June 20, 2000
The Dutch Seek to Legalize Long-Tolerated Euthanasia
By SUZANNE DALEY
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Joyce van Belkom/Hollandse Hoogte, for The New York Times
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Yvonne Jager could not find a doctor to help her terminally ill mother die, despite her mother's written request. The Netherlands is considering revising its laws on euthanasia to make the practice more open and available.
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MSTERDAM -- When surgery
showed that Dr. Henk Laane's 77-year-old patient, a woman who had
been in his care for more than a
decade, was riddled with cancer, she
immediately asked him to help her
die.
At first, Dr. Laane said no. There
was no unbearable suffering yet, he
argued. There were still some good
times ahead. But when several
months had passed and she was in
the grip of chronic diarrhea and nausea, so much so that not an hour went
by uninterrupted, Dr. Laane finally
agreed to help.
She wanted to die on her birthday
and gathered her family around her
at home. She had traditional Dutch
bon voyage cakes ready for the doctor and his nurse and she asked that
they eat the cakes first.
Then, with everyone gathered at
her bedside, Dr. Laane gave her an
injection.
"It is never easy to help someone
die," said Dr. Laane, a month later.
"You take it with you. You bring it
home. You don't sleep so well after."
In the last two decades, mercy
killings and assisted suicide of terminally ill patients have been widely
tolerated here, with prosecution for
such acts becoming less and less
likely.
But soon the Netherlands is expected to take a further step with a
new bill that would decriminalize
such acts if certain criteria are met,
giving this country the least restrictive laws on mercy killing and assisted suicide in the world. Dr. Laane's
actions last April 15, for which he
was not prosecuted, would become
fully legalized. The new law, which
almost everyone here expects will be
passed in the fall, could allow help to
die for people ranging from Alzheimer's disease sufferers to perhaps
even terminally ill children as young
as 12.
The Dutch are not alone in Europe
in moving toward legalization of
mercy killing and assisted suicide.
Belgium too has been debating legalizing euthanasia for months now,
with more than 40 witnesses appearing before its Parliament to tell their
stories. Switzerland already allows
assisted suicide under some conditions.
Many other European countries
have high-powered committees reviewing the issue, including one in
France that recently recommended
that euthanasia be considered in certain cases. And, in general, euthanasia activists say their ranks are
growing. For less than a year, euthanasia was legal in part of Australia,
but that law has since been repealed.
In the United States, Oregon allows
assisted suicide in some cases.
Still, the Netherlands remains the
only country that has tolerated it for
years, and now lawmakers and
health officials here say the aim of
the new legislation is to make sure
that what happens during a patient's
final hours happens in the open,
where it can be scrutinized and regulated.
Health officials say that in the five-year study period from 1990 to 1995,
including the period after 1993 when
new regulations made it easier to
admit to euthanasia, the percentage
of cases actually reported to the authorities more than doubled. But
even then, anonymous surveys indicate, doctors were not reporting 60
percent of their cases.
"If it remains a punishable offense, we will never see the transparency that we are aiming for," said
Jacob Visser, a spokesman for the
medical ethics division of the Health
Ministry which, along with the country's Justice Ministry, helped shape
the bill. "To get that, we must get
this out of the criminal system."
The debate over euthanasia has
raged here for more than two decades. But surveys show that it has
increasingly won popular support. A
1998 survey showed that more than
90 percent of the population is now in
favor. Yet the details of exactly when
it should be administered and to
whom are still hotly contested.
The bill, introduced last fall in Parliament, brought more than 540 questions from legislators and activists
during the review process, among
the most government officials had
ever gotten. They say they are still
scrambling to answer all those questions before the summer break.
Many experts believe that some
changes will be made before the bill
is voted on this fall, including raising
the age of patients permitted to ask
for help in dying to 16 or 18 from 12.
But the core of the bill is not likely
to change. Doctors' actions in helping patients to die would no longer be
routinely reviewed by prosecutors
but instead by a committee of doctors, lawyers and ethicists. To qualify for help to die, a patient's request
must be "durable," he or she must
face "unbearable suffering" and
have no "reasonable alternative" to
death. The doctor must also consult
at least one other independent physician before helping a patient to die.
In fact, the country's medical association is now training 1,000 doctors
to be specialized consultants in the
field. The three-day course is by
most accounts emotional and draining. These doctors do not intend to
perform euthanasia, but to give a
second opinion and advice and information to other doctors considering
such action.
The curriculum ranges from
teaching doctors to resist pressure
from their patients to technical information on relieving pain and other
conditions that may have become
unbearable for the patient, such as
incessant itching, inability to swallow or slow suffocation from blood in
the lungs. Some of the course focuses
on telling the patient's story so it can
be properly reviewed.
"No physician has been taught in
medical school how to write about
the ending of someone's life," said
Dr. Gerrit Kimsma, a professor at
Free University in the Netherlands,
who is helping to train the doctors.
"Their stories are often not rich
enough. When you look at the papers
you can't see the nature of the suffering, so we teach them that too."
Despite wide support for euthanasia, the medical profession and indeed the country is still gripped in a
debate over its details.
The new bill introduces for the
first time the possibility of an "advance directive" so that a patient
could indicate ahead of time that he
or she wishes to die at a certain
point. It will for the first time open
the door for patients suffering from
dementia and Alzheimer's disease to
get help dying if they have signed
such a directive early in their illness.
In the past, such patients have not
qualified because they are not considered by some to be suffering "unbearably." While their condition may
cause anguish to their families, they
themselves may be unaware of it.
The advance directive has caused
an uproar in some circles and may
end up being deleted from the bill.
For the Christian Right Association,
which has supported some euthanasia bills, the new bill goes too far. The
opposition party objects to both the
advance directive and the cessation
of the review process by the prosecutor's office.
"For us, this is going down the
slippery slope," said Clémence Roos,
a spokeswoman for the Christian
Right. "Eight years ago, we were
hearing 'never' for dementia. 'How
dare you suggest that we will go that
far?' And now, it's being treated like
it's just a fact of life."
"The goal of this legislation seems
to be: just tell us what you do, it
doesn't matter what it is."
In contrast, some euthanasia activists feel that some of the language
in the proposed new law may actually make it more difficult for patients
to control at what point they want to
die. The law seems to tighten some of
the criteria used in the past to regulate the decision. For instance, it
says the patient's decision must be
"durable."
"This may imply some sort of time
element that wasn't there before,"
said Dr. Rob Jonquière, the managing director of the Dutch Voluntary
Euthanasia Society. "There are a
couple of things like that which actually may be a step backward."
In the last decade, fewer than a
handful of doctors have been prosecuted for helping patients to die
with injections such as the one Dr.
Laane gave or by supplying them
with drugs to take their own lives
when they were ready. But thousands of cases have been reported to
the authorities.
The country has built a body of
data on the subject, largely from two
huge studies conducted in 1990 and
1995. The data show that 90 percent
of the patients requesting euthanasia
are in the final stages of cancer.
Most die in their homes.
Both supporters and opponents of
assisted suicide and mercy killing
use the statistical evidence to bolster
their cases. Supporters say that euthanasia remains rare despite the
lack of prosecution.
While the actual number of such
cases rose slightly between 1990 and
1995, researchers said they would
expect that, given several factors
including the aging of the Netherlands' population and the relative
increase in cancer patients. The surveys showed that about 9,000 patients
asked their doctors for help in dying
in 1995 and about 3,600 got such help.
Overall, there were about 150,000
deaths in the Netherlands that year.
"Sometimes people think, ah, in
Holland you go to a doctor and you
get an injection," said Reina van de
Valk, who helped evaluate doctors'
decisions to perform euthanasia in
1999. "But they don't realize how
hard it is for doctors.
"The whole process is so emotional. It is so difficult after trying to
save a patient, to preserve life, then
to change course."
Government officials say that
anonymous surveys have actually
shown a decrease in the "slippery-slope areas," the number of cases
where a doctor helps a patient die
without an explicit directive. In most
cases, this involves patients with
mental illness who are suffering but
incapable of making a request or
newborns with congenital disorders,
perhaps involving a decision by the
parents. But opponents of euthanasia
look at the numbers differently.
Many include decisions to stop treatment or to use painkillers that may
hasten death as cases of euthanasia.
Opponents argue that they do, in fact,
see a dangerously high number of
slippery-slope cases.
Some aspects of the Dutch model
make it difficult to compare it to
what is going on or what might go on
in other countries. For one thing,
medical care is virtually free in the
Netherlands, so concern over the
cost of care would presumably not
influence a decision here, as it might
in America.
Moreover, the medical system
here revolves around the general
practitioner, who usually has known
his or her patient for years. Such a
relationship can make it much easier
for a doctor to be comfortable with a
patient's decision.
While the new law would legalize
euthanasia if the rules are followed,
it does not give a patient the right to
euthanasia. The doctor always has
the final say on whether to help.
Surveys indicate that about 10 percent of doctors in the Netherlands
are opposed to euthanasia in principle. No one knows how many have
balked at the last minute for emotional reasons, but it does happen.
Yvonne Jager still shakes when
describing what happened when her
mother wanted help dying five years
ago. Diagnosed with a brain tumor,
her mother quickly signed a paper
saying she wanted help dying when
circumstances became "unbearable." She thought she had her family doctor's promise that he would
help when things got too difficult.
Her condition deteriorated fairly
rapidly. One day, she smeared butter
all over the walls. After that, she was
placed in a nursing home where she
soon became paralyzed and could
only say yes or no to questions. But
when she indicated to her daughter
that she wanted to die now, the doctor said he just could not do it. Ms.
Jager tried to find another doctor to
help, but none would.
Finally, she went to her mother
and took her by the hand: "I said I
was sorry, but I was not going to be
able to do anything to help her. I told
her that if she really wanted to go,
she had to stop eating and drinking,
and so she did.
