In Defense of Dignity

I would need the room for a week. That’s what I told the front-desk
clerk at the Extended Residence Stay America Whatever when I checked in
that Sunday night.

At least a week, I said, maybe longer.

My mother had already been in the hospital across the street for
nearly a week by the time I arrived in Tucson. She was no stranger to
hospitals over the last few years. She’d wake up to find that her
breathing was more difficult, or that some new infection was exploiting
her weakened immune system, or that some new debilitating side effect
from the powerful drugs that were keeping her alive had emerged. My
stepfather would rush her to a hospital, and she would come home a few
days later having accepted some previously feared
development—being hooked up to an oxygen tank, having to use a
walker—as her “new normal.”

The plan: I would stay in Tucson for three or four days and help my
stepfather and aunt look after my mother. Then my brother Billy

would fly in from Chicago, take over the helping-out duties and my
hotel room, and we’d figure out what to do next.

Before going to the hotel on Sunday night, I got to play cards with
my mother and read with her, and things were looking less grim than
they had when my aunt called me in Seattle earlier that day and told me
to get on an airplane. My mother wasn’t getting better, but she wasn’t
getting worse.

My mother had pulmonary fibrosis, a degenerative lung condition, and
we knew enough about the disease to know that dramatic turns for the
worse were a possibility. She knew that pulmonary fibrosis would
eventually end her life, and she’d done some research into just what
sort of an end she could expect. It wasn’t going to be pretty. Her
lungs were gradually filling with scar tissue. She would, when her time
came, slowly and painfully suffocate to death over a period of hours or
days. But eight weeks before she wound up in a sprawling, dung-colored
hospital in sprawling, dung-colored Tucson, my mother’s doctors had
given her two to five years to live.

She’d recently marked the five-year anniversary of her diagnosis, an
anniversary very few pulmonary fibrosis sufferers live to celebrate.
She was terrified, as her fifth anniversary approached, that she
wouldn’t “beat five.” But her spirits lifted when her anniversary came
and went, and her doctors gave her years, not months or weeks, to live.
That’s when she decided to go on this trip with her husband, driving to
California and New Mexico and Arizona. She was looking forward to
attending her first grandson’s high-school graduation, her grade-school
class’s 50th reunion, a Broadway show.

The Seattle Post-Intelligencer‘s Joel Connelly has written
several columns—and several thousand words—blasting
Initiative 1000, the November ballot measure in Washington State that
would make it legal for physicians to prescribe lethal doses of
medication to terminally ill patients. Connelly doesn’t like the
measure because he believes the purpose of a “democratic society” is to
“safeguard and enhance life, especially among the youngest, the
weakest, and the suffering”; because he worries that the movement might
next “seek to expand conditions for the legal ending of life, as has
been done in the Netherlands”; and because out-of-state money has been
collected by supporters of Initiative 1000.

“Should Washington be a launching pad for a movement that seeks to
transform a crime into a ‘medical treatment’?” Connelly thunders.

KUOW has been covering the debate over I-1000, too. In a recent
report, two widows were interviewed about the deaths of their husbands.
After watching their spouses die, one widow planned to vote for I-1000
and the other planned to vote against it.

The woman voting for the initiative—whose husband died of
brain cancer—wants terminally ill people to have a choice at the
end of their lives, a choice to end their suffering and hasten an
inevitable, rapidly approaching death. The woman voting against the
initiative wants—well, she wants what we all want. She wants to
have a good death, a peaceful death, a death like the one her husband,
um, enjoyed.

“I would like to be enveloped in the love of a good caregiver I
would get,” she says.

Don’t we all want that kind of death? Wouldn’t it be wonderful if
each of us could enjoy a Hallmark death? Wouldn’t it be ideal if each
of us passed from this life into the next—aka “the
void”—enveloped in the love of good caregivers and under the care
of competent “pain management” professionals? But not everyone is so
lucky. Some of us have to endure deaths that are gruesome and
protracted and excruciatingly painful, deaths that involve pain that
cannot be “managed,” deaths that our loving caregivers can only stand
helplessly by and witness.

“You don’t know how you’re going to feel at the end of your life,”
the widow planning to vote for I-1000 says. “I want to have the choices
available to me.”

Choices.

Exactly. If I-1000 is approved by Washington State voters, the widow
opposed to the initiative will not be compelled to end her life with
the assistance of a physician. She can choose pain meds and the love of
caregivers and die a “natural” death. (What’s so “natural” about pain
management anyway?) But if I-1000 is rejected, the widow who plans to
vote in favor of it will not have the same choice. She will not be able
to choose to end her life, and end her suffering, if the pain becomes
too much for her to bear.

That’s what the debate about I-1000 is really all about: your body,
your death, your choice. The passage of I-1000 doesn’t impose anything
on terminally ill people who reject physician-assisted suicide for
religious reasons. But the rejection of I-1000 imposes the values of
others on terminally ill people who would like to make that choice for
themselves, who should have a right to make that choice for
themselves.

And, I’m sorry, but there’s nothing about physician-assisted
suicide—or, as it should be called, end-of-life pain
management—that precludes the presence of loving caregivers. You
can be surrounded by love and have access to the best medical care
available and still conclude—reasonably and rationally—that
you would rather not spend the last few moments of your life in
blinding pain or gasping for breath or pumped full of just enough
morphine to (hopefully) deaden your pain without deadening you.

On Monday morning, after eliminating all other possibilities (a
virus, pneumonia, some rare desert fungus), a doctor pulled me and my
stepfather out of my mother’s room. They were out of options. Nothing
more could be done. Her battered lungs were failing; one had a widening
hole in it. Amazingly, the doctor didn’t say, “It’s over, this is it.”
He laid out the facts and we stared at him dumbly for that
world-without-end moment, and then one of us—my stepfather, me, I
don’t remember—finally said, “So this is it?”

The doctor nodded.

We somehow managed to hold it together, me and my stepfather. We
didn’t have the luxury of breaking down. He stepped out of the
intensive-care unit to tell my sister and my aunt the news, to confer
about how we would break the news to my mother, and to call a priest. I
stepped back into her room to sit with her, to hold her hand. I didn’t
tell her what I knew; it wasn’t my place. I would sit with her and wait
for my stepfather to return.

Suddenly, the doctor was at the door to my mother’s room again. He
waved me out into the hall. He needed a medical directive. Immediately.
Her vital signs were tanking. If we were going to put a tube in her,
and put her on machines that could breathe for her, it had to be now.
Right now. So it fell to me to walk back into my mother’s room, tell
her she was going to die, and lay out her rather limited options. She
could be put under and put on machines and live for a day or two in a
coma, long enough for her other two children to get down to Tucson and
say their good-byes, which she wouldn’t be able to hear. Or she could
live for maybe another six hours if she continued to wear an oxygen
mask that forced air into her lungs with so much force it made her
whole body convulse. Or she could take the mask off and suffocate to
death. Slowly, painfully, over an hour or two.

It was her choice.

“No mask,” she said, “no pain.”

Her nurse promised to give her enough morphine to deaden any pain
she might feel after my mother made her choice: She would take off the
mask. She would go now. I told the doctor and then ran sobbing—no
longer trying to hold it together—into the waiting room to get my
stepfather, my sister, and my aunt. Things were worse than they were
five minutes ago. Get in here, I said, get in here now.

We said our good-byes—doesn’t that sound dignified? But her
mask was still on and her body still convulsing. Good-byes reduced my
affable stepfather to wracking sobs; good-byes sent me and my sister
falling to the floor beside our mother’s deathbed. We held a phone up
to my mother’s ear so she could hear one of my brothers shout his
good-bye over the whir and thump of the oxygen machine, while we tried
desperately to get my other brother on the phone.

In the midst of all of this, a hospital orderly breezed into my
mother’s room and handed her a menu to fill out for tomorrow’s meals.
It was a staggering blow, this sudden and unwelcome reminder that
tomorrow was coming and my mother wouldn’t be part of it, and it felt
like we had all just been punched in the stomach. After a
this-can’t-be-
happening pause, my stepfather rose from his chair
and barked so loudly at the orderly that she dropped the menu, which
fluttered to the floor under my mother’s bed.

Then my mother was ready. The mask came off, she held tight to our
hands, and the morphine went in. Her grip slackened. My mother was
still alive, in there somewhere, beyond our reach. Was she in pain? We
don’t know. She couldn’t talk to us now, or focus on us, but she was
awake, her eyes open. She gasped for breath, again and again, and we
sat there, traumatized, waiting for her heart to stop, waiting for the
very first sound that I had ever heard—my mother’s heart
beating—to go silent.

People must accept death at “the hour chosen by God,” according to
Pope Benedict XVI, leader of the Catholic Church, which is pouring
money into the campaign against I-1000.

The hour chosen by God? What does that even mean? Without the
intervention of man—and medical science—my mother would
have died years earlier. And at the end, even without assisted suicide
as an option, my mother had to make her choices. Two hours with the
mask off? Six with the mask on? Another two days hooked up to machines?
Once things were hopeless, she chose the quickest, if not the easiest,
exit. Mask off, two hours. That was my mother’s choice, not God’s.

Did my mother commit suicide? I wonder what the pope might say.

I know what my mother would say: The same church leaders who can’t
manage to keep priests from raping children aren’t entitled to
micromanage the final moments of our lives.

If religious people believe assisted suicide is wrong, they have a
right to say so. Same for gay marriage and abortion. They oppose them
for religious reasons, but it’s somehow not enough for them to deny
those things to themselves. They have to rush into your intimate life
and deny them to you, too—deny you control over your own
reproductive organs, deny you the spouse of your choosing, condemn you
to pain (or the terror of it) at the end of your life.

The proper response to religious opposition to choice or love or
death can be reduced to a series of bumper stickers: Don’t approve of
abortion? Don’t have one. Don’t approve of gay marriage? Don’t have
one. Don’t approve of physician-assisted suicide? For Christ’s sake,
don’t have one. But don’t tell me I can’t have one—each
one—because it offends your God.

Fuck your God.

They gave my mother some more morphine—not enough to kill her,
only enough to deaden the pain while her lungs finished her off. Still:
Was she in pain? I’m haunted by the thought that she could have
been in pain—the pain we promised to spare her—but had no
way to tell us, no way to ask for more painkillers, no way to let us
know that she needed us, that she needed our help, that she needed us
to do whatever we could to hasten her inevitable death and end her
suffering.

I don’t know what my mother would have done if she had had the
choice to take a few pills and skip the last two hours of her life. She
was a practicing Catholic. But she was also pro-choice, pro–gay
marriage, pro–ordaining women. If she could’ve committed suicide,
by her own hand, with a doctor “assisting” only by providing her with
drugs and allowing her to administer them to herself, after saying her
good-byes, I suspect she would have done so, so great was her fear of
dying in pain.

I do know that she should have been allowed to make that choice for
herself. It’s not a choice that Joel Connelly—or the Catholic
Church—had a right to make for her.

I also know that, if my mother needed my help, I would’ve held a
glass of water to her lips, so that she could swallow the pills that
would’ve spared her those two hours of agony.

And that shouldn’t be a crime.