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

Start before anything is wrong, and ask your parents what they don't want as well as what they do. Then write the answers down and share them with their doctors and the whole family, so no one is left guessing, or fighting, at the bedside.

That is how Professor William Donaldson did it with his own parents, and he calls the result liberating. He has also seen what happens to families who never have the conversation, and what it costs them.

On this episode of the Digital Legacy Podcast, I spoke with William, who goes by Willy. An engineer by training, he took over his father's two companies at 26 when his father became very sick, and now teaches finance full-time at Christopher Newport University. His book, Estimated Time of Departure, is about the conversations he had with his parents about death. He calls it a love story.

“Here was an experience 100% of us are gonna share,” he told me, “and yet we don't talk about it.”

Why do parents avoid talking about end-of-life wishes?

William's parents were not avoiders on paper. They had a do-not-resuscitate order, an advance directive and a will, all signed with the attorneys. “We thought we were done,” he said.

Then he started asking how the end would actually go. His parents had done the legal side, but they “hadn't thought at all about the emotional” side, or the caregiving. “That's gonna be the much harder stuff to deal with,” he realized.

When he pressed, they dodged. “They'd say, well, what are you trying to kill us? And I said, well, if you don't start answering these questions, I just might do that.”

Doctors, hospice workers and death doulas all told him the same thing: everyone should talk about this, and almost no one does. William thinks part of it is generational. His parents grew up when “you didn't talk about these things.” His students, mostly 18 to 20, are far more open.

When is the right time to start the conversation?

Earlier than you think. William was in his forties and his parents were in their sixties when he started, and he counts that as luck. People wait too long, he said, until someone is in the ER, in an institution or in failing health, and “that's the worst time to start these discussions.”

Because nothing was wrong yet, his parents thought they could ignore it. That is exactly what made it the right time.

The book's title comes from his father, an aeronautical engineer and pilot. Before any flight, “a pilot has to file a flight plan and tell you when you're leaving and what the route's going to be.” His father planned every departure but this one.

If you need help breaking the ice, a game can do it. We wrote about one in Gamifying Death: How the Death Deck is Changing End-of-Life Conversations.

What questions should you ask your parents?

William keeps them simple and frank. “Where do you want to be when this occurs, and who do you want to have around you?” Then the harder follow-ups: can you afford it, and what are you willing to trade off? “OK, you want to stay in your home. Do you want strangers coming in and doing the caregiving? Are you OK with that?”

The question that unlocked his parents was the reverse one. They were proud, and they did not want to say “we want this, we want that.” So he asked what they didn't want. “Well, I don't want to be in a diaper. I don't want anybody wiping my you-know-what. I don't want anybody feeding me.” They went down the whole list. “OK,” he told them, “that informs what end of life has to look like, so let's start planning for that.”

They also decided how to use their money. “We don't want to spend any of the treasure that we've built up to maintain a life that's not worth living.”

What happens when nobody knows what Mom or Dad wanted?

Someone still has to decide. “Who's gonna make those decisions for you?” William asked. “Well, it's gonna be your sister who doesn't wanna say goodbye to mom today. It's gonna be your doctor. It's gonna be the caregiver. But if you had a piece of paper that said very clearly, do not want any of this, it changes everything.”

He has seen families torn apart by it. “The daughter who didn't really know anything flies in at the last minute and says, no, put the tubes in and do the operation.” Afterward, two sisters stop speaking “because of the way it all ended,” he said, “and don't get me started on the bill.”

Doctors get caught in the middle too. William described doctors who know that more treatment “isn't gonna make the patient's life any better. All it's gonna do is extend the duration.” Without clear instructions, the system defaults to doing more.

I often say we are living longer, and we are also dying longer. A nest egg built over a lifetime can be spent in the last few years of it. What Medicare, Medicaid and insurance will pay toward long-term and end-of-life care is complicated, so talk to a professional about your parents' situation. For what the care itself can cost, read What Long-Term Care Really Costs, and Why Most Families Are Not Ready.

Now the other ending. William's mother had a stroke. In the hospital, the doctor read off what could be done next, from speech therapy to physical therapy. She looked right at him. “She said, no, I'm done. I've had all the fun I can stand. I just want to go back to my apartment. I'm getting all of the medicines off. I'm just going to go into hospice and say goodbye.”

Because the family had already talked it through, nobody argued. “It was so calm and so human,” William said. If hospice still sounds like giving up, Dr. Andy Arwari explains why it isn't in Navigating End-of-Life Conversations: A Compassionate Guide with Dr. Andy Arwari.

William thinks what we fear most is losing control, and the conversations gave it back. “My parents were absolutely in control,” he said.

What should you write down, and who needs a copy?

Start with the legal and medical documents: a will, an advance directive and, if your parent wants one, a do-not-resuscitate order. As William pointed out, a DNR is a medical order and has to be signed by a doctor. Forms and signing rules vary by state.

He adds a personal document he calls Allow a Natural Death, or A&D. It isn't a legal form. He describes it as “kind of a personal constitution” that covers the biographical and emotional things he wants his family to think about with him.

Include your digital life. William would welcome a digital avatar that could introduce his parents to his grandchildren. His mother, he thinks, “would have said not only no, but hell no.” Either answer is fine. “I think you need to write what you want,” he said.

Even “it's not mine to decide” is worth writing down. After one of William's book talks, a man told him only the Lord could make his plan. William's answer: “Well, that's your belief. Write that down. Tell your family.” Right about then, the man's son tapped him on the shoulder and said, “Dad, we should talk.”

Then share it with everybody: your doctors, your other health care providers and your family, “so that they don't have to question what would mom want, what would dad want.” And keep it current. William's rule is “talk early, talk often, and write it down and change it.”

Near the end, William and his brother took their mother to dinner and asked if there was anything else they needed to talk about. “She was just like, nope, we've said it all, you have it all, it's all documented,” he said. Getting there “was so profoundly rewarding.”

Frequently asked questions

How do I start talking to my parents about end-of-life wishes?

Start while everyone is healthy, before there is a crisis. Ask where they would want to be at the end, who they would want around them, and what they don't want. William Donaldson found that last question easier for his parents to answer than “what do you want?”

What is the difference between a DNR and an advance directive?

A do-not-resuscitate order is a medical order, which is why a doctor has to sign it. An advance directive is a legal document that records your wishes for medical care and often names someone to make decisions for you. The rules and forms vary by state, so ask a doctor or an estate attorney.

What is an Allow a Natural Death (A&D) document?

In William Donaldson's use, it is a personal statement of your values and wishes for the end of life, written in your own words, alongside your legal and medical documents. Some hospitals also use “Allow Natural Death” as another name for a DNR order, so tell your doctor exactly what you mean.

Listen and take the next step

Listen to my full conversation with William Donaldson, How the Medical System Bankrupts Families in the Last 3 Years of Life, on the Digital Legacy Podcast. His book, Estimated Time of Departure, is available online, and you can find him on LinkedIn.

If you want to know what your family would need from you, and in what order, start here.

Live fully, die ready.

This article is educational and does not provide medical, legal or financial advice. Rules vary by state. Consult a doctor, an estate attorney or a financial professional about your situation.