By Wubby Luyendijk for NRC International

It used to be that the doctor ruled over the death bed; now he has to take the patient's wishes into account. Anthropologist and lawyer Anne-Marie The about the Dutch euthanasia law in practice.

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The doctor and the patient had agreed to meet at 2 p.m. on a Friday. When the doctor rang the doorbell the patient was watching TV: the Wimbledon tennis tournament was on. Did the doctor mind if he finished watching the match first?

The anecdote illustrates the often very complicated relationship between doctor and patient when it comes to euthanasia. Doctors often feel cornered, says anthropologist and lawyer Anne-Marie The in a study about euthanasia in the Netherlands published last week. The 2001 euthanasia law puts the patient's right to self-determination first, but doctors also have their professional responsibility and their own values and convictions. Do the wishes of the patient always trump those of the doctor? Is he or she a mere instrument?

Last year doctors in the Netherlands reported 2,331 cases of euthanasia and assisted suicide. Anne-Marie The talked to doctors and medical specialists about the practice of euthanasia, and with lawyers, ethicists and politicians about how the Dutch euthanasia law came about.

"There is the euthanasia law and then there is euthanasia reality," she says. "To think that we have neatly arranged everything by adopting the euthanasia law is an illusion. Reality is more complicated than that: every patient, every situation and every doctor is different."

All about doctor-patient relations
The Dutch euthanasia law didn't legalise euthanasia, but it allows a medical review board to suspend prosecution of doctors who perform it under certain conditions. These include that the patient's suffering has to be unbearable and hopeless, his or her request has to be made voluntary, and patients must be made fully aware of their condition and any alternatives to euthanasia. A second doctor must concur that these conditions are met.

But as Ms The found, reality doesn't always follow procedure. One doctor told her of a patient with a lung carcinoma; she was slowly suffocating and begged the doctor to "please end it". The woman had not previously stated she wanted euthanasia, but she kept insisting. And because the doctor was unable to get a second opinion on a Friday evening he decided to give her an overdose of morphine anyway. The family was relieved, but the doctor wasn't. He didn't tell anyone.

"In the end it all comes down to people," says Ms The. "Euthanasia is between a doctor and his patient. There is no use denying that. It is remarkable, for instance, how differently doctors deal with euthanasia. One doctor will bring it up himself, another will avoid the subject as long as he or she can. When it does come up it is up to the doctor to figure out what the patient really wants. In the end he has to 'feel' if euthanasia is the right solution, if the patient's suffering is really 'hopeless and unbearable'. That involves having lots of conversations with the patients and their loved ones so that together they grow convinced of the necessity of euthanasia and the logical moment to do the deed."

Victims of new medical powers
Until the mid-1960s patients were literally at the mercy of their doctors. But as medical science progressed a growing number of doctors began having pricks of conscience. New reanimation and transplant techniques meant the moment of death could forever be postponed. In 1969 Dutch psychiatrist Jan Hendrik van den Berg used shocking pictures of a man whose entire lower body had been amputated to demonstrate how patients had become the victims of the new medical powers. Why was this man not allowed to die? Why had the doctors taken his free will away from him?

In 1972 a number of doctors went public with their dilemmas on Dutch television. They told the audience how they often let patients die anyway. When a year later general practitioner Truus Postma was prosecuted for assisting her own mother's suicide after a heavy stroke, euthanasia became a subject for public debate. Subsequently a handful of politicians, legal experts and ethicists - not doctors - took it upon themselves to regulate euthanasia. The process led to the Dutch parliament adopting the world's first euthanasia law in 2001; it came into effect in 2002.

To what extent have the legal experts made the doctor's job easier?

"The law and the euthanasia debate have created clarity where before the doctors was left to his own devices. It put criteria in place: the patient's request needed to be well considered, and at least one other doctor had to concur. And it ended the messy use of medication. I have spoken to doctors who would wait in the street the whole night for their patient to die; others used a pillow."

Many other countries think the Dutch euthanasia law is too liberal.

"That's because other countries don't recognise a patient's right to self-determination. The doctor is still the boss at the death bed. Another reason is that other countries were much more advanced in palliative care. They have a point there: by adopting the euthanasia law the Netherlands went the other way. Euthanasia came first, palliative care came afterwards."

Palliative care focuses on relieving a disease's symptoms rather than attempting to cure the underlying disease with the aim of guaranteeing patients the best possible quality of (end of) life. Els Borst, the health minister at the time the euthanasia law was adopted and a doctor herself, confided in Ms The that she too thought it was wrong to put euthanasia before palliative care. She was not alone in thinking so. Among the general practitioners, who are on the front-line of euthanasia, a reluctance against assisted suicide began to take root. One of them was Amsterdam general practitioner Joke Groen-Evers. A long-time supporter of euthanasia, Groen-Evers changed her mind after 2001 and began to advise patients and colleague against euthanasia. She hoped good palliative care would make euthanasia obsolete.

Groen-Evers' mission never really took off, says Ms The, but she does offer "a set of alternative tools". When a patient brings up the subject, Groen-Evers enquires what it is he or she is afraid of. Is it fear of dying alone in the middle of the night? If so, she will try to find a solution. And she makes a point of calling the patient herself and stopping by on regular days. In most of her cases the request for euthanasia is never made.

Will palliative care replace euthanasia?

"No, there will always be people who want complete control over their life and death. But the balance is better. The road towards euthanasia is less narrow now; there is more palliative care before a doctor and a patient turn to euthanasia. But there is still a lot of room for improving palliative care. Doctors have to receive better training. Patients often ask for euthanasia out of fear, but than can change if they are placed in a different environment."

The United Nations has criticised the Dutch euthanasia policy last summer; it said we should have the checks and balances before and not after the fact.

"They have a point there. When the independent commission of medical, ethical and legal experts reviews a case the patient is already dead. But doing it before the fact makes the procedure much more complicated. It is time-consuming at a moment when time is of the essence. And there is a good chance that doctors will hide complicated cases from the commission. They already do that when there are questions about mental competence, or in the case of children, demented or otherwise handicapped patients. The law is still pretty vague about that."

How often do doctors fail to report euthanasia?

"I have no idea. It is my impression that doctors are very reluctant to talk about euthanasia because it is such a difficult question. And we will not make things better by distrusting the doctors. At the end of the day, euthanasia is not about the rules but about the doctor-patient relationship. We need to put more emphasis on that relationship, and we need to give more attention to euthanasia and palliative care during medical training."

Has your research changed your own opinion about euthanasia?

"I understand why people want euthanasia, but I don't share that wish myself. Perhaps it is because I have seen so many people die, at the hospital and nursing home where I worked, but also my own grandmother, who was a cancer patient. For her, dying was part of life. On her death bed she simply embraced it. I thought it was quite beautiful that as a child I was allowed to sleep next to her and help her get cleaned up. She was unconscious for three days. When she started retching the doctor gave her a bit of morphine. The next morning she had slipped away. That's the way I would wish to go too."

Photo: FlickR/Khalid Almasoud