Knocking on Heaven's Door: The Path to a Better Way of Death (39 page)

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-