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					                                                   Oregon

                                                  Chronology

1980:    The Hemlock Society is founded in Eugene, advocating a right to doctor-assisted suicide. Its
national membership eventually hits 50,000. Founder Derek Humphry goes on to write a best-selling
book, "Final Exit."


1990:    Dr. Jack Kevorkian assists in the death of Janet Adkinds of Portland, who has Alzheimer's
disease. It is the first of dozens of deaths linked to Kevorkian.


1991:    Oregon state Sen. Frank Roberts introduces a bill to legalize assisted suicide. The bill fails in
committee. Washington voters reject, 51 percent to 49 percent, the nation's first state referendum
attempting to make doctor-assisted suicide legal for the terminally ill.


1992:   California voters defeat, 54 percent to 46 percent, a measure that would have allowed physicians
to hasten death through lethal medications.


1993:    The Oregon Legislature approves Senate Bill 286, and Gov. Barbara Roberts signs it into law. It
enables terminally ill patients or family members to receive as many painkilling drugs as needed to relive
illness-related suffering. The bill stops short of legalizing physician-assisted suicide. Oregon Right to Die
is founded to back a doctor-assisted suicide initiative.


1994:    Oregonians approve Measure 16, making the Death With Dignity Act the nation's first law
permitting doctor-assisted suicide.


1995:    A federal judge in Eugene rules the Oregon law unconstitutional, saying it fails to protect a
vulnerable class of people, the terminally ill.


1996:    The 9th U.S. Circuit Court of Appeals says a Washington law banning doctor-assisted suicide is
as unconstitutional as laws banning abortion. The 2nd Circuit finds a similar law in New York
unconstitutional.


1997:    The issue spurs a great deal of activity: -- The 9th Circuit gives the Oregon law the go-ahead. It
says plaintiffs have not shown they have been harmed by a law that hasn't gone into effect. Therefore,
they have no legal standing. Opponents of assisted suicide vow to appeal to the U.S. Supreme Court.


-- President Clinton signs legislation barring the use of federal money for doctor-assisted suicide.
-- Oregon's assisted-suicide law takes effect Oct. 27, 1997, when the 9th U.S. Circuit Court of Appeals
lifts the injunction that blocked it.


-- Measure 51, referred to voters by the Legislature and asking whether to repeal the Death With Dignity
Act is resoundingly defeated.


-- The U.S. Supreme Court upholds New York and Washington state laws banning the practice.


1998:     U.S. Attorney General Janet Reno reverses the DEA position, saying federal law does not
prohibit doctors in Oregon from participating in assisted suicide. Legislation introduced in Congress to
block the Oregon law falters.


Feb. 17, 1999:       The Oregon Health Division issues its first report on the results of the assisted-suicide
law. The report shows 15 people are known to have died by assisted suicide in 1998.


June 17, 1999:        Reps. Henry Hyde, R-Ill., and Bart Stupak, D-Mich., and Sen. Don Nickles, R-Okla.,
introduce the Pain Relief Promotion Act. It would reword the federal Controlled Substance Act to specify
that prescribing controlled substances for assisted suicide is illegal.


Oct. 27, 1999:       The House passes the Pain Relief Promotion Act 271-156. It would reword the federal
Controlled Substance Act to specify that prescribing controlled substances for assisted suicide is illegal.
the bill moves tot he Senate, where it has support, but proponents say the timing is bad and urge a delay
in considering it.


April 6, 2000:       The Senate Judiciary Committee prepares to send the act to the floor for a vote. Sen.
Ron Wyden, D-Ore., threatens a filibuster.




                                            The First Two Years

International Anti-Euthanasia Task Force


ASSISTED SUICIDE IN OREGON:
THE FIRST TWO YEARS


Oregon's "Death with Dignity Act," permitting physician-assisted suicide, went into effect in 1997. Under
the law, the Oregon Health Division (OHD) is required to collect information and publish a yearly statistical
report. [ORS 127.865 §3.11] Two official reports have now been published, but there is no way to know
how many or under what circumstances patients have died from physician-assisted suicide in Oregon.


       The law contains no penalties for doctors who do not report prescribing lethal doses for
        the purpose of suicide.


       The Oregon Health Division has no regulatory authority or resources to ensure
        compliance with reporting requirements. [American Medical News, 9/7/98]




DEATHS DURING 1ST TWO YEARS FROM PHYSICIAN-ASSISTED SUICIDE:


Official Reports:   43
Actual Number:      Unknown


16 reported deaths occured in 1998. 27 reported deaths took place in 1999. [NEJM 2/24/00, p. 601]


COMPLICATIONS OCCURRING DURING ASSISTED SUICIDE


Official Reports:   0
Actual Number:      Unknown


According to OHD official Dr. Katrina Hedberg, the division has to rely on the word of doctors who
prescribed the drugs. But those doctors don't need to be present when patients take the lethal
medication. So they may not even know if complications take place. [Oregonian, 2/24/00]


Peter Rasmussen, an Oregon physician who has prescribed lethal drugs for assisted suicides, claims that
Oregon's process is "predictably comfortable, painless." [USA Today, 11/21/99] But news accounts
telling a different story have surfaced:


       Patrick Matheny received his lethal prescription from Oregon Health Sciences University via
        Federal Express. He experienced difficulty when he tried to take the drugs four months later. His
        brother-in-law, Joe Hayes, said he had to "help" Matheny die. According to Hayes, "It doesn't go
        smoothly for everyone. For Pat it was a huge problem. It would have not worked without help."
        [Oregonian, 1/17/99 and 3/11/99]


       Speaking to a small group at Portland Community College in December, pro-assisted suicide
        attorney Cynthia Barrett let the first information slip out about a botched assisted suicide. "The
        man was at home. There was no doctor there," she said. "After he took it, he began to have
        some physical symptoms. The symptoms were hard for his wife to handle. Well, she called 911.
        the guy ended up being taken by 911 to a local Portland hospital. Revived. In the middle of it.
        And taken to a local nursing facility. I don't know if he went back home. He died shortly -
        some....period of time after that..."



Overdoses of barbiturates are known to cause vomiting as a person begins to lose consciousness. The
patient then inhales the vomit. In other cases, panic, feelings of terror and assaultive behavior can occur
from the drug-induced confusion. But Barrett wouldn't say exactly which symptoms had taken place in
this instance. She has refused to discuss the case since her December revelation. [Oregonian, 3/23/00
and 3/26/00]


ASSISTED SUICIDE DEATHS OF PATIENTS WITH DEMENTIA


Official Reports;   0
Actual Number:      Unknown


Kate Cheney, 85, died of assisted suicide under Oregon's "Death with Dignity Act" even though she
reportedly was suffering from early dementia. Her own physician had declined to provide a lethal
prescription for her.


When counseling to determine her capacity was sought, a psychiatrist determined that she was not
eligible for assisted suicide since she was not explicitly pushing for it and her daughter seemed to be
coaching her to do so. She was then taken to a psychologist who determined that she was competent
but possibly under the influence of her daughter who was "somewhat coervice."


Finally, the managed care ethicist, who was overseeing her case, determined that she was qualified for
assisted suicide, and the lethal dose was prescribed. {Oregonian, 10/17/99]


ASSISTED SUICIDE DEATHS OF DEPRESSED PATIENTS


Official Reports:   0
Actual Number:      Unknown


Under the Oregon law, depressed patients can receive assisted suicide if they do not have "impaired
judgment." [ORS 127.825 §3.03]
The first known legal assisted suicide was that of a woman in her mid-80s who had been battling breast
cancer for twenty-two years. Two doctors, including her own physician who believed that her request was
due to depression, refused to prescribe the lethal drugs.


But Peter Goodwin, medical director of the assisted suicide group Compassion in Dying, determined that
she was an "appropriate candidate" for death and referred her to a doctor who provided the lethal
prescription. In an audio-tape, made two days before her death and played at a press conference, the
woman said, "I will be relieved of all the stress I have." [Oregonian, 3/26/98 and Los Angeles Times,
3/26/98]


PATIENTS WHO RECEIVED LETHAL DOSE MORE THAN 6 MONTHS BEFORE DEATH


Official Reports:   1 (247 days)
Actual Number:      Unknown


Lethal prescriptions under the "Death with Dignity Act" are supposed to be limited to patients who have a
life expectancy of six months or less. However, at least one lethal dose was prescribed more than 8
months before the patient took it. [NEJM, p. 599]


The Oregon Health Division is not authorized to investigate how physicians determine their patients'
diagnoses or life expectancies. [Hastings Center Report, Jan.-Feb., 2000, p. 4.]


FIRST PHYSICIAN THAT PATIENT APPROACHED AGREED TO WRITE PRESCRIPTION


Official Reports;   16 (39%)
Actual Number:      Unknown


"Many patients who sought assistance with suicide had to ask more than one physician for a prescription
for lethal medication." [NEJM, p. 603] There is no way to know why 61% of physicians refused to lethally
prescribe (because the patient was not terminally ill, not competent, etc.) since they were not interviewed
for the official reports. The only physicians interviewed were prescribing physicians. {OHD 2nd Year
Report, p. 7]


SHORTEST LENGTH OF RELATIONSHIP BETWEEN PATIENT & PRESCRIBING PHYSICIAN


Official Reports:   2 weeks
Actual Length:      Unknown
The official report indicates that some patients knew their doctors for only two weeks before the lethal
dose was prescribed. [OHD 2nd Year Report, Table 2 and NEJM, Table 1]


Since at least 2 weeks must elapse between the first and last requests for the lethal dose, this indicates
that the physician-patient relationship was established for the specific purpose of obtaining the drugs for
assisted suicide.


REQUESTS FOR ASSISTED SUICIDE BASED ON FINANCIAL CONCERNS


Official Reports:   0
Actual Number:      Unknown


Six (14.3%) of the patients whose deaths were reported were on Medicaid. [NEJM, p. 600] Their doctors
did not report that they had any financial concerns. However those who qualify for Medicaid are among
the poorest Oregonians for whom financial difficulties are a fact of life. The report noted that one family
member said a patient (who had private medical insurance) expressed concern about financial matters,
but the patient "was concerned about all issues except physical suffering." [NEJM, p. 601]


THE OFFICIAL REPORTS DO NOT TELL THE WHOLE STORY OF PHYSICIAN-ASSISTED SUICIDE
IN OREGON


The Oregon Health Division acknowledges that information on which its official reports are based
may be incomplete and inaccurate:


       A limitation of the report includes the fact that "the possibility of physician bias must be
        considered." [OHD 1st Year Report, p. 9]


       "[We] cannot detect or collect data on issues of noncompliance with any accuracy" [OHD 1st
        Year Report, p. 9]


       "We do not know if covert physician-assisted suicide continued to be practiced in Oregon in
        1998." [OHD 1st Year Report 1, p. 9]


       "Underreporting cannot be assessed, and noncompliance is difficult to assess because of the
        possible repercussions for noncompliant physicians reporting data to the division." [NEJM
        2/24/00, p. 603 and OHD 2nd Year Report, p. 12]



The Oregon Health Division admits that reporting physicians may have fabricated their version of
the circumstances surrounding the prescriptions written for patients:
       "For that matter, the entire account could have been a cock-and-bull story. We assume,
        however, that physicians were their usual careful and accurate selves." [OHD, CD Summary
        3/16/99, p. 2]



OHD Sources:
Oregon's Death with Dignity Act: The First Year Experience
Official report on the first year of Oregon's assisted suicide law.


Oregon's Death with Dignity Act: The Second Year Experience
Official report on the second year of Oregon's assisted suicide law.


OHD CD Summary, 3/16/99




                                              Hospice: Dying

        As mainstream medicine tries to reform end-of-life care, hospice provides the model
                                           Monday, September 29, 1997
                                       By Erin Hoover of The Oregonian Staff


At 19, Helen Schneider watched her father wince with the radiating pain of stomach cancer, a slave to the
clock that dictated his next dose of medication.


The doctor's prescription for the dying man: Tylenol with codeine.


Now, 18 years later and across the Southeast Portland street from her childhood home, Helen herself is
dying of cancer.


A morphine patch on her chest pumps controlled doses into her blood. Percocet nips at the remaining
ache. A hospice nurse visits weekly. Helen's mother cooks daily. And on sunny afternoons, Helen dons
Jackie-O sunglasses and goes sightseeing in a friend's black Mercury Cougar.


"My dad went through a lot of pain and unnecessary suffering and wasn't getting the adequate care I'm
getting," Helen says, her dark eyes stormy amid snow-white skin. "When I look back on it, it just seemed
like everything was so primitive."


Helen did not know that hospice - the model of care that has helped make her dying bearable - was
available in Portland in 1978, the year before her father died. Or that the hospice philosophy of
minimizing suffering and helping people find some peace at life's end was introduced in this country more
than 30 years ago. Only now is the hospice vision overcoming mainstream medical resistance and
transforming the way Americans die.


The core idea behind hospice is that when hope for a cure is gone, attention should shift to a dying
patient's physical, emotional and spiritual comfort. Yet conventional medicine, focused on treating
disease rather than easing the way to death, largely ignored hospice teachings for decades.


Through the years, various forces nudged mainstream medicine away from that course. But the biggest
shift came in 1994, when Oregonians voted to approve physician-assisted suicide and jolted the medical
establishment into a new attitude toward death and dying.


Now foundations are spending millions to study and improve end-of-life care. Doctors are learning better
pain management. Hospitals are trying to serve both dying patients and their families.


And hospice provides the model.


"I don't know that they always use the language," says Jay Mahoney, president of the National Hospice
Organization. "But if you look at what they're talking about, they're talking about hospice care."


The roots of the hospice movement go back to 1958, when Dr. Cicely Saunders went to work at a London
home for the dying. She eventually published research on 900 cancer patients. Her results offered new
insights into the needs of the dying and cast serious doubts on the way conventional medicine dealt with
the terminally ill.


In 1963, she brought her message to the United States.


At a time when nine of 10 doctors preferred not to even tell cancer patients their diagnosis, Saunders
stood before an auditorium full of Yale University medical students and directly challenged current
practice.


Cancer pain is complex, she said, involving tumor-related agony, symptoms such as nausea and the
emotional hardship of facing death. Doctors must carefully decipher the dying patient's need and skillfully
tailor each patient's medications.


She denounced the practice of giving opiates only every so many hours. She urged doctors to overtake,
not chase, pain with more frequent doses of morphine. And she dismissed the concern that giving
narcotics to dying patients causes addiction.
She repeated a message she delivered to The Royal Society of Medicine two months earlier: "The real
witness to our treatment is the look on the patients' faces, their alertness, their independence. ...All our
work in dealing with intractable pain at this stage is just to try to make this possible."


The medical students rose to their feet in applause.


News of the speech raced across the campus, and Florence Wald, dean of the Yale School of Nursing,
invited Saunders to address 25 of her colleagues. That day, Wald watched Saunders plant the seeds for
the American hospice movement.


"People were just overwhelmed," remembers Wald, now 80 and working with the National Prison Hospice
Association. "What a breakthrough it was to her this kind of an approach."


In 1967, Saunders and a group of other London doctors and nurses opened the world's first modern-day
residential hospice and called it St. Christopher's. The mission, she says now, was "to do something
about the total pain - physical, psychological, social and spiritual - that dying patients were suffering."


Saunders grew her new model within the medical establishment. Although she first encountered dying
patients as a nurse and social worker, she became a doctor to gain the power and respect she would
need to dramatically change their care. She supported her ideas with scientific research. And she
developed St. Christopher's as a medical training center for what is called palliative care, the practice of
moderating the intensity of a disease rather than attempting to cure it.


But what developed in the United States was a two-track system. Either patients were living and treated
by organized medicine, or they were dying and cared for by hospice.


In the months after Saunders' first talk at Yale, Florence Wald walked around the campus peering up at
the huge, impersonal buildings at the Yale New Haven Medical Center.


She realized that to truly serve the dying, somebody needed to get dying patients out of hospitals and into
more comfortable settings where they and their families could come to terms with death.


To demonstrate that, Wald and other Yale activists, including several doctors, studied the needs of dying
patients - and ran head-on into resistance from the medical establishment.


In 1969, Wald persuaded a doctor to let her give a cancer patient a tiny dose of morphine to dull intense
back pain. Wald then bathed the patient and noticed that she seemed to be feeling much better.
"The doctor burst into the room just as I was standing with a basin of water. He went over to the patient
and said, 'Jane, you're hooked,'" Wald recalls, still astonished at the doctor's foolish comment. I was just
devastated."


By 1971, Wald and her colleagues had research showing the need for a hospice setting separate from
hospitals. They eventually opened the Connecticut Hospice in Branford, Conn., a residence like St.
Christopher's.


But before that, her group landed several key grants to provide hospice services for terminally ill patients
in their own homes or nursing homes.


By 1974, Connecticut Hospice teams - each including a nurse, a social worker, a chaplain and various
aides and volunteers under the guidance of the patient's doctor - were up and running. They visited
terminally ill patients, coordinated their care and attended to their physical, emotional and spiritual pain
and that of their families. The first American hospice program had begun.


Within four years, most other states, including Oregon, had programs that brought hospice care to the
dying.


More than two decades later, nearly 3,000 hospice programs operate across the United states. Last
year, 52 hospice programs served 8,000, or 29 percent, of the Oregonians who died.


Most are home-hospice programs that bring services to patients wherever they live. A few, such as
Portland's Hopewell House of Oregon, are residential: Patients live there until they die. Doctors or other
caretakers refer patients to hospice, or patients and their families seek out a program.


In 1982, Medicare first offered benefits for hospice care for patients diagnosed as having les than six
months to live. Today Medicare covers most home-hospice care with a flat daily rate of $85 to $100.
Medicaid and private insurance also cover some hospice costs. And hospices use donations and grants
to cover patients without insurance.


Although a boon to hospice, the Medicare benefit also institutionalized America's two-track system. Once
a patient's Medicare payments for hospice began, payments for treatment aimed at a cure stopped,
forcing an uncomfortable choice between living or dying.


And although many hospice programs are divisions of hospitals, home health agencies or health systems,
their work remains largely separate, as it was in the beginning.


The tenor of the 1970s did a lot to steer mainstream medicine away from the hospice model.
The all-out drive to conquer cancer was a critical factor. President Richard Nixon's 1969 declaration of
war on the disease reflected society's overall focus on finding a cure. The goal was victory, not graceful
surrender. Doctors who worked with hospice took a risk.


"They were looked at askance," says Dennis Rezendes, one of the early administrators of the
Connecticut Hospice. "They had to stand up to their peers who said, 'What are you doing wasting time
with people who are dying? We're here to save lives.'"


Other factors played a role, too. In the 1980s, President Reagan's war on drugs escalated, and drug
addiction became a significant issue. Medical boards cracked down on doctors overprescribing narcotics
for pain. And suspicion of narcotics fed suspicion of hospice programs.


For their part, some hospices contributed to the gulf between themselves and mainstream medicine.
They not only took over most of the patient's care but also made the patient's doctor feel unwelcome for
anything beyond approving medications.


Some doctors said that referring their patients to hospice was equivalent to sending them down a black
hole. Others thought such a referral meant they had abandoned their patients or hastened their deaths.


Meanwhile, hospital intensive-care units, the showcases of life-sustaining medical technology, grew more
common and more sophisticated. Questions about continuing to treat patients with high-tech medicine
when all hope was gone were often drowned out by the bleating of heart monitors and the whooshing of
respirators.


"All these things built this fantastic medical enterprise, and we had to use it," reflects Dr. George Porter,
chairman of the internal medicine department at OHSU Hospital for 17 years.


By the time Porter retired in 1994 and took a seat on the Oregon Board of Medical Examiners, nearly two
of every five terminally ill patients in the United States spent at least 10 days in intensive care before
dying.


Mary Matthews, a St. Helens homemaker, knows what it is like to become caught up in the medical
machine.


Her mother, Montez Shipman, tried to manage her fear of waking up on a respirator by signing a "Do Not
Resuscitate" order when she entered a nursing home with serious weight and breathing problems.
But Matthews says that when her mother had a seizure in July 1993, nursing home staff revived her while
others scrambled to find the order. An ambulance took her mother to a hospital, where Matthews faced
the difficult decision to withdraw life support.


The continued reluctance to give up desperate, last-ditch efforts to save dying patients still puzzles
hospice founder Cicely Saunders, now 79 and still involved in the movement.


"It's surprising, isn't it, when you think 100 percent of us are going to die," Saunders says. "It is
wonderfully unrealistic."


The United States' two-track system started coming together in the late 1980s.


Baby boomers got a crash course in dying at the bedsides of their parents. And policy-makers began
worrying about the baby boomers themselves - and the inevitable financial crunch that would occur when
that huge block of the population landed in the Medicare system.


The growing dominance of managed care was a factor, too. It emphasizes efficiency, and that made
hospice attractive. For every dollar Medicare spends on hospice care, Medicare says it saves $1.52 on
regular care.


Moreover, experience with hospice was spreading. And reviews were largely positive.


Matthews, for example, was traumatized by the way her mother's death unfolded at a nursing home and a
hospital. But when her father fell ill with bladder cancer this year, his doctor referred him to hospice. A
registered nurse with Legacy Visiting Nurse Association Hospice began seeing William Shipman regularly
and coordinating his care.


Shipman died in August with his beloved Dalmation, Sir Loin, lying next to his bed. The nurse, Bob
Reuter, called the crematorium to pick up Shipman's body, giving Matthews and her daughter time to say
their goodbyes and to thumb through photo albums, even sharing a few healing laughs in the moments
after his death.


"What awes me the most is how wonderful they've been to me. They helped me through the process,"
Matthews says. "With Mom, I felt so alone."


But that kind of attitude failed to penetrate the psychological defenses of mainstream medicine until the
assisted-suicide movement forced the issue. Suddenly, hospice got a lot of attention.
"Here was this gem of an idea right in front of our faces, and they didn't even realize it," says Dennis
Rezendes, the former Connecticut Hospice administrator. "In their search for a reaction to assisted
suicide, they're looking at hospice and saying, 'Hey, this makes some sense.'"


In Oregon, medicine's new approach took the form of programs such as OHSU Hospital's Comfort Care
Team and the Providence Portland Supportive Care Team.


To direct the OHSU team, hospital administrators turned directly to hospice. They hired Dr. Paul Bascom
away from his position as director of Legacy Visiting Nurse Association Hospice.


Beginning in March 1995, Bascom - along with a nurse, three social workers, a chaplain and a pharmacist
- started serving as consultants to OHSU doctors. Their job: to capture the moment when aggressive
treatment is no longer productive and to serve patients' physical, emotional and spiritual needs while
they're in the hospital.


Bascom and his team were not immediately popular. One medical department chief called the plan
"repugnant" because it smacked of abandoning patients. Bascom says he spent his first few months
wondering when the phone would ring with a doctor's referral. And, he says, he still experiences dry
spells.


But doctors and nurses have gradually learned what the team can offer.


Bascom recalls one woman who was dying of lung cancer. Bascom called her nurse, who said the
Comfort Care Team wasn't needed because the patient's pain was under control with morphine delivered
directly to her spinal cord. But Bascom knew from talking with her daughters that the woman wanted to
die at home.


The Comfort Care Team arranged for her to go home under the care of a hospice team. She maintained
the same pain treatment in a special bed and died several days later, surrounded by her daughters.


Mainstream medicine's move into palliative care is one of the most significant medical events in the past
30 years. But activists say the next advance must be even more sweeping: a complete shift in the way
society deals with death and dying.


Americans resist planning for the time when they or their loved ones are dying. It is a challenge that
gnaws at the core of our death-denying culture.


An influential study showed that few terminally ill patients communicated with their doctors about their
preferences for care. Fewer than one if four talked to their doctors about whether to revive them if they
suffered a life-threatening attack. Further, 70 percent of these patients said they wanted physicians to try
to revive them with CPR.


"It's pretty clear that at least some of this medicalized misery is self-inflicted," says Dr. Ira Byock,
president of the American Academy of Hospice and Palliative Medicine and author of "Dying Well: The
Prospect for Growth at the End of Life."


"Really, doctors have been handpicked and trained to be the high priests of our cultural denial of dying,"
he says. "So it is not only doctors who need to change, but it also is all of us collectively as a culture that
need to accept that dying is one of the things that happens."


Byock, a Missoula, Mont., emergency-room physician turned hospice doctor, hopes to do just that.


Last year, he started the Missoula Demonstration Project: the Quality of Life's End, a 15-year effort to
show that combining excellent medical care with appropriate emotional and spiritual support can improve
life for the dying. Byock hopes the project will change the way the entire community deals with death.


The project is a big deal nationally. It has more than $900,000 in grants in hand or pledged from major
foundations.


It is becoming a big deal in Missoula, too.


With a full-time staff of four, the Missoula Demonstration Project has spread out into the community.
Already more than 100 people - hospital administrators, funeral home directors, pastors, health care
professionals, writers, academicians, senior citizens and more - are involved on its board of directors,
task forces or advisory board.


Their goals: to understand how people die now, to spark communitywide discussions on improving that
process and to work at making that vision a reality.


One task force is helping families collect stories and history from their elders, enriching survivors and
reassuring the dying that they won't be forgotten. A second group is showing families how to use art to
explore and express the themes of death and dying.


Yet another is trying to establish pain as a fifth vital sign to be monitored along with blood pressure, pulse,
temperature and respiration. The group is following national models to institute the use of a zero-to-10
scale to measure pain so that everyone who deals with patients speaks a common language.
Skeptics aren't sure that what works in Missoula will work elsewhere. And some of Byock's critics in the
medical profession say the project is Byock's arrogant attempt to spread his hospice-based vision of
"Dying Well."


Byock says that's just defensiveness from a profession that does not adequately care for the dying. But
he acknowledges that part of his personal interest in hospice is political. He believes hospice can
address the suffering of the dying and make physician-assisted suicide unnecessary.


Not everyone thinks so. A recent poll by The Oregonian showed that 68 percent of Oregon voters
thought assisted-suicide should remain an option even though hospice care is available.


And Dr. Timothy Quill, a New York internist who became nationally known after he helped a patient die,
says although comfort care eases most dying patients' agony, assisted suicide should be an option for
those unable to find relief from such problems as open sores, delirium, labored breathing or physical
dependency.


But regardless of the debate, the Missoula Demonstration Project seems to be striking a nerve.
Residents who talk about the project are enthusiastic. They readily offer stories about the deaths of loved
ones and their won hopes for a good experience.


"Our culture has gone so far to the medical side and so far away from the spiritual side," says Azara
Stinger, 70, who attended a meeting to learn more about the project. "We're just trying to get back."


Erin Hoover is a member of The Oregonian's Health, Medicine & Science Team. Leave a message for
her at 1-503-294-5011 or fax her at 294-4150. Send mail to 1320 S.W. Broadway, Portland, Ore. 97201,
or e-mail to erinhoover@news.oregonian.com.




                         Oregon Doctors Say House Bill Will Undo Law

Critics have a chance to render Oregon's statue ineffectual by limiting the drugs that physicians could
prescribe.


Wednesday, October 20, 1999
By Erin Hoover Barnett of The Oregonian staff


If Congress outlaws the use of federally controlled drugs for physician-assisted suicide, would that stop
dying Oregonians from using Death With Dignity Act?
Oregon pharmacists and doctors say: In most cases, yes.


However, Sen. Don Nickles, R-Okla., co-sponsor with Rep. Henry Hyde, R-Ill., of the Pain Relief
Promotion Act, says the bill does not overturn the Oregon law and would not stop its use.


"There are other substances that could be used, and if somebody wanted to use them, they could. It's not
OK, but they could," Nickles told The Oregonian. "You could still have assisted suicide, but they couldn't
use these substances."


Nickles said the bill is intended solely to encourage aggressive pain treatment yet create a uniform
standard for the use of federally controlled substances by excluding their use for assisted suicide.


Doctors and pharmacists question Nickles' assertion that other drugs could be used.


"He's only exposing his total lack of any medical knowledge whatsoever," said Dr. Richard Ellerby, an
oncologist at North Bend Medical Center in Coos Bay. "Is he talking about going out and chewing on
hemlock?"


Dr. Peter Reagan, a Portland family practice physician, said he would do his best to find safe drug
alternatives for appropriate patients seeking to use Oregon's law.


But if he could not find alternatives, he said, he would consider civil disobedience.


He said: "I would consider exploring with legal counsel what the scenario would be if I were to follow
through with the use of the law with a controlled substance, even though it might have consequences to
me."


Doctor recalls death
Reagan said he has seen what some patients do when they can't get help to die. He said he told a
patient last year that he would find ways to ease his suffering but that his eligibility to use Oregon's law
was questionable. The man shot and killed himself the next day.


In 1998, Reagan was the primary-care doctor in the first publicly announced assisted suicide case under
Oregon's law.


Salem pharmacist Joseph Schnabel, a member of the Oregon Board of Pharmacy, noted that many drugs
that are not federally controlled can cause death but none as reliably. Federally controlled drugs include
those with a potential for abuse or street sale, such as barbiturates - sedatives that can shut down the
brain - and strong pain medications such as morphine.
Schnabel said certain heart medications, which are not federally controlled, can slow the heart. But he
said a person could still live for days, possibly in a coma. If the person were revived, he or she could be
brain-dead. Likewise, an overdose of drugs used for psychiatric disorders can kill but can cause seizures
in the process. Even an overdose of Tylenol would take days to fatally damage the liver.


Schnabel said research in the Netherlands, where assisted suicide is practiced, shows the efficacy of
barbiturates in causing death. Because such research does not exist for other drugs, he doubted that
doctors and pharmacists would prescribe them.


The result, he predicted, would be an end to use of the law.


Don West, a Portland pharmacist and owner of Lloyd Center Pharmacy, said he would never personally
consider filling a prescription for assisted suicide. But he said some non-federally controlled drugs might
cause death if a person's body was weakened by terminal illness, but not as effectively as barbiturates.


"If they have a strong heartbeat, they wouldn't use something that would slow the heart because it could
take awhile," West said. "If they had a weak heart, this might make more sense, but the toxicity of the
drug could still make death an agonizing event."


Dr. Terri Schmidt, an emergency room physician at OHSU Hospital, said she has seen the results of
overdosing on noncontrolled substances, including household poisons. "There are some very nasty
things, like certain cleaning products, that are universally fatal. But they're very ugly," she said.




No research on alternatives


Schmidt said she did not think most doctors would hazard the risk of prescribing noncontrolled drugs
when there is no research showing their effectiveness in this area.


Barbara Coombs Lee, executive director of Portland-based Compassion in Dying Federation and a co-
author of the Oregon Death With Dignity Act, said the law was never intended to force doctors to try
potentially unreliable drugs.


"What the Death With Dignity is about is bringing assisted dying into the respectable medical domain,
making it part of what a patient can ask their own physician - who is trained and involved in a reputable
practice - to provide," Lee said.
Ellerby in Coos bay was confused by Nickles' assertion that other drugs could be used. He thought
Nickles wanted to stop assisted suicide, not cause doctors to use less-reliable and potentially harmful
drugs to continue the practice.


At least one person can see a business opportunity in the perceived lack of viable drug alternatives under
Oregon's law.


Derek Humphry has just released the videotape version of his best-selling book, "Final Exit." The video,
as Humphry's promotional material says, "summarizes graphically how to arrange to take your own life if
you feel that necessary."


Because of efforts like the bill in Congress, writes Humphry, "dying people who want to end their suffering
by choice will have to manage it themselves."


Jim Barnett in The Oregonian's Washington D.C. bureau contributed to this report. You can reach Erin
Hoover Barnett at 503-294-5011 or by e-mail at ehbarnett@news.oregonian.com.




                                            Increased Pain

OHSU study reveals continued reports of increased pain in dying hospitalized patients

FOR IMMEDIATE RELEASE: 5 JUNE 2000
Contact: Jim Newman
newmanj@ohsu.edu
503-494-8231
Oregon Health Sciences University

Portland, Ore. - A new study by researchers at Oregon Health Sciences University notes continued
reports of increased pain for dying, hospitalized Oregonians in late 1998. The study, which is printed in
this month's edition of the Western Journal of Medicine, shows 54 percent of family members reported
their loved one had a moderate or severe pain in the last week of life. Previously gathered data shows a
sharp increase in pain levels for dying hospitalized patients. Complaints of high pain levels increased
from 33 percent to 57 percent in late 1997. Susan Tolle, M.D., director of OHSU's Center for Ethics in
Health Care; Virginia Tilden, Ph.D., R.N., dean of research in OHSU's School of Nursing; Susan
Hickman, Ph.D., project director at the Center for Ethics; and Anne Rosenfeld, Ph.D., assistant professor
in the School of Nursing, conducted both studies.
When combined, the studies identify a continued, sharp increase in family reports of pain at the end of life
for hospitalized patients. However, researchers point out that neither study draws conclusions about
cause and effect. "We will never know why family members of hospitalized dying patients reported higher
rates of pain in late 1997, nor why they continued to report higher rates of pain in late 1998," said Tilden,
a co-author of the study. "Late 1997 was a volatile time in Oregon's political and regulatory climate.
Events such as the legalization of physician-assisted suicide and an extensive pre-ballot media campaign
about end-of-life care were just a couple of the things that were happening at the time."


Team members suggest possible explanations for increased reports of pain include more family
awareness about pain treatment options and a possible change in physician prescribing practices due to
fears of regulatory sanctions. "On the one hand, families may have higher expectations about pain
management than they have in the past and may be reporting pain more frequently," said Tolle, lead
author of the study. "On the other hand, if families are right that their loved ones did experience more
pain, this raises grave concerns. Were doctors writing less pain medication for these patients, and if so,
why?"


Both studies used similar methods to reach participating family members through a random sampling of
Oregon death certificates. Respondents were contacted two to four months after the death of their loved
one. If they agreed to participate, they were interviewed by telephone. A total of 475 family members
consented to take part in the initial study and 103 in the follow-up study. "One challenge we faced in
gathering this data was that Oregon death certificates do not list contact information," said Hickman. "In
order to find family members, we had to search publicly available records, such as obituaries. We were
able to locate 51 percent of potential respondents, and just over half of these family members agreed to
participate." The telephone interview included questions about advance planning, pain management and
communication issues. Only the question about pain yielding changes over time, and this change was in
hospitalized dying patients only. The three main causes of death in hospitalized patients were cancer,
heart disease and cerebrovascular disease.


OHSU's Center for Ethics in Health Care has been tracking end-of-life care markers for more than a
decade. Until this study, the research suggested that end-of-life care was improving in all areas. The
markers of improvement include: increased attention to advance planning, increased rates of hospice
referrals, increased physician and public education about end-of-life care issues, decreased rates of in-
hospital deaths, and decreased barriers to prescribing narcotics.


The results of this study raise many questions, and the research team stresses the need for more
information. "Our study raises concerns about why more families are reporting moderate and severe pain
in dying hospitalized patients," said Tolle. "Clearly, there is a pressing need for more research into this
troubling finding."
The Greenwall Foundation of New York, the Meyer Memorial Trust of Oregon and the Open Society
Institute Project on Death in America of New York provided funding for this research.




                                Is Mom Capable of Choosing to Die?

Kate Cheney says she wants assisted suicide, but doctors and therapists wonder if it's actually
her vocal daughter's wish


Saturday, October 16, 1999
By Erin Hoover Barnett of The Oregonian Staff


Editor's note: Kate Cheney and her family agreed to tell their story so people could better understand
Oregon's landmark physician-assisted suicide law. Their journey began with a letter to the editor
expressing dismay that legal safeguards had become roadblocks to Kate's right to a lethal prescription.


Kate Cheney survived the bombing of Dresden in 1945 by fleeing with her daughter from their apartment
and later from their country.


So 54 years and a terminal cancer diagnosis later, it's not hard to see why Kate had trouble accepting a
psychiatrist questioning her ability to make another crucial decision - to pursue her own death with
physician-assisted suicide.


But a psychiatrist could see that at 85, Kate's short-term memory was fading. It appeared that dementia
was setting in. And her daughter's assertiveness about getting the lethal dose for her mother made the
psychiatrist wonder whose agenda this really was.


Kate, less fiery than her daughter but no less pragmatic, firmly said she didn't feel pressured. "She
makes more noise than I do," she said. "But that doesn't make me any less serious."


Kate's decision long ago to save her daughter, Erika, had come full circle - now Erika wanted to protect
her mother's right to die. Erika was forced to grapple with her own personality from an uncomfortable
angle.


Kate's story reveals the complex dynamics that can test families when using Oregon's landmark law. And
it provides the first public peek into the challenges that Oregon psychologists and psychiatrists face when
called upon to be the gatekeepers to death.
Oregon's Death With Dignity Act says terminally ill and mentally capable adults, acting voluntarily, can get
a lethal prescription. A physician often determines the patient's mental capability. But when they are in
doubt, the law requires physicians to call in a psychiatrist or psychologist. In 1998, four of the 15 people
who committed assisted suicide had a psychological evaluation first.


Mental health professionals often are asked to assess a person's competence. But many of these
evaluations - whether someone is competent to stand trial or manage their money, for example - are to
sustain life, not end it. Literature about how to do evaluations for assisted suicide has been published
since Oregon's law took effect in 1997, but deciding competence will always be a judgment call.


"There really isn't a bright line, as lawyers like to say. This is an evaluation," said Dr. Robert Richardson,
director of the Kaiser Permanente Northwest Ethics Service, who oversaw Kate's case. "This is the only
place in the world where this evaluation has ever been formally made, so our understanding of what it
takes to make this kind of decision is an evolving process."


Kate, a cloud of white hair surrounding her face, wrinkles framing her smile, relaxes in her Southeast
Portland living room in June with her daughter, Erika Goldstein, and her dachshund, Shorty.


Kate can vividly recall fleeing with Erika, then 9, and another family to a Dresden schoolyard on Feb. 13,
1945, amid the terrifying brilliance of exploding bombs.


She remembers wrapping up in wet blankets to fend off sparks and, later, stepping over bodies to escape
the city.


But she struggles to describe her initial psychiatric evaluation, the one she needs to get a prescription to
die.


Kate keeled over at the hairdresser's May 9 before bowling league. Doctors at a nearby hospital
discovered an inoperable, cancerous tumor in her stomach. She had perhaps a few months to live.


When her granddaughter, Pat Bowman, visited Kate, Kate took her hand, telling Pat she'd asked the
doctor for pills to end her life.


Kate and Erika had joined relatives in Portland in 1948. Kate, who was divorced, had remarried and
worked in Portland State University's German department until 1961. Her second husband died in 1989.


Kate wanted the option for assisted suicide in case she was in bad pain or if the indignities of losing
control of her bodily functions became unbearable. But she said she didn't fear death.
"I'm going to meet my husband again and meet my father again," she said.


Erika, a retired nurse, came from Arizona to care for her mom. At 64, Erika is spirited and trim, competing
regularly in seniors track events. A hearing impairment has sensitized her to injustice and taught her to
stick up for herself - and others. So Erika went with Kate to formally request the lethal prescription.


Erika thought the Kaiser doctor was dismissive; she requested a new one. Kate's second doctor
arranged for a psychiatric evaluation, a standard procedure at Kaiser.


The notion of evaluating a person's mental fitness to commit suicide has stirred up the medical and
mental health professions. Doctors are trained to preserve life. Mental health professionals are trained to
view thoughts of suicide as symptoms of a problem in need of treatment. Oregon's law turned all that on
its head.


Surveys have shown that most Oregon psychiatrists and psychologists are not confident that, in one visit,
they could assess a dying person's competence to choose suicide. The law does not limit the number of
visits, but the patient's ill health usually rules out multiple chances at insight.


Dr. Greg Hamilton, a Portland psychiatrist, says the law has shifted doctors from their medical caregiving
role to a legalistic role as an evaluator.


But Tony Fahrenkopf, a Portland psychologist, and others distinguish between cutting short a viable life
and hastening an expected death. And most Oregon psychiatrists and psychologists surveyed said they
see a role for physician-assisted suicide in some circumstances.


The psychiatrist visited Kate at home on May 31. Kate was using pain medication after a recent fall but
was not bedridden.


The psychiatrist declined to be interviewed, but the family released the psychiatrist's report for this story.


The psychiatrist found that Kate understood some things - including that she was incurably ill and had
weeks or months to live. But she didn't remember the details of her hospital stay in May or the names of
her hospice nurses or her new doctor.


During the evaluation, Kate looked to Erika for answers and Erika coached her a few times, even after the
psychiatrist asked her not to.


The psychiatrist noted that although assisted suicide seemed consistent with Kate's values throughout
her life, "she does not seem to be explicitly pushing for this." After explaining that Kate did not have "the
very high level of capacity required to weight options about assisted suicide," the psychiatrist said that,
although Kate seemed to accept the assessment, Erika became angry.


Kate's request for a prescription was denied.


"If you know your time is limited, you're not afraid to die, a physician should be able to give you the
medication you need to do that," Kate said.


Erika was more blunt: "For me to sit there and witness someone coming in here with all their intellectual
acumen and making a judgment call on my mother, it just incensed me."


There is no single method for evaluating a dying person's competence to commit assisted suicide or a
foolproof way to gauge undue influence. Oregon's law says the person must be able to make and
communicate health care decisions and be aware of his or her medical condition, the risks of using a
lethal dose and the feasible alternatives. A psychological disorder - senility, for example - does not
necessarily disqualify a person.


Doctors and therapists use their own combination of methods, drawing from mental status exams and the
increasing array of journal articles and professional guides on the topic.


Dr. David M. Smith, a Portland geriatric psychiatrist, says psychiatrists have plenty of relevant experience
from evaluating the competence of people who want to stop life-sustaining treatment, such as kidney
dialysis.


Smith asks blunt questions to assess family influence: "Is someone hinting that you are a burden or a
drain?" He listens and watches their body language.


Some scholars scoff at the notion that a person could make any decision - let alone the decision to die -
without being influenced by others and say that such a standard is not a valid reason to deny them that
choice.


Others say influence is a reason to recommend against assisted suicide, especially among people they
consider particularly vulnerable - the terminally ill.


Kate decided on a second competency evaluation. This time, it was with a clinical psychologist who
asked to meet with Kate alone. After the June session, the psychologist came away with a somewhat
different impression.


"Mrs. Cheney was alert and oriented to person, place and generally to time," the psychologist wrote.
The psychologist did a screening test and asked other questions. Kate knew the name of the governor
and the date of Erika's birthday, for example, but could not recall when she was diagnosed with terminal
cancer.


The psychologist said there was no severe impairment that would limit Kate's ability to make a medical
decision, but she noted that Erika had wanted to audio-tape the evaluation.


The psychologist wrote that Kate's "choices may be influenced by her family's wishes and her daughter,
Erika, may be somewhat coercive." But she wrote that Kate "demonstrated the capacity to weigh the
differences and articulate her own values."


Kate sits in her living room on July 6 in a floral sweatshirt and corduroy pants. The clock above her piano
ticks softly. She still hasn't been given her lethal prescription, even though the psychologist approved it.


"It's not that I have any plans to use it right away," Kate said. "I may never use it. But it's just to have the
decision in my hands, rather than anyone else's."


She dismisses the notion that family members are pushing her. "They all feel I should do what I want,"
she said. Her family has always made a point of respecting one another's views, she says.


Erika and her husband, Bob Goldstein, who has come from Arizona, return from yard work. Erika has
learned of the two therapists' concerns about her dominance.


"I realize I sound real aggressive and assertive," Erika said. "I realize I've been standing up on the roof
with a banner and Mom's been standing behind with a little flag."


Now Kate's doctor and Richardson, the ethicist, had two evaluations but weren't ready to approve the
medication. Each evaluation drew different conclusions. And the question of influence still hovered.


Kate's doctor relayed the concerns to her granddaughter, Pat, who lives in Portland and was helping
Erika and hospice workers with Kate's care. The doctor said Richardson wanted to meet with Kate.


Pat, a social worker, and her husband, a psychologist; Erika and her husband; and Kate sat down for a
family meeting.


Pat could see Kate was frustrated. She knew her grandma had been endlessly questioned. Pat even
asked her once who the U.S. president was. Kate had leaned across the table and said with deadpan
humor: "Nixon."


Kate waffled about whether she would submit to meeting with yet another person.
"Grandma," Pat told her, "I think they think we're trying to kill you."


Pat told her that getting the prescription was Kate's choice. The family made it clear they were there for
her regardless.


The next day, Kate called and arranged to see Richardson alone. Once Kate warmed up to him, he said
she was delightful. They talked for some time about her life and her experiences in Germany.


At 85, she wasn't as mentally alert as a 55-year-old, he said, but she knew without prompting who he was
and why he was there.


She told him that if she could no longer attend to her personal hygiene - she expelled waste into a bag
through a tube attached to her intestine - or get out of bed, she might decide that life had become
unbearable.


Richardson was convinced not only of her competency but also that she was acting on her own.


"I had no reason t believe that this was anyone's agenda but hers," he said.


Kate received her bottle of barbiturate capsules, two anti-nausea pills, a beta-blocker and some mouth-
numbing lidocaine syrup on July 23.


The Kaiser pharmacist described how to use the medication. Erika put the package in a safe place.


"I am now the reluctant guardian of a lethal dose of drugs," Erika wrote in an e-mail. She said she still
felt the pressure of her motives being questioned and vowed not to bring up the drugs until her mom did.


For a while, the issue went away. Erika and Kate watched videos. They visited Kate's neighbors,
laughing about the time Kate caught the eye of a married man while on a cruise. They celebrated Erika's
birthday. Kate let her daughter wash and set her hair. Erika used her mom's curlers, teasing her that
she'd had them since the Crimean War.


But Kate was growing weaker. She was barely eating. She was using pain pills. She had begun having
trouble cleaning out and re-attaching her waste bag. At one point, Erika got her mom into the shower to
clean her off. Kate spoke of just wanting to use "the pill" now. But the moment passed.


By late August, Erika's husband, Bob, thought his wife needed a respite. Kate went to a nursing home for
a week. Erika visited regularly. Kate ate well but always asked when she was going home.


On Aug. 29, Erika and Bob brought her home. They sat down in the living room to relax.
Kate spoke.


She said she realized something had to be done, given her declining health. She'd considered going into
a German nursing home she knew of but had decided against it. She told them she wanted to use "the
pill" and asked whether they would help her.


"When would you like to do this?" her son-in-law said.


"Now," Kate said.


Kate retired to her bedroom.


Erika said she summoned Pat and her husband. They sat on Kate's bed to hear her intentions for
themselves.


Pat called Kate's three other granddaughters. Her grandson was en route from Seattle to say goodbye.
Kate's granddaughters sobbed on the phone. But Kate remained serene.


Outside her bedroom was nervous activity. Finding the medication. Reading the directions. Standing
together in the kitchen, breaking open capsule after capsule of the barbiturate and dumping the powder
into a bowl of applesauce.


"We were holding ourselves up and holding ourselves together with this very thin thread," Erika said.


When it was time, Page knelt at her grandma's bedside. Richard, Pat's husband, supported Kate on the
bed in the crook of his arm. Erika stood at her daughter's side, with her husband at Kate's feet.


Pat explained that Kat must eat this mixture quickly and finish every drop.


Kate, who for months had mostly picked at her food, purposefully shoveled down the applesauce one
mouthful after another.


Erika stared in wonder at her mother.


She leaned closer.


"You are such a strong woman," she said in German.


Kate, still lucid, corrected her daughter's word choice. Erika smiled.
Bob passed out the glasses of Liebfraumilch wine his mother-in-law requested. They raised and clinked
their glasses with hers.


Kate took a sip.


After a while, Kate's breathing became erratic. Color and warmth drained from her face. Within an hour,
she died.


The week after Kate was buried with a graveside service, Erika and her husband sit in Kate's living room.
Moving boxes clutter the floor.


Gone are Erika's indignant feelings about the injustice of the process to get a lethal prescription. During
the course of the summer, she says, she has learned a final lesson from her mother. This one is about
the importance of making it through a difficult process to reach a challenging goal.


"I'm glad this law is here for this state," Erika says. "I don't think I'd change it. I think it has to be here to
protect the innocent. I wouldn't have been able to say that in the beginning."


You can reach Erin Hoover Barnett at 503-294-5011 or by e-mail at ehbarnett@news.oregonian.com.




                                            New Way of Dying


Public pressure has changed the way American medicine deals with the end of life

Sunday, September 28, 1997
By Mark O'Keefe
of The Oregonian Staff

The furor over doctor-assisted suicide has had one dramatic, unexpected consequence: Mainstream
American medicine has turned its attention to the dying in an unprecedented way.


Initiatives aimed at giving dying patients more control and less pain are just beginning to take hold. But if
successful, they could profoundly affect the way you and your loved ones die.


Because Oregon passed the nation's first doctor-assisted suicide law in 1994, changes in the way the
medical establishment deals with death are especially visible here. They include:


Establishing hospital teams to address the physical, emotional and spiritual pain that the dying and their
families suffer.
Giving patients more control of how much, or how little, life-sustaining treatment they receive.


Embracing the hospice model, which is based on the principle that the best place to spend your final days
isn't in a hospital, hooked up to machines, but at home, connected to family and friends.


Overarching all these initiatives is a fundamental shift in the way medicine looks at itself and the patients
it treats. More and more medical professionals are realizing that, despite stunning technological
breakthroughs, not everyone can be cured.


With this in mind, medicine now is focusing on the patient's comfort instead of the doctor's cure. The
medical term for such treatment is "palliative care."


The attention given to two assisted-suicide cases argued before the U.S. Supreme Court this year has
increased public concern for the dying. But Oregon's 1994 measure started the transformation in medical
thinking.


"It was a wake-up call to everyone that we needed to do a better job," says Thomas Reardon, a Portland
physician who is chairman of the board of the American Medical Association. "As is the case with so
many things in our society, sometimes you need a crisis to get your attention, to recognize the problem
and to deal with it efficiently."


The patriarch of the assisted-suicide movement agrees. "We knew it would take a breakthrough in the
law for people to listen to us," says Hemlock Society founder Derek Humphry, now the head of the
Euthanasia Research & Guidance Organization, based in Junction City. "And the law did break through
in Oregon."


Weeks of radiation and chemotherapy had cost Nancy Sullivan most of her hair. An intravenous line
hooked her to a machine festooned with blinking digital displays. The 51-year-old former discount-store
cashier had shriveled to skin and bone, but colon cancer bloated her stomach to the size of a volleyball.


When she arrived at Portland's Providence Medical Center 10 days earlier, Sullivan throbbed with pain.
On a scale of zero to 10 - with 10 being the worst possible - she rated her pain a 6.


If it hadn't been for the assisted-suicide movement and medicine's reaction to it, Providence might not
have measured Sullivan's pain, must less reduced it. Pain, after all, has been a common part of dying: A
1996 study suggested that three-quarters of patients with advanced cancer have significant pain. A
quarter die in severe pain.
But thanks to the drip, drip, drip of morphine into her body, Nancy Sullivan soon arrived at the point where
she rated her pain a zero.


That's how she felt recently when nurse Barbara Patrick, coordinator of Providence's Supportive Care
Team, dropped into her hospital room to check on her.


"How are you feeling today?" Patrick asked.


"Pretty good," said Sullivan, he eyes drooping.


"Are you having any pain?" Patrick said, raising her voice.


"Not too bad," said Sullivan, falling back to sleep.


The Supportive Care Team is a collection of experts - a doctor, nurse and social worker - skilled in end-of-
life care. Since Oregon's death-by-prescription law passed, OHSU Hospital and Salem Hospital have
launched similar teams.


Providence, a Roman Catholic hospital, started an end-of-life team in 1993, in the wake of concern raised
by failed assisted-suicide measures in Washington and California. By the year 2000, a coalition of
Catholic health care organizations plans to update all of the country's 1,200 Catholic hospitals, based in
part on what has been learned at Providence.


A key finding is that it's hard to reduce pain if nobody measures it. And research shows that most
hospital staffs don't even quiz patients about their pain.


At Providence, nurses ask patients to evaluate their pain with the zero-to-10 scale. At first patients in
acute care averaged 6.3, much higher than expected.


Within two years, the average pain intensity had dropped to 2.3.


As Nancy Sullivan dropped off to sleep, her daughter, Christine Hebb, stood in a corner of the hospital
room, looking tired and worried after spending the night at her mother's bedside.


"It's very important," Hebb said of the pain relief. "I would hate to think of her last few weeks as painful.
I'd rather have her doped up so she doesn't feel it at all."


Hebb walked to the side of the bed and grasped her mother's hand.


"Do you agree with that, Mom?"
Sullivan opened her eyes slightly and managed a faint "yeah."


She died three days later after slipping into a coma, pain-free.


Advocates of legalizing doctor-assisted suicide say that pain control sometimes means putting patients
into a morphine-induced stupor that slows their breathing until they die. And they argue that many of the
terminally ill want to reject that option.


Alicia Super, who head the Catholic Supportive Care of the Dying Coalition, does, too. She argues that
medicine must go one step further in treating pain - without assisted suicide or an excessive reliance on
morphine.


That next step includes a more sophisticated analysis of pain, keeping the morphine option open while
considering other drugs that reduce pain and inflammation yet keep patients alert.


The broader approach can have a big impact.


Harold Gregg, a 73-year-old with prostate cancer, had excruciating, unrelenting pain despite high doses
of morphine. The pain was so bad, says his daughter, Maria Parrish of Corbett, that her father would say,
"Maybe you should just take me out back and shoot me."


Although a Catholic and opposed to assisted suicide, he told his daughter: "I understand now why people
do it. The pain is so consuming. It's no like it's going to be better tomorrow or next week with cancer. My
big fear is it's going to get worse."


When Super, who also is a nurse and pain-management expert, saw Gregg, he rated his pain a 10. She
explained that the tumors in his spine and hip had inflamed the bones, muscles and nerves. Morphine
can relieve that type of pain only partially. And opiates don't reduce inflammation.


She suggested to Gregg's doctor that he reduce the morphine and add a steroid, an antidepressant, a
muscle relaxant, a stool softener and an anti-inflammatory.


In one day, Gregg was out of bed, rating his pain a zero.


"He was able to go out and work in his greenhouse," his daughter says. "He planted his garden that
spring. He was able to sit and talk. It enabled him to sort of finish up business with all of us, to talk to us
and say his goodbyes."


Gregg died July 4, grateful for the help he received but angry he didn't receive it sooner. And he
wondered why do many others die in unnecessary pain.
Although his story is dramatic, Super says it is not unusual. Beyond prescribing morphine - if they are
even willing to do that - most doctors don't know much about the evolving science of pain management.


Medicine, Super says, "suffers from a deep sense of inadequacy. We want to help patients. But we
haven't been trained."


Super says that if medical schools begin training doctors who, in turn, better help dying patients, the
desire for doctor-assisted suicide will evaporate.


Thomas Reardon, the AMA board chairman, agrees. Reardon heads an AMA end-of-life task force to
improve care nationwide as a way of combating doctor-assisted suicide.


Activists who want to offer the option of assisted suicide strongly disagree, arguing that better treatment
for pain doesn't necessarily remove all the reasons terminal patients might want to hurry their deaths. But
there is widespread agreement that mainstream medicine needs to improve care for the dying.


"The issue," Reardon says, "is the profession needs to do a better job."


Medicine's shortcomings in end-of-life care are rooted in a history that has emphasized cure over comfort.


When I went through my internship and residency, and people had terminal cancer," says Dr. Peter
Rasmussen, a Salem oncologist with 17 years of caring for the dying, "they were told to get a case of
Jack Daniel's and go home. And that's exactly what they did.


"They could go to their church or their family, but there was no help from organized health care."


Rasmussen began his professional life during an era when doctors knew best, and no one, not even the
patient, dared to question Marcus Welby, M.D.


Perhaps the best evidence of this attitude was a 1961 study, published in the Journal of the American
Medical Association, showing that nine of 10 physicians surveyed did not even inform their patients when
they had cancer.


Some doctors said they feared news of impending death would lead patients to commit suicide. Many
doctors were simply uncomfortable with death. Rather than confronting it, they withdrew emotionally.


"Fatal illness," wrote Dr. Donald Oken, author of the 1961 study, "is felt as a major defeat."
By 1979, the philosophy had shifted, with 97 percent of doctors telling terminal cancer patients that they
not only had the disease but also were dying of it. But that's where change stalled. Typically, doctors did
little to help patients deal with the diagnosis they delivered.


That's when a movement began to help terminal patients put their lives, and deaths, into their own hands.


The crusade started in Oregon. Derek Humphry, then in Eugene, founded the Hemlock Society to
promote voluntary euthanasia for the terminally ill. His how-o-suicide manual, "Final Exit," became a
national best seller.


Janet Adkinds, a Portland woman in the early stages of Alzheimer's disease, killed herself in 1990 with
the help of Jack Kevorkian. She was the first of many such patients for Kevorkian, the flamboyant
Michigan doctor who would push physician-assisted suicide into the public consciousness.


In 1977, a survey showed 38 percent of Americans agreed that "a person has the right to end his or her
own life if this person has an incurable disease." The figure increased to 61 percent by 1996.


A poll by The Oregonian earlier this month found that nearly three-quarters of Oregon voters thought
assisted suicide should be available "when a person is terminally ill and in extreme suffering during the
final stages preceding death."


Several factors contributed to the shift in public opinion.


The advent of AIDS - and the painful deaths it sufferers endured - might have sensitized doctors to the
issue.


In 1990, 28 percent of physicians treating AIDS patients in San Francisco said they would be willing to
assist in a patient's suicide. By 1995, a survey of that same group found 48 percent willing, according to
an article published this year in the New England Journal of Medicine. More than half of those doctors
said they had assisted in a suicide.


"It's like the pro-choice issue for me" says David Crowder, a 42-year-old Salem resident who has AIDS.
"People have the right to choose if they should call it quits with life, and it should be done in a humane
way. I want that as a choice for myself."


Baby boomers influenced public opinion, too. In the 1980s, larger numbers of boomers began to
contemplate death as their parents died, and their perspective was different from what came before.
Boomers will want more options and control in their end-of-life care, says Dr. John Santa, the medical
director of Health First, a Portland-based physicians group.


"This is a reaction against the physician as father," Santa says. "People don't want a controlling,
paternalistic doctor saying, 'Let me tell you what's good for you.'"


The rising cost of medicine has influenced attitudes, too. Medicare now spend nearly a third of its annual
$212 billion budget on care rendered during the last year of life.


Despite all these gradually building pressures, the medical profession reacted very little until Oregon's
November 1994 vote approving doctor-assisted suicide. At that point it appeared that Oregon had only a
month before the law would take effect.


"Man, everybody was hustling," says Dr. Susan Tolle, the director of the Center for Ethics and Health
Care at Oregon Health Sciences University. "They couldn't do more to improve care for the dying in
those 30 days."


A federal judge responding to a lawsuit, unexpectedly blocked the law, giving the medical community
more time to react.


In June, the U.S. Supreme Court ruled in two cases that no constitutional right allows terminally ill
patients to end their lives with a doctor's aid. That left the issue for states to decide.


That's why the Oregon Legislature created Measure 51, which goes before voters in a mail ballot
beginning in mid-October. The measure would repeal the 1994 law, eliminating the possibility of legally
sanctioned doctor-assisted suicide.


In the meantime, the Supreme Court still must rule on the Oregon law. That decision could come anytime
before next summer.


Whatever voters - or Supreme Court justices - decide, a jarring message has been sent. The public has
challenged medicine's traditional approach to death and dying. And medicine is responding.


Advocates of legalizing doctor-assisted suicide applaud the sudden attention paid to the dying. But they
don't see headline-grabbing initiatives eliminating patients' desire to determine the time and manner of
their own death.
Several times a week, the "Right to Die" Internet discussion group updates members on how medicine is
reacting to the assisted-suicide movement. In August, the update reported on a $1.6 million University of
Wisconsin project aimed at improving pain control for the dying.


Right-to-die activists responded.


Robert Wrenn, a University of Arizona professor who teaches a class called "The Psychology of Death
and Loss," was one of them. "If you want to die and can't," he asked, "how can your pain be considered
controlled?"


Wrenn elaborated later: "We tend to think in our culture of pain having to do with the nervous system, a
broken arm or whatever. But when it comes to death and dying, especially in our culture in which people
are so isolated and abandoned, pain comes in many flavors.


"Spiritual pain. Social pain. Unfinished-business pain, with part of the unfinished-business pain being,
'Why am I here, and why do I need to go on?'"


It is that kind of pain modern medicine might have the most difficulty addressing. It is the kind of pain that
drove ester Angell, a retired civil engineer living in Florida, to suicide in 1988.


Angell, 81, who earlier had received hospice care, was not in extreme physical pain. Nor was he close to
death.


But Angell did have prostate cancer and suffered from nausea, weakness, incontinence and feelings of
hopelessness.


He dreaded entering the hospital. So the night before he was to be admitted, he shot himself. His wife,
Florence, found his body the next morning.


Angell's daughter, Dr. Marcia Angell, is executive editor of the New England Journal of Medicine. She
has become one of the nation's most influential crusaders for doctor-assisted suicide.


"He felt he wouldn't have been able to ask for help in committing suicide, and he was right," Angell says.
"The option would have been taken away from him. So he felt he had to do what he did while he still
could."


More Americans will face such choices in the future, says medical ethicist Arthur Caplan, director of the
Center for Bioethics at the University of Pennsylvania.
"The issue of assisted suicide is not going to go away," Caplan says. "We're going to return to it as the
boomers go into old age. And we're going to see tremendous concern about the cost of end-of-life care
move through society. My hunch is the pressures to legalize will grow stronger, not weaker."


As co-director of Common Ground, a national project trying to unite people on both sides of the assisted-
suicide issue, Caplan sees a goal both proponents and opponents can support - even if they disagree
about everything else: End-of-life care can be improved.


To that end, a national coalition of 72 groups, called Last Acts, aims to change the way we die. Former
first lady Rosalynn Carter heads the coalition, and the Robert Wood Johnson Foundation is giving $12
million to develop new models for end-of-life care.


The coalition also includes the American Cancer Society, the American Nurses Association, Choice in
Dying, groups that serve the aging, hospice associations and Catholic lay societies. Some members
support assisted suicide. Some don't.


In Oregon, a 1,000-member group of doctors, Physicians for Compassionate Care, formed after the 1994
vote. Its purpose is to fight assisted suicide. In addition to its political activism, member doctors are
stressing better end-of-life care as an alternative to suicide. On Oct. 4 the group will sponsor a Portland
symposium on "Advanced Pain Management and Comfort Care."


An Oregon doctors' group on the other side of the assisted-suicide issue, Physicians for Death With
Dignity, also supports improved care for the dying.


The fact that so many diverse organizations have gathered behind one goal shows the depth of the
national transformation.


Medicine is finally facing death.


Oregon clearly has played a key role in that turnabout. the outcome of the state's great debate about
assisted suicide is still in doubt. But activists on both sides of the issue agree that Oregon voters have
delivered a dramatic wake-up call to mainstream health professionals.


"The great irony," says David Mayo, a philosopher with the University of Minnesota's Center for Bioethics,
"is that they didn't give a damn about palliative care until the Oregon initiative passed."


Mark O'Keefe writes about doctor-assisted suicide for The Oregonian's Change and Values team. Leave
a message for him at 778-7175 or fax 294-4052. Send mail to 1320 S.W. Broadway, Portland, Ore.
97201, or e-mail to markokeefe@news.oregonian.com.
                                           “One Man’s Dying”

Troy Thompson's diagnosis was a death sentence, but hospice is helping him live his last months
to the fullest


Tuesday, September 30, 1997
By Mark O'Keefe
of the Oregonian staff


Troy and Marilyn Thompson walked out of the doctor's office stunned and speechless, silently praying
that what they knew in the pits of their stomachs somehow wasn't true.


They walked into the elevator and stood there in quiet panic as the lights flashed four, three, two, one.


They squinted in the bright spring sunlight outside the Neurological Sciences Center Building. Troy
Thompson moved easily - his legs were still fine. It was just his upper body - his arms, shoulders and
back - that ached slightly, muscles twitching uncontrollably.


The newlyweds remember walking hand-in-hand through the parking lot, toward Troy's white Toyota
pickup. Troy used the same truck to haul shrubs, trees and plants, handling the greenery with a
tenderness unusual for a 6-foot-4, 240-pound man.


Troy took the driver's seat and rolled down his window. Marilyn did the same. A breeze blew through the
cab, cooling their sweaty faces.


Their eyes met, sharing the fear and desperation that - from that moment on - threatened to overwhelm
their lives. They reached for each other. Sobs cut the silence.


Suddenly, everything had changed.


Inexplicably, Troy giggled. Then he broke into a side-splitting guffaw. Marilyn couldn't help but join in the
strange laughter.


"But there was no joy in it," Marilyn says. "There was no reason to be laughing."


The Thompsons had found happiness together after years of struggling alone.
Troy worked as a landscaper with the Marion County Corrections Department. His first marriage broke up
after only a year.


Then he discovered Marilyn. Eight years older than Troy, she was a dynamic, 5-foot-11 blonde, also
divorced. She had risen from a secretary's job at a real estate office in Welches, near Mount Hood, to
managing a team of 25 agents for Stan Wiley Realtors in Wilsonville, just south of Portland.


Troy often surprised Marilyn with flowers and corny, handwritten notes. Marilyn filled a desk drawer at her
office with them.


"They say when two people love each other," one read, "there is something foreseen. Every day they are
together is just...peachy keen!!! Love you, Troy."


They married in 1992, blending three daughters - Summer, Holly and Michelle - into one family.


Within six months, Marilyn was pregnant. If it was a boy, they would have named him Troy. It was a girl,
so they named her Tory - short for Victory.


They lied in a comfortable Lake Oswego home but talked of getting some country acreage, where they'd
create a dream home with a view.


The problem first showed up at Troy's job. In July of 1993, he climbed onto the roof of the Marion County
Jail to wash it down. He grabbed a heavy rubber hose, and a twinge shot through his back. At first, he
thought he'd just strained something.


Back home, Marilyn massaged his shoulders, trying to exorcise stubborn knots from his muscles with her
fingertips. When that didn't work, Troy went to their family doctor. She referred him to a back specialist,
who sent him to a physical therapist.


The twitch appeared in the muscles of his left shoulder. Troy kept it to himself for a few days before
showing Marilyn one night in bed.


Then Troy's speech became slurred, as if he had downed a few beers.


Their doctor referred Troy to a Portland neurologist, Dr. Daniel Gibbs. He brought up the possibility the
symptoms cold indicate amyotrophic lateral sclerosis - ALS, or Lou Gehrig's disease.


ALS defies easy diagnosis. Doctors identify it through a battery of tests and a process of elimination.
Troy was as scared as he had ever been about anything. But he didn't want Marilyn to know it, and he
didn't want her to see him break down if he got bad news. He asked her to stay home when he went to
get his results.


She remembers begging him to let her go. "Whatever the news is," she says she told him, "I want to be
there with you. It doesn't matter how you react."


To Troy and Marilyn, Gibbs seemed polite, almost too polite - as if he felt sorry for them.


Gibbs remembers the delicate moment, too. Pointing to X-rays, he said, "Your brain and your spine have
no problems."


"That's good," Troy said, holding Marilyn's hand.


"But I think you should have some further tests done. It could be Lou Gehrig's."


He suggested seeing Dr. Wendy Johnston, one of the Northwest's top ALS experts. "If she tells you you
have it," Gibbs said, "you have it."


At that moment, they both knew the truth. It was a knowing of the heart, not the head. They walked out
of Gibbs' office to the elevator, to cry, then laugh, in Troy's truck.


The Thompsons left the parking lot outside Gibbs' office, drove back to Lake Oswego and pulled into their
driveway. Troy headed to his garden to think while trimming his bonsai, miniature trees. Marilyn stood
numbly in the driveway, barely able to feel the warmth of the pavement on her bare feet.


She knew a little about ALS. She had never heard of Lou Gehrig, the famous New York Yankees
outfielder of the 1930s. At 36, Gehrig found his upper body weakened. His muscles twitched. His
speech slurred. He died within two years, of ALS.


Marilyn heard the telephone ring.


Her daughter Holly walked out to the driveway and handed her a cordless phone.


It was their family doctor, fresh off her own telephone call from Gibbs, the neurologist the Thompsons had
just seen.


"Marilyn," said Dr. Paula Kilpatrick. "I'm so sorry." She talked as though the Lou Gehrig's diagnosis was
definite.
Marilyn's heart sank. Then she erupted.


"No! We don't know that yet! Dr. Gibbs said it could be any number of things. We have to have more
tests done."


"Marilyn, he's pretty sure. The fact that he's sending you to Dr. Johnston means he's fairly confident."


Marilyn's mind flashed to an image of her father, also 6-foot-4, who lost control of his muscles, then died
with Parkinson's disease. She didn't know how to help him and didn't know whether she could help Troy,
help the kids, help herself.


"What is Lou Gehrig's disease?" Marilyn asked. She mentioned her father and his long struggle with
Parkinson's "Tell me it's not as bad as that."


"This is much worse," Kilpatrick said. "This is the type of diagnosis a doctor never wants to give because
there is no known cure."


Marilyn walked into the kitchen, hung up the phone and leaned her back against the wall.


She collapsed in a heap, as if her legs had been cut out from under her. She wailed so loudly that Holly,
then 15, came running. Not knowing what was the matter, the teenager dropped to her knees and
wrapped her arms around her mother, who crouched in the fetal position, slowly rocking like a baby.


Troy came in from the garden and called the Rev. Keith Reetz at Beaverton Foursquare Church.


The pastor arrived in a few minutes. Sitting on a bench next to Troy's half-pruned bonsai trees. Reetz
remembers the Bible passage they read, Isaiah 43:


"Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass
through the waters, I will be with you; and when you pass through the rivers, they will not sweep over
you."


Beaverton Foursquare believes in physical healing and other miracles described in the New Testament.
Reetz asked God to take the ALS from Troy's body.


But Troy, his speech slurring more than ever, had another prayer. He asked for God's grace, for the
strength and courage to endure the path, however hard it might be.


There was another, unspoken, option.
In 1994, Oregon became the nation's first state to sanction doctor-assisted suicide for those diagnosed as
having six months or less to live. Troy Thompson might soon qualify.


But he wouldn't even consider it. Life was sacred, he believed. It couldn't be taken, no matter how
painful it became.


The meeting with Wendy Johnston, the ALS specialist at OHSU Hospital, confirmed what the Thompsons
already knew. Troy had the disease. They got a preview of what it did to people that day in Johnston's
waiting room.


Like Troy, some patients could still walk and talk.


But others couldn't speak or move. They relied on caregivers with cotton swabs to remove mucus that
constantly dripped from their noses. One man sat paralyzed in a wheelchair, his head tilted to the side.


ALS apparently attacks at random, striking one of every 50,000 people. About 13 new cases are
diagnosed every day in the United States. The disease targets motor neurons, the cells that transmit
signals from the brain to voluntary muscles throughout the body.


When motor neurons die, the brain loses its messengers. Muscles weaken, atrophy and die.


One recent study showed that men with ALS had a higher incidence of exposure to agricultural chemicals
than other men of that same age.


Troy, a licensed pesticide operator, had been exposed to chemicals for five years.


Still, no one knows for sure how Troy or anyone else gets ALS.


Sight, touch, hearing, taste, smell and the muscles of the eyes and bladder generally continue
unaffected. Sexual function remains intact. The disease eventually paralyzes the entire body but spares
the mind.


Stephen Hawking, the world-renowned physicist, has ALS.


Johnston doesn't mince words with her patients. She says the disease feels like being stranded on a
desert island. The patient's healthy and active mind becomes trapped in a motionless body.


She remembers the Thompsons acting like most families she sees the first time. Marilyn was so
impatient she later apologized. Troy couldn't look the doctor in the eye.
Johnston doesn't give her position on doctor-assisted suicide for ALS patients. But she had reservations.


"I'm concerned that sympathetic, well-meaning physicians would facilitate death...without knowing how to
facilitate living," she says.


Still, she understands why ALS patients would consider suicide.


"Most people's attitude about ALS is negative," Johnston says. "It's going to kill you. It's going to shorten
your life. It's miserable. If there is any disease that seems to justify physician-assisted suicide, this is it."


Yet, she says, "Most people with ALS do want to live."


Although the muscles of his upper body weakened, and his speech became increasingly slurred, Troy
continued to work. He told his bosses that he was not a problem drinker but an ALS patient.


At home, he tried to keep things normal. On an October night in 1994, five months after the initial
diagnosis, Troy, tired from a day's work, changed into his Levis. He slipped on a T-shirt bought the winter
before at Mount Bachelor, where he had sped down the expert runs.


The smell of pasta sauce filled the house as Marilyn cooked Troy's favorite meal, fettuccine alfredo. Troy
chased 1-year-old Tory, who was crawling from room to room.


"I'm gonna getcha; I'm gonna getcha," Troy said as Tory, squealing with delight, moved from the living-
room carpet onto the hardwood floor in the kitchen. Troy, bent over, arms outstretched, followed, a smile
on his face.


He toppled forward. Normally, his body would have responded reflexively, as if he were making an
adjustment while skiing down Mount Bachelor.


But the messengers from Troy's brain never made the journey to the muscles of his hands, arms,
shoulders and back.


"I knew I was falling," he remembers, "but I couldn't stop myself."


Worst of all, all 230 pounds of him was falling on his 20-pound daughter. "I let my head go first," Troy
says, "to avoid crushing her with my body."


His chest landed on Tory's back with a dull thud, and his face smacked the hardwood floor with a sharper
whack. Marilyn turned a saw her husband on top of her daughter, both of them unable to move.
"Holly, help me!" Marilyn shouted.


Troy moaned, sounding like Chewbacca, the big, furry "Star Wars" character. Eventually, it would be the
only sound he could make.


Marilyn rushed over to him. "It's going to be OK. It's going to be OK," she remembers saying, not
convinced it would be.


She rolled Troy off Torn and onto his back. Blood tricked from a deep cut across the bridge of his nose,
which had already begun to swell. His eyes bulged to the size of quarters.


"He was trying to tell me something," Marilyn says, "but he couldn't get it out."


Holly grabbed Tory and took her into the den, away from the scene. The crying baby had a cut under her
eye. Marilyn, on her knees in the kitchen, sensed her husband's greatest concern was for her daughter.


"Bring Victoria here!" she yelled.


Holly handed the baby to her mother. Tory squirmed.


"She isn't interested in me," Marilyn said. "She wants her Dad."


Marilyn placed Tory on the floor, next to Troy. The baby gently patted her father on the shoulder,
repeating, as if it were a healing chant, "Papa, Papa, Papa."


Tory stopped crying. Troy calmed. Marilyn took her husband and daughter to the emergency room at
Legacy Meridian Park Hospital in Tualatin, where troy was treated for a broken nose, Tory for a minor cut.


Troy's condition deteriorated each day. It wouldn't be long before he couldn't make it to the upstairs
bedroom.


Their thoughts turned again to building a one-story dream house in the country. They found 2 1/2 acres
high on a Newberg hillside with a panoramic view of the Willamette Valley.


They asked Dr. Johnston about the house.


"Is it worth it?" Marilyn asked in the fall of 1994. "Should we go through the trouble and the hassles?"


Johnston encourages patient autonomy, a key element in the newest medical attitudes about dying. If
patients want to try an unconventional treatment, such as naturopathy, Johnston generally approves. If
they want to climb Mount Hood or go surfing in the Pacific Ocean - before it's too late - that's their
decision.


"Do it," the doctor told Troy and Marilyn. "But do it by next summer."


By the following August, Troy was in a wheelchair, his once sturdy physique only a memory. The house
still lacked doorknobs and carpeting, but the Thompsons moved in anyway, ignoring the pleas of their
builder.


Troy couldn't walk or talk, but Marilyn worked to make sure he remained head of the household.


Wearing sunglasses and sitting in his wheelchair, Troy sat on the deck in their front yard, directing two
workers positioning three boulders.


The clock was running at $120 an hour. But Marilyn took time for Troy to have a say in the process. The
crew used an expensive piece of heavy equipment to place the boulders in various, spots, waiting for
Troy's reaction.


Marilyn recalls standing next to her husband and asking him "yes" and "no" questions. Eyebrows up
meant "yes"; eyebrows down, "no."


"Troy, is that OK?"


Eyebrows down.


"So which one isn't right? The middle one?"


Eyebrows down.


"The one on the left?"


Eyebrows down.


"The one on the right?"


Eyebrows down.


"Do you want it turned?"


Eyebrows up.
"Do you want it turned to the left?"


Eyebrows down.


"OK, do you want it turned to the right?"


Eyebrows down.


"Well, there's not a lot of options left, Troy."


A worker shouted, "Maybe he wants them all switched around."


"OK, so do you want the whole thing moved further toward the road, Troy?"


Eyebrows up, several times, as if charged by electricity.


The workers and Marilyn broke out in applause and laughter.


Despite his will to live, the love of family and the emotional boost of moving into a new house, Troy faded
fast, and conventional medicine had little to offer. On Christmas eve 1995, Marilyn thought it was all over.


Troy's paralyzed legs stiffened. His breathing grew more labored. The tougher the breathing, the more
Troy panicked.


ALS patients often die when their breathing muscles fail to deliver enough oxygen.


But, somehow, Troy made it through the night to Christmas Day.


Convinced Troy would die within weeks, Johnston referred him to hospice, a team of health professionals
who emphasize comfort rather than cure. Generally, only patients diagnosed as having six months or
less to live qualify.


When the first nurse from St. Vincent Hospice arrived at their house, Marilyn was exhausted. She was
still working while she struggled with constant red tape: Social Security disability, insurance coverage,
home health care.


She thought hospice would be just another resource. In fact, it was the turning point. From then on
Marilyn and Troy's efforts to maintain his independence became part of a team effort to make comfort,
meaning and dignity part of his last days.
"It was finally," Marilyn says, "somebody in one central place that could meet all of our needs instead of
having to go all over, using five different people. If I had to call someone in the middle of the night, they
were there. Hospice was on speed dial on every phone in the house."


It was through hospice that Troy first took morphine. The drug improved his breathing, calmed his
disposition and eased his pain in his neck and shoulders.


Then Josh Henley arrived. The 22-year-old home-health worker went to work, using technology to keep
Troy as independent as possible. They went through four computers, finally settling on a Pentium with an
oversized monitor.


Troy had separate remote controls to operate two VCRs, a VCR programmer, satellite television, cable
television, lights, a stereo and a fan. With the help of a California company skilled in technology for
people like Troy, Henley funneled all the gadgets into one remote. He eliminated multiple monitors, too,
displaying everything on one computer screen.


Troy could still move the big toe of his right foot. With that, he controlled a mouse that controlled the
computer.


The technology gave Troy new independence, enabling him to buy Marilyn gifts through an Internet
catalog. With landscaping software, he designed the ultimate yard.


He learned to "talk" again, typing words and phrases with his toe, then saving them on the hard drive.
The computer uttered the sentences in a digital voice. Favorites included:


"We have a problem here, Houston," when Troy needed his pillows moved or his arms adjusted.


"Just joshing around," when Josh entered the room.


"Ah ha, little lady" and "How's my bride?" when Marilyn returned from work.


When motor neurons no longer travel to his toe and eyebrows, Troy will lose most of his ability to
communicate, unless the Thompsons buy a $20,000 computer controlled by eye movement.


If, like physicist Stephen Hawking, Troy chooses a ventilator that breathes for him, he could live
indefinitely.


But so far Troy has decided against that, even though Marilyn would like him to get one. For Troy,
suicide is morally wrong. But refusing to artificially sustain your life is OK.
In addition to Henley, three caregivers take turns watching over Troy while Marilyn works or sleeps. Their
salaries total more than $5,000 a month.


Thanks in large part to a creative case manager at ODS Health Plan, Troy's insurance provider, most of
that, as well as the hospice and medical care, is covered. Last year, the Thompsons' out-of-pocket
medical expenses were $15,000.


Troy has found meaning, trapped in a motionless body. But he has found it with the help of hospice, a
neurologist, a home-health worker, a flexible insurance company, a church, a financially able wife, and
family and friends.


Their insurance policy expires Dec. 1. After that, the Thompsons will be on Medicare, which covers
hospice but doesn't pay for home health care workers like Henley. "That's our next challenge," says
Marilyn.


Oregon's 1994 vote for doctor-assisted suicide has provoked changes in a health care industry suddenly
motivated to find better ways to die. A few years ago, Troy would not have received the care he enjoys
now, says one of his hospice nurses, Doris McAlister.


Doctors, not the Thompsons, would have made the big decisions. They would have pushed him toward a
nursing home or hospital.


"There, he would probably have bedsores," says McAlister, who worked 13 yeas in hospitals and five in
hospice before retiring this summer. "He wouldn't have a computer or a way to communicate. He
wouldn't get the exercises he gets every day. They would just let him lie there."


The photographs on the dining room wall celebrate the man Troy was, and the man he has become. One
picture portrays a tan, muscular Troy, wearing a sleeveless shirt.


Another picture has Troy lifting his daughter above his head with one hand. The caption reads, "Look
Mom. I can fly."


A third has Troy in a Hawaiian-style shirt, wrapping his arm around Marilyn on his 30th birthday, spent in
the Bahamas.


Today, however, is Aug. 29 - Troy's 36th birthday, a birthday no one expected him to reach.


the man lying on his back in the bedroom is 100 pounds lighter than the man in the photos. He can't
speak. He can't eat. He can barely move.
But his eyes twinkle, then moisten, as friends and family, one by one, make their way to his bedside to tell
them how much they respect him, admire him and need him.


Troy can still smile. It's not a toothy smile, but his lips twitch upward in a silly half-grin. It surfaces
frequently.


Among the 40 people at the celebration are two who have lost loved ones to Lou Gehrig's disease. One
of them, Tom Millan, sheepishly approaches Troy's bed.


"This doesn't hurt, does it?" he says, clutching Troy's limp hand.


Troy's eyes sparkle.


"Hey, you're an inspiration," Millan says. "You know that."


Millan's wife, Karen, died in May 1993, after more than four years with ALS.


She ordered ad read Derek Humphry's best-selling book, "Final Exit," which gives detailed instructions on
how to end your life without a doctor's help. She obtained the lethal medication and wrote in her diary, "I
want out."


In the end, she chose not to kill herself. But her diary entries showed the despair that ALS can produce.


Away from Troy, Millan shakes his head.


"It's just his attitude," Millan says, "just the way he has dealt with this without bitterness or rancor, without
being mad at God or at life. It just amazes me."


When Marilyn and Troy hear about the comment, she smiles, and the corners of his mouth curl upward.


"I suppose we could be bitter people, couldn't we, Troy?" Marilyn says. "I guess it all depends on how
you look at this."


Mark O'Keefe writes about doctor-assisted suicide for The Oregonian's Change and Values team. He
reconstructed scenes and conversations for this story by interviewing participants and double-checking
reconstructions of events with them. Leave a message for him at 778-7175 or fax 294-4052. Send mail
to O'Keefe, or the Thompsons, at 1320 S.W. Broadway, Portland, Ore. 97201, or e-mail to
markokeefe@news.oregonian.com. Troy Thompson's e-mail address is o2bcool@msn.com.
                                                Oregon Law

House Votes to Block Suicide Law


71 Democrats join Republicans to thwart Oregon's Death With Dignity Act, but the vote margin is
not veto-proof


Thursday,                             October                             8,                           1999
By Mark O'Keefe and Dave Hogan of The Oregonian staff


WASHINGTON - The U.S. House of Representatives voted 271-156 Wednesday to promote pain relief
and block Oregon's one-of-a-kind law permitting physician-assisted suicide.


Although the Pain Relief Promotion Act does not mention Oregon by name, the state clearly was the
target of the its main sponsor, Rep. Henry Hyde, R-Ill.


He referred to Oregon physicians aiding in the deaths of their patients as "hangmen," "social engineers"
and "messengers of death." He said "doctors are authorized now by Oregon law to put down their
stethoscope and pick up the poison pill and proceed to assist in the execution of their patient."


The bill does not technically overturn Oregon's Death With Dignity Act. Instead, it amends the 29-year-
old Controlled Substances Act to say that federally controlled substances cannot be used in assisting
suicides, even if a state law permits such use. The problem for Oregon physicians and pharmacists is
that such substances, particularly barbiturates, are the only drugs that can efficiently end a person's life
without suffering.


Even if doctors followed the letter of the Oregon law, they could be in violation of federal law, facing 20
years in prison. Few Oregon doctors would be likely to risk that.


The five-member Oregon delegation vigorously defended the state's suicide law and fought for Oregon's
right to make its own laws, although some of the members philosophically oppose assisted suicide. Rep.
Peter DeFazio, a Democrat, was the most animated, waving his arms and repeatedly interrupting
Republican members, asking for floor time to defend the Oregon law, usually to no avail.


When DeFazio was allowed to speak, he pointed his finger at Hyde and enounced the powerful
Republican's "terrible, denigrating statements about the people of Oregon." Hyde sat motionless,
apparently unfazed, refusing to look at DeFazio.


DeFazio also characterized Republicans, usually staunch supporters of states' rights, as hypocrites.
"Today," he said, "they're suddenly standing up and saying, 'Well, we're for states' rights - as long as we
agree with the state. Pre-empt the will of the Oregon people.'"


In the end, the vote was similar to past decisions on abortion, with 71 Democrats joining 200
Republicans. Twenty Republicans and one independent joined Democrats in opposition. The focus now
turns to the Senate, where a companion bill is making its way through committee, and to President
Clinton, who has not said whether he will sign it.


The bill has broad support in the Senate, where it is sponsored by Sen. Don Nickles, R-Okla., the majority
whip, and has been endorsed by a few influential Democrats, including Sen. Joseph Lieberman, D-Conn.


Nickles said recently he had enough votes to pass the bill and to shut down a filibuster planned by Sen.
Ron Wyden, D-Ore.


Where Clinton stands is less clear.


He expressed his strong philosophical opposition to assisted suicide in 1997, when he signed a bill
forbidding federal funding for the practice and warned it could set Americans "on a disturbing and perhaps
dangerous path."


But Clinton has not commented on this year's bill, and the Justice Department issued a letter last week
opposing one section of the anti-suicide legislation because it "is particularly intrusive to state policy-
making."


Oregon Democrats conceded last week that they didn't have the votes to defeat Hyde in the House. But
they found encouragement in the fact that the final tally was 19 votes short of the two-thirds margin
needed to override a presidential veto.


"That's what I cared about," said Rep. Darlene Hooley, D-Ore., referring to the veto implications.


Coincidentally, Wednesday's vote came on the second anniversary of the Death With Dignity Act's going
into effect after it was held in limbo by a court injunction.


In 1994, 51 percent of Oregon voters first approved of assisted suicide after a campaign pitting the
Roman Catholic Church against a coalition of right-to-die activists who appealed to the notion of patients
making their own choices.


The state Legislature sent the issue back to voters in 1997, but this time, 60 percent of Oregonians
approved the law, with the increase attributed to voter resentment that politicians second-guessed them.
Wednesday's House floor debate was similar to the campaigns in Oregon in that issues of life and death
were discussed, with many members telling stories of friends' and loved ones' last days, illustrating how
personal experiences frame views on end-of-life care.


What was not discussed, as it was in Oregon, was whether patients had the right to determine the time
and manner of their won deaths. It was almost as if it was a foregone conclusion that nearly all the
elected representatives opposed assisted suicide.


1997 Vote
The only previous time the House tackled assisted suicide was in 1997, when on a 398-16 vote it banned
federal money for the practice.


No member stood on the House floor to argue for "a right to die" with the help of a physician.


"I think it's too controversial," Rep. David Wu, D-Ore., said after the vote. "They're not wiling to go there."


The outcome of the vote was foreshadowed by the rhetorical clout each side unleashed. Among Hyde's
supporters were members with medical degrees who led the recent House debate over patients' rights.


Meanwhile, Oregon's junior delegation was left to fend almost entirely for itself.


Although there were moments of fist pounding and pitched voices during the three-hour debate, the issue
wasn't a high priority for many members. Rep. Bart Stupak, D-Mich., a co-author, said many learned
about the same issue only in the past week.


that unfamiliarity became evident as one key player, Rep. Nancy Johnson, R-Conn., acknowledged that
until moments before the vote, she did not know the difference between physician-assisted suicide and
euthanasia.


Only Assisted Suicide


The Oregon law permits only assisted suicide, which is self-administration with a physician's prescription.
It does not permit euthanasia, which would be a doctor directly ending the life of a patient.


"I think most members were unaware until DeFazio mentioned that you had to administer this yourself,"
said Johnson, who opposed Hyde's bill and offered a substitute. "They have treated it as the same."


According to the only state statistics available, 15 Oregonians ended their lives with a doctor's
prescription in 1998, and eight more received a prescription but did not take the medication.
Much of the debate Wednesday was about doctors in the other 49 states. When a similar bill stalled
before reaching a House floor vote in 1998, medical organizations argued that it would have a chilling
effect of physicians giving pain medication for nonsuicides.


So Hyde and fellow drafters of the 1999 bill called it the Pain Relief Promotion Act. Language was added
saying that alleviating pain with a controlled substance was a legitimate medical purpose "even if the use
of such a substance may increase the risk of death."


That addition was important to the American Medical Association, which opposed the 1998 bill but
endorsed the 1999 bill.


Both supporters of this year's bill and detractors from Oregon said the AMA's support was the single most
important factor in Wednesday's passage.


Nonetheless, opponents of the Hyde bill argued that making assisted suicide part of the Controlled
Substances Act could put Drug Enforcement Administration agents into a role of second-guessing
doctors.


The mere possibility of such scrutiny could prevent physicians from giving adequate pain medication,
some members argued.


"This debate is not about physician-assisted suicide, which all of us, collectively, have said we don't have
the stomach for," said Rep. Sheila Jackson Lee, D-Texas. It's about "jail time for physicians in America,"
she said.


Although there were no arguments for patient choice Wednesday, there were many for state self-
determination.


Rep. Ron Paul, R-Texas, said he opposed abortion and assisted suicide, "and nobody can be more pro-
life than I am." Yet he spoke against the bill because it violated the principle of states' rights, which recent
Supreme Court decisions have affirmed.


"If we're here saying we should undo the Oregon law, then what's to prevent us from undoing the Texas
law that protects life?"


But Paul was outnumbered by colleagues who said the issue was not about Congress' nullifying the
Oregon law. Instead, it's about whether an exception should be made in the federal Controlled
Substances Act to allow a single state to permit suicides.
In 1998, Attorney General Janet Reno angered congressional opponents of the Oregon law with her
interpretation of the Controlled Substances Act. She said the law could not be used to prevent assisted
suicides in Oregon.


"Oregon has the right to say there will be no states penalties for certain conduct," said Stupak, the
Michigan representative. "But Oregon doesn't have the right to say its law will prevent the federal
Controlled Substances Act from being enforced."


What seemed to resonate with members Wednesday that did not connect with Oregon voters were
arguments that permitting assisted suicide in one state could lead to a slippery slope of abuses.


Hyde said Oregon was "just the beginning" of the devaluing of human life. "The unwanted, the uninsured,
the poor, the elderly, the frail, the diseased, the profoundly handicapped - they're at risk," Hyde said.


Other legislators invoked the Netherlands, where abuses have included euthanasia of deformed infants
and of those who have not given their explicit permission.


When asked after the vote what motivated him, an Illinois legislator, to work so hard against an Oregon
law, Hyde said, "It's respect for life. It's a consistent ethic. Many of us who call ourselves pro-life have
been ridiculed as only caring about human life up until the moment of birth.


"This is at the other end of the continuum. It's a consistent respect for the dignity and the value of each
human life, and particularly when it's uniquely vulnerable, near death."


When asked whether he had a message for Oregonians, Hyde smiled and said, "I love Oregon. It's a
beautiful state."


Erin Hoover Barnett and Jim Barnett contributed to this story.


Mark O'keefe can be reached at The Oregonian's Washington, D.C., office at 202-383-7857 or by e-mail
at mark.okeefe@newhouse.com.


Dave Hogan can be reached at 202-383-7814 or by e-mail at dave.hogan@newhouse.com


                                                Pain Relief

Pain Relief Promotion Act 1999 (H.R. 2260) to Combat Physician Assisted Suicide


By Alex Schadenberg, Executive Director, Euthanasia Prevention Coalition of Ontario
Representatives Henry Hyde (R-IL) and Bart Stupak (D-MI) introduced the "Pain Relief Promotion Act
1999" (H.R. 2260) on June 17, 1999; as a response to the issue of the use of lethal drugs for the purpose
of assisted suicide and euthanasia that is legally taking place in the state of Oregon. An identical bill was
introduced in the Senate by Senators Don Nickles (R-OK) and Joe Lieberman (D-Conn) on June 24,
1999. This legislation represents the culmination of a year long debate over the effective response to
assisted suicide that has seen two previous bills withdrawn due to technicalities.


This new bill would prevent federally controlled substances from being used to assist in suicides in a state
like Oregon (which legalized physician-assisted suicide in a referendum). This bill also has positive
impacts on the use of federally controlled substances for efforts to control pain for dying patients and
clarifies the proper use of pain management medication that might have an unintended effect of causing
an earlier death. Finally this bill acts to promote palliative care through new funding initiatives for training
health care professionals in the newest and most effective pain management techniques and
medications.


This bill can be separated into two sections which are : Title 1: Controlled Substances Act, and Title 2:
Promoting Palliative Care.


Under the first section of the legislation the act reinforces the existing standards in relation to controlled
substances. This section of the legislation reinforces the proper use of pain control medication, allowing
the use of controlled substances in the rare case of when such use may increase the risk of death while
forbidding the use of controlled substances for the use in assisting a suicide. The legitimate use of pain
management medication has simply been reinforced in this section with particular exclusion for use in
assisting a suicide.


This section of the bill also provides new training for health care professionals in the legitimate use of
controlled substances for pain and symptom management.                    Training will be based on the
recommendations by the secretary of Health and Human Service, based on the best current medical
knowledge.


The second section of the legislation gives new responsibilities to the Agency for Health Care Policy and
Research to promote better understanding of and expanded training in palliative care. It also provides $5
million per year to support training programs in palliative care. These funds would be paid out to groups
based upon application to the Health Resources and Services Administration.


This bill is an excellent attempt at stopping the use of federally controlled substances for use in physician-
assisted suicides. Currently this is only a problem in Oregon but if other states were to follow the lead
from Oregon then this bill might result in preventing the use of federally controlled substances for use in
physician-assisted suicide throughout the U.S.
This legislation is particularly effective in stopping "Mercy Killing" in Oregon because the act would cause
the use of controlled substance it assist in suicide to violate federal law - the Controlled Substances Act -
regardless of whether or not its use violates any Oregon state prohibition. In effect, therefore the Act
would create a uniform national standard under which it would never be legitimate to use controlled
substances to assist in suicide or commit euthanasia.


If the Pain Relief Promotion Act becomes the law it is likely to deter virtually all assisted suicides because
under the Oregon Death with Dignity Act the physician is required to send records to the state
government concerning the act of assisted suicide. These records must include the use of prescribed
substances for the assisted suicide. The Controlled Substances Act enables the federal government to
subpoena these records which would provide the evidence for prosecutions.


Many organizations have now stated their support for the legislation including the: American Medical
Association, Christian Medical Dental Society, National Hospice Organization, Hospice Association of
America, Aging with Dignity, American Academy of Pain Management, American Society of
Anesthesiologists, Americans for Integrity in Palliative Care, National Conference of Catholic Bishops,
National Legal Center for the Medically Dependent and Disabled, National Right to Life Committee.


Many individual endorsements have also been received for legislation which include: Dr. C. Everett Koop,
former U.S. surgeon general and Dr. Herbert Hendin, Director of American Foundation for Suicide
Prevention, and many others.


"This Act strikes the right balance, by promoting the much-needed role of federally regulated drugs for
pain relief while reaffirming that they should not be abused to assist patients' suicides." Former U.S.
Surgeon General C. Everett Koop, M.D.


"The Pain Relief Promotion Act fosters pain relief and palliative care, essential positive alternatives to
euthanasia. It also ensures that narcotics and other dangerous drugs controlled by the federal
government are not used to kill patients." Burke Balch, director of National Right to Life Department of
Medical Ethics.


The Pain Relief Promotions Act is an incredible step forward for pro-life efforts in preventing euthanasia
and assisted suicide. Pro-life leaders in Canada need to watch closely whether this Act passes into law
and then prevents assisted suicide. Our primary concern is for marginalised persons [the mentally and
physically disabled, the elderly, the chronically ill, the poor, the lonely and the depressed] who are directly
threatened by assisted suicide and euthanasia. These are the people who might be pressured into
"choosing" assisted suicide or killed without their consent.


                                             U.S. Psychiatry
Psychiatry and Assisted Suicide in the United States

New England Journal of Medicine - June 19, 1997 - Vol. 336, No. 25
EDITORIAL

After years of debate over the ethical and legal issues in physician-assisted suicide, empirical research is
beginning to infuse a realistic clinical perspective into this previously theoretical controversy. Studies
reveal that a host of practical issues must be examined as we consider whether to legalize physician-
assisted suicide in the United States.


The appropriate role of psychiatrists in legalized physician-assisted suicide has yet to be defined.
Groenewoud and colleagues, in a survey of Dutch psychiatrists described in this issue of the Journal,
raise complex questions. [1] When should a psychiatrist be asked to evaluate a patient who requests
assistance in suicide? What should be the goals of such an evaluation? The most provocative question
the authors raise is whether assisted suicide is ever justified for patients whose intractable suffering is
caused by a mental disorder, not by a terminal illness.


Physicians in the Netherlands ask for a psychiatric evaluation in only 3 percent of cases in which patients
request assistance with suicide. Experts in the United States have recommended mental health
consultation for some, most, or all such patients. [2, 3] Psychiatric consultation has two potential
objectives. Some experts have proposed that mental health professionals are best qualified to determine
whether a request for assisted suicide is voluntary and rational or whether it reflects distorted judgment
due to a mental disorder. This objective limits the psychiatrist's role to that of evaluating the patient's
competence. A broader and more traditional objective is to evaluate the patient and provide treatment for
potentially remediable sources of suffering, including depression. With this objective, the psychiatrist's
role is similar to that of a consultant in palliative care. [2, 4]


Formal evaluation of a patient's competence by a mental health professional has been viewed as an
essential safeguard of autonomy for patients who request physician-assisted suicide. For example, the
Oregon Death with Dignity Act, a referendum approved by voters in 1994, states that before honoring a
patient's request for a lethal prescription, the primary physician must refer the patient to a psychologist or
psychiatrist if the physician believes a psychiatric disorder may be present. No life-terminating medication
may be prescribed if the mental health professional finds that the patient is "suffering from a psychiatric or
psychological disorder, or depression causing impaired judgment." [5]


Recent studies show the limitations of this safeguard. The majority of Oregon psychiatrists support the
legalization of assisted suicide and are willing to evaluate patients under the Death with Dignity Act. [6]
Only 6 percent, however, are very confident that they can determine, in the context of a single
consultation, whether a mental disorder is influencing a person's decision to request physician-assisted
suicide. A depressed person may articulate a coherent set of values and a convincing analysis of the
benefits versus the burdens of continued life, even when hopelessness, poor self-esteem, and pessimism
permeate the decision. Successful treatment of a mood disorder may alter the patient's outlook and
therefore the desire for death. [7] On the other hand, the presence of depression does not always
invalidate a voluntary choice. Successful treatment of a major depressive disorder increases the desire
for life-sustaining therapy in only a minority of patients. [7]


A psychiatrist who is asked to evaluate a patient's request for assistance with suicide is forced to classify
the patient as either competent or incompetent, even though, in reality, competency and incompetency
occupy a continuum. There is no established threshold for determining whether a person is competent to
choose suicide. In the absence of a standard, the psychiatrist's evaluation may reflect his or her personal
values and beliefs about this contentious issue more than psychiatric expertise. [4] Indeed, psychiatrists
in Oregon who oppose the legalization of physician-assisted suicide are likely to refuse to evaluate
patients who request it, whereas psychiatrists who favor legalization are willing to evaluate such patients.
[6] These psychiatrists' opinions about whether assisted suicide should be allowed for others are highly
correlated with their opinions about whether they would want the option of assisted suicide for themselves
if they were terminally ill. [6]


Psychiatrists who work with dying persons propose a more comprehensive role for the mental health
processional - therapeutically addressing the psychological factors contributing to the desire to die. [2]
This approach focuses on depressive syndromes, which are present in 5 to 58 percent of terminally ill
patients with cancer [8] and are associated with suicide at all ages. Studies showing that primary care
providers fail to detect between 45 and 90 percent of psychiatric disorders in their patients underscore the
need for mental health consultation. [9] Twenty-eight percent of the physicians in Oregon whom we
surveyed were not confident that they could recognize depression in a patient who requested a lethal
prescription. [10]


"Psychological autopsy" studies have shown that 80 percent of persons with cancer who committed
suicide had depressive syndromes - the same proportion as that of persons without cancer who
committed suicide. [11] Major depressive disorder was diagnosed in 59 percent of hospice patients who
persistently desired a hastened death but in only 8 percent of those without this desire. [12] Only 10 to 14
percent of persons commit suicide over the decade following a failed attempt, suggesting that in most
suicidal persons, the desire to die is transient. [13] Although these data do not provide direct evidence,
they suggest that the desire for physician-assisted suicide may be analogous to suicidal ideation
associated with depression or other stresses and may be responsive to interventions that are effective in
other groups of suicidal persons.


There has been no systematic inquiry into the natural history of the desire to hasten death or its response
to psychiatric treatment. Only one published double-blind study has demonstrated the efficacy of
antidepressant agents for the treatment of mood disorders in terminally ill patients with cancer. [8]
Researchers have been hindered by a lack of consensus about the diagnostic criteria for major
depressive disorder in terminally ill patients, difficulty recruiting subjects for studies, and high dropout
rates because of the side effects of medication. [8, 14] With the exception of psychostimulant agents,
antidepressant agents take several weeks to be effective, and trials of more than one type of agent may
be required. [2] In most instances of euthanasia in the Netherlands, life is shortened by less than one
month. [15] Thus, an antidepressant agent may not be a realistic treatment option and may increase
suffering because of adverse effects.


Psychiatrists who work with patients who have cancer claim that addressing feelings of isolation, anger,
fear of abandonment, and loss of control diminishes the desire to hasten death. [2] Psychotherapeutic
interventions improve mood, quality of life, and well-being and, in some cases, prolong survival in persons
with cancer. [14] However, it is often difficult for debilitated persons in the final stages of a terminal illness
to engage in psychotherapy.


In summary, then, our present knowledge base is inadequate for assessing the efficacy of psychiatric
interventions when patients request physician-assisted suicide. Despite these gaps in knowledge, the
risk of underestimating the effect of psychological factors on the desire for assisted suicide is high. We
recommend a comprehensive mental health evaluation as the best method of assessing and diminishing
psychological distress that contributes to a patient's desire for a hastened death. We acknowledge an
important practical limitation of psychiatric consultation. Psychiatrists rarely work with medically ill or
dying patients. [6] Their expertise and comfort in this role must be improved if such consultation is to be
effective.


The most startling finding reported by Groenewoud et al. is that 64 percent of Dutch psychiatrists believe
that physician-assisted suicide can be acceptable for patients whose suffering is based on mental
disorder in the absence of terminal (or even physical) illness. Psychiatrists in the Netherlands accede to
requests for assisted suicide from such patients on rare occasions. Current proposals for legalizing
physician-assisted suicide in the United States restrict the practice to patients who are competent,
suffering, and terminally ill. The most emotionally persuasive arguments in favor of physician-assisted
dying are based on respect for self-determination and compassion for suffering. Depressed persons
desire death because of their inability to experience pleasure, personal worth, or hope for improvement.


Treatment-resistant depression may be the epitome of suffering. However, if we permit assisted suicide
for irremediable mental suffering associated with terminal illness, might we eventually accept assisted
suicide for irremediable mental suffering alone? Depressed patients may clearly and cogently attempt to
convince us of the worthlessness and hopelessness of their lives, and we may forget the potential
impairment of their autonomy. The literature on suicide is full of evidence that care givers, including
health care providers, often collude in the suicides of depressed patients, becoming infected and
overwhelmed with their pessimism, helplessness, and dependency.


There are good arguments why physicians should never assist in the suicides of otherwise healthy
patients with intractable depression. Such a practice would send a pernicious message to those fighting
mental illness and suicide. Most depressed suicidal persons are quite ambivalent about dying, and
concurring that their situation will not improve is countertherapeutic. Persistently depressed persons
have often exhausted their support systems, and mental health providers may offer the only remaining
source of hope. Yet when similar arguments against assisted suicide have been applied to terminally ill
patients, they have not been universally persuasive. If we can dismiss these arguments in the case of
dying patients, then we may not be able to uphold them in order to protect the mentally ill.


That the majority of psychiatrists in the Netherlands endorse physician-assisted suicide for intractable
mental disorders suggests that beliefs about what is permissible expand as a result of acculturation to
changes in social policy. In the United States, the mentally ill are a stigmatized and vulnerable group. No
matter how much the misery experienced by a mental ill person elicits our sympathy, a policy that allows
assistance in the suicide of patients whose suffering is based only on mental disorders would be
unacceptable.


Linda Ganzini, M.D.
Veterans Affairs Medical Center
Portland, OR 97201


Melinda A. Lee, M.D.
Providence Elder Place
Portland, Or 97218


The conclusions and opinions in this article are those of the authors and do no necessarily represent the
views of the Department of Veterans Affairs or Providence Health Systems.

				
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