Read Knocking on Heaven's Door: The Path to a Better Way of Death Online
Authors: Katy Butler
Tags: #Non-Fiction
to a wooden Buddha from Thailand that my mother had given
me long ago. I would set up photographs of my parents, one of
her looking glamorous at Ben Carton’s wedding, and another of
her raking leaves in her beloved garden while my grinning father
happily wielded a rented leaf blower. I would bring beauty and
ceremony to their memories in ways I had not known how to do
when they lay dying. I would pin to my bulletin board a photo-
graph of my mother and me holding each other in bed, remember
her softly calling me “Sweetie,” and loosen my grip on the story
I’d long told, that she had never loved me. I would cry, no longer
afraid to love her and miss her, no longer afraid to walk toward
her, knowing that my tears and sadness were the beautiful flip
side of the bright coin of love, human attachment, and accep-
tance of the imperfect. I would stay close to my eighty-year-old
neighbor after he had a minor stroke, and stand prepared to help
him and his wife further when the time came. I would no longer
put all my life’s coins in the basket of work and allow my fears to
hold me back from loving. I would cherish Brian. I would work
the glass splinter out of my heart. I would remain myself.
In time the things I brought home from Pine Street and
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fetishized with my longings—her more-than-a-lifetime supply of
pink cotton nightgowns, a hand-embroidered purple sash, even
her leftover hair gel and CVS cold cream—would become noth-
ing more than things. I would emerge from my time in the half-
light and leave behind the liminal world between life and death,
where I had dwelt so long with my parents. I would stop trying, like
Orpheus with his lyre, to lead my mother’s shade out of the under-
world, to sing her up from the depths into the light. I would die as
a dutiful daughter and be reborn as some sort of grown-up whom
I could not yet define. On Saturday mornings I would steam half-
and-half and make Brian coffee and bring it up to him, along with a
cup of green tea for me and the
New York Times,
and we would lie for hours together, intimate, uxorious. I would walk on my mountain in the spring, and laugh with my friends, and become happier
and more grateful for my remaining life than I had ever been.
I would find among my parents’ things a photograph taken by Toni
not long after she first came to work for us. In it, my arms are
flung protectively around my parents’ shoulders, my hair is shiny
and brown, and I am grinning broadly, while my mother looks away
from the camera exhausted, and my father wears his chronic, post-
stroke mask of surprised confusion. Gray-haired now, and nearly
ten years older, I would whisper, “Poor Jeff,” shaking my head in
sorrow over his final years of unnecessary suffering. I would regret
many things I’d done and left undone, as do most of the dutiful
daughters and sons I know, but I would never feel guilty for having
tried to turn off his pacemaker or for beating back my mother’s doc-
tors, with greater success, when they seemed bent on stretching
out the stub end of her life. I would understand that things that
look heartless to outsiders must sometimes be done out of love.
All of that was to come.
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Enso by Valerie Butler, September 2009.
Left with a note: “For my memorial service.”
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aFterWord
The Path to a
Better Way of Death
By working creatively, and in ways yet unthought
of, the lobby of the dying and the gravely ill
could become a healing force in society.
—Ivan Illich,
Medical Nemesis
On Father’s Day 2010, two years after my father’s death and
nearly a year after my mother’s, Brian and I had friends
over for brunch beneath our backyard fig tree. It was a sunny
green Sunday in late June. That day the
New York Times Mag-
azine
published the story I’d written about my father and his
pacemaker, and I was nervous that my mother and I would
come across to readers as heartless.
During brunch, my e-mail in-box filled up with messages.
When I turned on my computer around noon, “What Broke My
Father’s Heart: How a Pacemaker Wrecked Our Family’s Life”
was at the top of the
Times
’s most-e-mailed list. By the time
the weekend was over, more than 1,700 people had responded,
either by e-mailing me directly or by posting comments on the
Times
’s Web site. The messages—from doctors, nurses, elderly
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258
katy butler
people, and baby boomers with aging parents—came from across
the United States and from Australia, India, Ireland, Italy, Saudi
Arabia, and the Netherlands. The sheer volume made clear how
deep uneasiness runs over medicine’s current default response
to death. A cardiologist in Italy summed up the tone of many:
“What happened to your parents was horrible, and your mother
did the right thing.” I felt as if I were listening in on the first
reveal of a vast, previously unvoiced public conversation.
“I have never been a big reader & certainly not the
New York
Times,
” e-mailed a registered nurse from Minnesota. “I am feel-
ing a little self conscious about writing to you.” Her passion was
working with people over eighty, she said, and she had watched
“the suffering, lack of dignity & overall poor quality of life they
experience. Every day at some point someone says to me, ‘I just
want to die. I have lived my life, it’s enough.’”
One family, she said, had recently notified her agency that
they’d agreed to a pacemaker for their elderly father with late-
stage dementia after doctors told them it would improve his mem-
ory and quality of life. “I felt like dying inside,” the nurse went on:
I could not tell them what I really think, since the procedure
was done & they were misled. . . . It is so frustrating for me
how some physicians are not ok with death & dying & are
usually too afraid to even discuss this natural process. Instead
they want to save everyone’s lives & not provide choice.
A woman from Malaysia said my parents would not have suf-
fered so badly if my brothers and I had helped more. Some doc-
tors felt I’d unfairly painted them as money-driven and said that
fear of litigation, in the face of insistence and denial by families,
drove much overtreatment. Other doctors, however, were trou-
bled by the drift of their profession. “I am often disturbed by
the unnecessary interventions I see being performed all around
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me,” said a Texas surgeon on the
Times
’s Web site. “These doc-
tors are not bad people, they are simply used to ‘knee-jerk’ fixes
for piecemeal problems, rather than a clear discussion of what
the ultimate goals of treatment really are.” A Philadelphia doc-
tor added:
Both my parents, and dozens of patients who I attended to,
have suffered through this maze as well. I am a physician and
a son who struggled, without much guidance twenty years ago
to know when to gain acceptance of what is really an inevi-
table, natural part of our human existence. Thank you for the
tears, water clarifies.
A woman described the unforeseen consequences of a hip-
replacement surgery given a seventy-nine-year-old relative who
was in the early stages of dementia. “When she never recovered
from the addle-minded state immediately following anesthesia,
we were told, ‘Oh yes, some patients never really get their cog-
nitive abilities back.’ THANKS FOR TELLING US. So much
for an informed decision!”
Another had tried to decline a pacemaker for a demented
mother living in nursing home. “The surgeon called me and said
he was putting the case to the hospital ethics committee and I
would have to deal with them,” she wrote me:
He was quite rude, indignant, guilt provoking and you
know the rest. I reluctantly folded and let the doctor pro-
ceed. Yesterday was my mother’s eighty-ninth birthday. She
does not know me. She does not dress herself. She wears
diapers. Her hair is falling out, her face is mottled with hor-
rible looking spots, her ankles are swollen and she weighs
109 pounds at 5 feet 7 inches. Why did I ever allow that
pacemaker to be implanted?”
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katy butler
*
*
*
A month later, my phone rang. It was a woman whom I didn’t
know, a yoga therapist named Bella McCloud, calling from
central California. For two years, she’d been the full-time
caregiver for her demented father, first in the home she shared
with her husband and their blended family of four children,
and then, when the stress on everyone grew too much, in a
unit in a duplex she owned nearby. Her father began wak-
ing multiple times at night, and so did she, as he paced the
floors looking for the bathroom and sometimes, in his con-
fusion, peed on the kitchen floor. Exhausted, she knew that
her health and stamina would soon give out and that the only
alternative would be to put him in a skilled nursing facility,
where he would probably be sedated to control his wandering,
or even restrained. A year earlier, she’d asked her father’s car-
diologist about turning off her Dad’s pacemaker, but had got-
ten a mystifying, paradoxical answer that added up to a no: on
the one hand, the device
could not be
deactivated because her
father might die immediately without it; on the other hand,
it
didn’t need to be
deactivated, because it wouldn’t keep him
alive when he was ready to die.
Then she read my article online. She called her father’s pri-
mary care doctor, and the two women met at the local emer-
gency room to arrange to have him admitted to the hospital.
After his doctor said, “We are going to turn off the pacemaker,”
hospital staff questioned her orders for the first time in her
career. The case was referred to the hospital bioethics commit-
tee. After extensive interviews with Bella, the doctor, and oth-
ers, the committee ruled that deactivating the pacemaker would
be “kind and compassionate.”
Bella, who is working on a memoir about her experience,
had a conversation with her father, who had been talking
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more and more frequently about people he loved who were
long dead. It went something like this:
Do you miss your (late) Mom and Dad?
Yes.
Do you miss your (late) wife?
Yes.
Would you like to be with them?
Yes.
Do you know how to get there?
No.
Would you like me to help you?
Yes.
Bella, who was her father’s legally appointed medical deci-
sion-maker, took him back to her duplex. A team from the device
manufacturer came out and, after some hesitation, deactivated
the device. Bella and her daughter pushed two beds together
in the living room, in front of a window overlooking the ocean,
and stayed with her father as he grew weaker, sleeping with
him throughout the night, their hands entwined with his, heads
resting together. He died peacefully, one week and one hour
after the pacemaker was disabled, in her home, in her arms,
surrounded with love. Thanks to his daughter’s extraordinary
efforts, medical overdoing was undone, and he died the Good
Death that our ancestors so prized—in the bosom of family, at
home, and in a state of acceptance. It was an expression of a
new Art of Dying for a biotechnical time: one requiring discern-