Knocking on Heaven's Door: The Path to a Better Way of Death (30 page)

father napped, she asked me for the first time to help her get

the pacemaker turned off. I was witnessing a double drowning,

but it was still not easy saying yes.

After tea she phoned the cardiologist, Dr. Rogan. “I’ve got to

see you while my daughter is here,” she said. “It’s urgent.” She

had a touching faith that my brainy assertiveness could succeed

where hers had failed. But Dr. Rogan was leaving that day on

vacation. He did not have time to meet. She wrung from him a

promise to call us back.

At five, the phone rang. My mother asked Dr. Rogan to wait

until I could get to the phone in the guest bedroom, but he said

he was in a rush. I ran upstairs knowing that I had perhaps five

minutes to talk to a man I’d never met about doing whatever I

could to hasten my father’s death.

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I picked up the receiver and broke in, my voice harsh and

tight. I did not thank him for taking our call, or do any of the

things Dale Carnegie suggested I do to win friends and influ-

ence people. Instead I blurted out, “I’ll cut to the chase.” Even

if we got a court order, I said, I sensed that he wanted no part

in what we had in mind. Dr. Rogan paused and said, “That’s

right.” He’d feel okay about not replacing the pacemaker’s bat-

tery when it ran down, he said. But turning it off, he said, would

be “too active.” Later he would tell me that it would have been

“like putting a pillow over your father’s head.”

I put down the phone, and my mother and I walked down-

stairs, sat on the sofa, held each other, and shook.

My mother handed me a piece of paper the next morning

with the number of a hairdresser in the mall below Main Street

who cut the hair of the professor in her support group. I took

it. Late that afternoon, sporting a nice, new, chin-length bob, I

sat with my mother in the small, brightly lit waiting room of Dr.

Fales, their primary care doctor. I’d pulled out my mother’s well-

organized file holding their “durable power of attorney for health

care” documents, and discovered that my father had authorized

my mother and me to make his medical decisions when, in the

sole opinion of Dr. Fales, he could no longer make his own.

On Dr. Fales’s bulletin board was an op-ed piece from the

Hartford Courant
by a fellow internist, fulminating about the

low fees Medicare pays for primary care. Dr. Fales ushered us

into his office. He had opposed the pacemaker from day one.

But turning it off, he said in the fifteen minutes allotted us, was

something else again.

“Don’t do anything that you would later regret,” he said. With-

out the device, my father might get dizzy or faint, fall, break a

hip, and end up in the hospital or a nursing home. “Keep him

out of the hospital at all costs,” he said. “Try not to call 911.” He

looked at my mother, and his eyes filled with tears. “Why don’t

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you just let the battery run out?” he said. “It probably only lasts

five years, and it’s getting close.”

Our time was up, and he came around from his desk and

gave my mother a hug. When we got home, my mother went

into the basement and found a file. The battery of the pace-

maker, implanted when my father was seventy-nine, was said to

have a ten-year life. We had about five years to go.

When my mother was upset, she meditated or cleaned house.

When I was upset, I Googled. That afternoon, I found the 800

number for Compassion and Choices, a successor to the Hem-

lock Society, which had first publicly advanced the notion that

the fatally ill had a right to die without medical interference

and even the right to control the timing of their deaths. Judith

Schwarz, a registered nurse in Manhattan with a PhD in nurs-

ing, called me back. The law was clear, she said. My father had

the right to ask for the withdrawal of
any
medical treatment,

even a tiny embedded device like a pacemaker. My mother and

I, as his designated health care proxies, had the right to insist

his wishes be followed when he could no longer express them.

The cardiologist had an ethical obligation to either deactivate

the device or, if he was morally opposed, to find us someone

who would.

But having legal and moral rights in an era of advanced medi-

cal technology, I learned, was not the same as having practical

power. It’s easy to say yes to a complex device and devilishly dif-

ficult to withdraw that yes. We were at the mercy of a strange

new algorithm: those who knew and loved my father best—Dr.

Fales, my mother, and I—wanted to let him die naturally but

had no power. Those who knew my father least and least under-

stood his suffering were eager to prolong his life and had the

know-how and the power to do so.

And so Judith Schwarz recommended I first do everything

Dr. Rogan asked for, dotting every i and crossing every t
.
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find a geriatric psychiatrist to declare my father incapable of

making his own medical decisions. I should ask Dr. Rogan again

to deactivate the device. If he refused, I should insist he find us

someone who would. At the same time, I should search inde-

pendently for a more sympathetic cardiologist. If necessary, we

should go to court.

I was not going to get this done in a week.

My every word must be carefully parsed. Following the dicta

of St. Thomas Aquinas’s Law of Double Effect and centuries

of criminal law, I could not say I wanted to hasten my father’s

death. That could be construed as intent to commit manslaugh-

ter. Instead I had to say that my mother and I wanted to “end all

mechanical interference with my father’s underlying condition.”

I could not say that we wanted what was best for him. We had

to say that “based on our intimate knowledge of his preferences,

we were acting exactly as he would if he could speak for him-

self.” We could not say we believed there were fates worse than

death. The Supreme Court had affirmed, in the Nancy Cruzan

case, that states had an absolute and legitimate interest in the

preservation of life. We could not say that my mother was being

crushed by caregiving. My mother’s suffering had no moral or

legal standing. My father, not our family, was the patient.

I should not be rude or threaten a lawsuit. When family

members become agitated or disruptive, hospital bioethicists

like Katrina Bramstedt may decide that the surrogate lacks

“decision-making capacity” and the medical team may simply

ignore them or go to court and ask to have the troublemaker

removed from the job. If that happened, my father’s medical

proxy wouldn’t be worth the paper it was written on.

In a case Bramstedt reported in 2003 in the online
Inter-

nal Medicine Journal,
she described a medical guardian who

“ranted” and became “agitated and boisterous” in demanding

that her relative be allowed to die. She threatened to bring in

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lawyers, and after her relative developed a hospital-based infec-

tion, tried to “fire” the intensive unit team, including Bramstedt,

the bioethicist. The patient in question, a sixty-nine-year-old

diabetic woman, had been in intensive care for three weeks, on

dialysis and on a respirator, after suffering multiple strokes and

septic shock (an often fatal bloodstream infection) in the after-

math of her second quadruple bypass surgery. In the ICU, she

had picked up another infection from a contaminated line. The

woman was apparently too stroke-damaged to communicate

and was also suffering from congestive heart failure, a slowly

and surely fatal condition.

The patient had done everything my parents had been told to

do. She’d signed a standard living will asking for the discontinu-

ance of life support if she were comatose or expected to die within

six months, In the opinion of the medical team, she was neither.

She’d appointed three relatives to act as her medical surrogates

when she could not speak for herself. But Bramstedt questioned

whether the hostile relative had “decision-making capacity.” The

request for the removal of life support had been “made in tan-

dem with loud and aggressive behavior,” Bramstedt wrote, which

“could be a signal that projection is occurring, the emotional fer-

vor being a possible mechanism of expressing the surrogate’s own

values and preferences,” rather than the patient’s.

The emotional fervor and aggression of the doctors and the

possibility that they were expressing their own values and pref-

erences were not discussed. The doctors kept going, and the

primary family member withdrew from her role as medical sur-

rogate and said that from then on, she would be a “bystander

and a visitor.” The second and third relatives deferred to the

medical team.

After three more weeks of what Bramstedt called “aggressive

treatment” in intensive care, the dying woman was stabilized

enough to be sent to a nursing home. Four days later she was

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brought back to the hospital, feverish, having trouble breath-

ing, and overwhelmed by a second bloodstream infection. This

time the medical team did not put her back on life support.

She died within hours, according to the hospital’s rules, when

the medical team decided it was time for her to die, and not a

moment before. She had spent most of the final six weeks of

her life in intensive care at a cost of hundreds of thousands of

dollars—some of it probably paid by Medicare while the rest

was absorbed by the hospital and passed on to other patients,

indirectly upping health insurance rates—and an uncountable

cost in human suffering.

She spent her last weeks, as Sherwin Nuland put it in
How

We Die,
among:

beeping and squealing monitors, the hissings of respirators

and pistoned mattresses, the flashing multicolored electronic

signals—the whole technological panoply [that] is back-

ground for the tactics by which we are deprived of the tran-

quility we have every right to hope for, and separated from

those few who would not let us die alone.

I wanted to spare my father this.

I didn’t want him to die because I thought he deserved

“death with dignity.” I didn’t think his dignity was the issue. I

didn’t want him to die because I judged his “quality of life” to

be defective, like a misshapen mail-order sweater that slipped

through quality control. I did not think, in the words of the Aus-

tralian philosopher Peter Singer, that some human lives were

“worthy” and others not, and that my father’s life was “unworthy”

because he was badly damaged. My father was disabled in the

eyes of the world before I was born, and I’d felt and expressed

more love for him in his helpless dotage than I ever had in his

intimidating prime.

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I didn’t want him to die because my mother and I had dis-

passionately weighed “the burdens and benefits of continued

treatment” as if his life and death were competing brands of

refrigerator. We were driven half mad by love and desperation. I

did not want him to die in order to enforce his constitutionally

protected right to privacy and autonomy. I did not want him to

die because I thought he was useless or because I was ageist.

I wanted our family to be held in the loving arms of a larger

human community. I wanted doctors to help us. I wanted him

to die because I loved him. I wanted to stop our family’s suffer-

ing. And to do so, Judith Schwarz told me, I would have to speak

in a foreign tongue and not as a daughter in grief.

We hadn’t created this mess. My father’s drawn-out dying

and my mother’s suffering were the consequence of our cul-

ture’s idolatrous, one-sided worship of Yankee ingenuity and the

can-do spirit. As far as I was concerned, it violated the way of

the universe and it was a moral crime. Why were we the ones

being judged?

I tried to get my father admitted to a hospice program and

learned from a kind nurse on the phone at Middlesex Hospital

that my father had “the dwindles”: he was sick enough never

to get better but not sick enough yet to qualify for Medicare’s

hospice benefit. She asked if he had an official orange plastic

do-not-resuscitate (DNR) bracelet issued by the state of Con-

necticut. Without it, she said, emergency medical technicians

would not honor his paper DNR.

I made another note on my legal pad and again felt like my