My father's father had Parkinson's disease, and when it was no longer safe for him at home, he went to a VA hospital a few hours away to live out his days. Months after my grandmother died, my dad got a call from the facility: your dad is no longer thriving. Would you like us to put in a feeding tube? My father had never had the conversation with him about what he would want. So he stood there on the phone, panic-stricken. Not a son, not an adult, just a person with no idea what the other person would want.
In this episode I talk about the conversation you keep meaning to have and keep not having: the one with your mom, your dad, or the person who raised you about what they would want at the end of their life. If your stomach just dropped a little, stay with me. It's gentler than you think.
This is not a failure of love
What happened to my father was not a failure of love. He loved his father, and he could not bear to guess wrong. He was being asked to make the biggest decision, maybe the last decision, with no instruction from his father. He wasn't carrying out his father's wishes. He was deciding in panic, three hours away.
It doesn't have to go that way. The difference between that phone call and a calmer one comes down to a conversation that happened earlier, on some ordinary day when nobody was sick and nobody was dying.
Why we avoid the end-of-life conversation
The first reason is the oldest one: a superstition that if we talk about death, we invite it in. There's a saying among death doulas that talking about death doesn't bring death, just like talking about sex doesn't bring a baby. Talking about death does not cause death, and staying silent does not prevent it. The only thing silence buys you is a worse version of the same ending.
The second reason is that we don't want to upset them. Here's what I've learned: most older people are thinking about this far more than their kids realize. They've decided not to burden you, the same way you've decided not to burden them. So everybody is being polite, and everybody is alone with it.
The third reason is the sneakiest. Time. You'll do it at the holidays, or when things settle down. I understand. I'm an adult child of parents who are still alive. But the moment when it feels natural and easy is not coming on its own. At some point you have to be the one who decides it's time, even if it feels awkward.
It's not really about death
I think this conversation feels so heavy because we're holding it wrong. We think it's about machines and paperwork and the end. But the conversation is really about her: who she is, what a good day looks like to her, and what she could not stand losing. You're not asking your mom to plan her death. You're asking her about her life, and what she wants protected when she can't speak for herself. Framed that way, you stop being the person bringing up something morbid and become the person who cared enough to ask.
I've done this with my own family, and none of them are sad I forced it into the light. Not one of the families I've helped with advance planning has told me they wish they hadn't asked. What they say is, I'm so glad I knew, and I'm so glad I didn't have to guess. At the end of life, the dying person has less and less control. When we know what's important to them, we can help them decide, and know we're making the right call when the decision falls to us.
How to start: one borrowed story and one question
Let me take the pressure off. You do not have to do this in one sitting. Please don't sit everyone down in the dining room with a notebook and try to get it all done in one heavy marathon. Even as a death doula, I don't do that with my clients. This is a door you open, and then you keep walking back through it a little at a time, over weeks or months. The goal the first time is tiny: crack the door open.
The easiest way in is to not start with them at all. Borrow a story. You can borrow my dad's story, or a movie you both watched where the family fell apart over what grandpa would have wanted. Then say something simple: "Watching that made me realize I have no idea what you'd want if something like that happened to you. And I'd really like to know. Not because anything's wrong, just because I'd rather hear it from you than have to guess someday."
Here's the pro tip people forget. After you ask, stop talking. Don't fill the silence or soften it with a joke, even though every cell in your body is screaming to. Some parents will open right up because they've been waiting for permission. Others will wave you off. If that's what you get, don't push. Say, "Totally fair. I just wanted you to know I'm open to it whenever you are." The door is open now in a way it wasn't this morning, and you can come back to it.
What to listen for
You're not a doctor or a lawyer, and this isn't the moment for a clinical checklist. What you're listening for is what matters to them: the values underneath the medical decisions. What is a good life to them? At what point would life no longer feel like theirs? Some people want every possible day, no matter what shape they're in, and that's their right. Others could not bear living hooked up to machines with no way back. There's no correct answer. There's only the answer that lives in that person, and your job is to find out what it is.
You can ask who they'd want speaking for them if they couldn't speak for themselves, where they'd prefer to be if they had the choice, and what they'd want the people around them to know. Those aren't creepy questions. They're some of the most intimate and loving questions you'll ever ask another human being.
Advance directives come after the conversation
Here in California, once you know what they want, there are real ways to write it down so it counts: advance directives. There are people whose job it is to help with that part. A death doula can help, and estate attorneys often do. The legal process needs a whole episode of its own. But the talking comes first. The paperwork documents and protects what they told you, and it doesn't protect anything if the conversation never happened.
The hardest part is listening without arguing
Your parent might say something you don't agree with. They might tell you they wouldn't want a treatment that you, in your heart, would beg them to take. Everything in you will want to argue: don't talk like that, of course we'd fight, we'd do everything. I'm asking you not to. The second you argue, you've taught them it isn't safe to be honest with you, and the door closes again, maybe for good.
Your job in that moment is to receive it. You can say, "That's hard for me to hear, and I want you to know I heard you." You're allowed to be sad about it. You're just not allowed to override it, because it's about what they want for themselves. You take the burden of guessing off your own shoulders, and you hand the authorship of their ending back to them, where it belongs.
I've seen this go very differently for families I've worked with who had the talk. Their steadiness didn't come from being brave in the moment. It came from a conversation on some ordinary Tuesday, months or years before, probably awkward, maybe over coffee. So here's your assignment this week: not the whole talk, just the door. Find one small way to crack it open with someone you love, and see what happens.
In this episode
- 00:00 Introduction
- 00:58 The story: my grandfather's final days
- 03:29 Why we avoid the conversation
- 06:02 Reframing: it's not about death
- 08:22 How to start the conversation
- 11:43 What to listen for
- 13:24 Advance directives
- 13:58 The hardest part: listening
- 15:31 Bringing it home
- 16:29 Your assignment
Caring for someone near the end? You don't have to figure out the last days alone. Book a Guided Care Planning Call and we'll talk through what's ahead.
Feeling the pull to do this work? Pay attention to that. I teach it at Compass Doula Academy.
Listen: Spotify · Apple Podcasts · 17 minutes
If there's anything else you're dying to ask, let me know: christy@christybraun.com
