[Paleopsych] NS: Last rights: The battle for a dignified death
checker at panix.com
Sat Apr 23 23:46:53 UTC 2005
Does anyone know about the attitudes toward death in paleolithic times?
Was there a single attitude? I doubt it.
Last rights: The battle for a dignified death
* 23 April 2005
* Laura Spinney
* Laura Spinney is a writer based in London
Assisted dying and the law
Assisted dying and the law
LAST December Alayne Buckley, a 61-year-old former receptionist from
Wakefield in the north of England, told New Scientist about the
dilemma she was facing. Buckley had been diagnosed with motor neuron
disease, also called amyotrophic lateral sclerosis, a progressive
paralysing condition that is almost always fatal.
By Christmas, Buckley needed a ventilator to help her breathe, and she
was spending most of her time sitting in a chair, or occasionally
shuffling short distances using a Zimmer frame. She knew that within a
few months she would most likely be completely paralysed and unable to
communicate, while still being able to see, hear and feel pain.
Buckley wanted to die before reaching this "glass coffin" stage, as
she called it. So she faced a choice: either she could switch off her
ventilator and suffocate to death, or she could travel to Switzerland,
where a doctor could legally mix up a lethal cocktail for her to
Suffocation is not a pleasant way to die. But the trip to Switzerland
would also throw up problems. In the UK it is illegal for anyone to
aid a suicide, so she would have to make the journey on her own. But
her mobility was dwindling fast. "The ridiculous thing is that I will
have to go while I'm still able to move, which may be before I'm ready
to die," she said.
Euthanasia and similar end-of-life issues are rarely out of the news
these days. A succession of patients keep making headlines in the UK
as they fight for what they see as their right to a dignified death.
And the US has recently witnessed an unedifying public battle over the
removal of a feeding tube from Terry Schiavo, the 41-year-old woman
from Florida, who suffered brain damage after a heart attack in 1990
and died at the end of March. It seems that rather than helping people
at the end of their lives, some advances in medical technology have
made dying a more prolonged and undignified business.
But there are signs that around the world the tide of public opinion
is turning in favour of what is sometimes called mercy killing.
Switzerland is not the only country where assisting dying is legal: in
the past decade, the Netherlands, Belgium and the US state of Oregon
have legalised the act in some form. And there are campaigns to follow
in their footsteps elsewhere, including the UK, other US states and
In Britain a proposed right-to-die law won tentative support this
month from a parliamentary committee. The Assisted Dying for the
Terminally Ill Bill would enable a dying adult who was suffering
unbearably to receive medical assistance to die. After considering the
experiences of other countries, the committee recommended that the
bill should be further debated in parliament. "I believe the problems
and the suffering caused by the present laws will become increasingly
difficult for parliament to ignore," says Joel Joffe, the House of
Lords member who is championing the bill.
Assisted dying is not a particularly modern controversy. When taking
the Hippocratic oath, a pledge dating from 400 BC, trainee doctors had
to swear to "give no deadly medicine to any one". This was despite the
relatively permissive attitude to suicide in ancient Greece. The Bible
is not generally seen as frowning on suicide, with Christian
disapproval of the act dating from about the 4th century, after St
Augustine interpreted "thou shalt not kill" as condemning suicide as
well as murder.
Switzerland has the longest history of allowing assisted suicide -
although not euthanasia (see "Terminology"). A law dating from 1942
states that it is only illegal to help someone to commit suicide "with
a selfish motive", which is widely interpreted to mean that
disinterested helpers are safe from prosecution. Because Switzerland
is the only place in the world that allows such help for
non-residents, sick people from all over Europe and occasionally the
US have trekked there to receive help in dying.
Assisted dying seems to be most prevalent in the liberal Netherlands,
where the courts have tolerated both assisted suicide and euthanasia
since the early 1970s. They were specifically legalised only in 2002,
however, after lobbying by the Royal Dutch Medical Association, which
argued that doctors needed legal protection.
In the US, doctor-assisted suicide has been mooted in several states,
including California and Michigan, but it is only in Oregon that this
act has been legalised, since 1997. The federal government has made
several attempts to overturn this law, but so far it has been
unsuccessful. And in 2002 Belgium legalised euthanasia by doctors, but
not assisted suicide.
In the rest of the world, however, it remains illegal for anyone -
doctor, nurse, friend or relative - to help someone commit suicide or
carry out euthanasia, no matter how ill the patient. The law generally
distinguishes between "active" euthanasia, when a doctor administers a
lethal drug, and what is sometimes called passive euthanasia, when a
life-saving treatment is rejected or withdrawn. Such treatment
withdrawal is completely legal, although sometimes a patient's
relatives disagree with the decisions of medical staff - or with each
other, as in Schiavo's case.
So what kind of circumstances might lead someone to try to hasten
their own death? According to Exit, a Swiss organisation that helps in
around 100 suicides a year, about 70 per cent have cancer. Other
common conditions are heart disease, AIDS and neurological disorders
such as motor neuron disease. Patients seek relief from symptoms such
as unremitting severe pain, breathing difficulties such as choking and
suffocating, and nausea and vomiting.
Drugs can relieve some symptoms, of course, but most strong
painkillers have unpleasant side effects, points out Michael Irwin, a
retired general practitioner and former chairman of the UK's Voluntary
Euthanasia Society. For example, at high doses, opioids such as
morphine can cause nausea, vomiting, severe constipation and sedation
to the point of unconsciousness.
High doses of opioids can also hasten death, because they depress
activity in the brain's respiratory centre, slowing down the breathing
rate. In many countries doctors may legally give a dose of painkillers
high enough to accelerate death, as long as their primary goal is pain
relief. This get-out clause is sometimes called the doctrine of double
Estimates of the proportion of terminally ill patients whose pain
cannot be relieved range from 3 to 7 per cent. "The 5 per cent or so
who remain with severe pain can only be helped by being placed in a
coma, not just made sleepy," says Irwin.
Not all doctors believe the answer for these patients is to legalise
assisted dying. Nigel Sykes, medical director of St Christopher's
Hospice in London, argues that pain relief is improving all the time.
He points out that in the past 10 years several new opioids have
become available, giving patients more chance of finding a drug that
suits them. There are also new therapies to combat the side effects of
the painkillers, such as anti-nausea medicines. "We are gradually
whittling away at that group of patients who didn't do well on the
long-standing drugs," says Sykes.
But just because drugs are available does not necessarily mean
patients receive them. A report published in 2001 by the US Institute
of Medicine in Washington DC found that a quarter of cancer patients
die in severe pain. There are numerous practical and financial
obstacles to patients getting the drugs they need, ranging from
inexperienced medical staff to lack of resources. Palliative care, the
branch of medicine devoted to helping dying patients, has only
recently been recognised as a distinct specialty. Generally things are
improving; the number of countries with some form of palliative care
service has doubled from 60 in 1994 to roughly twice that today. But
even in the US only about a third of academic medical centres have
palliative care programmes. Overall, expertise remains patchy. "There
are definitely places where you would rather not die," says Timothy
Quill, a palliative care specialist at the University of Rochester
Medical Center in New York.
Opponents of assisted dying argue that the priority instead should be
to overhaul palliative care services and provide more practical help
so the terminally ill do not feel they are a burden. Not only would it
be unsafe to introduce euthanasia before good palliative care is
available to everyone, says Sykes, "but it would be unsafe to do so
before we make all social and nursing care free".
Experience suggests that the two goals are by no means mutually
exclusive. Since 1997 Oregon has seen increased hospice referrals and
high attendance of doctors at palliative care conferences. In the
Netherlands too, the founding of hospices and the development of
palliative care as a separate specialty has only seriously begun in
the past three years.
What other insights can be gained from looking at areas where assisted
dying is legal? A major fear of opponents is that no matter how
tightly it were initially controlled, it would gradually become
increasingly common - the so-called slippery slope argument. "In
euthanasia there are two choices: you either open the door or leave it
shut," says Peter Hildering, chairman of the Dutch Physicians' League,
a group of about 450 mainly Christian doctors who strongly oppose
their country's law. "It is impossible to set this door ajar."
Some of the most vociferous campaigners against assisted dying are
disabled rights groups, who argue that if assisted dying were
legalised, the criteria would broaden until disabled people came under
pressure to end their lives. Hildering believes that the Netherlands
is already sliding down the slippery slope. "The discussion has now
reached the people who cannot decide for themselves: people suffering
from Alzheimer's disease, newborns with a defect," he says.
Certainly the official surveys of assisted dying in the Netherlands
suggest there are about 1000 cases a year where euthanasia is carried
out without a patient's explicit request. Dutch doctors say these are
mainly cancer patients who are suffering terribly in their final days
but are not conscious enough to make the request, or severely disabled
newborn babies who seem certain to die.
But the surveys also show that rates of euthanasia and assisted
suicide have remained stable at 2.7 per cent of all deaths. And the
latest set of figures, from 2003, show doctors are actually getting
stricter in their judgements on whether or not patients meet the
official criteria for assisted dying (The Lancet, vol 362, p 395). The
figures do not seem to support the slippery slope argument.
In Oregon, surveys suggest that so far the law is being used with
restraint. Doctor-assisted suicide accounted for only 0.1 per cent of
deaths in Oregon in the three years to 2000. "Cases are relatively
rare," says Quill. "People are using the system as it was intended."
The findings from Oregon also suggest that not all patients who
request assisted suicide go through with it. Almost half of those who
get a prescription for the lethal cocktail of barbiturates do not take
the 200 millilitres of bitter liquid. Rob Jonquiere, managing director
of the Netherlands Right to Die Society, says that tallies with his
experiences. To know they have control of their death is an enormous
relief for people, he says, and sometimes that is enough. "No longer
obsessed by their fear of death, they can spend their energy on living
the life that is left to them."
So what is the likelihood that people in other countries will one day
be able to receive help in dying? In fact they already do. In the UK,
for example, estimates of the proportion of doctors who have helped
patients die range from 4 to 12 per cent. According to a 1998 survey
of nearly 2000 US doctors, 16 per cent of those who had received a
request to hasten death had done so (The New England Journal of
Medicine, vol 338, p 1193). Irwin believes that many UK doctors carry
out euthanasia while claiming their primary motive is pain relief.
"Doctors hide behind the hypocrisy of the double effect," he says.
The last attempt to legalise assisted dying in the UK was in 1994,
when the parliamentary bill was thrown out. Joffe's new bill has had a
warmer reception. The House of Lords committee that investigated it
gathered a huge volume of evidence, visiting the Netherlands, Oregon
and Switzerland to gain insights from their experience
(www.publications.parliament.uk/pa/ld/ldasdy.htm). Earlier this
month the committee recommended that an amended version of the bill be
further debated in parliament.
It is by no means certain to become law, especially as the British
Medical Association remains opposed. But several other influential
doctors' bodies, such as the Royal College of General Practitioners,
have shifted to a position of neutrality on the issue. Supporters of
euthanasia have interpreted the Lords' report as a tentative first
step on the road to legalising assisted dying.
Whatever the outcome, it is too late to help Alayne Buckley. New
Scientist has learned that she died last month. Her family do not wish
to discuss the circumstances, although they agreed to the details of
her final interview being published in this article.
In future others in Buckley's position may not have to face her
agonising dilemma. They could instead face other, equally hard choices
- such as who to entrust with their death.
ASSISTED SUICIDE - when someone receives help in taking their own
DOCTOR-ASSISTED SUICIDE - when a physician helps someone to take their
own life, usually by supplying lethal drugs, although the patient must
self-administer them or the act is classed as euthanasia.
EUTHANASIA - when another party performs the actions that directly end
someone's life, sometimes divided into active and passive...
ACTIVE EUTHANASIA - when an active step is taken to end life, such as
directly administering medication.
PASSIVE EUTHANASIA - when drugs or therapy such as a feeding tube are
rejected or withdrawn. Also called TREATMENT WITHDRAWAL, this is
ASSISTED DYING - umbrella term for assisted suicide and active
ADVANCE DIRECTIVE - a plan for what kind of medical care someone would
like if they become incapacitated, for example if they are in a coma.
Can relieve relatives of the responsibility for difficult decisions
about treatment withdrawal. An advance directive that comes into
effect only when someone is terminally ill is known as a LIVING WILL.
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