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.
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
