In Oregon, Choosing Death Over Suffering

[Guest guest]

http://www.nytimes.com/2004/06/01/health/policy/01suic.html?ex=1086667200&am

p;en=7c49ff23b0d3d40e & ei=5062 & partner=GOOGLE

In Oregon, Choosing Death Over Suffering

By JOHN SCHWARTZ and JAMES ESTRIN

Published: June 1, 2004

ORTLAND, Ore. - Arthur W. sits in his study, breathing oxygen through

a nose clip and pausing frequently for the coughs that rack his body.

" I'm not suicidal, " he said. " I'm sane. "

Mr. , 86, has been living with the profound pain of chronic

obstructive pulmonary disease for years. Now he wants to end his life - not

today, not tomorrow, but when he chooses - under the provisions of Oregon's

Death With Dignity law.

" When the time comes, " he said, " I'm going to swallow that bottle of Lethe

and say goodbye. "

He is no stranger to death, having fought in World War II and in Korea. And

he craves being in control. His house is snaked through with a clear plastic

tubing system that he devised to carry his oxygen from room to room without

having to drag a tank around behind him.

He does not seem, in other words, to be the depressed, languishing patient

many might expect to see applying for the Oregon program.

The state's law allows adults with terminal diseases who are likely to die

within six months to obtain lethal doses of drugs from their doctors. In the

six years since it went into effect, surprises have been common, including

the small number of people who have sought lethal drugs under the law and

the even smaller number of people who have actually used them. In surveys

and conversations with counselors, many patients say that what they want

most is a choice about how their lives will end, a finger on the remote

control, as it were.

Last week, the United States Court of Appeals for the Ninth Circuit upheld

Oregon's law, ruling that Attorney General Ashcroft had overstepped his

authority in trying to punish doctors who prescribed suicide drugs under the

law.

And while there is still strong opposition around the country to laws like

Oregon's, support within the state has grown over the years. Oregon voters

passed the law in two separate referendums. Even some former opponents say

the widespread abuses predicted by some have not emerged. And studies are

helping researchers and policymakers understand how it really works in

practice.

Perhaps the most surprising thing to emerge from Oregon is how rarely the

law has actually been used.

" We estimate that one out of a hundred individuals who begin the process of

asking about assisted suicide will carry it out, " said Ann ,

executive director of the Oregon Hospice Association.

Since 1997, 171 patients with terminal illnesses have legally taken their

own lives using lethal medication, compared with 53,544 Oregonians with the

same diseases who died from other causes during that time, according to

figures released by the Oregon Department of Health Services in March.

More than 100 people begin the process of requesting the drugs in a typical

year. Doctors wrote 67 prescriptions for the drugs in 2003, up from 24 in

1998. Forty-two patients died under the law in 2003 compared with 16 in

1998.

Many patients say they want to have the option to end their lives if the

pain becomes unbearable or if they are sliding into incompetence while still

thinking clearly.

" I'd say it's less than 50-50 that I'd ever do this thing, " said Don ,

a retired school administrator with advanced prostate cancer who has not yet

received his pills.

A Desire to Be in Control

A second surprise has been the kind of people who use the law. They are not

so much depressed as determined, said Ganzini, a professor of

psychiatry at Oregon Health Sciences University. She led a recent survey of

35 doctors who had received requests for suicide drugs. The doctors

described the patients as " feisty " and " unwavering. "

A third lesson is that for most of those who seek assisted suicide, the

greatest concern appears not to be fear of pain but fear of losing autonomy,

which is cited by 87 percent of the people who have taken their lives with

the drugs. Only 22 percent of the patients listed fear of inadequate pain

control as an end-of-life concern, perhaps a sign that pain management has

improved over the years.

And though opponents of the law argued that patients would feel pressured by

families and even insurers to end their lives early out of financial

concerns, so far concerns of being a burden to family have been cited by 36

percent of patients, and financial concerns by just 2 percent. The surveys

show that the standard version of health care for terminally ill patients

might not be what these patients are looking for, Dr. Ganzini said. The

standard version of care says, in effect, " we're going to take care of you, "

she said. But " for them, the real problem is other people taking care of

you. "

Ms. said the surveys were changing the hospice association's

practices.

In 1994, the group opposed the Death With Dignity law. Now the hospices work

directly with programs like Compassion in Dying, a group that is involved in

75 percent of Oregon's assisted suicides. Thanks to the surveys of patients

seeking assisted suicide, Ms. said, her organization learned that

half the people who rejected hospice care did so because " they thought that

hospice was condescending or arrogant. "

Now the hospices fit their treatments to patients who seek assisted suicide

and emphasize that their wishes will be respected, she said.

Opponents of the Oregon law like Dr. s, chairman of the

department of radiation oncology at the Oregon Health and Science University

in Portland, say it violates the fundamental tenet of medicine. Dr. s

argues that doctors should not assist in suicides because to do so is

incompatible with the doctor's role as healer.

" I went into medicine to help people, " he said. " I didn't go into medicine

to give people a prescription for them to die. "

Dr. s heads an organization, Physicians for Compassionate Care, that

opposes assisted suicide and the Oregon law. Members of his group, he said,

tend to be " people of faith, " who believe that assisted suicide violates

their religious principles. But they base their opposition to the law on

moral and ethical grounds, arguing that it leads down a slippery slope

toward euthanasia and patient abuses.

He recalled the struggle of his wife, who died of cancer in 1982. In the

weeks before she died, he said, her doctor offered her an " extra-large

prescription " for painkillers.

" As I helped her into the car, she said, 'He wants me to kill myself,' " Dr.

s recalled. " It just devastated her that her doctor, her trusted

doctor, subtly suggested that. "

Others who initially opposed the law, like the hospice group, say they have

learned to live with it. , for example, took out a loan in

1994 to fight the Death With Dignity act. His daughter has Down syndrome,

and he said that at the time he could see a straight line between voluntary

assisted suicide and forced euthanasia for the handicapped.

Now Mr. says he has not seen any abuses. " I don't see that there's

ever been a scandal, " he said, " and the numbers are not huge. " Still, he

does not support the law. " If it was up to me, I'd say no, but I don't think

there's any great human rights crisis here, " he said.

Support for the law crosses ideological lines, said van Aelstyn, a

lawyer in San Francisco who works withCompassion in Dying. Some commentators

have characterized the movement as a liberal cause, but " to most of the

people exercising it, it's a libertarian issue, " he said. " Many of our

clients are die-hard Republicans who don't want government interfering in

their lives. "

That certainly describes Mr. , who calls himself a " staunch

conservative " and says Mr. Ashcroft is " dead wrong " about the Oregon law.

The support for the law in Oregon, Mr. said, reflects the pioneer

spirit that flows from the wagon trains that brought the early settlers.

" They were pretty well-educated, family-oriented people willing to hack a

new life out of this wilderness, " he said. " Pretty independent folks. "

Those who drafted the Death With Dignity Act say they did not try to come up

with a political document that would warm the heart of Jack Kevorkian, or

that would permit euthanasia, which is repugnant to a significant portion of

the population. Instead, they say, they carefully drew up a law that they

believed would gain support of everyone except the most determined

opponents, and that was loaded with safeguards against abuse.

Doctors have long made lethal doses of drugs available to patients inclined

to end their struggle against disease, said Eli Stutsman, president of the

board of the Death With Dignity National Center.

" We took something that was already happening, and we wrote a law around

it, " he said.

Opponents had argued that Oregon would become a magnet for people seeking

suicide, so the law's provisions were restricted to the state's residents.

The law also sets a high barrier to getting the life-ending medications,

giving patients the chance to change their mind up to the last moment. A

patient must make two oral requests for the drugs and one written request

after a 15-day waiting period. Two doctors must determine that the patient

has less than six months to live, a doctor must decide that the patient is

capable of making independent decisions about health care and the doctor has

to describe to the patient alternatives like hospice care.

The law also requires that the drugs be self-administered by the patient,

rather than given by a doctor or family member, to avoid involuntary

euthanasia. The death certificate, under the law, must state the cause of

death as the underlying disease, not suicide.

That provision pleases Mr. .

" I don't like the word 'suicide,' " he said, because " if I'm really on a

path, the natural path " toward death, and " just hastening it a little bit, I

don't call that suicide. "

Mr. 's family supports him in his wishes, although his wife, Viola,

says she is against the general idea.

" This is his thing, not mine, " she said. " It's not the way I'd go. "

Her views flow from her religious beliefs, she said.

" I'm inclined to think that I have a purpose in life until I go, " she said.

" God has a plan for me, and I'm here until he says it's time to go. "

She said she liked her husband's idea of having family members gather in a

kind of living wake, however.

" That would be fine, " she said. " You should celebrate the life instead of

worry about the death. "

A Last Goodbye

Although the idea of an end-of-life celebration strikes some people as

unseemly or exhibitionist for a most private act, many patients say it is

natural to want to bring family together for a last goodbye. Most patients

call for such a gathering, although relatively few take the poison in the

presence of their families.

Barbara Coombs Lee, the president of Compassion in Dying Federation, said

she saw the suicides not as " an impulse to self destruction, " but as " an

impulse to self preservation - preservation of the self I cherish. "

That point of view clearly grates on Dr. s. Although he said he did

not want to " put people down or label people, " he added, " the 'P' word is

not 'pain.' The 'P' word is 'pride.' " He explained, " Rather than being

death with dignity, it's death with vanity. "

But Dr. Marcia Angell, a former executive editor of The New England Journal

of Medicine and a supporter of doctor-assisted suicide, said: " He can call

it vanity. Somebody else might call it admirable independence. "

If anything, Dr. Angell said, the Oregon law may be too restrictive and may

not reach everyone who could benefit from it.

" I am concerned that so few people are requesting it, " she said. " It seems

to me that more would do it. The purpose of a law is to be used, not to sit

there on the books. "

Mr. Stutsman, one of the law's authors, said it helped people who never end

up holding a cup of barbiturate solution in their hands.

" They get the comfort of knowing that the Oregon Death With Dignity Act is

there if they need it, " he said. Although no state has passed its own

version of the act, " Oregon is leading the national debate, " he said.

Compassion in Dying claims that the Oregon law prevents violent suicides and

the pain such deaths cause families. The patients say, however, that to some

extent, the 10-year furor over the law is academic; it is not so hard to

die, and people do it around the world without the benefit of laws like that

passed by the Oregon Legislature.

Mr. , for example, said, " If it gets too bad, I might just stop

eating, " and refers jokingly to his " Ashcroft kit, " a sturdy plastic bag and

a roll of duct tape that he could use to asphyxiate himself. But, he added,

that would be illegal, and " I just think that's bad karma to do it that

way. "

Other patients say they know a good death from a bad death, and know which

kind they prefer. Lovelle Svart, a retired newspaper librarian, said she

recently witnessed a horrifying auto accident on the highway.

" Not that way. " she recalled saying to herself. " Not the way I want to go. "