NEXT week,
voters in Massachusetts will decide whether to adopt an assisted-suicide law. As
a good pro-choice liberal, I ought to support the effort. But as a lifelong
disabled person, I cannot.
There are solid arguments in favor. No one will be coerced into taking a poison
pill, supporters insist. The “right to die” will apply only to those with six
months to live or less. Doctors will take into account the possibility of
depression. There is no slippery slope.
Fair enough, but I remain skeptical. There’s been scant evidence of abuse so far
in Oregon, Washington and Montana, the three states where physician-assisted
death is already legal, but abuse — whether spousal, child or elder — is
notoriously underreported, and evidence is difficult to come by. What’s more,
Massachusetts registered nearly 20,000 cases of elder abuse in 2010 alone.
My problem, ultimately, is this: I’ve lived so close to death for so long that I
know how thin and porous the border between coercion and free choice is, how
easy it is for someone to inadvertently influence you to feel devalued and
hopeless — to pressure you ever so slightly but decidedly into being
“reasonable,” to unburdening others, to “letting go.”
Perhaps, as advocates contend, you can’t understand why anyone would push for
assisted-suicide legislation until you’ve seen a loved one suffer. But you also
can’t truly conceive of the many subtle forces — invariably well meaning,
kindhearted, even gentle, yet as persuasive as a tsunami — that emerge when your
physical autonomy is hopelessly compromised.
I was born with a congenital neuromuscular weakness called spinal muscular
atrophy. I’ve never walked or stood or had much use of my hands. Roughly half
the babies who exhibit symptoms as I did don’t live past age 2. Not only did I
survive, but the progression of my disease slowed dramatically when I was about
6 years old, astounding doctors. Today, at nearly 50, I’m a husband, father,
journalist and author.
Yet I’m more fragile now than I was in infancy. No longer able to hold a pencil,
I’m writing this with a voice-controlled computer. Every swallow of food,
sometimes every breath, can become a battle. And a few years ago, when a
surgical blunder put me into a coma from septic shock, the doctors seriously
questioned whether it was worth trying to extend my life. My existence seemed
pretty tenuous anyway, they figured. They didn’t know about my family, my
career, my aspirations.
Fortunately, they asked my wife, who knows exactly how I feel. She convinced
them to proceed “full code,” as she’s learned to say, to keep me alive using any
and all means necessary.
From this I learned how easy it is to be perceived as someone whose quality of
life is untenable, even or perhaps especially by doctors. Indeed, I hear it from
them all the time — “How have you survived so long? Wow, you must put up with a
lot!” — even during routine office visits, when all I’ve asked for is an
antibiotic for a sinus infection. Strangers don’t treat me this way, but doctors
feel entitled to render judgments and voice their opinions. To them, I suppose,
I must represent a failure of their profession, which is shortsighted. I am more
than my diagnosis and my prognosis.
This is but one of many invisible forces of coercion. Others include that
certain look of exhaustion in a loved one’s eyes, or the way nurses and friends
sigh in your presence while you’re zoned out in a hospital bed. All these can
cast a dangerous cloud of depression upon even the most cheery of optimists, a
situation clinicians might misread since, to them, it seems perfectly rational.
And in a sense, it is rational, given the dearth of alternatives. If nobody
wants you at the party, why should you stay? Advocates of Death With Dignity
laws who say that patients themselves should decide whether to live or die are
fantasizing. Who chooses suicide in a vacuum? We are inexorably affected by our
immediate environment. The deck is stacked.
Yes, that may sound paranoid. After all, the Massachusetts proposal calls for
the lethal dose to be “self-administered,” which it defines as the “patient’s
act of ingesting.” You might wonder how that would apply to those who can’t feed
themselves — people like me. But as I understand the legislation, there is
nothing to prevent the patient from designating just about anyone to feed them
the poison pill. Indeed, there is no requirement for oversight of the ingestion
at all; no one has to witness how and when the lethal drug is given. Which, to
my mind, leaves even more room for abuse.
To be sure, there are noble intentions behind the “assisted death” proposals,
but I can’t help wondering why we’re in such a hurry to ensure the right to die
before we’ve done all we can to ensure that those of us with severe,
untreatable, life-threatening conditions are given the same open-hearted
welcome, the same open-minded respect and the same open-ended opportunities due
everyone else.
Campaigner triumphant after Lords victory
to clarify law on right to die
Friday, 31 July 2009
The Independent
By Jeremy Laurance,
Health Editor
Debbie Purdy, who has dedicated her living days to winning the
right to plan her death, made legal history yesterday when five law lords backed
her landmark appeal to have the law on assisted suicide clarified.
The 46-year-old campaigner, who has multiple sclerosis, was "ecstatic" after the
peers unanimously supported her call for the Director of Public Prosecutions to
spell out the circumstances in which her husband or someone in a similar
position might face prosecution for helping a loved one end their life abroad.
Having lost twice in the High Court and Court of Appeal, yesterday's decision
brought huge relief. Flanked by her husband, the Cuban violinist Omar Puente,
and to cheers from her supporters, Mrs Purdy said after the ruling: "I'm
ecstatic. I am eagerly awaiting the DPP's policy publication so that we can make
sure what we do does not risk prosecution. I think people are beginning to
realise now that this is not about a right to die; it is about a right to live.
"It feels like everything else doesn't matter and now I can
just be a normal person. It's terrific. It gives me my life back. We can live
our lives. We don't have to plan my death."
Responding to the ruling, the DPP Keir Starmer, QC, said prosecutors would start
work immediately to produce an interim policy by September, followed by a public
consultation before the final policy is published next spring. "This is a
difficult and sensitive subject and a complex area of the law," he said.
"However, I fully accept the judgment of the House of Lords. The Crown
Prosecution Service has great sympathy for the personal circumstances of Mrs
Purdy and her family."
The decision will bring relief to scores of people facing
similar dilemmas. More than 100 UK citizens with terminal illness or facing
intolerable suffering have travelled to the Dignitas clinic in Switzerland with
friends or relatives to end their lives. No one has been prosecuted but the risk
is always there. Under the present law, anyone who helps facilitate a suicide
faces up to 14 years in jail.
Giving judgment in Mrs Purdy's case yesterday, the law lords said the DPP should
be required to set out an "offence-specific policy", identifying the facts and
circumstances that he would take into account in deciding whether it was in the
public interest to prosecute under the Suicide Act.
Experts said the ruling meant it was no longer acceptable for the DPP to decide
what was a crime on a case by case basis and that after he had set out the
principles that would exclude prosecutions for compassionate assistance, the law
would effectively have been changed. But the law lords said the ruling did not
decriminalise assisted suicide, which was rejected after a highly charged debate
this month by peers in the House of Lords sitting as the second chamber of
Parliament and not as a court.
Mrs Purdy suffers from progressive multiple sclerosis which could mean she faces
an undignified and distressing death. That might be avoided if she were able to
travel to Dignitas to end her life peacefully.
Her dilemma was that unless the law was clarified she might be forced to end her
life sooner than she planned, while she was still able to travel to Switzerland
independently, to avoid the risk of her husband being prosecuted for assisting
her. If the risk of prosecution was sufficiently low, she could wait until the
very last minute before travelling with her husband's assistance.
The law lords said: "Everyone has the right to respect for their private life
and the way that Mrs Purdy determines to spend the closing moments of her life
is part of the act of living. Mrs Purdy wishes to avoid an undignified and
distressing end to her life. She is entitled to ask that this too must be
respected."
Campaigners hailed the victory as bringing an end to the "legal muddle" over
assisted suicide. Pressure for a change in the law has grown. The Royal College
of Nursing declared this month it was dropping its opposition to assisted
suicide and adopting a neutral stance.
Sarah Wootton, chief executive of Dignity in Dying, said: "This historic
judgment ensures the law keeps up with changes in society and, crucially,
provides a more rational deterrent to abuse than a blanket ban which is never
enforced."
May 23, 2009
The New York Times
By WILLIAM YARDLEY
SEATTLE — A woman with pancreatic cancer has become the first person to die
under a law passed last year allowing doctor-assisted suicide in Washington,
according to an advocacy group that pushed for the law.
The woman, Linda Fleming, 66, of Sequim, Wash., died Thursday evening after
taking lethal medication prescribed by a doctor under the law, according to a
news release by the group, Compassion and Choices of Washington. The release
said Ms. Fleming received a diagnosis of Stage 4 pancreatic cancer a month ago,
and “she was told she was actively dying.”
Ms. Fleming was quoted in the release as saying: “I am a very spiritual person,
and it was very important to me to be conscious, clear-minded and alert at the
time of my death. The powerful pain medications were making it difficult to
maintain the state of mind I wanted to have at my death.”
In November, voters approved the Death with Dignity Act, 58 percent to 42
percent, making Washington the second state — after Oregon — to allow assisted
suicide. The laws in both states have been deeply controversial, particularly
among religious groups. Washington passed its law after the United States
Supreme Court in 2006 rejected an effort by the Justice Department to block
Oregon’s law, which took effect in 1998.
In Montana, a state judge ruled in December that doctor-assisted suicide was
legal under the state’s Constitution, but the state is appealing that decision.
Steve Hopcraft, a spokesman for Compassion and Choices, said the group was “not
leading a campaign in any other state right now.”
The Washington and Oregon laws allow terminally ill patients who are at least 18
and have been found mentally competent to self-administer lethal drugs under the
prescription of a doctor.
In Oregon, 401 people used the law through 2008. Since the law took effect in
Washington in March, six prescriptions for lethal medication have been
dispensed, but a spokesman for the State Department of Health, Donn Moyer, said
it had not received any forms saying a patient had used the medication. Under
the law, doctors who write such a prescription have 30 days to report that it
had been used.
Mr. Moyer, saying privacy laws prevented the state from providing information
about a specific death, said he could not confirm Ms. Fleming’s death.
In Oregon, not everyone who received a prescription has taken the drugs.
Some critics fear that physician-assisted suicide will pressure people with
terminal illnesses who have low incomes or are disabled to end their lives to
avoid becoming a financial burden to loved ones. Supporters cite studies that
they say have refuted that idea.
Ms. Fleming, who was divorced, filed for bankruptcy in 2007 with $5,800 in
credit card debt, according to court records and a lawyer who had represented
her, Hugh Haffner.
Mr. Haffner said that when she filed for bankruptcy, Ms. Fleming, a former
social worker, had been unable to work because of a disability and lived in
subsidized housing on $643 in monthly disability checks.
Virginia Peterhansen, who said she had befriended Ms. Fleming about six months
ago through a book group, said Ms. Fleming bought a 1982 Oldsmobile station
wagon days before she was told she had cancer and that she had hoped to learn to
contra dance.
Robb Miller, the executive director of Compassion and Choices of Washington,
said that he had spoken to Ms. Fleming and that, although he was unaware of her
bankruptcy filing, her situation presented “none of the red flags” that might
have given his group pause in supporting her. He said Ms. Fleming’s two children
and her former husband “were involved and supported her choice.”
ATLANTA — An undercover state investigator told a right-to-die network that
he wanted to kill himself. In response, he later testified, officials of the
network planned to have him asphyxiate himself with a helium-filled face mask
while holding down his arms.
After an investigation, four officials of the group, known as the Final Exit
Network, were arrested last month on charges of racketeering and assisted
suicide.
The arrests raised questions about whether the group, which has helped some 200
people commit suicide since 2004, merely watched people take the leap into
death, or pushed them over the edge.
Officials with the Georgia Bureau of Investigation say the network, which says
it has 3,000 dues-paying members in the United States, actively takes part in
suicides, an act that is illegal in every state except Oregon and Washington.
“The law is clear, and they violated it,” said John Bankhead, a spokesman for
the Georgia bureau.
The arrests followed an inquiry in which an investigator posed as a cancer
patient and persuaded network members to help him prepare to commit suicide.
According to the agent’s affidavit, network members instructed him to buy a
helium tank and a plastic “exit mask.”
Thomas E. Goodwin, who was the network president at the time, and Claire Blehr,
a member, planned to hold down the agent’s hands while helium flowed into the
mask, the affidavit says.
The agent would lose consciousness within seconds and die within minutes, and
the guides would remove evidence from the scene.
“They went through a dry run just to let the agent know what would happen,” Mr.
Bankhead said. “Mr. Goodwin got on top of the agent and held down both of his
hands,” which investigators say would have prevented him from removing the mask
if he had changed his mind during a real suicide.
Georgia authorities arrested Mr. Goodwin and Ms. Blehr, and Maryland officials
arrested the group’s medical director, Dr. Lawrence D. Egbert, and a regional
coordinator, Nicholas Alec Sheridan, for authorizing member suicides.
The network, based in Marietta, Ga., says it provides only lawful instruction
and emotional support, and only to patients with incurable diseases or
tremendous suffering.
“Assisted suicide is Jack Kevorkian putting a needle in someone with a deadly
substance,” said Jerry Dincin, who became the network president after the
arrests. “We provide information that we think is protected under the First
Amendment.”
A 1994 Georgia law defines assisted suicide as “direct and physical involvement,
intervention or participation” in a deliberate suicide and carries a five-year
prison sentence.
The arrests have thrust the little-known organization into the national
spotlight. Since its founding in 2004, the network has neither shunned public
attention nor received much of it.
A registered nonprofit organization, the group runs a Web site, promotes a
suicide manual by Derek Humphry, the chairman of the network’s advisory board,
and belongs to the World Federation of Right to Die Societies.
Network literature says members receive services including “counseling, support
and even guidance” on suicide, in exchange for an annual $50 fee.
The group also sends trained “exit guides” to provide comfort and instruction
during a suicide but is adamant that members buy their own materials and conduct
the suicide themselves.
While political and educational groups like the Death With Dignity National
Center and Compassion and Choices work with lawmakers to advance
physician-assisted suicide, the Final Exit Network ministers directly to the
suicidal.
Other groups are concerned that the network will portray the movement
negatively.
“People don’t want to do this underground or covertly, with hushed tones, with
great risks to themselves and their loved ones,” said Barbara Coombs Lee, the
president of Compassion and Choices, which supports end-of-life decisions. “They
want to have their physician involved. They want hospice care involved. They
want their family there without shame or risk.”
If brought to trial, legal experts say, the case against the network could
clarify the distinctions between the lawful act of witnessing a suicide and the
illegal act of assisting one.
The Supreme Court ruled in 2006 that states can set their own laws on suicide
assistance. But experts say the term “assistance” can be difficult to define.
“You have some in our society saying this action is a crime,” said William H.
Colby, a lawyer and fellow of the Center for Practical Bioethics. “You have
others saying this is such an important right that it rises to the level of our
Constitution.”
Mr. Humphry said the network’s protocols were deliberately written to avoid
illegality. “The person does everything themselves,” he said. “They don the
hood. They tie it around their neck. They reach forward. They turn on the gas.”
Guides often hold a dying person’s hands, he said, but for support, not
restraint.
Supporters are concerned that the network arrests will set back the right-to-die
movement. Mr. Kevorkian, the Michigan pathologist who served eight years in
prison for second-degree murder for assisting a suicide, issued a statement on
Tuesday through his lawyer supporting the right to physician-assisted suicide
but condemning its practice by “ordinary citizens” in the network.
Opponents of assisted suicide were harsher.
“These are people who instead of pulling you back from the ledge, they shove you
off,” said Stephen Drake, a research analyst for Not Dead Yet, an advocacy group
for the disabled that opposes assisted suicide. “Legally, we may not know what
this means. But in a personal sense, it can mean the difference between life and
death.”
The investigation began after relatives of a Georgia man, John Celmer, who
committed suicide in June, told the police they believed that the network had
taken part in Mr. Celmer’s death.
Mr. Celmer’s mother said her son had long suffered from mouth and throat cancer,
but Georgia investigators said he had overcome the disease by the time he killed
himself and was instead embarrassed about a facial disfigurement.
His wife, Susan, issued a statement of gratitude to the law enforcement
officials who “pursued this matter vigorously.”
Mr. Dincin, the network president, said Mr. Celmer deserved the right to end his
suffering.
“There are millions of people who think what we do is just awful,” Mr. Dincin
said. “They think we shouldn’t touch a person’s natural course from living to
dying, but I think people have a right to decide for themselves.”
