U.K. doctors’ group wants debate on
the killing of disabled newborns
Citing concerns that "a very disabled child can mean a disabled
family," Britain’s Royal College of Obstetricians and
Gynaecologists (RCOG) has called for the medical profession to openly
consider allowing active euthanasia for seriously ill or disabled
newborns.
The RCOG stated its position in a response to an inquiry
on the treatment of premature newborns conducted by the Nuffield Council
on Bioethics, a group that offers ethical guidelines for medical
professionals. The Council created a Working Party in October 2004
"to consider the ethical, social, legal and economic issues"
involved with sustaining the lives of "extremely premature or
critically ill babies." [www.nuffieldbioethics.org] (See next
article for
information on the Council’s findings.)
"We would like the Working Party to consider the
wider issues of support and information for parents," wrote RCOG
Ethics Committee chair Dr. Susan Bewley, "and to think more
radically about non-resuscitation, withdrawal of treatment decisions,
the best-interests test and active euthanasia as they are means of
widening management options available to the sickest of newborns."
["Response of the Ethics Committee of the Royal College of
Obstetricians and Gynaecologists to Nuffield Council on Bioethics
consultation document, The ethics of prolonging life in fetuses and
the newborn," 7/11/05, p. 1; hereafter cited as RCOG.]
Dr. Bewley pointed out that premature newborns may not
be the only infants who could benefit from a hastened death.
"Concerns about suffering might equally lead to a positive argument
for resuscitation limits of the extremely premature infant, or to
intentional assisted dying (as nationally, many more babies are affected
and may be suffering from multiple, repetitive and invasive neonatal
treatments)." [RCOG, p. 3] Furthermore, "[i]f life-shortening
and deliberate interventions to kill infants were available, they might
have an impact on obstetric decision making, even preventing some late
abortions, as some parents would be more confident about continuing a
pregnancy and taking a risk on outcome." [RCOG. P. 8]
Considerations regarding the appropriateness of
treatment for severely or even moderately disabled newborns should go
beyond the infant’s interests to include his or her impact on the
family, the RCOG argued.
[I]f a mother really knew the real, life-long costs of caring for
such a baby, and also knew that the chances of the central or local
government paying anything near enough to cover such costs are very
low, perhaps she might feel differently about aggressive resuscitation
and treatment of her premature baby. Perhaps, her doctors might as
well. Bringing up a very damaged baby, without nearly enough help, and
to such a very uncertain future, would profoundly affect her life and
her partner’s and her other children’s. [RCOG, p. 11]
Another serious cost concern, Dr. Bewley wrote, involves
the fact that these disabled or severely ill babies turn into "bed
blockers" when their needed treatment takes weeks or months.
"Some weight should be given to economic considerations as there is
a real issue in neonatal units of ‘bed blocking’ whereby women have
to be transferred in labour to other units compromising both her and her
babies’ care." [RCOG, p. 11]
The RCOG is not the only British medical association
that has questioned the use of intensive care for very premature babies.
Sir Alan Craft, president of the Royal College of Paediatrics, said
earlier this year, "Many paediatricians would be in favour of
adopting the Dutch model of no active intervention for these very little
babies." [Sunday Times, 3/26/06] The Dutch refuse to
resuscitate any baby under 25 gestational weeks of age. Last year, they
went beyond "letting" newborns die and adopted guidelines for
actively killing those considered severely disabled.
But Dr. John Wyatt, a neonatologist at London’s
University College Hospital said that, once doctors decide whether a
life is worth living, "it changes medicine into a form of social
engineering where the aim is to maximize the benefit to society and
minimize those who are perceived as worthless." [Sunday Times (London),
11/5/06]
Alison Davis of the British disability rights group No
Less Human was horrified by the RCOG’s comments on killing disabled
newborns. "Deliberate killing on grounds of disability is always
wrong regardless of the age or status of the victim," she said.
"Disabled people, particularly those with conditions regarded as
‘severe,’ will be both appalled and afraid by the RCOG’s call. [Spero
News, 11/7/06]
Nuffield Council on Bioethics, a
British group which examines ethical questions resulting from medical
advances, has issued practice guidelines on the provision of such
treatment based upon the gestational age of premature newborns.
While the Council "unreservedly" rejected
active euthanasia for very premature infants—as proposed by the Royal
College of Obstetricians and Gynaecologists (see previous article)—the council’s
guidelines are still controversial.
Contained in a 246-page report which was released on
November 16, 2006, the guidelines state that no baby born prematurely at
22 weeks or less should be resuscitated, and any attempt to do so
"should only take place within a clinical research
study." The reason for the prohibition is that only 1% of these
babies will survive long enough to leave the hospital, and their risk
for severe disability is high. Babies born at 24 to 25 weeks of
gestation, on the other hand, have better odds and should receive
life-saving treatment. For those born at 23 to 24 weeks, treatment
decisions should be up to the parents. Most of the time, however,
decision-making power rests with doctors; parental decisions are only
given "some weight in any relevant deliberations." [Nuffield
Council on Bioethics, Critical care decisions in fetal and neonatal
medicine: ethical issues, 11/16/06, pp. xvii, xxi, 155-157]
Data from the EPICure Study, a British follow-up study
of babies born at 25 weeks or less, sheds some light on possible
disability outcomes for preemies. At two-and-a-half-years postpartum,
the study found that 50% had no disabilities, 25% had some level of
disability, and 25% were severely disabled. At six years postpartum, the
physical disability rates were: 31% had no problems, 13% had moderate
disability, 11% had severe disability, 11% had mild neurological
problems, 4% had mild hearing loss, and 30% needed glasses. The findings
prompted one of the study’s authors to say that "the majority of
children do not have a serious physical disability… and despite the
high incidence of learning difficulties, half are doing reasonably well
and keeping up with their classmates." [Univ. of Nottingham, Press
Release on EPICure Study, 1/6/05]
The British Medical Association criticized the Council’s
blanket guidelines, saying, "Each case should be considered on its
merits and its own context. We therefore cannot agree with stringent
cut-off points for treatment." The Church of England, the Catholic
Church, and disability rights groups shared the BMA’s criticism. [Norfolk
Eastern Daily Press, 11/16/06; Joint Statement, Anglican Bishop of
Southwark and Catholic Archbishop of Cardiff, 11/15/06]
Compassion & Choices (C&C), the advocacy group involved with
most of the state’s assisted-suicide deaths, reportedly brought its
lawyers to a meeting with ODHS officials and argued that the state’s
usage of the term "physician-assisted suicide" (PAS) actually
violated the DWDA. [AMNews, 11/6/06] They pointed out that the
law, which C&C leadership helped write, states, "Actions taken
in accordance with [the DWDA] shall not, for any purpose, constitute
suicide, assisted suicide, mercy killing or homicide, under the
law." [DWDA, §127.880 s.3.14]
In a letter to ODHS officials dated 8/22/06, C&C
called the term "physician-assisted suicide" "value-laden
and negatively biased language that perpetuates misunderstanding of
Oregon law and policy" and implies that a crime has been committed
since aiding the suicide of anyone other than a terminally-ill person
remains a felony under Oregon law. Those patients contemplating assisted
suicide, C&C argued, find the word "suicide" offensive. [Register-Guard
[Eugene], 10/23/06; Statesman Journal, 10/17/06]
But, if all that is true, why did C&C wait almost 10
years to challenge the ODHS over its use of "assisted
suicide"? The answer lies in recent polling.
Frustrated by its inability over the last decade to get
a state other than Oregon to pass an assisted-suicide law, C&C
turned to polling to see how they could tweak their sales pitch so that
voters and legislators would be more apt to approve an assisted-suicide
measure. In 2005, public opinion researcher David Binder was hired to
test California voters’ reactions to right-to-die terminology. He
found that respondents had a very negative reaction to the term
"assisted suicide." [Californians for Compassionate Choices
Press Kit, 9/28/05]
A
Gallup Poll earlier last year also found that the word
"suicide" negatively impacted efforts to legalize assisted
suicide. When asked if they thought "doctors should be allowed by
law to end the patient’s life by some painless means if the patient
and his family request it," respondents said "yes" 75% of
the time. But when asked if doctors should "assist the patient to
commit suicide," support dropped to only 58%. [Gallup News Service,
5/17/05]
Since C&C activists use the Oregon DWDA as the model
for legislation in other states, they needed to get the ODHS to stop
using "assisted suicide," especially on its easily accessible
web site. Otherwise it would be extremely difficult for activists to
convince legislators and voters in those states that all they wanted to
legalize was "aid-in-dying," "directed dying," or
"assisted dying"—C&C’s deceptive terms of choice.
Initially, ODHS officials agreed to change all their
"physician-assisted suicide" references to
"physician-assisted death," but, within one day, canned that
term after PAS opponents objected to the change. They finally decided to
refer to the practice as "death with dignity" and call
patients who commit suicide by ingesting a legally prescribed drug
overdose as "persons who use the Oregon Death with Dignity
Act." C&C called the change "a major leap forward in
clarifying the public’s perception of the distinction between suicide
and a terminally ill patient’s choice for a peaceful and dignified
death." [compassionandchoices.org, Top Stories, 10/23/06]
But
Study finds cancer patients more than twice
as likely to commit suicide
A study of American cancer patients—published in the
October 19, 2006, edition of the Annals of Oncology—found that
these patients have a 2 to 2½ times greater risk of ending their lives
compared to the general public.
Dr. Wayne S. Kendal, a Canadian radiation oncologist
from the Ottawa Hospital Regional Cancer Center, analyzed 1.3 million
cases of individuals with invasive cancers who were diagnosed between
1973 and 2001. Of those, a total of 1,307 males (19 out of every 1,000
male cancer patients) and 265 females (four out of every 1,000 female
cancer patients) committed suicide.
The patients with the highest suicide risk were males
with "head and neck cancer or myeloma, advanced disease, little
social or cultural support, and limited treatment options." Those
with the least degree of risk were African-American females with
"colorectal or cervical cancer, localized disease, and living with
[a] spouse." Males were found to have almost five times the risk
for suicide than the female patients studied.
Other factors contributing to suicide ideation included
metastatic disease at diagnosis, contraindicated surgery and other
treatments, high-grade tumors, and cancers of the head, neck, lungs,
bronchus, bladder, and esophagus.
The study also found that married patients exhibited a
lower risk of suicide.
"Overall," Dr. Kendal wrote, "it would
seem plausible to conclude that depression played a likely role in many
of the suicides from the study population."
"Oncologists and allied health professionals should
be aware of the potential for suicide in cancer patients," Dr.
Kendal concluded, especially since "every year in America, about
1.4 million new cancers will be diagnosed, 570,000 persons will die of
cancer, and another 1,700 persons with cancer will commit suicide."
[Kendal, "Suicide and cancer: a gender-comparative study," Annals
of Oncology, 10/19/06]
"I wanted to raise awareness among caregivers who
are looking after cancer patients… for the risk of suicide in all
cancer patients," Dr. Kendal told the press. "I have had
patients who I believe have committed suicide, and I really wasn’t
astute to picking it up." [Reuters, 10/19/06]
Ludwig Minelli, a human rights lawyer,
views assisted suicide as a basic human right that should be available
to those with chronic mental illness. The petition, which was scheduled
to be heard by the Swiss high court on October 27, involves a Swiss man
with bipolar disorder, also called manic depressive disorder, who lives
abroad. As yet, the court has not issued a ruling in the matter.
Minelli spoke about the case during a September speech
to Liberal Democrats attending a conference in Brighton, England.
"We should see in principle suicide as a marvelous possibility
given to human beings because they have a conscience," he said.
"If you accept the idea of personal autonomy, you can’t make
conditions that only terminally ill people should have this right."
"We should accept generally," he continued, "the right of
a human being to say, ‘Right, I would like to end my life,’ without
any pre-condition, as long as this person has capacity of
discernment."
Labeled the "suicide missionary" by the London
Times, Minelli said that he would take the court case all the way to
the European high court, if necessary. "I tell [Dignitas] members
suffering from mental illnesses: I am fighting for your freedom,"
he explained.
When asked if there were any suicidal people he would
refuse to help die, he replied, "I would never say no. I would say
perhaps." [London Times, 9/20/06, 9/21/06, 9/22/06; Daily
Post, 9/21/06; BBC News, 9/20/06; Independent, 9/21/06]
Dutch film aims to make
euthanasia decisions easier…and sooner
Too many Dutch doctors are dragging their feet when it
comes to euthanasia requests, according to Rob Jonquière, a former
general practitioner and current director of the Dutch Society for a
Voluntary Ending of Life.
Each year, he said, hundreds of doctors either delay
euthanasia too long, use morphine to put the patient into a coma (called
"terminal sedation"), or just ignore a patient’s request for
an induced death. He estimates that there could be thousands of
unfulfilled requests annually.
Jonquière said euthanasia decisions are some of the
most difficult Dutch doctors make. "It affects doctors
professionally and personally and makes unbelievable demands," he
explained.
To make the euthanasia decision easier, Jonquière has
made a film for doctors and patients, entitled Letting Him Down.
It consists of scenes depicting right and wrong ways to handle patients’
death requests. In one scene, a grieving widow blames the doctor for her
husband’s "terrible" death. The doctor had never acted on
her husband’s euthanasia request which had been first submitted to the
doctor 10 years earlier.
"We want to show that euthanasia should be a
process begun before there is any suggestion of a malignant
disease," Jonquière said, "a path that both patient and
doctor must take while continuing to communicate." [British
Medical Journal, 9/9/06]
Euthanasia death toll spikes in Belgium
According to the commission which oversees legalized
euthanasia practice in Belgium, there were 742 euthanasia deaths, 31 per
month, in 2004 and 2005. Thus far, for the first part of 2006, the rate
has increased to 37 euthanasia deaths a month. That is a significant
jump from 2002 (the year euthanasia was legalized) and 2003 when
statistics showed that 17 people a month were euthanized.
The commission concluded that, despite the jump in
deaths, euthanasia is limited to the very few, accounting for only three
to four deaths per 1,000. But, with Belgium’s overall death rate at
10.27 per 1,000, the number of euthanasia deaths is not insignificant.
The rise in euthanasia practice, the commission
explained, is because of the increased dissemination of information on
the subject, not a change in the public’s attitude. There was "no
wave of euthanasia," they concluded, nor was there any indication
that Belgium became a tourist death destination. As the Belgian
newspaper Le Soir put it, "Doctors did not become old-people
murderers."
The statistics for 2004 and 2005, however, showed that
49 percent of euthanized patients were elderly.
In addition, cancer patients accounted for 83 percent of
euthanasia cases, with men opting for a hastened death more often than
women. In only 39 percent of the cases, euthanasia occurred in the
patient’s home.
A
mere 14 percent of the official euthanasia declarations signed by
patients were in French, indicating that the majority of patients
requesting death are from the Dutch-speaking regions of the country. [Agence
France Presse, 11/11/06; Expatica, 11/9/06]
Robert Veatch wrote
several years ago in the Journal of Clinical Ethics, "is the
presence of integrated mind and body.... For the human to exist in any
legal, moral or socially significant sense, these two features must be
present." And, since those diagnosed as vegetative are thought to
be unaware, according to Veatch and many of his colleagues, they are
merely "respiring cadavers" who could even be buried except
that it "is simply unaesthetic to bury someone while still
breathing."
The proposed redefinition of these living patients into
dead, albeit breathing, bodies is intended to pave the way for using
them as so many organ farms.
A 1996 article in the British medical journal Lancet put
it this way: "If the legal definition of death were to be changed
to include comprehensive irreversible loss of higher brain function, it
would be possible to take the life of a patient (or more accurately to
stop the heart, since the patient would be defined as dead) by a
'lethal' injection and then remove the organs needed for
transplantation, subject to the usual criteria for consent."
More recently, the notion that the bodies of persistent
vegetative patients should be exploitable has been extended to the realm
of cutting-edge medical research—perhaps for the purpose of using
these profoundly disabled people in place of primates or other animals.
Illustrating how respectable these radical views have
become among the medical intelligentsia, articles and letters published
during the past two years in the Journal of Medical Ethics have gone so
far as urging that vegetative patients be used to test the safety of
"xenotransplantation," that is, of transplanting animal
(usually pig) organs into humans.
The usual ethical approach in medical research is to
complete animal testing and then cautiously move into human trials with
patients who could conceivably benefit from the experimental drug or
procedure. But some bioethicists worry about the social, personal and
sexual contacts of early pig organ recipients allowing a porcine virus
to cross the species boundary and setting off a pandemic.
But quarantining pig organ recipients is seen as
violating their personal autonomy. The proposed "ethical"
remedy for this conundrum is to use persistent vegetative bodies in
place of patients who actually need new organs in early
xenotransplantation experiments.
"If it can be agreed upon that PVS bodies can be
regarded as dead," Belgian professor An Ravelingien and several
co-authors wrote in 2004, "then experimenting on them is legitimate
under the same conditions as experiments on cadavers," so long as
they consented to be used in this fashion prior to their impairment. To
illustrate the extent to which these bioethicists dehumanize people
diagnosed as PVS, Ravelingien asserts that "living cadavers"
in persistent vegetative state should not be called "patients"
because that wrongly humanizes them and "impedes the
discussion."
This year,
Heather Draper, a bioethicist from
Birmingham, England, took Ravelingien's argument one step further:
"My own view is that people in a PVS are still alive," she
wrote. But this seemingly obvious observation should not, in Draper's
view, preclude these helpless patients from being used in animal organ
transplant experiments. "I see no objection in principle to the
proposal that competent people can decide, in advance, to participate in
research when they become incompetent."
Nor, apparently, would Draper limit such human
experimentation to those believed to be unconscious. "Helping
others by taking part in clinical research is undoubtedly a good way to
live out what may be years in a PVS or other less-compromised
states," she writes.
Consider the kind of scenario this advocacy
contemplates: Alice, a woman in her late 20s, nearly drowns. Aggressive
CPR restarts her heart but she remains unresponsive for six months.
Doctors tell her husband Jack she is in a persistent vegetative state—and
although the diagnosis is difficult to make with certainty and is often
wrong—they conclude she will never awaken.
Since the law now considers a persistent vegetative
state the same as being dead, the state issues a death certificate. Jack
assures doctors that Alice wanted her body used for science if she ever
died or became profoundly incapacitated. Accordingly, her
"breathing cadaver" is transferred from a nursing home to a
major organ transplant center. Soon, her kidneys are removed for
transplantation into renal patients. Doctors then implant pig kidneys.
Alice survives the surgery and continues to breathe on her own. She
lives for years in isolation as researchers continually test for
dangerous porcine viral infections. When the experiment concludes, Alice
is lethally injected—which is not considered euthanasia because she is
already legally dead— and her remains are cremated.
It's an ugly picture, and it is important to emphasize
that transplant surgeons do not currently harvest the organs of
vegetative patients, nor do medical researchers use these most
vulnerable people in unethical medical experiments. But if we want to
keep it that way, we will have to make it unequivocally clear to the
bioethicists and our lawmakers that patients diagnosed with persistent
vegetative state are people, too. It's wrong to reduce them into the
nonfictional equivalents of axlotl tanks.
Wesley J. Smith
is an
attorney for the International Task Force on Euthanasia and Assisted
Suicide, a special consultant to the Center for Bioethics and Culture,
and is a senior fellow at the Discovery Institute. His article
originally appeared in the San
Francisco Chronicle on October 22, 2006, and is reprinted here with
the author’s permission. Mr. Smith’s web site can be accessed at
www.wesleyjsmith.com
Computerized brain connections show better
quality of life in ALS patients
Research, recently published in the journal Psychophysiology,
sheds new light on the condition known as the completely locked-in
state (CLIS), a state where the patient’s total lack of muscle control
makes communication virtually impossible. Patients totally paralyzed
with advanced ALS (Lou Gehrig’s disease) are among the patients
considered to be in CLIS. ALS is a motor disease which progressively
destroys the peripheral and central motor system in the body.
German researcher Niels Birbaumer, from the University
of Tübingen, found that when brain-computer interfaces (BCIs) are used
before the patient goes into the CLIS state, the patient can learn to
communicate using the electronic device and continue that skill in the
CLIS state. BCIs use activity in the brain to communicate by means of
external devices like computers.
One of Dr. Birbaumer’s most significant findings was
that the ALS patients studied rated their quality of life far better
than their caretakers or family members did, even when the patient was
completely paralyzed and on a respirator. He also found that "only
9% of the patients showed long episodes of depression, most of them in
the time period following the diagnosis and a period of weeks after
tracheostomy." "In fact," he wrote, "they are in a
much better mood than psychiatrically depressed patients without any
life-threatening bodily disease."
According to Dr. Birbaumer, most ALS patients choose not
to have artificial respiration or feeding and then die of respiratory
problems. They are often pressured into foregoing such treatment by
doctors and family members who think their quality of life is too low
for such measures. In the Netherlands and Belgium where euthanasia is
legal, very few patients choose to continue life. "The facts on
end-of-life issues and quality of life," Dr. Birbaumer concluded,
"do not support hastened death decision in ALS…." [Birbaumer,
"Breaking the silence: Brain-computer interfaces (BCI) for
communication and motor control," Psychophysiology, 43
(2006), 517-532]
Australia’s
renegade "Dr. Death," Philip Nitschke, continues to be
in the news. Upon his return from the World Federation of Right to Die
Societies’ meeting in Toronto, Australian customs officials at the Brisbane
Airport seized 45 copies of his new book, The Peaceful Pill
Handbook, which contains instructions on how ordinary people can
make their very own "suicide pill." Officials said the
book was an incitement to suicide. [ABC News, 9/22/06]
While Nitschke seems to relish provoking authorities
by testing legal limits, he usually avoids situations where he
personally would be as risk for prosecution. In September he arranged a
trip for himself and 12 elderly Australians to travel to Mexico
to buy bottles of the barbiturate Nembutal, a drug banned for
human consumption in Australia and an item classified as a prohibited
import. The drug, however, is #1 on Nitschke’s
best-drug-for-human-euthanasia list, and, since it is only allowed to
put down animals, he routinely recommends that people make friends with
veterinarians in order to obtain access to the drug. But, that’s
easier said than done. Hence, the trip to Mexico. When the time came to
return to Australia, the elderly people successfully smuggled in their
bottles of the drug. Nitschke, however, decided to dump his bottles
before going through customs, saying it was "too risky." He
later made light of the incident to the press: "We’re talking
80-year-olds, and the general feeling amongst them is ‘if I get
caught, what the hell.’" [The Sunday Mail (Adelaide),
9/24/06]
), there have been documented cases where PVS
patients have awakened suddenly after being given the sleeping
medication
). In the cases
involving three South African patients, published in the medical journal
each patient awakened about 20
minutes after the drug was given and remained conscience for
approximately four hours. A second dose was then given, allowing each
patient eight hours a day to interact with their families and
caregivers.