How to Talk to Aging Parents About End-of-Life Wishes

Nobody wants to have the end-of-life talk. Discussing end-of-life wishes with aging parents feels heavy, prying and somewhat macabre. It’s not for you, not for your siblings or for your mother or father.

So you delay the talk. Maybe it’s not the best time, you tell yourself, but you know it will come. After the holidays, after the next doctor’s visit and when things calm down a bit. But end-of-life planning is off limits for seven out of 10 Americans, according to a Nationwide Retirement Institute survey, even though 85% of older adults say they feel comfortable addressing the topic.

So that’s where this guide comes in. Discussing your aging parents’ end-of-life wishes isn’t a morbid task. It’s one of the most practical, loving and generous things you can give them. This guide offers practical advice on when to start, what you can say, what documents to have ready and what to do if you’re stuck for words.

Why End-of-Life Conversations with Aging Parents Matter

Here’s the truth: Only 36% of adults age 45 or older have completed end-of-life planning with a living will or advance directive, according to a Nationwide Retirement Institute survey. That means almost two-thirds of families are headed for medical emergencies without a plan in place.

When they haven’t outlined their end-of-life wishes, you have to guess. It means making a medical decision at 2 a.m. in a hospital while a physician asks if they’d like to be put on a mechanical ventilator, as is the case for some family members when a parent suffers a major illness. Without a prior conversation, you’re not honoring your parent’s wish for what will happen to them.

And there’s a good chance they’ll need one of those wishes honored if they end up in a medical crisis. An estimated 50% of hospitalized patients age 65 and older need a surrogate or proxy decision maker at some point in their hospital stay, according to the University of Utah Health. If your parent hasn’t stated their end-of-life wishes to anyone, then you become their surrogate decision maker.

Having a conversation about their end-of-life wishes while you’re both healthy and clear-headed spares you from making medical decisions during a crisis, keeps family conflicts at bay and gives your parents the chance to state their wishes if they can’t for themselves. You’ll also feel less guilty or anxious when having to make decisions about their medical treatment if they don’t have their end-of-life wishes documented.

When to Have the End-of-Life Talk with Aging Parents

The quick response is right now. It’s best to discuss end-of-life wishes while your parents and you remain healthy, before anyone is sick and hospitalized, and before the emotion runs high and decisions have to be made. It’s much easier to introduce this subject during certain moments of conversation:

• There’s been a health scare within the family. A hospitalization that someone close to you went through, a diagnosis someone close to you received or a TV storyline about it
• Parents are doing estate or financial planning. If your parents are updating a will, meeting with a financial advisor or discussing their estate plan, end-of-life wishes are a natural discussion topic
• They’re turning a certain age. A 65th or 70th or 75th birthday often provides an impetus to start thinking about the future
• They’ve had a recent doctor’s visit. “How did the visit go?” leads very quickly to “Have you discussed what type of care you would want to receive in an end-of-life scenario?”
• There’s National Healthcare Decisions Day. April 16 is an annual awareness day that is a perfect opportunity to start this conversation with your aging parents

The worst time to have this discussion is during an acute medical crisis. Decisions made at the last minute in hospital waiting rooms aren’t typically the ones you’d like your family to make. If you’ve already spotted signs that your aging parent needs assistance at home, then the urgency for this conversation increases significantly.

How to Talk to Your Parents About End-of-Life Wishes Without Awkwardness

The difficult part is getting started. Once you’ve crossed that hurdle, however, your parents are more open to talking than you think they’ll be.

Talk about love, not logistics. Instead of immediately diving into questions about legal documents, try phrases such as:

• “I was thinking about how much I love you, and I want to know how to best take care of you like you would wish.”
• “Did you read anything about how most families never have this conversation? I don’t want us to be those kinds of families.”
• “I want to make sure that if something were to ever happen to you, I’d know exactly what you wanted. Not what I would want for you.”

Make it about both parties. Talk about your own wishes, too. Once it becomes a two-sided conversation rather than an interview, parents tend to feel more respected than managed.

Keep the first conversation short. You don’t have to cover everything all at once. The length of fifteen to twenty minutes is fine for the first conversation. The purpose here is to open the door, not tour the house.

Pick a time and place when your parent is comfortable. Home trumps restaurant. A calm, cozy, uninterrupted conversation at home will almost always be better than an outing, a family meal, or a telephone call. Talking face-to-face lets you see the subtleties of body language, which can help you react in warmer ways to any emotions you discover. If your parents live far away, then a video chat is a better substitute for a phone call for exactly the same reasons.

Bring something real. The Conversation Starter Guide from The Conversation Project is a free, friendly resource for just this purpose. Sharing a tangible document can remove tension, and give the talk some basic shape.

The End-of-Life Planning Checklist: What to Cover

When the subject is open, there will be several big topics you’ll want to cover during one or more long conversations. You don’t have to hit every topic in a single sitting.

What Kind of Medical Care Do They Want?

• If they were gravely ill, would they prefer aggressive medical intervention, palliative care, or something in between?
• What is their view on life-sustaining measures? What do they think about having a respirator, feeding tube, or receiving CPR?
• Would they choose home, hospital, or hospice care?
• What do they think about pain medication?

The Paperwork

Every family should have four specific documents:

1. Advance directive/Living will: A statement of what medical care the person would like if they are no longer able to convey preferences.
2. Healthcare proxy/Medical power of attorney: A document appointing someone to make medical decisions for a person.
3. Financial power of attorney: A document authorizing someone else to make financial decisions if the person becomes incapacitated.
4. Last Will and Testament: A document specifying distribution of personal possessions and assets.

The National Institute on Aging has a free advance care planning guide filled with worksheets and questions to help your family complete these documents.

Personal Last Requests

What they would like to say and leave for their loved ones after death is not covered by legal forms but might have profound meaning.

• Where do they want to go to spend their last days?
• Is there anyone they would like to meet or speak with?
• Do they have preferences on funeral/burial/cremation arrangements?
• Are there any religious/spiritual/cultural wishes they might have?
• Is there anything they want to say, such as in letters, on a tape, or for their grandchildren?

Financial Considerations

• Where are their financial statements, etc. saved?
• Who are their financial advisors, insurance agents, and estate attorney?
• Does the family need to know about any outstanding debts or obligations?
• What are their thoughts about their real estate or personal property?

How to Handle It When Parents Refuse to Talk About It

You should expect that your parents might react differently to the suggestion that you need to have this discussion. Some parents may want to change the subject. Some might say things like, “I don’t want to think about that right now” or “You’re being morbid.” Other parents might be genuinely hurt by the prospect that their children are considering how to handle their death.

If your parent doesn’t want to have the discussion, it’s okay to respect their boundaries, but keep it in mind and revisit it when you feel it’s time.

Back off temporarily but continue trying in a week or two. “I understand this is a difficult topic, and you don’t want to talk about it right now. I’m going to let it go for the moment, but it’s important to me that we have these discussions and maybe we can try again a couple weeks from now?”

Try using a third party as a prompt. “My friend’s parents recently lost both of their parents in a car accident, and it was really heartbreaking because they didn’t have a plan in place. It made me realize that maybe we need to discuss ours.” Sometimes a story about how another family handled the situation can prompt a conversation in a way that direct questions can’t.

Start with the easy stuff first. Rather than diving right into medical treatment decisions, begin with the most practical logistics. Where do you keep your important documents, such as your insurance policies? Who are your doctors? What health insurance do you have? These conversations feel more like house organization than end-of-life planning.

Normalize the conversation. “I just filled out my own advance directive, and it took me like twenty minutes to complete. Would you be interested in doing yours too?” When you start talking about end-of-life planning in front of your parents, start by sharing that you yourself are preparing for this conversation.

If you’ve ever struggled with your elderly parents resisting the help that you are trying to give, these conversations might sound like things you have heard or even said. The key here is patience and persistence, and the underlying message you convey needs to be that your motivation to have these conversations is love, not control.

Getting Siblings on the Same Page

Often you aren’t the only adult child of the parents who you want to have these conversations. If you have siblings, you’ll want to align yourself with your siblings and make sure everyone is on the same page before you and your parents have your discussions. Here are some things you should do with your siblings before and during these talks:

Start a conversation with your siblings. Make sure everyone has agreed to have this conversation, and decide who’s bringing up the topic with your parents and how you’re all going to communicate to your parents about these issues. A parent’s reaction is going to be much more severe when a family is caught off guard and their siblings have differing views.

Make sure one sibling is the primary contact, but make sure all siblings know what is happening. Ideally one sibling will be the primary contact when your parent makes legal or medical decisions, but everyone is informed and in agreement. This is likely the same system you have in place already if your family has already negotiated a caregiving plan to divide the work.

Take notes and share your notes with all siblings. If you and your siblings are on the same page, then it becomes less likely that your parents will get in the habit of telling you something different than they tell their other children. Take notes when you or your siblings are having conversations with your parents, and share them with everyone involved with care. This is especially helpful in a family with multiple children living in different parts of the country; a shared folder or a family group chat can work well for this.

Expect different reactions. Perhaps one sibling is ready to dive into planning, while another doesn’t want to speak of the subject at all. Maybe one of your brothers or sisters is adamant about what your parents “should” want. Recognize these differences without allowing them to throw the entire process out of whack.

What to Do After the Conversation

Starting the conversation can be the most challenging part of this process. However, this is not your final step.

Get it in writing. If your parents discuss their wishes with you verbally, record them in writing as soon as you can. It is better to have a simple, written list of your parent’s wishes, for them to go over and agree with, than to rely on your memory.

Make sure your parents have legal paperwork in place. Does your parents not have an advance directive and healthcare proxy? Help them put one in place. Most states offer free advance directives forms via your state’s department of health. Organizations like AARP also provide advance directive forms. And for more advanced needs, you can hire an elder law attorney.

Distribute copies of the directive to those who may need it. Be sure to have copies of the advance directive and healthcare proxy available to your parents’ primary care physician, your family physician, and any local hospital where your parent may be treated. Have a copy in your records as well.

Periodically, revisit the conversation. People’s wishes can change. A parent who wants full treatment five years ago, may not feel the same way today. Check in annually or bi-annually and also review your parent’s preferences following any significant health event.

Continue to maintain communication between these sessions. The families who navigate end-of-life conversations the smoothest are those who are in communication on a regular basis. When you’re already in the habit of having weekly check-ins, more challenging topics are not so scary. Hug Letters’s monthly family newspaper that is delivered directly to your parents will help maintain your connection. Especially if your family is separated by a large distance, Hug Letters is a wonderful service that ensures that you can stay informed about your parents, and that your family is connected during more trying times.

Frequently Asked Questions

What is an advance directive and why does my parent need one?

An advance directive is an official document which communicates a person’s care preferences in circumstances when they are unable to speak for themselves. This document, often composed of two parts, namely a living will that states the individual’s wishes for certain treatments, as well as the designation of a healthcare proxy, or person who can make healthcare decisions on their behalf, must be honored by the patient’s doctor. Advance directives are recognized in all fifty states, although the specifics differ. Source: National Institute on Aging

How do I start an end-of-life conversation if my parent gets upset?

Begin slowly, and express compassion. Rather than inquiring about mortality, ask about their values: “Which elements of daily living do you feel are most important?” “What if you were unable to make decisions for yourself, and were forced to pick someone who you would trust to make those decisions for you?” If your parents seem to have shut down the conversation, let them know something like, “I know this is an uncomfortable topic. I just want to be prepared to honor your wishes.” Take it slow, and move on to a later date and/or another point of departure, perhaps by referencing a news story, a friend’s experience, or a free planning document that you two could fill out together.

What documents should my aging parents have in place?

At minimum, your aging parent will want four documents: an advance directive, aka living will, that addresses their medical wishes; a healthcare proxy, aka medical power of attorney, that names their decision maker; a financial power of attorney that covers their money and property; and an up-to-date last will and testament. Additionally, your aging parent may want a POLST (Physician Orders for Life-Sustaining Treatment) form, which may be suitable for those who have a serious or chronic illness. POLST, which is a medical order and not just a directive, has more significance in an acute medical situation than an advance directive.

Can I have this conversation if my parent has dementia?

If your parent is in the early stages of dementia, it is still a good and important time to have this conversation. You still have the ability to talk to them about their values, broadly speaking, without having to talk about a specific event or illness, for example. If your parent has progressed to later stages where they cannot make legal decisions anymore, speak to your parent’s physician or a lawyer who is specialized in elder law to ask what options there are for documenting their end-of-life wishes.

It Is an Act of Love, Not a Checklist

Your conversation with your aging parents about their end-of-life wishes will not be the easiest conversation you will ever have with them. But it may be the most necessary one. Any family that has gone through a medical emergency without a plan will tell you that they wished they had done some of the planning sooner, and any family that has had that conversation will tell you that they became closer because of it. Even if that initial conversation was awkward, or even if it took three attempts to get to the end of it, any family will tell you it was worth it.

You are not robbing your parents of their right to be independent by having this conversation with them. By talking with them about their values, you will be safeguarding their autonomy. And by documenting their wishes, you will ensure that they speak to what they would like when they are no longer able to.

Begin where you can. Today. And remember: there is no right way to do this, and you don’t have to have it perfectly. But you just have to do it.