[Paleopsych] NS: Last rights: The battle for a dignified death

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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

    [13]Assisted dying and the law
    [14]Enlarge image
    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
    South Australia.

    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.

Get-out clause

    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.

Slippery slope?

    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
    ([15]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
    usually legal.

    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.


   13. http://www.newscientist.com/data/images/archive/2496/24967001.jpg
   14. http://www.newscientist.com/data/images/archive/2496/24967001.jpg
   15. http://www.publications.parliament.uk/pa/ld/ldasdy.htm

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