Looking death in the eye

MARIE went home to Holland to die. She would not have had it any other way

MARIE went home to Holland to die. She would not have had it any other way. The independence and control she had exercised over her living she was determined to exercise over her dying. They would respect her wishes. The leukaemia had stayed at bay for six years but the end was coming last.

Anne came up from Brussels to see her friend on that last day. She says Marie was in control, on a tightrope between pain and unconsciousness, dictating now and then when the morphine would be administered. When the time came, on her instruction, the doctors would administer the final dose.

She had business to do, affairs to put right. Family and friends to say goodbye to. Each got their turn. Anne, like others, had a few minutes, Marie warning her she might slip occasionally into morphine induced hallucination. Not to worry, she said, she was in control.

Anne remembers most the dignity, the candour with which death was spoken of by nursing staff and family alike, and the meticulous wrapping up of loose ends. For all involved there was a chance to say the things that have to be said and can only be said at the end, but that may escape those whose deaths are untimed.

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Anne has been diagnosed with leukaemia too. A different brand. She has got years ahead of her - maybe as many as any of us - but her friend's death is important to her. "I would like to think I could have a death as good as Marie's," she told me, "to have as much honesty and autonomy as she had.

She said she didn't think she'd have the courage for suicide. She'd probably make a mess of it. But Anne is not Dutch. At home in Ireland euthanasia is illegal, even taboo. She hopes for change.

La Rochefoucault said "neither the sun nor death can be looked in the eye". But the truth is that the Dutch, relentless pursuers of all things to their logical end, seem to have done just that.

THEIR health minister, Els Borst Ellers, is an unusually popular politician. The 65 year old doctor, medical professor, and former head of the Health Council is a member of the liberal D66 party and one of the country's most outspoken advocates of euthanasia.

As minister, she recently opened the new headquarters of the 88,000 strong Voluntary Euthanasia Association (NV) and has publicly announced that if she ever becomes senile her children know what she wants done.

But the NVVE has expressed bitter disappointment that Dr Borst Ellers's coalition government, the first in decades in which Christian Democrats are not serving, has not proposed to decriminalise euthanasia. Instead of a radical approach, the NVVE says, the government has opted to tinker with a contradictory system by establishing new ethical committees to review individual cases.

The priority, the minister explained, was to increase accountability of doctors and specifically the rate at which they report cases from the current level of 40 per cent to as close as possible to 100 per cent. The guidelines would not be changed, nor would the criminality of the act. The idea was simply to reassure doctors that they would face a more sympathetic review of their actions.

Jonne Boesjes, the spokeswoman for the NVVE, argues that the proposals, because they still leave doctors in a legal limbo, are unlikely to have the desired effect. The NVVE and the Royal Dutch Doctors Association (KNMG) are preparing a joint response to the move which is likely to make the case again for decriminalisation.

While recognising the need to keep euthanasia in the penal code, they argue for a change in the burden of proof in such cases, shifting the onus from the doctor to the state.

Prof Gerrit van der Wal, of the Free University of Amsterdam, who led the government study into the experience of the last five years, shares their concern and fears the proposals could simply add to the bureaucracy facing doctors.

He is convinced the vast bulk of those not reporting are in reality keeping to the spirit of the guidelines. Of fears that there will always be those willing to break the guidelines, he replies simply that such people will never report. "Yes, they exist but also in Ireland, the US, Britain.

But one of the government's key advisers, Jacob Visser, of the medical ethics division of the ministry, argues that the gradual rise in reporting by doctors shows the policy is he, adding in the right direction. "No one expected 70 or 80 per cent, but the increase shows the policy is not unsuccessful," he says, arguing that if such figures are eventually achieved it may then be possible to move to decriminalisation.

The treatment of the issue by the government as one of management rather than principle has also disappointed the anti euthanasia lobby. Dr Teus Van Laar, president of the 600 member "pro life" Dutch Physicians League (NAV), warns it will be impossible to bring reporting up to 100 per cent without removing all controls on doctors. What accountability would there be then, he asks?

He sees euthanasia as a fundamental violation of the Hippocratic oath, an argument strongly contested by Visser. A doctor's obligation is to keep his patients alive, he says, but if he knows that a treatment can no longer be successful then he also has an obligation not to let, patients suffer.

Dr van Laar opposes what he sees as the pro euthanasia lobby's desire to make euthanasia a normal part of medical practice. The alternative, he says, is the development of real palliative care - not Just the management of pain but total care. And he accepts that may include the administration of potentially life shortening morphine for pain relief.

Patients such as those with motor neurone disease can and must be convinced it is not necessary to die in enormous discomfort.

Dr van Laar deplores what he sees as the search for instant gratification in an increasingly materialistic society which has lost its spiritual values. Particularly, he fears the "loss of our willingness to see a reason in our lives for suffering".

NAV's deputy president, Dr Krijn Haasnoot, argues: "if a patient says `end my life', then he is saying the rest of his life is worthless. Doctors should not accept that logic." He believes the Netherlands is on a slippery slope in which the value of human life is being demeaned first terminal cases, then the incurable, now mental patients are eligible. What is that except a slippery slope?

And he rejects the argument that the Dutch approach is a common sense response to a social reality the law can only hope to, regulate. "The law is a great teacher," he says. What is permissible becomes acceptable and" morally justifiable.

Both Dr van Laar and Dr Haasnoot accept the argument is lost in Holland, for the time being, but say they have a message for Ireland "invest in palliative care, not euthanasia".

The contrast with Jonne Boesjes's perspective and that of the NVVE could not be starker. She argues that the current system is failing precisely because two thirds of requests for euthanasia in the short term are turned down by doctors.

This, she says, is despite the fact the vast bulk of these requests are from patients who fulfil the requirements of the official guidelines - they suffer from incurable conditions, have made repeated, well considered requests for euthanasia, and are suffering "unbearably".

The NVVE argues that, although it has no quarrel with the guidelines in principle, the patient and not the doctor should be the measure of the deeply individual concept of "unbearable". That is crucial, Ms Boeijes says, if the autonomy of the patient is to be genuinely protected. The result is that doctors may tend to favour the requests of the more articulate or to accede to requests too late.

And she defends the right of those suffering from acute depression over a prolonged period to make the choice for euthanasia. "We should treat people in a holistic way - we cannot separate pain in the body and the mind," she says.

The NVVE provides a facility to register living wills for its members to set out the conditions under which they will accept treatment or wish to avail of euthanasia - 90 per cent avail of the opportunity.

Dr Bert Keizer, a physician in an Amsterdam nursing home, has written with great compassion - and, surprisingly, humour - a fictionalised account of his experiences of terminal care and the stresses doctors experience in assessing a patient's request.

He rejects the notion of a slippery slope. In a nursing home such as his, he says, they can expect to see some 120 deaths a year. On average only one of those is by euthanasia, he says. That is unlikely to change substantially.

He finds TV portrayals of dramatic deathbed scenes unhelpful - what patients want is simply a mild ending. "That's what people want and I can reassure them. They don't have to be put on a respirator, or an IV drip, or to end up in hospital."

Even with the best palliative care, he says, we can not avoid the reality that in some cases euthanasia is necessary. It is not just about pain control but a patient's dignity and self worth.

In the 1980s, he admits, he did not report cases he was involved in, but now does - in any case, there is no choice in a nursing home. He believes the fears cited by doctors are now exaggerated - prosecutions are extremely rare and the prosecuting authorities' never, to his knowledge, embroil the family of patients.

Bert Keizer strongly believes in doctors' accountability and shares with Ms Boesjes a healthy scepticism of his profession's high opinion of itself.

"Many doctors," he wrote in his book, "think that all this talk of valves, bones arteries, kidneys somehow touches on the essence of life. And because they know so much about arteries they think they know about life itself.

"Imagine you're dangling above a ravine at the end of a weak rope. In that situation you will listen breathlessly to the instructions of a man who knows how much the rope can withstand before it snaps. But, following such an experience you would not call this rope expert a life expert, someone who knows all about the human conditions.

As we ended our conversation, I asked Anne whether Marie had in fact died naturally or with the help of the doctor. She thought for a moment and laughed. "As it happens, I don't know ... Anyway it doesn't matter. She was in control."