---
created_at: '2013-04-22T03:40:52.000Z'
title: What Broke My Father's Heart (2010)
url: http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?partner=rss&emc=rss&pagewanted=all&_r=1&
author: kumarski
points: 180
story_text: ''
comment_text: 
num_comments: 41
story_id: 
story_title: 
story_url: 
parent_id: 
created_at_i: 1366602052
_tags:
- story
- author_kumarski
- story_5587645
objectID: '5587645'

---
Now I would look at him and think of Anton Chekhov, who died of
tuberculosis in 1904. “Whenever there is someone in a family who has
long been ill, and hopelessly ill,” he wrote, “there come painful
moments when all timidly, secretly, at the bottom of their hearts long
for his death.” A century later, my mother and I had come to long for
the machine in my father’s chest to fail.

Until 2001, my two brothers and I — all living in California — assumed
that our parents would enjoy long, robust old ages capped by some brief,
undefined final illness. Thanks to their own healthful habits and a
panoply of medical advances — vaccines, antibiotics, airport
defibrillators, 911 networks and the like — they weren’t likely to die
prematurely of the pneumonias, influenzas and heart attacks that
decimated previous generations. They walked every day. My mother
practiced yoga. My father was writing a history of his birthplace, a
small South African town.

In short, they were seemingly among the lucky ones for whom the American
medical system, despite its fragmentation, inequity and waste, works
quite well. Medicare and supplemental insurance paid for their
specialists and their trusted Middletown internist, the lean,
bespectacled Robert Fales, who, like them, was skeptical of medical
overdoing. “I bonded with your parents, and you don’t bond with
everybody,” he once told me. “It’s easier to understand someone if they
just tell it like it is from their heart and their soul.”

They were also stoics and religious agnostics. They signed living wills
and durable power-of-attorney documents for health care. My mother, who
watched friends die slowly of cancer, had an underlined copy of the
Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them
lose control of their lives to a set of perverse financial incentives —
for cardiologists, hospitals and especially the manufacturers of
advanced medical devices — skewed to promote maximum treatment. At a
point hard to precisely define, they stopped being beneficiaries of the
war on sudden death and became its victims.

**Things took their first** unexpected turn on Nov. 13, 2001, when my
father — then 79, pacemakerless and seemingly healthy — collapsed on my
parents’ kitchen floor in Middletown, making burbling sounds. He had
suffered a stroke.

He came home six weeks later permanently incapable of completing a
sentence. But as I’ve said, he didn’t give up easily, and he doggedly
learned again how to fasten his belt; to peck out sentences on his
computer; to walk alone, one foot dragging, to the university pool for
water aerobics. He never again put on a shirt without help or looked at
the book he had been writing. One day he haltingly told my mother, “I
don’t know who I am anymore.”

His stroke devastated two lives. The day before, my mother was an
upper-middle-class housewife who practiced calligraphy in her spare
time. Afterward, she was one of tens of millions of people in America,
most of them women, who help care for an older family member.

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Their numbers grow each day. Thanks to advanced medical technologies,
elderly people now survive repeated health crises that once killed them,
and so the “oldest old” have become the nation’s most rapidly growing
age group. Nearly a third of Americans over 85 have dementia (a
condition whose prevalence rises in direct relationship to longevity).
Half need help with at least one practical, life-sustaining activity,
like getting dressed or making breakfast. Even though a capable woman
was hired to give my dad showers, my 77-year-old mother found herself on
duty more than 80 hours a week. Her blood pressure rose and her weight
fell. On a routine visit to Dr. Fales, she burst into tears. She was put
on sleeping pills and antidepressants.

My father said he came to believe that she would have been better off if
he had died. “She’d have weeped the weep of a widow,” he told me in his
garbled, poststroke speech, on a walk we took together in the fall of
2002. “And then she would have been all right.” It was hard to tell
which of them was suffering more.

As we shuffled through the fallen leaves that day, I thought of my
father’s father, Ernest Butler. He was 79 when he died in 1965, before
pacemakers, implanted cardiac defibrillators, stents and replacement
heart valves routinely staved off death among the very old. After
completing some long-unfinished chairs, he cleaned his woodshop, had a
heart attack and died two days later in a plain hospital bed. As I held
my dad’s soft, mottled hand, I vainly wished him a similar merciful
death.

A few days before Christmas that year, after a vigorous session of water
exercises, my father developed a painful inguinal (intestinal) hernia.
My mother took him to Fales, who sent them to a local surgeon, who sent
them to a cardiologist for a preoperative clearance. After an
electrocardiogram recorded my father’s slow heartbeat — a longstanding
and symptomless condition not uncommon in the very old — the
cardiologist, John Rogan, refused to clear my dad for surgery unless he
received a pacemaker.

Without the device, Dr. Rogan told me later, my father could have died
from cardiac arrest during surgery or perhaps within a few months. It
was the second time Rogan had seen my father. The first time, about a
year before, he recommended the device for the same slow heartbeat. That
time, my then-competent and prestroke father expressed extreme
reluctance, on the advice of Fales, who considered it overtreatment.

My father’s [medical
conservatism](http://www.dartmouthatlas.org/downloads/reports/preference_sensitive.pdf),
I have since learned, is not unusual. According to an analysis by the
Dartmouth Atlas medical-research group, patients are far more likely
than their doctors to reject aggressive treatments when fully informed
of pros, cons and alternatives — information, one study suggests, that
nearly half of patients say they don’t get. And although many doctors
assume that people want to extend their lives, many do not. In a [1997
study](http://www.ncbi.nlm.nih.gov/pubmed/9215332) in The Journal of the
American Geriatrics Society, 30 percent of seriously ill people surveyed
in a hospital said they would “rather die” than live permanently in a
nursing home. In a [2008
study](http://content.onlinejacc.org/cgi/content/short/52/21/1702) in
The Journal of the American College of Cardiology, 28 percent of
patients with advanced heart failure said they would trade one day of
excellent health for another two years in their current state.

When Rogan suggested the pacemaker for the second time, my father was
too stroke-damaged to discuss, and perhaps even to weigh, his
trade­offs. The decision fell to my mother — anxious to relieve my
father’s pain, exhausted with caregiving, deferential to doctors and no
expert on high-tech medicine. She said yes. One of the most important
medical decisions of my father’s life was over in minutes. Dr. Fales was
notified by fax.

**Fales loved my** parents, knew their suffering close at hand,
continued to oppose a pacemaker and wasn’t alarmed by death. If he had
had the chance to sit down with my parents, he could have explained that
the pacemaker’s battery would last 10 years and asked whether my father
wanted to live to be 89 in his nearly mute and dependent state. He could
have discussed the option of using a temporary external pacemaker that,
I later learned, could have seen my dad safely through surgery. But my
mother never consulted Fales. And the system would have effectively
penalized him if she had. Medicare would have paid him a standard
office-visit rate of $54 for what would undoubtedly have been a long
meeting — and nothing for phone calls to work out a plan with Rogan and
the surgeon.

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Medicare has made minor improvements since then, and in the House
version of the health care reform bill debated last year, much better
payments for such conversations were included. But after the provision
was distorted as reimbursement for “death panels,” it was dropped. In my
father’s case, there was only a brief informed-consent process, covering
the boilerplate risks of minor surgery, handled by the general surgeon.

I believe that my father’s doctors did their best within a
compartmentalized and time-pressured medical system. But in the absence
of any other guiding hand, there is no doubt that economics helped shape
the wider context in which doctors made decisions. Had we been at the
Mayo Clinic — where doctors are salaried, medical records are
electronically organized and care is coordinated by a single doctor —
things might have turned out differently. But Middletown is part of the
fee-for-service medical economy. Doctors peddle their wares on a
piecework basis; communication among them is haphazard; thinking is
often short term; nobody makes money when medical interventions are
declined; and nobody is in charge except the marketplace.

And so on Jan. 2, 2003, at Middlesex Hospital, the surgeon implanted my
father’s pacemaker using local anesthetic. Medicare paid him $461 and
the hospital a flat fee of about $12,000, of which an estimated $7,500
went to St. Jude Medical, the maker of the device. The hernia was fixed
a few days later.

It was a case study in what primary-care doctors have long bemoaned:
that Medicare rewards doctors far better for doing procedures than for
assessing whether they should be done at all. The incentives for
overtreatment continue, said Dr. Ted Epperly, the board chairman of the
American Academy of Family Physicians, because those who profit from
them — specialists, hospitals, drug companies and the medical-device
manufacturers — spend money lobbying Congress and the public to keep it
that way.

Last year, doctors, hospitals, drug companies, medical-equipment
manufacturers and other medical professionals spent $545 million [on
lobbying](http://Opensecrets.org), according to the Center for
Responsive Politics. This may help explain why researchers estimate that
20 to 30 percent of Medicare’s $510 billion budget goes for unnecessary
tests and treatment. Why cost-containment received short shrift in
health care reform. Why physicians like Fales net an average of $173,000
a year, while noninvasive cardiologists like Rogan net about $419,000.

The system rewarded nobody for saying “no” or even “wait” — not even my
frugal, intelligent, Consumer-Reports-reading mother. Medicare and
supplemental insurance covered almost every penny of my father’s
pacemaker. My mother was given more government-mandated consumer
information when she bought a new Camry a year later.

And so my father’s electronically managed heart — now requiring frequent
monitoring, paid by Medicare — became part of the $24 billion worldwide
cardiac-device industry and an indirect subsidizer of the fiscal health
of American hospitals. The profit margins that manufacturers earn on
cardiac devices is close to 30 percent. Cardiac procedures and
diagnostics generate about 20 percent of hospital revenues and 30
percent of profits.

**Shortly after New** Year’s 2003, my mother belatedly called and told
me about the operations, which went off without a hitch. She didn’t call
earlier, she said, because she didn’t want to worry me. My heart sank,
but I said nothing. It is one thing to silently hope that your beloved
father’s heart might fail. It is another to actively abet his death.

Photo

The pacemaker bought my parents two years of limbo, two of purgatory and
two of hell. At first they soldiered on, with my father no better and no
worse. My mother reread Jon Kabat-Zinn’s “Full Catastrophe Living,”
bought a self-help book on patience and rose each morning to meditate.

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In 2005, the age-related degeneration that had slowed my father’s heart
attacked his eyes, lungs, bladder and bowels. Clots as narrow as a
single human hair lodged in tiny blood vessels in his brain, killing
clusters of neurons by depriving them of oxygen. Long partly deaf, he
began losing his sight to wet macular degeneration, requiring ocular
injections that cost nearly $2,000 each. A few months later, he forgot
his way home from the university pool. He grew incontinent. He was
collapsing physically, like an ancient, shored-up house.

In the summer of 2006, he fell in the driveway and suffered a brain
hemorrhage. Not long afterward, he spent a full weekend compulsively
brushing and rebrushing his teeth. “The Jeff I married . . . is no
longer the same person,” my mother wrote in the journal a social worker
had suggested she keep. “My life is in ruins. This is horrible, and I
have lasted for five years.” His pacemaker kept on ticking.

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When bioethicists debate life-extending technologies, the effects on
people like my mother rarely enter the calculus. But a 2007 Ohio State
University study of the DNA of family caregivers of people with
Alzheimer’s disease showed that the ends of their chromosomes, called
telomeres, had degraded enough to reflect a four-to-eight-year
[shortening of
lifespan](http://www.jimmunol.org/cgi/content/full/179/6/4249). By that
reckoning, every year that the pacemaker gave my irreparably damaged
father took from my then-vigorous mother an equal year.

When my mother was upset, she meditated or cleaned house. When I was
upset, I Googled. In 2006, I discovered that pacemakers could be
deactivated without surgery. Nurses, doctors and even device salesmen
had done so, usually at deathbeds. A white ceramic device, like a TV
remote and shaped like the wands that children use to blow bubbles,
could be placed around the hump on my father’s chest. Press a few
buttons and the electrical pulses that ran down the leads to his heart
would slow until they were no longer effective. My father’s heart, I
learned, would probably not stop. It would just return to its old, slow
rhythm. If he was lucky, he might suffer cardiac arrest and die within
weeks, perhaps in his sleep. If he was unlucky, he might linger
painfully for months while his lagging heart failed to suffuse his vital
organs with sufficient oxygenated blood.

If we did nothing, his pacemaker would not stop for years. Like the
tireless charmed brooms in Disney’s “Fantasia,” it would prompt my
father’s heart to beat after he became too demented to speak, sit up or
eat. It would keep his heart pulsing after he drew his last breath. If
he was buried, it would send signals to his dead heart in the coffin. If
he was cremated, it would have to be cut from his chest first, to
prevent it from exploding and damaging the walls or hurting an
attendant.

**On the Internet,** I discovered that the pacemaker — somewhat like the
ventilator, defibrillator and feeding tube — was first an exotic,
stopgap device, used to carry a handful of patients through a brief
medical crisis. Then it morphed into a battery-powered, implantable and
routine treatment. When Medicare approved the pacemaker for
reimbursement in 1966, the market exploded. Today pacemakers are
implanted annually in more than 400,000 Americans, about 80 percent of
whom are over 65. According to calculations by the Dartmouth Atlas
research group using Medicare data, nearly a fifth of new recipients who
receive pacemakers annually — 76,000 — are over 80. The typical patient
with a cardiac device today is an elderly person suffering from at least
one other severe chronic illness.

Over the years, as technology has improved, the battery life of these
devices lengthened. The list of heart conditions for which they are
recommended has grown. In 1984, the treatment guidelines from the
American College of Cardiology declared that pacemakers were strongly
recommended as “indicated” or mildly approved as “reasonable” for 56
heart conditions and “not indicated” for 31 more. By 2008, the list for
which they were strongly or mildly recommended expanded to 88, with most
of the increase in the lukewarm “reasonable” category.

The [research
backing](http://jama.ama-assn.org/cgi/content/full/301/8/831) the
expansion of diagnoses was weak. Over all, only 5 percent of the
positive recommendations were supported by research from multiple
double-blind randomized studies, the gold standard of evidence-based
medicine. And 58 percent were based on no studies at all, only a
“consensus of expert opinion.” Of the 17 cardiologists who wrote the
2008 guidelines, 11 received financing from cardiac-device makers or
worked at institutions receiving it. Seven, due to the extent of their
financial connections, were recused from voting on the guidelines they
helped write.

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This pattern — a paucity of scientific support and a plethora of
industry connections — holds across almost all cardiac treatments,
according to the cardiologist Pierluigi Tricoci of Duke University’s
Clinical Research Institute. Last year in The Journal of the American
Medical Association, Tricoci and his co-authors wrote that only 11
percent of 2,700 widely used cardiac-treatment guidelines were based on
that gold standard. Most were based only on expert opinion.

Experts are as vulnerable to conflicts of interest as researchers are,
the authors warned, because “expert clinicians are also those who are
likely to receive honoraria, speakers bureau \[fees\], consulting fees
or research support from industry.” They called the current
cardiac-research agenda “strongly influenced by industry’s natural
desire to introduce new products.”

Perhaps it’s no surprise that I also discovered others puzzling over
cardiologists who recommended pacemakers for relatives with advanced
dementia. “78-year-old mother-in-law has dementia; severe short-term
memory issues,” read an Internet post by “soninlaw” on Elderhope.com, a
caregivers’ site, in 2007. “On a routine trip to her cardiologist,
doctor decides she needs a pacemaker. . . . Anyone have a similar
encounter?”

By the summer of 2007, my dad had forgotten the purpose of a dinner
napkin and had to be coached to remove his slippers before he tried to
put on his shoes. After a lifetime of promoting my father’s health, my
mother reversed course. On a routine visit, she asked Rogan to
deactivate the pacemaker. “It was hard,” she later told me. “I was doing
for Jeff what I would have wanted Jeff to do for me.” Rogan soon made it
clear he was morally opposed. “It would have been like putting a pillow
over your father’s head,” he later told me.

Not long afterward, my mother declined additional medical tests and
refused to put my father on a new anti-dementia drug and a blood thinner
with troublesome side effects. “I take responsibility for whatever,” she
wrote in her journal that summer. “Enough of all this overkill\! It’s
killing me\! Talk about quality of life — what about mine?”

**Then came the** autumn day when she asked for my help, and I said yes.
I told myself that we were simply trying to undo a terrible medical
mistake. I reminded myself that my dad had rejected a pacemaker when his
faculties were intact. I imagined, as a bioethicist had suggested,
having a 15-minute conversation with my independent, predementia father
in which I saw him shaking his head in horror over any further extension
of what was not a “life,” but a prolonged and attenuated dying. None of
it helped. I knew that once he died, I would dream of him and miss his
mute, loving smiles. I wanted to melt into the arms of the father I once
had and ask him to handle this. Instead, I felt as if I were signing on
as his executioner and that I had no choice.

Over the next five months, my mother and I learned many things. We were
told, by the Hemlock Society’s successor, Compassion and Choices, that
as my father’s medical proxy, my mother had the legal right to ask for
the withdrawal of any treatment and that the pacemaker was, in theory at
least, a form of medical treatment. We learned that although my father’s
living will requested no life support if he were comatose or dying, it
said nothing about dementia and did not define a pacemaker as life
support. We learned that if we called 911, emergency medical technicians
would not honor my father’s do-not-resuscitate order unless he wore a
state-issued orange hospital bracelet. We also learned that no
cardiology association had given its members clear guidance on when, or
whether, deactivating pacemakers was ethical.

(Last month that changed. The Heart Rhythm Society and the American
Heart Association issued guidelines declaring that patients or their
legal surrogates have the moral and legal right to request the
withdrawal of any medical treatment, including an implanted cardiac
device. It said that deactivating a pacemaker was neither euthanasia nor
assisted suicide, and that a doctor could not be compelled to do so in
violation of his moral values. In such cases, it continued, doctors
“cannot abandon the patient but should involve a colleague who is
willing to carry out the procedure.” This came, of course, too late for
us.)

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In the spring of 2008, things got even worse. My father took to roaring
like a lion at his caregivers. At home in California, I searched the
Internet for a sympathetic cardiologist and a caregiver to put my Dad to
bed at night. My frayed mother began to shout at him, and their
nighttime scenes were heartbreaking and frightening. An Alzheimer’s
Association support-group leader suggested that my brothers and I fly
out together and institutionalize my father. This leader did not know my
mother’s formidable will and had never heard her speak about her wedding
vows or her love.

Meanwhile my father drifted into what nurses call “the dwindles”: not
sick enough to qualify for hospice care, but sick enough to never get
better. He fell repeatedly at night and my mother could not pick him up.
Finally, he was weak enough to qualify for palliative care, and a team
of nurses and social workers visited the house. His chest grew wheezy.
My mother did not request antibiotics. In mid-April 2008, he was taken
by ambulance to Middlesex Hospital’s hospice wing, suffering from
pneumonia.

Pneumonia was once called “the old man’s friend” for its promise of an
easy death. That’s not what I saw when I flew in. On morphine,
unreachable, his eyes shut, my beloved father was breathing as hard and
regularly as a machine.

My mother sat holding his hand, weeping and begging for forgiveness for
her impatience. She sat by him in agony. She beseeched his doctors and
nurses to increase his morphine dose and to turn off the pacemaker. It
was a weekend, and the doctor on call at Rogan’s cardiology practice
refused authorization, saying that my father “might die immediately.”
And so came five days of hard labor. My mother and I stayed by him in
shifts, while his breathing became increasingly ragged and his feet
slowly started to turn blue. I began drafting an appeal to the hospital
ethics committee. My brothers flew in.

On a Tuesday afternoon, with my mother at his side, my father stopped
breathing. A hospice nurse hung a blue light on the outside of his
hospital door. Inside his chest, his pacemaker was still quietly
pulsing.

After his memorial service in the Wesleyan University chapel, I carried
a box from the crematory into the woods of an old convent where he and I
often walked. It was late April, overcast and cold. By the side of a
stream, I opened the box, scooped out a handful of ashes and threw them
into the swirling water. There were some curious spiraled metal wires,
perhaps the leads of his pacemaker, mixed with the white dust and pieces
of bone.

**A year later,** I took my mother to meet a heart surgeon in a
windowless treatment room at Brigham and Women’s Hospital in Boston. She
was 84, with two leaking heart valves. Her cardiologist had recommended
open-heart surgery, and I was hoping to find a less invasive approach.
When the surgeon asked us why we were there, my mother said, “To ask
questions.” She was no longer a trusting and deferential patient. Like
me, she no longer saw doctors — perhaps with the exception of Fales — as
healers or her fiduciaries. They were now skilled technicians with their
own agendas. But I couldn’t help feeling that something precious — our
old faith in a doctor’s calling, perhaps, or in a healing that is more
than a financial transaction or a reflexive fixing of broken parts — had
been lost.

The surgeon was forthright: without open-heart surgery, there was a
50-50 chance my mother would die within two years. If she survived the
operation, she would probably live to be 90. And the risks? He shrugged.
Months of recovery. A 5 percent chance of stroke. Some possibility, he
acknowledged at my prompting, of postoperative cognitive decline. (More
than half of heart-bypass patients suffer at least a 20 percent
reduction in mental function.) My mother lifted her trouser leg to
reveal an anklet of orange plastic: her do-not-resuscitate bracelet. The
doctor recoiled. No, he would not operate with that bracelet in place.
It would not be fair to his team. She would be revived if she collapsed.
“If I have a stroke,” my mother said, nearly in tears, “I want you to
let me go.” What about a minor stroke, he said — a little weakness on
one side?

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I kept my mouth shut. I was there to get her the information she needed
and to support whatever decision she made. If she emerged from surgery
intellectually damaged, I would bring her to a nursing home in
California and try to care for her the way she had cared for my father
at such cost to her own health. The thought terrified me.

The doctor sent her up a floor for an echocardiogram. A half-hour later,
my mother came back to the waiting room and put on her black coat. “No,”
she said brightly, with the clarity of purpose she had shown when she
asked me to have the pacemaker deactivated. “I will not do it.”

She spent the spring and summer arranging house repairs, thinning out my
father’s bookcases and throwing out the files he collected so lovingly
for the book he never finished writing. She told someone that she didn’t
want to leave a mess for her kids. Her chest pain worsened, and her
breathlessness grew severe. “I’m aching to garden,” she wrote in her
journal. “But so it goes. ACCEPT ACCEPT ACCEPT.”

Last August, she had a heart attack and returned home under hospice
care. One evening a month later, another heart attack. One of my
brothers followed her ambulance to the hospice wing where we had sat for
days by my father’s bed. The next morning, she took off her silver
earrings and told the nurses she wanted to stop eating and drinking,
that she wanted to die and never go home. Death came to her an hour
later, while my brother was on the phone to me in California — almost as
mercifully as it had come to my paternal grandfather. She was continent
and lucid to her end.

A week later, at the same crematory near Long Island Sound, my brothers
and I watched through a plate-glass window as a cardboard box containing
her body, dressed in a scarlet silk ao dai she had sewn herself, slid
into the flames. The next day, the undertaker delivered a plastic box to
the house where, for 45 of their 61 years together, my parents had loved
and looked after each other, humanly and imperfectly. There were no bits
of metal mixed with the fine white powder and the small pieces of her
bones.**

[Continue reading the main story](#whats-next)
