Wednesday, January 22, 2014

Legalising euthanasia threatens people with disabilities

By Dr Kevin Fitzpatrick, Executive Director - EPC Europe

Kevin Fitzpatrick
Taking the life of a human being is always a terrible matter: some doctors, philosophers and others appear to have dismissed this as relevant to disabled people.

This is the radical step: some people, usually non-disabled people (but not exclusively so), judge other people (disabled people) as appropriate candidates for elimination, as having lives not worth living. The next steps are: ‘it would be a mercy to allow this no-longer-fully-paid-up person to die’; ‘it is the only compassionate thing to do’; ‘suicide or euthanasia is the morally right choice’.

Legalising assisted suicide is argued to be different from euthanasia law. This is at best, naive: but as one doctor has admitted: ‘...opponents [in Holland] argued that we were heading down a slippery slope to lethal injection where there was no ambiguity between killing and letting die. They were was a matter of time until we considered the lethal injection.’ This is in his preface to a book of articles defending Dutch practice.[i]

Almost universally, those who die by euthanasia are disabled in some way. It is just false to say that ‘everyone who is like this’ will want to die. Those who despair especially at the time of their injury, most often adapt given sufficient time, and the right support. Only 1 out of every 4 or 5 doctors in A&E (emergency room) say they can imagine life as a quadriplegic, but 90% of quadriplegics say they are happy to be alive. The vast majority of disabled people want to live.

Laws, by their nature, must be general. This generality ‘this disabled person and all people like them want to die’ – this is the false move in legalising euthanasia, and the consequences are dire.
A successful, severely disabled woman, now in the British House of Lords, had life-threatening pneumonia. Jane’s doctors told her they would not ventilate her. When she said: ‘But that means I’ll die’, the doctors went away upset. Her husband fought for her to get the same treatment as anyone else. But she still stayed awake for three nights and days, in an intensive care unit, frightened that if she fell asleep she would never wake up again.

A father of three young children with MND, in an Irish hospital, Simon’s doctor came to him while his wife and mother were at his bedside and said: ‘Simon it’s time to make the hard decision.’ i.e. to die. They had no policy of sending patients home on ventilators.

David, with multiple complex needs, was only twelve years old when two doctors in hospital decided to euthanize him without consulting anyone. His family rescued him and his case was later won in the European Court of Human Rights.

In these cases, the patient-doctor relationship is fundamentally changed by such attitudes. Good clinical governance has patient safety at its core; when that safety is removed, it is no longer possible to speak of the highest quality of patient care.

Must someone, gravely injured maybe fighting for their life, first ask the attending doctor if they are not a paid-up member of ‘the euthanasia party’, before letting them treat, to save life?

Two months ago in the US, at the request of his family doctors woke Timothy Bowers from coma just after his high-cord injury. Told he might never breathe on his own, that he would never hold his child, he was asked if he wanted to live. He chose not to at this moment and is now dead.

Wim Distelmans, an oncologist (nota bene), is chairman of the Belgian Euthanasia Control and Evaluation Commission. Distelmans is also Belgium’s leading practitioner of euthanasia. This Commission has never investigated even one of the euthanasia deaths reported to it. Worse, research shows 47% under-reporting of euthanasia in Belgium.

Tom Mortier's mother
How can this be safe?

Tom Mortier’s mother died by lethal injection administered by Distelmans April 19, 2012 — she had chronic depression.

It wasn’t the serene family gathering, full of peace and reconciliation, which euthanasia supporters gush about. The...[h]ospital phoned my wife the day after. It was the first we had heard of it. My mother died without her closest family at her bedside.

45-year-old deaf identical twins, gradually going blind, believed they had nothing to live for, and asked for euthanasia. 44-year-old Nathan Verhelst was born as Nancy. Nathan’s mother declared her child to be the ugliest thing she had ever seen at birth, hated girls and told the press she was glad Nathan was dead. Distelmans euthanized them all. He received international media attention in both cases.

Depression, deaf-blindness, transgendered and depressed after botched sex-change operations -  it does not stop there in Belgium.

Ann G was anorexic: she was sexually abused by the psychiatrist who was supposed to be treating her. She chose to die.

None of them was terminally ill. Now Belgium has agreed to proceed with legislation to allow children of any age will now be able to request euthanasia.

In a meeting in Brussels November 13, 2013, one of the doctors influential in Belgium’s acceptance of euthanasia into law admitted there were problems with the law there. Research shows not only under-reporting (illegal) but also that nurses are euthanizing patients (illegal) and that older people, typically demented and who therefore cannot be considered to give full and informed consent, are being euthanized (illegal).

At this meeting another Belgian government adviser argued that someone with ‘no arms and no legs’ was right to want to die and that it was his proudest life’s work to have helped bring in the law which allowed disabled people to die. When challenged he shouted angrily at one person in audience ‘Just wait until you are paralysed!’

The Comité Européen de Droits Sociaux decided in December 2011 that Belgium was a human rights catastrophe because of its lack of support for disabled people. No wonder disabled people in Belgium fall into despair. 

These disabled people are not ‘exercising their autonomy’: there is only one thing left for them, death, and one choice, this choice, is no choice at all. It is the end of all choices.
Under their Groningen Protocol Dutch doctors are euthanizing disabled babies on the grounds of their projections of how the child will suffer growing up, and now it seems, on the grounds not of the child’s issues but because of the parents’ suffering.

As one 11-times gold medallist athlete born with spina bifida, a wife, mother, daughter, sibling and in a successful career and also in the House of Lords, said: If that had existed in the UK when I was born there is a possibility that I would not be alive now.  I would never have been allowed to experience life and my daughter might never have been born.’

Where euthanasia remains illegal there is protection for disabled people, older people, vulnerable people who fall into or are driven to believe they have only one alternative: to die. Typically, they say they ‘are just a burden’ on others. Pain is very rarely the reason – research as far back as 1992 had already shown that in only 5% of cases was pain the reason.[ii]  And those in ‘intolerable’ pain deserve much better palliative care nowdays.

Providing overdoses of barbiturates to patients, or injecting someone with a lethal dose of poison, or switching off life-sustaining machinery - these decisions come when medicine has reached its limits. Doctors may say: ‘we can do no more.’ Euthanasia is therefore not an act of medicine, whoever carries out the act.

(Euthanasia is not a medical act. It is an intervention to death.)

Many (can we still say ‘most’?) doctors practice with great care, dedication, even brilliance and other positive or extraordinary qualities. But doctors are also just as likely to experience all human frailties: distraction, financial pressures, family matters, sheer exhaustion, cynicism, failing to guard against ‘routineness’. They too may forget to put boundaries on their competence for moral reasoning and end up ‘mistaking their vices for virtue’.

Doctors have no pre-eminence in moral decision-making. Being qualified as a doctor can do nothing to make someone into a moral ‘expert’. There is no training which could possibly count as making anyone a moral ‘expert’. (This is not an argument for moral relativism).

Legalising euthanasia fundamentally attacks the rights of vulnerable people to protection and life; it also threatens the rights of practitioners. Doctors have the right to say: ‘No, I won’t do this’, but still laws which permit euthanasia demand that doctors are at the centre of the final acts to end life. When euthanasia and assisting suicide remain illegal, there is also protection for doctors who for reasons of faith, or moral thinking, or for any other reason, have no wish to take any life.

These are the doctors who remember that the patient in front of them, no matter how terrible their condition, is still a human being.

[i] Younger S J & Kimsma G K Physician Assisted Death in Perspective: Assessing the Dutch Experience (CUP, 2012) xx
[ii] See for example, Van der Wal G, Dillman RJM (1994) 'Euthanasia in the Netherlands' British Medical Journal vol 308, p1346-9; Van der Wal G, van Eyk JTM, Leenen HJJ, Spreeuwenberg C (1992) 'Euthanasia and assisted suicide II: Do Dutch family doctors act prudently?' Family Practitioner vol 9, p41-6.

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