Knocking on Heaven's Door: The Path to a Better Way of Death (25 page)

like Bramstedt created a semblance of order based on the phil-

osophical and legal traditions of the West. She had read St.

Augustine’s teachings forbidding suicide and euthanasia and St.

Thomas Aquinas’s hairsplitting formulation of the principle of

double effect,
which allows a doctor to give a dying person morphine to relieve pain as long as the known side effect—hastened

death—is not the motivating factor. She knew that Pope Pius XII

had declared in 1957 that good Catholics did not have to pro-

long their lives using
extraordinary means,
like respirators. She had read the 1976 decision by the New Jersey Supreme Court,

which quoted Aquinas and Pius XII when it permitted the devout

Catholic parents of Karen Ann Quinlan to order the removal of

the respirator from their daughter, who’d been in a persistent veg-

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etative state since collapsing into unconsciousness at a party a

year earlier, after consuming alcohol and valium. Bramstedt had

studied the pioneering 1976 California statute that first validated

the living will, inspired by the Quinlan case and passed the same

year, over the opposition of the Catholic Church, the American

Medical Association, and the California ProLife Council.

She knew that a watershed 1990 U.S. Supreme Court deci-

sion,
Cruzan v. State of Missouri,
had further expanded—within

limits—a patient’s right to refuse medical treatment. Nancy

Cruzan, a young Missouri woman who worked in a cheese fac-

tory, had been resuscitated by paramedics who found her face

down in a ditch, not breathing, after a night out at a bar and a

one-vehicle car crash on the way home. By the time the U.S.

Supreme Court heard her case, Cruzan had spent seven years

in a state nursing home in what one Supreme Court justice

called “a twilight zone of suspended animation” and a Missouri

appeals court justice called “a living hell.” Her parents (like the

Quinlans, devout Catholics) sought to remove the feeding tube

that kept her from dying, over the objections of the state of Mis-

souri, which was then embroiled in a fierce political war over

abortion. The Supreme Court affirmed that patients had the

right to refuse any medical treatment, and that a feeding tube

was, indeed, a medical treatment. But it also declared that the

State of Missouri had an absolute and legitimate interest in the

“preservation of life,” and that Cruzan’s parents had to prove to

the state’s satisfaction that removing the tube was an expression

of their daughter’s wishes and not their own.

It was Bramstedt’s job, in a secular, religiously diverse cul-

ture with no consensus on these issues, or even a common lan-

guage, to thread the needle among conflicting sets of values: the

patient’s legal right to medical autonomy; the state’s interest in

preserving life; the religious values of the family; the hospital’s

interest in avoiding a lawsuit; and the doctor’s Hippocratic obli-

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gations to act out of “beneficence”—usually defined as doing

more, not less—and not to assist in suicide or mercy killing. It

was she who reassured families and doctors that it was morally

and legally okay to deploy treatments that gave comfort while

withholding treatments that prolonged the death agony.

Despite more than twenty years of complaints by families

over the brutal, unsanctified nature of death in the ICU, con-

flicts there remained the bread and butter of Bramstedt’s ethics

consults. But she had recently recognized a subtler new prob-

lem, one that many of her professional colleagues overlooked.

Before becoming a bioethicist, Bramstedt had been a qual-

ity engineer for Guidant, then the third-largest U.S. maker of

pacemakers and implantable cardiac defibrillators. (Defibrilla-

tors are advanced cardiac devices, more sophisticated than a

pacemaker; they reboot the heart with a powerful shock when

it races uncontrollably or falls into quivering arrhythmias.) The

pacemaker and the defibrillator, Bramstedt told me, were creat-

ing ethical problems at the end of life, years after they were first

put in. I took a breath.

“These devices are seen as simple and low-tech,” she said.

“You don’t need to crack the chest. You toss them in and you go.

But because cardiologists are so much into life saving, they don’t

think about the flip side of the coin. These devices are life-sup-

port technologies, which means the time will come when they

need to be turned off.”

Defibrillators, she went on, sometimes shocked patients

unnecessarily, and when they did, patients felt as if they’d been

kicked in the chest by a horse. They could repeatedly shock

people during their death agonies. Pacemakers, Bramstedt said,

were more morally ambiguous. They might prolong life, but

they didn’t cause pain the way defibrillators or respirators did,

and they often improved what she called “quality of life.”

I took a breath. My father was not in a state of suspended

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animation. He could still eat breakfast. But he’d spent a whole

weekend brushing his teeth. He could barely write me a letter.

He dirtied his pants and felt ashamed. He could no longer take

a walk on his own. Wasn’t his life a sort of living hell? And what

about my mother’s?

There was, Bramstedt continued, little open discussion

among cardiologists, and no consensus, about the legality and

morality of turning off cardiac devices. But they were often

deactivated just the same. In 2008, Bramstedt, working with

a cardiologist, an internist, and a statistician from the Mayo

Clinic, had conducted an anonymous, Web-based survey of 787

nurses, doctors, and device company representatives who were

members of the Heart Rhythm Society, a cardiology profes-

sional association. Eighty-seven percent reported they had been

involved in requests to deactivate a cardiac device in a termi-

nally ill patient. Of those, 92 percent had personally deactivated

a defibrillator and 76 percent a pacemaker. Many said they were

less comfortable with deactivating pacemakers, which weren’t

seen as medically burdensome, than with deactivating defibril-

lators, which dramatically worsened quality of death. A fifth had

refused a request to deactivate a pacemaker, and 11 percent

considered pacemaker deactivation a form of euthanasia.

The problem, Bramstedt went on, was set in motion when the

devices first went in. Patients should be informed
then,
she said, how long their devices would last, and that the time might come

they wished to have them turned off. That could be done pain-

lessly, she said in an aside, without surgery. That was news to me.

I made more calls and discovered that a white ceramic device,

functioning like a TV remote and shaped like the wands that

children use to blow bubbles, could be placed around the hump

beneath my father’s collarbone. Someone could press a few but-

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tons and the electrical pulses that ran down the pacemaker’s

spiraled wires to his heart would slow until they were no longer

effective. My father’s heart would probably not stop. It would

just return to its old, slow rhythm. If his aging heart had further

deteriorated, he might die within weeks. If he were unlucky, he

might linger for months.

If we did nothing, his pacemaker would not stop for years.

Like the tireless charmed brooms that bedeviled the sor-

cerer’s apprentice in Disney’s
Fantasia,
the pacemaker would

prompt my father’s heart to beat after he became too demented

to speak, sit up, or eat. It would briefly keep his heart twitching

after he drew his last breath. If he were buried, it would keep

sending electrical signals to his inert, dead heart in the coffin. If

he were cremated, it would have to be cut from his chest first,

to prevent it from exploding and damaging the walls or hurting

an attendant.

I thought about the Cruzan case. If a feeding tube was medi-

cal treatment, wasn’t a pacemaker? Surely my mother and I, as

my father’s “designated health care surrogates,” had the legal

and moral right to request its withdrawal. It sounded eminently

reasonable. But it didn’t feel that way.

When my father had his stroke, I knew at once my parents’

world had been struck by lightning. Now I understood that

the pacemaker had equally cleaved their world.
For the want

of a nail, the horseshoe was lost; for the want of the horse, the

rider was lost; for the want of the rider, the battle was lost; for the
want of the battle, the kingdom was lost. And all for the want of a

horseshoe nail.
If only my mother had asked for my opinion. If

only I’d flown home. If only I’d known what to ask when I got

there. If only my mother hadn’t hidden her angst so skillfully

and groomed my father so perfectly that he looked more func-

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tional than he was to Dr. Rogan, and she less desperate. If only

someone had asked my father—who only a year later said he

was “living too long”—whether he wanted to live to be ninety.

Yet who could I blame?

I made more calls. I learned that in an ideal world, doctors

told their patients about the pros, cons, and alternatives to any

proposed medical treatment. I learned that the pacemaker

could have been avoided altogether if the hernia surgery had

been performed another way, using a local anesthetic less risky

to the heart. I learned we could have signed a waiver accept-

ing the risks. I learned that the surgeon could have hooked my

father’s heart up to a temporary external pacemaker—a proce-

dure that a leading cardiac surgeon told me was perfectly safe—

and removed it after the hernias were sewn up and my father

safely out of the recovery room.

I would raise these options years later with my father’s car-

diologist and surgeon. They were nonplussed. Said the surgeon,

“Your father was still pretty together back then. It’s hard to envi-

sion a scenario where you’d say, ‘I’ve got to get that hernia fixed

but don’t worry about his heart!’” Said the cardiologist, “When

one has a pretty solid indication for a permanent pacemaker, you

don’t usually do that [use a temporary device]. That’s a risky situ-

ation versus a fairly minor procedure and a permanent solution.”

In any case, Dr. Rogan said, “Everyone takes for granted that it’s

the family care physician who really acts as a quarterback.”

And where was Dr. Fales? Why did Medicare reward Dr.

Aranow and Dr. Rogan far better for doing the procedure than

it would have paid Dr. Fales for making a reasoned argument

against it? “I spend forty-five minutes thinking through the

problem, and I get seventy-five to a hundred bucks,” Dr. Fales

said when next we spoke. “Someone spends forty-five minutes

putting in a pacemaker and is paid six times as much.”

Why had “informed consent” for what Bramstedt defined as

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a miniaturized form of life support consisted of nothing more

than a brief meeting with Dr. Aranow, at which my father had

obediently affixed his wavering, spider-like signature to a ritual

form whose checked boxes described only the generic risks of

minor surgery? And what were we to do now?

I called my mother and told her that my father’s pacemaker

could be painlessly deactivated. She listened in silence. Years

later I discovered that not long after our talk, she e-mailed a

close friend in England and told her that I seemed to want to

just get rid of my father.

That was where things stood when I found myself kneeling, a

month later, with my bottom on a meditation bench and my

hands on my thighs, in a spacious hall among the dripping scrub

oaks of northern California. A bell rang. I bowed to the Bud-

dhas, and headed for the door. The rain was beating its way

down the square copper drainpipes as I moved slowly under my

umbrella, in the silent company of others, down to the dining

room. I’d arrived at Spirit Rock Meditation Center consumed by

worry and obsession, furious about the pacemaker and sick of

nagging my mother to get help. The inner microphone had been

taken over by voices I barely noticed in my daily life
: You’re not

productive. You don’t make enough money. Your house is a mess.

Your man isn’t good enough. You’re letting your parents down.

That evening, the rain stopped. The only sound I could hear

in the meditation hall was the
ribbit
of a frog somewhere out-