Knocking on Heaven's Door: The Path to a Better Way of Death (37 page)

ing Carl J. and Ruth Shapiro Cardiovascular Center, an uplift-

ing place, almost like a cathedral, with windows three stories

high. The only decrepit things in the place were some of the

patients: they sat in their upholstered chairs in various states of

health and illness, some in wheelchairs or trundling canisters

of oxygen.

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We sat in a windowless treatment room and waited. When the

surgeon came in and asked us why we were there, my mother

said, “To ask questions.” She was no longer a trusting and def-

erential patient. Like me, she no longer saw doctors—perhaps

with the exception of her internist, Dr. Fales—as healers or her

fiduciaries. They were skilled technicians with their own agen-

das. 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 told us that my mother’s age—she was eighty-

four—was not a barrier. In the 1950s, when heart-valve surgery

was risky and experimental, doctors, by tacit agreement, did not

think of operating on people much over fifty. But in the 1970s,

after the advent of efficient heart-lung machines, reliable Medi-

care reimbursements, and safer surgical techniques, the aver-

age age of heart-valve patients began to rise. By 2008, when my

mother and I arrived there, a quarter of Brigham and Women’s

heart-valve patients were over eighty.

The surgeon was forthright: without open-heart surgery,

there was a fifty-fifty chance my mother would die within two

years. If she survived the operation, she would probably live to

be ninety—the normal life expectancy for a woman of her age.

And the risks? He shrugged. Six to eight weeks at least of recov-

ery. A 5 percent chance of stroke. Some possibility, he acknowl-

edged at my prompting, of postoperative cognitive decline.

My mother lifted her trouser leg to reveal her anklet of orange

plastic: the 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.

She would spend time recovering in intensive care. “If I have a

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stroke,” my mother said, nearly in tears, “I want you to let me

go.” What about a minor stroke, the doctor said—a little weak-

ness on one side?

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 The Redwoods in California and try to care for her the way

she had cared for my father at such a cost to her own health.

The thought terrified me.

The doctor sent her up a floor for an echocardiogram. I went

into the waiting room, called my brother Jonathan, and let loose

my fears. A half an hour later, my mother came back and put

on her black coat. “No,” she said brightly, with the clarity of

purpose she had shown when she asked me to have my father’s

pacemaker deactivated. “I will not do it.”

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Bent and Gnarled

My mother spent her last spring and summer arranging

house repairs, thinning out my father’s bookcases with

Toni’s help, and throwing out the files he collected for the book

he never finished writing, saving only the file of love letters he’d

written her when they were in their sixties. She told Toni that

she didn’t want to leave a mess for her kids.

“I must get right with Michael,” she wrote in her journal. “I am

so saddened by his refusal to visit—so distant and doesn’t call, or

when I do call is in a hurry to go somewhere. Not good.” Finally

he called and proposed coming to see her, but when he said he

wanted her to pay for a rental car, she balked, and he exploded. “I

must work on forgiveness,” she wrote in her journal, after writing

down the wounding things he’d said. “It will only corrode me. I

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feel abandoned and alone.” She sent me a DVD about forgiveness,

hoping I’d pass it on to him, but I didn’t dare.

In her journal she wrote about my father with a tenderness she

could not express while she was caring for him. “I’m overwhelmed

by sadness missing the old Jeff as I knew him—his wit and com-

passion and his sheer liveliness. Oh God how I miss him now.”

“All quiet,” she wrote on a Monday in May. “I spent the morn-

ing in Jeff’s study sorting out boxes and boxes of research so lov-

ingly collected by my poor darling.” Her chest pain worsened,

and her breathlessness grew severe. “I’m aching to garden, to

tidy up the neglect of my major achievement,” she wrote. “With-

out it the place would be so ordinary and dull. But so it goes.

ACCEPT ACCEPT ACCEPT.”

In July, she went to a new cardiologist, a partner in Dr. Rogan’s

group practice, for a second opinion. He said she might have

severe coronary artery disease as well as stiff and leaky heart

valves, and suggested she consider a less invasive operation, the

insertion of stents to prop open the partially blocked arteries in

her heart, an operation that might reduce her chest pain. He also

suggested she consider an experimental valve replacement, per-

formed by floating the device down a vein. “When I mentioned

stroke risk,” he wrote in his clinical notes, “She immediately was

turned off and did not want to pursue further discussion, again

desiring only palliative care.” He thought she’d been unnecessar-

ily frightened by the doctor at Brigham and Women’s.

I sent her a copy of
Dr. Dean Ornish’s Program for Reversing

Heart Disease,
which advocated a vegan, nonfat diet. I found

out online that Middlesex Hospital offered a meditation class in

mindfulness-based stress reduction, based on the teachings of

Jon Kabat-Zinn, whose CD my mother listened to every morn-

ing. I also discovered that Middlesex offered a “heart nurse”

program to help her manage her physical symptoms—some-

thing none of her doctors had referred her to—and I got her to

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sign up for both. Peaches, Jonathan’s long-ago girlfriend whom

my mother had embraced as a surrogate daughter and was now

a Unitarian-Universalist minister, came to visit from Vermont.

I did not go.

She deserved better from me, and now it is too late.

My mother’s heart nurse called me, urging me to get my mother

to reconsider surgery. My mother was so healthy in other ways, the

nurse said. I called Dr. Dennis McCullough, a geriatrics doctor and

leading pioneer of Slow Medicine in the United States. “Eighty-

four is still relatively young,” he said. Uneasy, I called Dr. Fales.

“I know your mother well enough, and I respect her,” he said.

“She doesn’t want to risk a surgery that could leave her debili-

tated or bound for a nursing home. I think I would make the

same decision if it was my Mom.” I called my mother and said,

“Are you sure? The surgeon said you could live to be ninety.”

“I don’t want to live to be ninety,” she said.

“I’m going to miss you,” I said, weeping. “You are not only my

mother. You are my friend.”

That August, she had a heart attack. I was away that weekend and

heard the news via Michael, whom she’d called from the hospital

when she could not reach me. He gave her low-key, empathic

support over the phone. He told me she wanted to funnel all

communication through him: she apparently needed his quiet

empathy more than my activist fixing. She was still in the hospi-

tal, in a step-down unit after several days in intensive care, when

I got a call from yet another member of Middlesex Cardiology

Associates, who’d been handed my mother’s case. The desire of

doctors not to give up on my mother, to resist death, and to show

their caring by doing something, anything, seemed unstoppable.

The doctor had gotten the results back from a cardiac cath-

eterization, an invasive and stressful test with risks of its own,

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for which they’d threaded a long tube from her groin into her

heart, injected dye into her arteries and taken X-rays. The news

was bad. The worst of the narrowing in her heart vessels was in

places too difficult to stent.

Instead, the doctors were considering giving my mother coro-

nary artery bypass grafts plus the two valve replacement surger-

ies she’d rejected when she had a far better chance of surviving

open-heart surgery in decent shape. My mother seemed to be

heading down the greased chute toward a series of “Hail Mary”

surgeries—risky, painful, dangerous, and harrowing, each one

increasing the chance that her death, when it came, would take

place in intensive care. The cost to Medicare would probably

have been in the $80,000 to $150,000 range, with higher pay-

ments if things had not gone well. More than a third of Medi-

care patients have surgery in their last year of life, nearly a tenth

have surgery in the last month of life, and a fifth die in intensive

care. Medical overtreatment costs the U.S. health care system

an estimated $158 billion to $226 billion a year.

Burning with anger, I told the astonished cardiologist that my

mother had rejected surgery before her heart attack and I saw no

reason to subject her to it now. My intuitive revulsion, I would

later discover, had a basis in medical evidence: one major study

found that 13 percent of patients over eighty who underwent

combined valve and bypass surgeries died in the hospital. In a

smaller, confirming study, 13 percent died in the hospital and an

additional 40 percent were discharged to a nursing home.

I called my mother in her hospital bed.

“I think we’re grasping . . .” I stopped.

“At straws,” she finished my sentence. She was quiet.

“It’s hard,” she said, “to give up hope.”

Four hours later she called me back. “I want you to give my

sewing machine to a woman who really sews. It’s a Bernina. They

don’t make them like this any more. It’s all metal, no plastic parts.”

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“But I’d
like it,” I said.

“But Katy,” she said. “You don’t sew.”

I said, “You’re right.”

I called her the next day. “I’m ready to die,” she said, seem-

ingly unaware of Michael’s continuing ambivalence, despite the

close support he was then giving her. “I’m at peace with all my

children.” She was overflowing. She told me she’d found the

little spiral-bound book I’d made her for her eightieth birthday.

“It was so loving,” she said, “And oh, Katy, I didn’t appreciate it.”

“Cherish Brian,” she went on.

“You mean, stop being a snob and cherish Brian?” I asked.

“That’s exactly what I mean. I
love
Brian,” she said. “ I l
ove
Brian for what he’s done for you.”

An old Zen master once wrote:

Old plum tree bent and gnarled

all at once opens one blossom, two blossoms,

three, four, five blossoms, uncountable blossoms . . .

Whirling, changing into wind, wild rain,

falling, snow, all over the earth.

My mother was like that.

My brother Jonathan brought her home from the hospital with

a portable oxygen tank: tests had shown that her heart was dam-

aged badly enough to qualify her for hospice care. She could no

longer walk upstairs on her own without fainting, and Jonathan

oversaw the installation of a stair glide—that informal harbinger

of impending death—like the one my father and Brian’s father

had used for a few months. Peaches visited. I explored getting

counseling at my local hospice, but decided not to when I learned

that because my mother was dying on the other side of the coun-

try and not as one of their clients, I didn’t qualify for Medicare-

covered services and would have to pay out-of-pocket.

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A week later, Jonathan flew back to his truck-driving job, and

Michael, further renouncing decades of self-protection, flew in

while I kept writing. My mother cooked for him and washed his

dishes. They had a classic, familiar fight, set off by her attempt

to limit how much roast chicken he ate—a fight so intense that

he called me and asked me to book him an immediate flight

back to California. I said I would, but suggested he wait a few