as one sit-down talk. The dementia guide is the most direct about it: "The idea of one big conversation can be overwhelming. Instead, you can have several short conversations. Pick just one question at a time."

Openers that route through someone else

The Conversation Project publishes two guides that are useful here, and they are written for two different people. The 2021 Conversation Starter Guide is addressed to the person doing their own planning. The 2023 guide for caregivers of people with Alzheimer's or other forms of dementia is addressed to you. That second guide is the one with advice for a parent who insists nothing is wrong: "Make clear that the conversation is for everyone, not just for them." It suggests having the conversation "both ways," with both of you talking about your wishes for health care through the end of life.

Routing through a third party works for that reason. When you talk about a friend who was hospitalized, or about what you have written down for yourself, your parent is not the subject of the conversation yet. The dementia guide describes the same move as something to watch for: "Take note of situations that might invite conversations such as the experience of friends and family, or illness and death in TV or books."

Lines the guides actually print

The first four below are from the dementia guide, written for a caregiver to say out loud. The last two are from the starter guide, which was written for a person planning their own care, so they work when you use them about yourself and let your parent answer if they want to.

• Open with a request: "I need your help with something."
• Ask about a day, not a diagnosis: "What does a good day look like for you?"
• Say why you are asking: "I want to make sure I know how you feel."
• Share the weight: "We'll figure this out together."
• Bring in the third party: "I was thinking about what happened to ___, and it made me realize ___."
• Ask about someone who died: "When ___ died, do you think their wishes and priorities were respected toward the end of their life?"

The dementia guide also says what to do when the reaction is bad. "Pay attention to your tone. This is a time to be gentle, curious, and humble. Don't pressure someone into talking." And on arguing: "focus on feelings, not facts. In other words, if the person is upset, try to respond to their feelings rather than arguing."

Values questions come before treatment questions

The National Institute on Aging's first suggested step in advance care planning is not paperwork. It is this: "Reflect on your values and wishes. This can help you think through what matters most at the end of life and guide your decisions about future care and medical treatment." The same page adds that if a person is not ready to discuss specific treatments or care decisions, it helps to talk about general preferences instead.

The Conversation Project builds its whole starter guide around one unfinished sentence: "What matters to me through the end of my life is..." Its own examples of how people finish it are concrete and unmedical, including "being able to recognize my children" and "being able to spend time with the ones I love."

• "What does a good day look like for you?"
• "What or who supports you during difficult times?"
• "What matters to me through the end of my life is..."
• "If you weren't able to speak for yourself, would you want people to follow all your wishes or do what they think is best in the moment?"
• "If your health condition changed, when would it be OK with you to shift from trying to cure an illness to trying to enjoy the end of life as much as possible?"

The starter guide's answers are meant to be written down. It says sharing that statement "with people you trust could be a big help if they need to communicate with your health care team one day." Those people, it adds, "may need to share what's important to you and what you need to be able to have a good day." They may also need to decide what type of treatment you would want.

Several short conversations, with time in between

The Conversation Project's own saying for the timing problem is "It always seems too soon, until it's too late," and its starter guide prints that line next to the question of when you will start. What the guide does not do is treat the start as the whole job. Step 4 of the guide is called Keep Talking, and it suggests specific moments to come back: "when life changes happen, such as the birth of a baby, when family and friends are together for a holiday or visit, before a trip, or when a health issue is getting harder to manage."

Two of the guide's tips take pressure off a first attempt that goes badly. "Be patient. Some people are nervous or may need time to get ready to talk." And, on the worry that an answer given today locks your parent in: "Nothing you say is permanent. You can always change your mind as things change in the future." The guide also tells you to stop performing. "You don't have to lead the whole conversation; it's important to also listen to what the other person says so you can build trust."

Write down what you get. The dementia guide's advocacy step asks caregivers to "write down their wishes and share this document with family and friends, the people who work at the assisted living facility, and their doctor or other members of the health care team." It also offers one physical instruction. For a parent still living at home, put the document in a colorful labeled envelope on the refrigerator, in the guide's words, "for emergency responders to find, if needed."

The doctor's visit is already covered for this

If your parent will not discuss it with you, the same conversation has a covered slot at the doctor's office. Medicare Part B covers voluntary advance care planning as part of the "Welcome to Medicare" and yearly "Wellness" visits. Medicare's own coverage page states the cost: "You pay nothing if your health care provider accepts assignment and this planning is part of your 'Welcome to Medicare' or yearly 'Wellness' visit. If you get it as part of other medical treatment, the Part B deductible and coinsurance apply."

The National Institute on Aging lists talking with a doctor as one of its steps. Its own coverage line is narrower. It names only the annual wellness visit, and it adds one instruction worth acting on: "If you have private health insurance, check with your insurance provider." Medicare's page says an advance directive can be discussed "with an attorney or your health care provider, and they can help you prepare your documents." That is the ask to make when you call the office before a visit.

State law picks the decision maker when nothing is written

The default rule is the part worth saying to your parent, because it puts the paperwork on the side of keeping control. The National Institute on Aging puts the default plainly: "If you do not have an advance directive and you are unable to make decisions on your own, the state laws where you live will determine who may make medical decisions on your behalf. This is typically your spouse, your parents if they are available, or your children if they are adults." To find out what your own state does, that page says to contact your state legal aid office or state bar association.

The treatment default is narrow and specific, and worth stating that way. The National Institute on Aging's specific statement concerns resuscitation: "Without a DNR order, medical staff will attempt every effort to restore your breathing and the normal rhythm of your heart." A do-not-resuscitate order is one document among several, and the differences between a POLST, a DNR and an advance directive decide which one applies in which setting.

One figure is worth carrying into the conversation. The National Institute on Aging's advance care planning page, last content-reviewed on October 31, 2022, cites one study in which "people guessed nearly one out of three end-of-life decisions for their loved one incorrectly." That is the case for having the conversation, and it is also the case for continuing it after a form is signed.

One more thing your parent may want to hear before they sign anything. The same page is explicit that a directive is "legally recognized but not legally binding," which means a provider and a proxy will try to respect it and may face situations it does not cover. If you are starting from zero on the documents themselves, what an advance directive covers and how to get free state forms is the practical companion to this conversation.

Dementia changes the timing, and capacity is judged document by document

The Alzheimer's Association is direct about urgency: "While it's important for everyone to plan for the future, legal plans are especially vital for a person diagnosed with dementia. The sooner these plans are put in place, the more likely it is that the person living with dementia will be able to participate in the process."

Correcting the version of this you have probably read

The common advice says the legal window closes once dementia reaches the moderate stage. Neither of the sources this page relies on says that. The Alzheimer's Association ties capacity to the document, not the stage: "Legal capacity is the ability to understand and appreciate the consequences of one's actions and to make rational decisions. In most cases, if a person with dementia is able to understand the meaning and importance of a given legal document, he or she likely has the legal capacity to execute (to carry out by signing) it." It adds that the level of capacity required "can vary from one type of document to another." A lawyer, that page says, can help determine what level a particular document requires. The Conversation Project's dementia guide pushes back from the other side: in middle-stage disease, it says, "there may still be moments when it's possible to remind the person with dementia about their experiences with someone at the end of life," ask how they felt, and learn their preferences. A stage label is not a verdict on either the conversation or the signature.

The Alzheimer's Association lists three things to do before a person with dementia signs anything. Discuss the document, and make sure the person understands what they are being asked to do and what follows from it. Ask for medical advice, because a doctor can help determine mental capacity if you have concerns about their understanding. Assess existing legal documents, since a living will, trust or power of attorney completed years ago may need updating. Its free online course on these conversations is called Dementia Conversations: Driving, Doctor Visits, Legal & Financial Planning.

One reframe from The Conversation Project's dementia guide changes how the resistance reads. "Dementia causes changes in the brain, often making it hard for someone with the illness to know they have it. What may look like denial is often a lack of awareness." The guide's conclusion from that is practical: "The goal is to learn about the person's values and needs, and to document them... It is not necessary for the person to acknowledge their diagnosis." If a recent diagnosis is what brought you here, the first steps after a dementia diagnosis covers the legal and financial sequence this conversation feeds into.

When your parent still will not engage

There is one question the dementia guide suggests for exactly this, and it asks only for permission. "Confirm who will make decisions. Try saying, 'I understand you don't like talking about this. Are you comfortable with me making decisions if you can't speak for yourself? Is there someone else you want to make decisions?'" A parent who will not describe what they want at the end of life may still be willing to name who should speak for them.

If your parent will name someone, the choice is worth getting right the first time. The National Institute on Aging's page on choosing a health care proxy says a proxy must be of sound mind and, in most states, age 18 or older, with Alabama and Nebraska setting 19. It also lists people the American Bar Association generally recommends against naming, including your health care provider, the owner or operator of your health or residential care facility, a professional evaluating your ability to make decisions, and your court-appointed guardian. Naming an alternate is suggested on the same page, in case the first choice is unavailable.

If that lands nowhere, the guide's instruction is to stop for now. "If the person really doesn't want to talk, take a pause. Keep the door open for more conversations in the future."

Building the record without their help

The dementia guide has a whole section for families whose person can no longer answer, and its questions are usable when a parent simply will not answer. It tells you to think about "how they lived their life, and what values and wishes they expressed in the past," and to ask others who know them well to help you answer. Its questions are the ones to write down answers to now, while you can still check them.

• "Would they worry about not getting enough care? Or that they would get overly aggressive care?"
• "Would they be OK with spending their last days in the hospital? Or would they really want to spend their last days at home or in a home-like environment?"
• "Would they want us to take care of all their needs ourselves, or would they want us to get some help from professionals?"
• "What are the three most important things they would want us to know about their wishes for care through the end of life?"
• "What kinds of treatment would they want (or not want)?"

Notes like these carry no legal force, are not an advance directive, and do not replace one. What they do is give a proxy and a care team something specific to work from, which is the stated purpose of the "what matters to me" statement in both guides.

On the legal side, the two authorities point in slightly different directions and both are worth using. The National Institute on Aging routes people to a state legal aid office or state bar association to learn their state's rules. The Alzheimer's Association says certain documents can be completed without a lawyer, but that "getting legal advice and services from an attorney who specializes in elder law can be especially helpful." Free state forms and instructions are published by CaringInfo, which describes itself as a program of the National Alliance for Care at Home and notes that states vary in their requirements for witnesses, notarization and other specifics.