Knocking on Heaven's Door: The Path to a Better Way of Death (40 page)

ment, resisting Fast Medicine’s default never-quit pathway, and

honoring death.

The decision was Slow Medicine at its best—a shared deci-

sion that took into account the suffering of the whole family

and did not focus reflexively on fixing an organ or extending a

KnockingHeaven_ARC.indd 261

1/31/13 12:27 PM

262

katy butler

life. It empowered the people who carried the burden over doc-

tors who would perform a heroic intervention and then leave

the family to pick up the pieces. It accepted the reality of her

father’s twin terminal illnesses—dementia and heart trouble. It

was not made in isolation by an exhausted daughter but with

the support and validation of a larger moral community. It was

the fruit of unusually harmonious cooperation between a family

and a medical institution. It was, in its own way, loving, beauti-

ful, and holy.

This is one possible path to death.

Not long afterward, Brian and I watched another death, one

that underscored that the problem of American dying has causes

far deeper than the perverse economic incentives within medi-

cine that I’d investigated or the deference to medical author-

ity sometimes shown by members of the Greatest Generation.

The problem lies with our culture, which is unwilling to engage

with death until it is in our face. One of Brian’s closest friends,

a hardy, healthy, fifty-nine-year-old Colorado river guide and a

specialist in the alternative medicine approach called home-

opathy, was suddenly overcome by seizures and vomiting. At

the hospital, he was diagnosed with a fatal melanoma that had

metastasized to many internal organs, including his liver, bow-

els, and spleen. There were signs of eleven tumors in his brain

alone. We watched in horror as David turned down any sugges-

tion of hospice and insisted instead that everything be done, no

matter how bad the odds. He had weeks of whole-brain radia-

tion and, when that made him worse, a last-ditch “Hail Mary”

neurosurgery. The neurosurgeon, who met David face-to-face

for the first time after he was already prepped for surgery, could

not guarantee that the operation had even a fifty-fifty chance

of helping him and acknowledged there were risks it would

KnockingHeaven_ARC.indd 262

1/31/13 12:27 PM

knocking on heaven’s door

263

make him worse. David insisted. He entered surgery able to

talk, walk, and make his own decisions. He woke up unable

to formulate a sentence, in diapers, and unable to walk or to

complete the emotional work necessary for the Good Death our

ancestors prized. In that condition he died, nine weeks after his

cancer diagnosis.

Consider, too, another common pathway to modern death, this

one traversed by eighty-four-year-old Marguerite Wolff, the

mother of journalist Michael Wolff. She’d been having fainting

spells, and by the time she was taken from her assisted living

complex to the hospital for heart-valve surgery, she was already

too forgetful to live on her own, count, organize a Thanksgiving

dinner, or tell time. She came out of her surgery with a perfectly

fixed-up heart, almost psychotic levels of agitation, a tendency

to roam and to hit, and cascading losses of memory and lan-

guage. She was soon evicted from assisted living for needing

too much assistance and placed under twenty-four-hour care,

paid for by her children, in a rented Manhattan apartment. She

had seizures and became mute, unable to walk, and relentlessly

angry, with one ancient path to a merciful death—a slowly fail-

ing heart—thoroughly blocked. “My siblings and I must take

the blame here,” Wolff wrote in 2012 in
New York
magazine,

belatedly reflecting on their barely pondered decision to approve

surgery rather than face the prospect of their mother’s mortality
.

“It did not once occur to us to say: “You want to do major heart

surgery on an 84-year-old woman showing progressive signs of

dementia? What are you, nuts?”

Consider, finally, the death of Kenneth Harris Krieger, a

retired engineer, who died the way many of us die now. In the

summer of 2011, when he was eighty-eight and too demented

to remember how to rake leaves, he came down with a blood-

KnockingHeaven_ARC.indd 263

1/31/13 12:27 PM

264

katy butler

stream infection of mysterious origin. His daughter Lisa, a sci-

ence reporter for the
San Jose Mercury News,
rushed him from

his assisted living residence to the emergency room. He had

signed a do-not-resuscitate order and said he wanted to die a

natural death, but nobody had prepared his daughter for the

practical implications of carrying out those wishes. She had

never considered palliative care or hospice, and she was alone.

Nobody viewed her as a patient in addition to her father. She

hadn’t accepted the coming of death.

Her father was treated at Stanford Hospital, nationally

famous for its pioneering work in heart transplantation. In con-

sultation with Lisa, doctors there decided that his do-not-resus-

citate order did not prohibit them from sending her father to the

intensive care unit and attaching him to a respirator to buy him

enough time for antibiotics to work. He was sedated, and Lisa

never again saw her father conscious.

The drugs didn’t work. Each decision after that, as his daugh-

ter wrote for her newspaper in February 2012, was “incremen-

tal”: another drug, another problem, another treatment, another

test, another organ system in failure, another stratospherically

expensive drug. By the time her father died ten days later, after

Lisa refused to permit a last-ditch surgery to remove gangrenous

tissue destroyed by a rampant infection of strep bacteria called

necrotizing fasciitis, her father had been subjected to $323,000

worth of painful medical treatment, including $25,000 a day for

his ICU bed and $48,000 for a single day’s dosing with immu-

noglobulin. (Most of the expense was absorbed or cost-shifted

by Stanford.) He was moved to a hospice bed and died without

regaining consciousness.

Lisa never got to say good-bye to her father the way I’d been

blessed to say good-bye to mine. She went on to write powerful

articles about the botched end of his life and about advanced

medical directives and palliative care. Her father’s was not an

KnockingHeaven_ARC.indd 264

1/31/13 12:27 PM

knocking on heaven’s door

265

unusual path to death—the panicked trip to the emergency

room, the family members unprepared, hundreds of thousands

in public and private dollars wasted, the implications of his DNR

and his dementia ignored, and doctors who’d never previously

met the family busily deploying painful forms of futility rather

than facing the reality of an old man’s dying and speaking the

truth. It was a death by Fast Medicine—protracted, expensive,

and traumatic. And it is almost nobody’s idea of a Good Death.

Reclaiming death from medicine, the way the natural childbirth

movement recaptured birth in the 1970s, is already underway

in the form of open rebellion by families like mine, the growth

of hospice and palliative care programs, and the widening num-

bers of doctors who practice Slow Medicine—though they may

not call it that—especially in geriatrics and primary care and in

critical care, pulmonology, cardiology, and oncology.

But the economic forces arrayed against reclaiming the

deathbed in the United States are immense. Reimbursements

for advanced medical technologies, which become forms of

medical torture when inappropriately deployed, help cover the

cost of a sales representative’s mortgage payment, a hospital’s

money-losing emergency room, a surgeon’s second or third

home, or a dividend to stockholders of Siemens or St. Jude

Medical. Nothing much will change until we pay doctors and

hospitals as well when they appropriately do less as we do when

they do too much.

One physician told me that if he relied only on Medicare

reimbursements for his rotations on the palliative care service—

which were essentially subsidized by his salary from a university

hospital research post—he would earn about $40,000 a year

working full time. An oncologist who spends an hour or more

having a truthful conversation with a distraught family about

KnockingHeaven_ARC.indd 265

1/31/13 12:27 PM

266

katy butler

the dim prospects of yet another round of chemotherapy for a

metastasized cancer will be barely compensated. One who goes

ahead with an untested, harrowing, and dubious drug, some-

times against his best judgment, will have to spend less time

per patient and will be better financially rewarded, even getting

a markup on the cost of the drug itself. If a cardiac surgeon

ventures a “Hail Mary” surgery on a very sick patient with mul-

tiple fatal illnesses, perhaps in her last month of life, he and the

hospital will be paid more by Medicare than if he performs the

same operation on a healthier patient with a more reasonable

chance for long-term survival.

Doctors are often insulted by the suggestion that such finan-

cial strictures help shape their medical treatment, but just as

surely as the home mortgage deduction promotes home owner-

ship, economic incentives and disincentives—along with dis-

comfort with dying, fear of being sued or accused of conducting

a “death panel,” and feelings of professional failure—encour-

age specialists to refer patients to hospice care only days before

death, essentially dumping them on the program for a morphine

drip after wringing out every last expensive procedure from the

suffering body of the patient. This helps explain why half of

people who die under hospice care spend eighteen days or less

there, when they could have benefited from up to six months of

its physical, spiritual, emotional, and practical help.

Changes in Medicare’s reimbursement structure could help.

Perhaps someday Medicare will offer us the choice of a “Plan Q”

covering up to two years of home and palliative care in exchange

for the willingness not to expect Medicare to pay for a last-

ditch $35,000 defibrillator, a futile and debilitating surgery for

an incurable brain tumor, a $50,000 chemotherapy buying only

a couple of pain-wracked months, a $300,000 ICU death, or a

$500,000 external heart pump. Perhaps we will look with more

humility on the British National Health Service, which gives

KnockingHeaven_ARC.indd 266

1/31/13 12:27 PM

knocking on heaven’s door

267

better home support to its chronically ill elderly, but doesn’t

cover drugs and procedures that string out dying if they cost

more than $50,000 per year of life gained. Perhaps someday

we will have the spine to admit that people routinely die in

hospitals and will push for protocols for humane care there, like

Britain’s Liverpool Care Pathway for the Dying Patient. Perhaps

some day we will have an “811” number to bring a flying squad

of palliative care and hospice doctors and nurses to the home

to provide reassurance to the panicked family and pain manage-

ment to the dying, as an alternative to a brutal final tour through

911, the ER, and the ICU.

Changes like these are unlikely to come without a grassroots

movement of doctors and family caregivers advocating Slow

Medicine—humane, realistic, appropriate, not always cheaper,

and sometimes time-consuming (but not technology-consum-

ing) medical care for the last phase of life. The antidote for

overtreatment is not undertreatment: it’s appropriate care.

When the body can no longer be healed, there can still be heal-

ing for the family—and for the soul.

As the caregiving crisis deepens, perhaps a grassroots family

caregivers’ movement will fight for better funding for such care.

Perhaps it will counterbalance the powerful health care indus-

try lobby, made up of hospitals, doctors, pharmaceutical compa-

nies, and device and product manufacturers. Between 1998 and

2011, pharmaceutical companies and makers of health products

spent $2.3 billion on lobbying, making them the single biggest

influencer of members of Congress, who in turn pressure Medi-

care and federal agencies to create regulations that conform to

lobbyists’ interests, sometimes to the detriment of patients.

The unrecognized power of this lobby has insured that things

stay pretty much as they are in Medicare, with a reimbursement

KnockingHeaven_ARC.indd 267

1/31/13 12:27 PM

268

katy butler

structure that rewards the most powerful players in medicine

and starves hands-on therapies and primary care. That is the

major unspoken reason that the 2012 health care reform bill

provided for the establishment of an expert commission insu-

lated from Congress to make many Medicare decisions, a plan