"My father never got to tell us what he wanted, and we never really knew how to ask"

 

My father died in stages, the way most people do, and the four of us boys — me and my three brothers, our wives beside us — didn’t know what we were watching. 

He’d had a stroke and couldn’t speak or meaningfully move for the week or so before he died; we didn’t know what he was feeling. We didn’t know what to say, or whether to say anything at all, whether to hold his hand or give him space, whether the grimace on his face was pain or something we were misreading entirely.       

We didn’t know why he’d suddenly seemed so alert for a day, and we didn’t know what it meant when that passed. We were well-educated, reasonably worldly adults with decades of life experience between us, and we stood around that bed like children who’d wandered into a room where the grownups were speaking a language none of us had ever been taught.              

I’ve thought about that a lot over the years. Not with guilt, exactly, though some of that is in there too. Mostly I’ve thought about it as a kind of cultural failure; a thing our society stopped teaching somewhere along the way and never bothered to replace.   

For most of human history, people died at home, surrounded by family and neighbors who’d seen it before, who knew the signs, who understood the arc of it. Death was something a community witnessed together and held together.

Then we moved it into hospitals, handed it over to professionals, and quietly lost the knowledge that ordinary people once carried as a matter of course. Now we’re shocked, disoriented, and grief-stricken in ways that might be at least partly unnecessary, if only someone had thought to tell us what was coming and what it meant.

That’s why a piece published this month in the Washington Post was so meaningful to me. Written by Ashley Abramson, it’s about death doulas, a profession that barely existed twenty years ago and is now growing fast enough that the International End-of-Life Doula Association has trained nearly 6,500 doulas worldwide.

A death doula is a non-medical companion who provides emotional, spiritual, and practical support to people who are dying, and to the families around them. As Kristen Patterson, a death doula and end-of-life planner in Northern Virginia, puts it, a death doula is “a calm, compassionate presence who can be there for dying people and their loved ones in their final moments.”

They can read aloud, play music, advocate with medical providers, help navigate paperwork and final arrangements, and simply stay present in ways that hospice nurses — stretched thin and focused on clinical care — often can’t. People don’t always realize that hospice care isn’t 24/7, Patterson notes; it certainly wasn’t in our case (Dad died at home). A death doula can be there as much as the family needs.

But what I found most valuable in Abramson’s piece wasn’t the description of the role itself. It was the specific things that death doulas, from their long experience at bedsides, have learned about the dying process that most families simply don’t know going in. This is the kind of knowledge that can transform a terrifying experience into something that still holds space for love and even peace.

The first thing the doulas want you to know is that dying can be peaceful. Diane Button, a death doula in Northern California and the author of What Matters Most: Lessons the Dying Teach Us About Living, puts it simply: “Just like the body knows how to be born, it knows how to die.”

For people who’ve been living for months or years in bodies racked by illness, the transition can actually come as a relief. Jill Schock, founder of Death Doula LA, told the Post that many people are relaxed at the end, because dying feels better than continuing to live in a body that’s been suffering. That’s not what most of us picture when we imagine death, but it’s what people who sit with the dying actually see. And Button adds that the most common regrets she witnesses aren’t about things left undone — vacations not taken, money not earned — but about things left unsaid. If you can get to a place of peace with your relationships before that time comes, the dying itself tends to go more gently.

The second thing the doulas want you to understand is that the dying person can still participate in shaping that experience. Even in a hospital room, you can fill the space with what matters: favorite music, beloved objects, the people and even the pets you love.

Erica Reid Gerdes, founder of Waxwing Journeys in Chicago, describes a client whose husband found real comfort in being able to play music from his wife’s favorite musical and read her favorite books to her in those final days. She was unresponsive by then, but as Reid Gerdes says, “We knew she could still hear.” That’s not a small thing. That’s everything.

Third: death doesn’t need to be painful. Many of us carry images of painful deaths we witnessed in earlier generations, but modern hospice care is specifically designed to manage symptoms including pain.

Part of a doula’s job is to make sure the dying person has adequate medication and isn’t suffering unnecessarily. And medication does something else, too — it can calm what’s called terminal agitation, something my family saw with Dad and had absolutely no framework for understanding. When someone is actively dying, the shutting down of organs can affect brain function in ways that cause the person to pick at their clothing, claw at their bedsheets, or seem frightened and restless.

Seeing that in someone you love is alarming, even traumatic, if nobody has told you it’s a known and manageable part of the process. It has a name. It can be treated. You’re not watching your father suffer some unique and inexplicable torment: you’re watching something that happens, that doulas and hospice nurses have seen many times, and that medication can ease.    

Fourth, and this one is critically important: it’s normal, even expected, for a dying person to stop eating and drinking near the end. The body simply needs less energy. Swallowing becomes too taxing. The Post article makes the point explicitly — you don’t need to urge someone who’s actively dying to eat or drink. It doesn’t deprive them the way it would deprive a healthy person. Families often feel guilty about this, or frightened by it, and push food and water when the body is trying to do what it knows to do. A doula can gently explain that letting go of that particular effort is itself an act of love.

And fifth — this is the one I keep returning to when I think about those last days with my father — there’s a phenomenon called terminal lucidity, or an end-of-life rally. In the days just before death, many dying people experience a sudden surge of energy and clarity. After days of not talking much or eating, they perk up. They seem like themselves again. Families often mistake this for improvement, for a turn in the right direction, and the hope it kindles makes what follows all the more devastating. What doulas know, from having witnessed it over and over, is that this rally is often the body’s final gathering before it lets go. It isn’t a sign of recovery. It can be a gift — a last real conversation, a last moment of connection — if you know how to receive it as such rather than as cause for false hope.

I wish someone had told us all of this before we walked into that room. I wish someone had sat us down and said: here’s what’s happening, here’s what to watch for, here’s what it means, here’s how you can be present for him rather than just frightened beside him.

That’s what a death doula does. That’s the knowledge that used to live inside communities and families and has largely been lost, and that a growing number of remarkable people are now working to restore.

INELDA and the National End-of-Life Doula Alliance both maintain directories where you can find certified doulas in your area. Death doulas are generally not covered by insurance, which is a policy failure worth fighting about separately, but the field is having conversations about Medicare reimbursement and pro bono work for those who can’t pay. If the financial barrier is real for you, ask; many doulas offer sliding scales or even volunteer their time.     

But even if you’re nowhere near this moment in your own life, I’d urge you to read Abramson’s piece in the Post, and to have the conversation with the people you love before it becomes urgent. Talk about what you’d want. Ask what they’d want. Write it down. The conversation itself is an act of love, and it costs nothing except the willingness to be honest about the one thing none of us can avoid.

My father never got to tell us what he wanted, and we never really knew how to ask. That’s a quiet regret I carry. You don’t have to carry the same one.

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If this piece meant something to you, please share it with someone who might need it: a sibling, a grown child, a friend whose parent is aging. And if you’ve had experience with a death doula, or wish you had, I’d love to hear your story in the comments. -Thom Hartmann