Knocking on Heaven's Door: The Path to a Better Way of Death (41 page)

that political opponents have attacked as putting the fate of the

elderly into the hands of “faceless bureaucrats”—rather than

with the corporate and commercial lobbies and their allies in

Congress, where it effectively rests now.

Anyone who attempts to open a public conversation about rehu-

manizing modern death must be prepared to weather charges of

rationing, promoting “death panels,” canonizing Dr. Kevorkian,

and discriminating against the aged, demented, or disabled. But

the phrase “death panels” glosses over the fact that the mor-

tality rate remains at 100 percent. The word “rationing” avoids

the reality that our current way of dying maximizes both cost

and suffering. Vilifying Dr. Kevorkian ignores the problem that

many saw him as solving: compulsory longevity, and the loss of

autonomy at the end of life to medical overdoing. Charges of

discrimination cannot mask the reality that many people con-

sider dementia a worse fate than death: it is the demented with

no close relatives who are most likely to be subjected to feeding

tubes and other life-prolonging and suffering-prolonging mea-

sures. It is not age discrimination to acknowledge the reality

that eighty-year-old bodies and brains don’t bounce back the

way young ones do, or that in the end even marathoners’ bodies

crumble in seven thousand irreversible ways, no matter how

much technology is deployed.

One sign of the growing power of a grassroots Slow Medicine

lobby can be found in New York State, where a bill promoted by

Compassion and Choices and passed overwhelmingly in 2011

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over strong opposition from the American Medical Association,

now requires doctors to provide honest information and coun-

seling to terminally ill patients about palliative care and hos-

pice. But until we join most of the rest of the developed world in

a universal, non-profit-driven health care system, it will remain

extraordinarily difficult to follow the pathway to a Good Death,

whether for yourself or for someone you love and have become

responsible for.

Of course we don’t want to die. We don’t want to say good-bye to

those we love. We certainly don’t want to be the one who says to a

doctor, “Enough.” In this we are not alone. Our ancestors did not

want to die any more than we do. Sixteenth-century lithographs

show Death as a grinning skeleton who grabs a wrist and insists

on dancing with farmers, apprentices, matrons, and business-

men, all of them protesting that they have much more important

things to do than die. But sooner or later, dance we must.

Things go better if we practice the steps of the dance before-

hand. Perhaps if we find ways to make the pathway to natural

death sacred and familiar again, we will recover the courage

to face our deaths. If we don’t, technological medicine at the

end of life will continue to collude with our fear and ignorance

and to profit from it. Unless we create new rites of passage to

help prepare for death long before it comes, we will remain vul-

nerable to the commercial exploitation of our fears and to the

implied promise that death can forever be postponed.

Dying is a sacred act. Even in the worst of circumstances, it

can be made holy. I know a young palliative care physician who

honored a nursing-home resident who died peacefully on her unit

by gathering her staff around his bed and reading a Mary Oliver

poem aloud over him—a secular blessing and an honorable good-

bye for a man who died without kin. I know a former pediatric

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katy butler

oncology nurse who would take parents aside during a child’s pro-

tracted and painful dying and tell them that they needed to let the

child know that it was okay to die. After the parents’ good-byes

were said, the nurse told me, the child would often die peace-

fully, the family having been given a healing and unbillable gift, a

throwback to a time when nurses were called “sister” and nursing

was a religious vocation as well as a profession. Even many of the

least formally religious yearn intuitively to be at peace with those

we love and to resolve what remains unresolved.

It is time to honor the compassionate impulses of doctors

and nurses who labor within time pressures and administra-

tive structures that militate against accepting, discussing, and

honoring dying. It is unlikely that we will ever again see most

deaths taking place inside the home. So we may as well as admit

that intensive care units and medical floors are, like it or not,

hospices as well as places of lifesaving. The conference rooms

where families are asked to assent to removal of life support

are locations of a sacred passage and a ritual of letting-go. They

should be as beautiful as those near labor and delivery rooms,

with quilts on the walls, rocking chairs, and bulletin boards full

of the photos of elderly people who have died on the unit, the

way obstetricians often put up photographs of babies. They

should not be places where the remnants of staff lunches are

left, or schedules posted on walls. Even in our secular and mul-

tireligious culture, we could show our caring for these trauma-

tized families with framed poems, or photographs of the cosmos

or a lotus blossom, or any other nonspecific aspect of the sacred.

The Good Death, as our ancestors defined it, was a natural

death free of medical flailing. It did not require experts. It took

place at home and was neither sudden nor lingering. Just as we

do now, our ancestors hoped to die in a familiar place among

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close friends or family; to be safe and gently cared-for in their

hour of need; to have their last words heard and treasured; to

express their love and forgiveness and to hear that they were

loved and forgiven in turn. The impulse for the Good Death

may be bred into our bones: it was once so strong that soldiers

on Civil War battlefields did their best to recreate it symboli-

cally, propping photographs of their mothers or sisters on their

chests as they died far from home.

The religious among our ancestors, and there were many,

used their dying moments to express their faith in God and their

acceptance of his will, to repent of their sins, and to prepare

their minds and souls for heaven. In the days before widespread

use of effective pain medicine, the Good Death was not neces-

sarily painless or peaceful. Our ancestors spoke of the “death

agony” and the “death throes” for a reason. But it was an honest

death. Nobody pretended that death was not in the room.

A brave death, to our ancestors, was one of acceptance.

Today, as a glance at any day’s obituaries will show, we are divided

between those who “died peacefully, surrounded by family,” and

those honored for never giving up “the brave fight against cancer,”

fighting death in all its guises, and never letting go.

My mother’s death showed me another kind of courage, as I

hope it has shown you. It will teach me for the rest of my life.

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A Map through

the Labyrinth

What I wish I’d known:

The honest, natural death is no longer the default

pathway. If you want it for yourself or for someone you love, it is

up to you to seek it out, and it is harder to find the way to it than

you may think. It is not enough to sign all the right papers or to

tell your friends you never want to be plugged into machines,

because important decisions must be made long before your gur-

ney is brought to the door of the emergency room after a pan-

icked call to 911. Every mile on the way to a bad death, every

“yes” to a doctor for a last-ditch treatment, every dishonest hope,

may look at the time like an expression of your love and caring.

The default pathway to a disempowered Fast Medicine death

is a wide freeway with smooth, well-lit on-ramps and misleading

signage about the final destination. Over time, the cars on that

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A Map through the Labyrinth

freeway move faster and the off-ramps grow fewer, and you may

find yourself funneled toward a single stopping-point, a never-

say-die death in intensive care. There, at the very last moment,

unfamiliar doctors may off-load onto your relatives the crushing

moral burden of assenting to the discontinuance of life support.

The pathway to a natural death, on the other hand, is not so

easily found. The gate may be overgrown. You will have to use

your own moral compass to find it, guided by your guts, your

love, and whatever support group you can scrape together. You

will have to face your fears and let go of denial and hope. That

is what it takes to give yourself or someone you love a chance

at the kind of death our ancestors held in high esteem. You may

feel alone, but you will not be alone.

The Slow Medicine path to death is a path of acceptance.

It does not promise freedom from suffering. Its sufferings are

plainly visible. You will need to find your way to the path of

acceptance far sooner than you think, perhaps years before

the actual death takes place. This is what I learned in the

course of my parents’ journey through the valley of the shadow

of death.

Shepherding your parents—from independence to depen-

dence to contemplating death to dying itself—may take years. It

is a spiritual ordeal. Start looking for the path of acceptance at

the first body blow, the day you first recognize that your parent

will die someday. It could be the first stroke, or the first fall, the

first severe diabetic complication, or a diagnosis of an unam-

biguously fatal disease like kidney failure, emphysema, or pan-

creatic, ovarian, or metastasized cancer. It could be the day that

your mother or father loses the way home or forgets to turn off

a burner and melts a pot on the stove. Your parent has entered

the last stage of life. You cannot control whether they will die,

but you can influence the manner of their passing.

This is where the work starts. Not later. The work of death

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A Map through the Labyrinth 275

does not start on the day that someone says to you, “Your mother

is dying.” No one may ever say this. There will always be another

treatment.

Acceptance starts with opening your heart to the reality that

someone you love is approaching the end of his or her life. In

whatever form speaks to you, be it poetry, letters, songs, or prayer,

bring in the traditional, the holy, the beautiful. Have a birthday

party for your elderly friend and say what is in your heart rather

than saving it for the eulogy. Ask for a letter from your parent

describing the spiritual legacy he or she would like to pass on to

you. Remind yourself that this rite of passage is part of the human

condition and has been traversed by others before you. It is time

to find ways to say, “I love you. Thank you. Please forgive me. I

forgive you.” Write a legacy letter like the ones I wrote my father,

naming all he had done for me. You can do all this even if your

parent refuses to discuss the coming of death.

That way, when the time comes to say, “Good-bye”—and

that day may come more quickly than you imagined, or it may

come more slowly and require many thoughtful decisions along

the way—you are ready for that too. You may not be able to fix

your parent’s suffering or make them whole but you can heal

your relationships and help prepare everyone for death.

If you have said your good-byes, you will have a clearer

mind and heart for the hardest decisions you have ever made,

and the loneliest. In our striving secular culture, love has long

been defined as giving more—more presents, faster cars, more

medical fixes. The time comes when the most loving thing is to

actively advocate for doing less.

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Notes for

a New Art of Dying

Shepherding a parent, spouse, or friend through the last phase

of life encompasses six distinct, sometimes looping stages:

fragility, decline, disability, failing health, and active dying, and

bereavement, each one a rite of passage with its own physi-

cal and emotional tasks. These tasks include reducing expec-

tations of medicine; maximizing independence and postponing

disability; coping practically and emotionally with dependence;

preparing for death; attending at the deathbed; and mourning.

Below are some notes on each stage.