A TIME TO DIE
is the Dutch model of euthanasia—even for infants— the solution when suffering cant be relieved?
KAREN KNOTTENBELT was 33 when she found out her father, Hans, was going to die. He had been diagnosed with ALS: amyotrophic lateral sclerosis, or Lou Gehrig’s disease. They both knew that slowly the nerves affecting his muscles would deteriorate until he was almost paralyzed. First he would lose his ability to walk, then to sit up by himself, speak and swallow. Eventually he would die by suffocation. But his mind would remain intact and he would be fully aware of what was happening to him.
A few years went by and the disease took its inevitable course. Hans held on to his old
life in the Netherlands as much as he could. He met his friends to play bridge although he could no longer hold his cards; he went to parties and out for drinks even when he could barely swallow. But eventually, he was confined to a bed or a chair. Nights were the most difficult time. Hans could lie still for one or two hours. But then fluids would accumulate in his throat and, in a terrifying foreshadowing of how he knew he would die, he would struggle for breath, flailing at an alarm bell beside him that would wake his wife or one of his children to come and clear his airway.
“My Dad woke up in the evenings like a scared rabbit,” Karen recalls. “He was so scared. Not scared of dying, but scared of suffocation, of the way he would die. The worst thing was that you could see someone who you love so dearly, that’s a full grownup, with fear in their eyes because they can’t breathe anymore, because they can’t get the oxygen that you need in your body. That hurts so much.”
Hans and Karen confronted a situation that hundreds of Canadians face every year. They knew Hans would die soon, and they could hope and pray for an easy death, or maybe even a heart attack. But doctors told them this would not happen, and deep down they knew this, too. Still, Hans was Dutch and he
lived in the Netherlands. So there was another option open to him.
Euthanasia is permitted in Holland if certain conditions are met—most notably if the patient’s request is voluntary, and if the doctor who ends the patient’s life and at least one other physician with no connection to the case are convinced the suffering is unbearable and that there is no hope for improvement. Hans decided he wanted to choose how and when he would die. His doctor agreed to help. Other physicians were consulted and Hans was asked repeatedly if he was sure this was what he wanted. He said it was.
Hans’s pain and fear reached a point where he felt he couldn’t face its continuation. One day he told his family: “I’m finished here.” His loved ones gathered around him one last time. His wife was there, as was Karen, her brother and her sister-inlaw. Hans was propped up in a chair and the rest of family ate dinner together. “He told us he hoped we would have many more dinners like that,” Karen says. “I don’t think any of us could really grasp what was going to happen. You know that at that point it is the last time you have together, but you don’t do anything special, because in the course of these years everything is already said. My dad knew what we wanted out of
life. And he had already told us everything that he wanted us to know about him and about what he wished for us.”
After dinner the doctor asked Hans where he would like to die. The doctor put his lethal medications in a different room so Hans would not need to see them. Hans hugged his wife and his children and lay
down on his bed. The doctor put anaesthetic into his feeding tube, then added a drug to stop his heart. ‘T think it’s one of the most beautiful things I’ve seen in my life— someone you love so dearly pass away so peacefully,” Karen says. “The most special moment was the way my dad lay on the bed and he could see my mom and me and
my brother and my sister-in-law. And he looked at us with such grateful eyes and such a thankful way. He waved at us. And he was actually smiling.”
CANADIANS suffering from a similar condition as Hans’s have no legal option to die in the same way. Euthanasia is illegal in Canada, as it is in most parts of the world. Holland, however, is the most permissive country on Earth when it comes to euthanasia. It has been legal there, under certain conditions, since 2002.
The law permits adults to choose death over continued treatment for terminal and painful conditions. But according to Dr. Eduard Verhagen, clinical director of the department of pediatrics at the University Medical Centre in the Dutch city of Groningen, some patients whose suffering deserves to be relieved by death cannot ask to die.
He’s referring to infants.
Late last year the Groningen hospital publicized the fact that in 2003 it had drawn up a protocol, in consultation with the Dutch prosecutor’s office, that specified when a suffering infant might be killed by a doctor. Among other conditions, the baby must have an incurable illness, its suffering must be unbearable, and both parents must give consent. The hospital also disclosed that, since implementing the protocol, it has ended the lives of four sick infants. In total, 22 cases involving infants in Holland have been reported to the Dutch district attorney’s office by various hospitals in the past seven years.
When this news was made public, Verhagen, a pleasant and soft-spoken father in his early 40s, was flooded with hate mail and critical letters from all over the world. Many compared him to a Nazi. A former Republican congressman, Bob Barr, wrote
in the Washington Times: “Were he attempting to escape Allied justice today, Dr. Joseph Mengele, the Nazi ‘Angel of Death,’ would not have to make his way to the jungles of Brazil; the Netherlands would probably welcome him with open arms. It’s the new ‘Dutch Treat.’ ”
Reminded of these comparisons while sitting in his sun-filled office, surrounded by children’s paintings, Verhagen smiles thinly and tucks a foot under his seat like an adolescent. He’s heard all this before and says he doesn’t take it personally. But it clearly still bothers him. Verhagen says the lives of severely ill and suffering infants are routinely ended by doctors all over the world. He was simply trying to drag a hidden practice into the open so it can be properly reviewed and regulated.
“There is a practice in the Netherlands. There is a practice worldwide,” he says. “I think one of the main questions for every country is, if you have a hidden practice of euthanasia in adults, or the active ending of lives in children, what is your approach to
PEOPLE in Holland
have been forced to talk about deliberately ending the lives of suffering newborns
that? Are you going to leave it because it’s hidden? Or are you going to regulate? What is typically Dutch is that we try to regulate it. We try to regulate it by making a system that works, so we get these hidden cases to the surface.”
In this goal Verhagen has only partially succeeded. People have been forced to talk about deliberately ending the lives of suffering newborns, and no doctor who has followed the criteria set out in the so-called Groningen protocol has been prosecuted. On the other hand, Verhagen estimates that 80 per cent of cases in which a doctor ends the life of a suffering child are not reported. And killing an infant, no matter how sick and no matter how much that child is suffering, is still technically illegal.
Verhagen was never driven solely by a desire to clear up muddy legal regulations. Four years ago, he was approached by distraught parents whose baby had a rare and horrifying skin disease and was in a lot of
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pain. Her skin slid off when touched. She had no chance of living very long. The parents wanted to end her pain, even if that meant ending her life.
Verhagen and his team of doctors did all they could to confirm that the child was suffering with no chance of relief. But they also approached the local prosecutor, who informed them that he could not guarantee they would not be charged with murder if they ended the child’s life. Verhagen felt he had no choice but to refuse the parents’ request. Their child died, presumably in great pain, some six months later. “This did not feel very good,” Verhagen says. “We had the idea that we had not delivered the best care for this child.”
Today, Verhagen does not need to face the same dilemma, nor do the Dutch parents of children who are dying in pain—they can rest assured they won’t be prosecuted if they follow the protocol. This is not to say the process is easy—it’s emotionally gutwrenching for everyone involved. “Can you imagine such a situation that parents come to you asking for the death of their child?” Verhagen says. “This is really unbelievable. But it happens. And it shows more or less how severe the suffering is. It’s terrible to witness it.”
If there is any solace in the process, Verhagen says it can be found, for doctors and parents alike, at the moment of a suffering infant’s death. “What you see happen,” he says, “is children who were up to that moment tense and in pain and very unhappy, you see them getting quiet and restful, and they fall asleep. You see it in their faces. Their muscle tone changes. They fall asleep, and gradually they stop breathing.”
POLLS SUGGEST there is wide support in Holland for euthanasia and for ending the lives of suffering infants. But strong oppositions exists as well. Bert Dorenbos, president of the Dutch Christian anti-euthanasia group Cry for Life, says killing someone, regardless of how much pain they are in, is dehumanizing. His office in an Amsterdam suburb is filled with books about the Holy Land, small wooden statues of pregnant women, and Israeli flags. He leans across a large wooden table to emphasize his point. “Nobody,” he says, “should have the right in any circumstance to take the life of someone else.”
Like many opposed to euthanasia, Doren-
bos fears the so-called slippery slope: the idea that euthanizing the sick and terminally ill will open the door to doctor-assisted suicide for those who are healthy. In Holland these are not paranoid fears. Right to Die Netherlands is a large and well-funded proeuthanasia lobby group. Its chief executive officer, Rob Jonquiere, believes that those who are not sick but who “suffer from life” should also have the right to end their own lives with the help of a doctor.
He says there are people, usually elderly and lonely, who are not sick but who see no point in continuing to live. Their friends and relatives have died and they think there is no prospect of their own lives getting better. “These people are not psychiatrically ill, but they have that wish,” Jonquiere says. “The reason for the suffering is not important. It’s the suffering that is important. In a sense, a person who suffers from life can suffer as much as a person who suffers in life because of cancer.”
Dorenbos is appalled by the implications. “When someone has a problem in their life,
we should not solve the problem or ease the problem by killing the person, but be full of mercy,” he says. Dorenbos blames the widespread acceptance of euthanasia and abortion in Holland on the country’s secularization. But he also traces support for euthanasia to the Dutch tradition of tolerance. “We have been a tolerant country through the years. We have been a country of rescue,” he says. “So we said, okay, abortion—yeah, people should have the right to abort a child. Free sex, free drugs, free euthanasia—from a tolerant society. And now we have become missionaries of evil.”
Jonquiere also thinks there is something innately Dutch about supporting euthanasia. He links it to the Dutch concept of gedogen, which he says roughly translates as tolerance of even legally dubious practices, as long as they can be morally justified. The Dutch manage problems, he says, they don’t fight them. For Jonquiere, Holland’s canal system is a metaphor for Dutch culture—it doesn’t try to stop the water flooding in from France and Germany, it steers it away from trouble.
Both Dorenbos and Jonquiere may have a point. While a few other countries permit
euthanasia-Belgium and Switzerland, for example—only the Dutch are so eager to codify its practice. They seem to value individual freedom and regulation in almost equal measures. This characteristic is evident even in the streets of Amsterdam. Soft drugs and prostitution are legal, but strictly controlled. Prostitutes in tiny panties and push-up bras
dozens of letters from people whose relatives were unofficially euthanized decades ago
beckon passersby from the windows of streetside stalls. But none can be found on the cobblestone streets, which are instead full of young and old on bicycles adorned with bells and wicker baskets.
Coffee shops openly peddle some 10 different brands of marijuana. But a tourist who lights up a joint in a raunchy nightclub is rebuked by the manager for breaking the rules—dope smoking’s not allowed there. It’s an approach to life that sits less easily with
some Dutch citizens than others. “It looks like a beautiful city,” says my cab driver, David, who was born in Turkey and says he is considering moving back there to raise his kids. “But it’s also the centre in Europe for a lot of bad things—prostitution, drugs.
If you lose your way here, you may never find it again.”
VERHAGEN SAYS that after he went public, in addition to the hate mail and criticism, he received dozens of letters and emails from people whose relatives were unofficially euthanized decades ago by willing doctors. He was even contacted by parents who had killed their own severely sick and disabled children. He says both groups told him the most difficult thing was the shame that prevented them from talking about their loss. They couldn’t grieve, because they couldn’t tell anyone what had happened.
It is almost certain that euthanasia is on occasion unofficially practised in Canada, as well. And those involved face the same fear and shame. Indeed, the line between euthanasia and palliative care is often blurry. “Joanne,” a resident physician in the l
intensive care unit of a major Canadian teaching hospital who asked that her real name not be used, explains that morphine is often used to ease the pain of dying patients. “You see them struggle in bed, and you just give them more morphine as needed to keep them comfortable,” she says. “But the more morphine you give, the more their respiratory system ceases to function, and eventually you reach a toxic dose.”
It’s not the morphine that lulls the patient directly, she adds, noting cautiously that this would be illegal. But in relaxing the body, the drug can weaken the patient’s ability to breathe in enough oxygen. The body then stops fighting a losing battle. The majority of Joanne’s patients in the intensive care unit are elderly and not destined to leave the hospital alive. Every day she confronts difficult, sometimes heartbreaking, choices about when a patient’s quality of life has diminished so much it is no longer worth intervening medically to keep that patient alive.
What bothers her most is seeing these decisions taken away from the patients themselves. They might be able to refuse certain treatments, or decide to leave the hospital to die at home. But rarely can they decide exactly how and when they want to die. “I find often that people seem to have guilty feelings about letting their loved ones go,” she writes in an email a day or two after we first talk. “They ask us to continue treating a condition, when we know it is futile. Families often need time to come to terms with the family member’s illness, and so we continue—to give them time to cope with the inevitable outcome.
“I think of my cousin who died of multiple sclerosis,” Joanne continues, “or anyone, for that matter, who is dying of an incurable illness. What they want is time to say their final goodbyes to everyone. Once that has been done, and everyone is at peace and ready to let the person go, why could we not ask an anaesthetist to simply give a nice dose of a general anaesthetic, and allow the person to calmly go into a deep sleep and pass away? That seems so much more humane to me than watching people linger on for days, sometimes weeks. Death is a natural part of life. We need to embrace it and come to terms with it.” fJl