| |
A
Death of Her Choosing
As the law that made it possible is threatened, two sisters
remember their mother’s decision to die.
It was a Thursday in January. Outside the window, white winter sunlight
hung like cloth in leafless trees. A few yards away, the river slid
past with the low shine of liquid metal. No sound from the cars
crossing the nearby bridge entered the bedroom.
The woman in the bed, 68 years old and full of cancer, loved this
view of the Willamette River in every season. Loved water of any
kind, especially the ocean. Moments before, a poem by Annie Dillard
about being enveloped by the sea had been read into the quiet space.
Surrounding the bed were the woman’s five children, their
spouses, her sister, a nephew, and the woman’s longtime physician.
If there was sadness in the corners of the room, love filled its
center. Downstairs in the kitchen, a volunteer slowly opened 90
capsules of secobarbital and mixed a lethal dose of the fast-acting
barbiturate into a glass of liquid.
The woman’s son began to read the 23rd Psalm—the woman
was not religious, but nonetheless had asked to hear what she appreciated
as words of comfort and an exceptional poem. Just before “the
valley of the shadow of death,” she stopped him with some
annoyance.
“That’s not the right version,” she said. “I
want the King James.” Her children smiled. For those who knew
this intelligent, fiercely independent woman, the moment was perfectly
hers. The people of Oregon are well known for using the ballot to
steadfastly protect what they hold dear—old-growth forest,
bottle-free roadsides, their refusal to pump their own gas—and
even the right to die on their own terms.
Growing up in Portland, Ellen Sutherland Baltus ‘82 and Julie
Sutherland McMurchie ‘85 took this willingness to be the first
to pass limit-pushing legislation for granted—until 1994,
when Oregon became the only state in the nation to approve a law
allowing physician-assisted suicide for the terminally ill. That’s
when their mother, Peggy, first talked about choosing the manner
of one’s own death.
Peggy Sutherland was born in Pennsylvania and raised in a conservative
home in the privileged enclave of Philadelphia’s Main Line.
She grew into a strong-willed young woman, a philosophy major and
psychology minor at Mt. Holyoke College. She married a man who became
a cardiologist, and they had five children, each a year apart. She
raised her family in the soft rain and deep green of the Willamette
Valley, and she brought them up to be fearless and straightforward
about life—and, it would turn out, death. Sutherland’s
only serious mistake was to smoke three packs of cigarettes a day.
Baltus and McMurchie remember the moment in May of 1986 when their
mother was first diagnosed with lung cancer. They remember how calm
she seemed. They remember the invasive surgery that removed a lobe
of her lung and their mother’s pain during her long recovery.
Eventually Sutherland was pronounced cured and went on with life.
She never smoked a cigarette again. Never really talked much about
the cancer.
Sutherland divorced in 1994. Always an organized, detailed-oriented
person, she immersed herself in stocks and investing, telling her
daughters that she wanted to have her own means, never to be a burden
on her family. Later that year, when Oregon’s controversial
Death with Dignity Act was first passed, she mentioned how wonderful
it was to live in such a progressive state—a place where a
person who had reached the end now had the freedom to control that
end. It was an idea, and a law, perfectly matched to the kind of
person Peggy Sutherland was. Today, Oregon’s law is under
attack from a powerful foe: the Bush administration. The debate
begins with semantics.
Physician-assisted suicide is the term used by most of the public
and the media. Death with Dignity is the official title of the law—which
has in fact been affirmed twice by Oregon voters: the 1994 act was
challenged in 1997 and was upheld by a 60/40 margin. Supporters
call it compassionate, enlightened, and freeing. Few use the word
“suicide.”
Barbara Coombs Lee, of the nonprofit organization Compassion in
Dying and one of the original sponsors of Oregon’s law, writes:
“Let's make these distinctions clear: Suicide is a violent,
desperate act the dying might resort to when they feel trapped and
locked in the torture chamber of their illness. It isolates the
patient and leaves survivors shattered by guilt and anguish. Physician
assistance in dying is the direct opposite, a key to the door of
that locked room and a way to keep family and loved ones close during
a most intimate time. Providing the key can prevent violent and
premature suicide, because it gives the suffering patient peace
of mind about the final moments and the courage to go on living
for a while longer.”
Opponents, on the other hand, call the practice medically illegitimate,
a slippery slope, and even immoral. They have no trouble with the
s-word.
“I refer to it as ‘doctor-ordered suicide.’ That’s
a more realistic description of what it actually is,” says
Kenneth R. Stevens, M.D., president of the group Physicians for
Compassionate Care, leaders of the local medical opposition to Oregon’s
law. “The act of writing a prescription is not a passive thing.
It is a written order, a directive to the patient. By writing a
prescription for a lethal dose of medication, you’re not pulling
the trigger, but you’re giving the patient the loaded gun.”
“That is such an antiquated notion of the doctor-patient relationship,”
Lee responds. “Patients today regard physicians as wise counsel
and trust them to give their patients power to make their own decisions
based upon the physician’s best recommendations. Oregon’s
law allows, but does not require, physician participation. When
numerous safeguards are met, a doctor is authorized—but absolutely
not required—to prescribe life-ending medication that the
patient may then self-administer at a time and place of his or her
own choosing. The option should be fully integrated into compassionate
end-of-life care.”
But Stevens argues that physician-assisted suicide does not serve
a legitimate medical purpose. “The ethical and moral statements
that are part of a physician’s training indicate that we are
not to take the life of a patient,” he says. “It is
contrary to our ethics, and an assumption of power that physicians
should not be given. Look, there is no law against committing suicide,
but that’s not what this act is about. People say they want
the right to die, but really what they’re saying is ‘I
want someone to kill me.’ Everyone has the right to die, but
trying to legitimize this by making it a medical practice is improper.”
The American Medical Association has been solidly against physician-assisted
suicide from the beginning. Its position includes the assertion
that the practice “would undermine the physician-patient relationship
and the trust needed to sustain it, would alter the role of physicians
in society, and would endanger the value our society places on life.”
It is clear that physician-assisted suicide, like abortion, places
doctors on the exposed and shifting front line of a white-hot moral
issue. But even beyond the proper or improper role of physicians,
opponents fear that with assisted suicide in place, the aged or
infirm could be “coerced” to die by family members,
or that social pressures might evolve from the right to die to the
duty to die. Others are afraid the practice invites abuses, especially
in the case of mentally or economically challenged patients.
But many ethicists, even those personally opposed to physician-assisted
suicide, are beginning to believe that these fears are unsupported.
One example is Daniel Lee (no relation to Barbara Coombs Lee), an
author and ethics professor at Augustana College in Illinois. Lee
has long been staunchly opposed to physician-assisted suicide. But
in recent years, the reality of the Oregon law and its results have
led him to ask what are, for him, difficult questions.
“Do those of us,” Lee writes, “with deep reservations
about the morality of physician-assisted suicide have any business
using the coercive power of government to try to prevent those who
disagree with us from doing what they believe is right? Are there
any compelling arguments to justify placing legal roadblocks in
the way of terminally ill individuals who wish to end their suffering
by ending their lives, provided such decisions are made only after
thoughtful, careful deliberation in an environment devoid of social
pressure?”
Lee makes the point that Oregon’s law “specifies an
elaborate procedure consistent with the most rigorous standards
of voluntariness,” with provisions, including the 15-day waiting
period and multiple opportunities to rescind the request, intended
to make it very clear to those contemplating ending their lives
that they are under no pressure to do so. When physician-assisted
suicide is presented in this cautious, completely voluntary manner,
it is, in Lee’s opinion, a matter of individual choice, not
a decision forced or influenced by social pressure.
“There is another firewall—one that is also built into
the Oregon law—that might be even more significant,”
Lee adds. “This is the requirement that lethal drugs be self-administered,
rather than administered by the prescribing physician or anyone
else. If physicians, family members, and others are prohibited from
administering lethal drugs to terminally ill patients, and that
restriction is rigorously enforced, nonvoluntary euthanasia is precluded.”
Lee concludes that “the arguments in favor of continued prohibition
of physician-assisted suicide are not particularly compelling. Those
of us opposed to it would do well to focus our efforts on helping
others discover the meaning and hope that are possible in life.
If we were to do a better job of responding to suffering individuals
in a loving, caring manner, physician-assisted suicide would in
all likelihood be an option rarely, if ever, chosen.”
And that is the one place in which supporters, opponents, and the
reality of Oregon’s law itself find agreement: very few people
want to die. Early in 2000, Peggy Sutherland read a magazine article
about improved CT scans and simply decided to have one. She had
no symptoms, no problems. But the scan revealed more lung cancer—a
different form, unrelated to what she’d had 14 years before.
Another surgery was done, and several weeks later a follow-up scan
was scheduled. McMurchie and Baltus were with her when the results
came back—the CT showing cancerous hot spots like spiders’
nests throughout her lungs.
“We were sitting in that little room,” McMurchie remembers,
“and when the results came back Ellen and I fell apart, but
mom stayed so controlled. I think that in the back of her mind she’d
been expecting it ever since the first cancer.”
In April of that year, a third lung surgery was performed, more
extensive than the first two. Although the surgeon again declared
her cured, Sutherland didn’t recover quickly or well. It was
during this time that one of her sisters was diagnosed with an advanced
case of the same cancer that plagued Sutherland. Over the summer,
she watched her sister weaken and die: hospitalized for three months,
at the end having no control over her bodily functions and in great
pain unrelieved by the morphine.
“It was a very grim experience, and it’s clear my mom
didn’t want that for herself—or us,” says Baltus.
“She was very much into open communication about tough issues,
and she began talking about assisted suicide even before her final
diagnosis.”
Sutherland, far from cured, was diagnosed as terminal in August
2000. Through the late summer and fall she underwent different therapies
and rounds of palliative care. As would be expected for a woman
whose ex-husband, son, and one daughter were all physicians, she
got the very best that medicine has to offer. And, as would be expected
in a family with so much medical expertise, everyone was realistic
about the fact that medicine couldn’t offer much.
“She made all of us sit down with her and talk about her estate
and how she would take care of everything, how she wouldn’t
be a burden,” McMurchie says. “I tried to get her to
move in with me, but she would have none of that. She was feeling
okay, still very much present in her life. She was religious about
her Friday morning bridge game, and going to the weekend house at
the coast. For those last few months, she was fully alive.”
And then one day in the middle of December Sutherland awoke and
couldn’t get out of bed, could barely sit up. The pain was
intense. She would never get out of bed again. An ambulance took
her to the hospital, where she spent the next three weeks. A morphine
pump was implanted in her body, but a dose of the drug large enough
to kill the pain made her unconscious. Suffering or out cold—nothing
in 21st-century health care offered a third choice, and to a woman
like Sutherland this was not life.
McMurchie and Baltus remember spending a dark New Year’s Eve
in the hospital with their mother and the rest of the family. In
early January, Sutherland was sent home and hospice care was arranged.
She had endured three major surgeries, three hospitalizations for
pain, two rounds of chemotherapy and radiation, and countless CTs,
MRIs, PETs, and bone scans. The day after she returned to her view
of the river, Sutherland looked at her children and said quietly,
“I’m done.” Since 1998, about one in every 1,000
deaths in Oregon has been by assisted suicide; by the end of 2002,
a total of 129 people—fewer than proponents expected and opponents
feared. Data from the Oregon State Health Division show that most
who chose this route were older, well-educated, insured, enrolled
in hospice care, and suffering from terminal cancer or amyotrophic
lateral sclerosis. Almost all died at home; roughly half had a physician
present. Most became unconscious within 10 minutes and died within
30 minutes; one took 37 hours.
Their three most common end-of-life concerns were loss of autonomy,
decreasing ability to participate in enjoyable activities, and loss
of control over bodily functions.
It is often argued that better pain relief would make assisted suicide
unnecessary, but Oregon’s results don’t support that
contention: fewer than one in four who chose the option said they
feared inadequate pain control.
In 2002, 58 prescriptions for lethal medication were written by
33 Oregon doctors. Of the patients who received the prescriptions,
36 died from the drug, 16 died from their disease, and six were
still alive at the end of the year.
The 38 Oregonians who died by assisted suicide last year (two patients
died using prescriptions they received in 2001) represented an 81
percent increase from 2001 and a five-year high. It is far too soon
to tell whether that number is a statistical aberration or the beginning
of a trend, but it will no doubt add fuel to the fire—and
urgency to U.S. Attorney General John Ashcroft’s attempt to
dismantle Oregon’s law.
Ashcroft ruled in November 2001 that the Death with Dignity Act
was a violation of federal drug laws (the barbiturates used are
DEA-controlled substances) and authorized federal agents to prosecute
Oregon doctors who prescribe lethal doses. Ashcroft’s legal
challenge was subsequently rejected by a U.S. Circuit Court judge
in April 2002, and the law remained in effect. The Bush administration
appealed, arguments were being heard in the Ninth Circuit Court
as OAM went to press, and by the time you read this, a decision
may have been rendered. Some 25 amicus curiae briefs were filed
on both sides of the case, with hundreds of signatories—everyone
from the relatives of people who chose assisted suicide (including
McMurchie and Baltus) to physicians to legal experts to politicians.
Regardless of whether Ashcroft’s appeal is rejected or upheld,
this case will very likely find its way slowly but inexorably to
the U.S. Supreme Court—where proponents see hope in the sanctity
of states’ rights and opponents see hope in what many view
as the court’s increasingly conservative and political nature.
In the meantime, throughout the appeals process, Oregon’s
law will probably remain in force. According to Compassion In Dying’s
Lee, “While the ball’s still in play, the courts tend
to favor the status quo.”
It could be as long as three years before the issue reaches the
Supreme Court. Terminal illness, on the other hand, tends to be
in a bigger hurry. After Sutherland announced her decision, and
after her physician son and daughter took some extra time to come
around to it, her family supported her.
“We talked to our internist, because we didn’t know
anything about assisted suicide,” Baltus remembers. “He
put us in touch with Compassion In Dying, and they sent us the paperwork
and talked us through it.” The organization then made available
a team of volunteers, including experts in mental health and end-of-life
care. As Compassion In Dying makes clear, information about obtaining
medication for a hastened death “is provided only to those
patients who, in the judgment of the case managers, demonstrate
a rational, voluntary, and considered approach to end-of-life decisions.”
Once Sutherland’s physician had certified that she was terminal,
Sutherland herself made both an oral and a written request for the
medication in the presence of two witnesses (one of whom must be
a non-relative). Two physicians then had to certify in writing that
she was of sound mind and not depressed. She was informed of every
end-of-life care option available and of the realities of the life-ending
medication. At every step she was offered a chance to change her
mind. A 15-day waiting period then began. This was the most difficult
time for Sutherland and her family.
“I wish we had requested the medication sooner,” says
McMurchie. “The whole time she was in the hospital we were
so focused on her living longer. None of us wanted assisted suicide.
You even, under the surface, hope she’ll die without needing
it. Not acting sooner is my one regret—the waiting period
is a good thing, but by then mom was ready to go, and those final
two weeks were very hard. She was in great pain and the only way
to control it was to knock her out, which she didn’t want.
She never really slept at night, she was seeing things, having lots
of problems with bowel control, coughing up blood. She would wake
up moaning, saying that we ‘just didn’t understand the
kind of pain she was in and why wouldn’t we just let her go.’
She spent a lot of time crying, her dignity was gone, and still
we had to wait.”
At last the final request was made. The day before, Sutherland had
slipped into a near coma, and the family thought how terrible it
would be if, after waiting for 14 days, she wouldn’t be able
to communicate. But on the morning of the 15th day, Sutherland suddenly
awoke clear as a bell, more aware and talkative than she’d
been for a month.
McMurchie went with Sutherland’s doctor to pick up the prescription.
There are only two pharmacies in the entire city that will fill
a lethal prescription, so it was a long drive. The pharmacist wouldn’t
look at them while they paid for the drugs.
“People don’t understand how much this has to be the
individual’s own choice under the Death with Dignity law,”
says Baltus. “There’s nothing impulsive about it. The
person has to be aware and in control. I don’t know even now
what I’d do in my mother’s situation, but it was a choice
that made sense to her, that was totally consistent with who she
was. She had been thinking it through for a long time.”
“I think this was an amazing gift for our family,” McMurchie
emphasizes, “that we were all able to be there together and
say good-bye. Simply having the option for death with dignity allowed
my mother and our family to spend her last moments really having
a relationship. Really living, not just standing a deathwatch. It
was her final deliberate, graceful act.” Cars flowed over
the gray-green arch of the bridge. The river’s cold current
pushed north, past the trees on the far shore, past the boats moored
below, past the bedroom.
The people around the woman in the bed had read to her, hugged her,
kissed her. They would forever remember the moment as peaceful,
loving, profound. There were no intense good-byes—this was
Peggy Sutherland’s ritual and she wanted none of that. Besides,
they’d all been said already.
But when the glass containing the barbiturate was placed beside
her bed, and Sutherland grabbed it and brought it to her lips like
lemonade on a hot summer afternoon, her children involuntarily jumped
forward.
“Jeez, mom, can you just wait two seconds?” someone
said.
But Sutherland was ready. She drank the liquid, closed her eyes,
and fell asleep in three or four minutes. The room was silent; a
few people left. After perhaps 15 minutes, her doctor stepped forward
and took Sutherland’s pulse. Not yet, he indicated. Ellen
Baltus decided then that she would stay with her mother until the
funeral home people came—for some reason she just couldn’t
stand the thought of her lying there all alone.
Another minute or two, and the doctor took Sutherland’s pulse
again. He nodded to her family. He recorded the time of death: 10:23
a.m. It was a Thursday in winter, January 25, 2001.
|