WHEN Frank and Anita’s daughter Chanou was born with an extremely rare, incurable illness in August 2000, they knew that her life would be short and battled against the odds to make it happy. They struggled around the clock against their baby’s pain. “We tried all sorts of things,” said Anita, a 37-year-old local government worker. “She cried all the time. Every time I touched her it hurt.”Chanou was suffering from a metabolic disorder that had resulted in abnormal bone development. Doctors gave her no more than 30 months to live. “We felt terrible watching her suffer,” said Anita at their home near Amsterdam. “We felt we were letting her down.”
Frank and Anita began to believe that their daughter would be better off dead. “She kept throwing up milk that was fed through a tube in her nose,” said Anita. “She seemed to be saying, ‘Mummy, I don’t want to live any more. Let me go’.”
Eventually, doctors agreed to help the baby die at seven months. The feeding was stopped. Chanou was given morphine. “We were with her at that last moment,” said Anita. “She was exhausted. She took a very deep last breath. It was so peaceful. It made me feel at peace inside to know that she wasn’t suffering any more.”
Even so, they felt that the suffering had gone on too long. Child euthanasia is illegal in Holland and doctors were afraid of being prosecuted. “It was a long road to find the humane solution that we reluctantly decided we wanted,” said Frank, a bank worker.
Each year in Holland at least 15 seriously ill babies, most of them with severe spina bifida or chromosomal abnormalities, are helped to die by doctors acting with the parents’ consent. But only a fraction of those cases are reported to the authorities because of the doctors’ fears of being charged with murder.
Things are about to change, however, making it much easier for parents and doctors to end the suffering of an infant.
A committee set up to regulate the practice will begin operating in the next few weeks, effectively making Holland, where adult euthanasia is legal, the first country in the world to allow “baby euthanasia” as well.
The development has angered opponents of euthanasia who warn of a “slippery slope” leading to abuses by doctors and parents, who will be making decisions for individuals incapable of expressing a will.
Others welcome more openness about a practice that, according to doctors, goes on secretly anyway — even in Britain — regardless of the law. “It is a giant step forward and we are very happy about it,” said Eduard Verhagen, clinical director of paediatrics at the University Medical Centre in Groningen, northern Holland.
Anti-euthanasia campaigners have been addressing hate mail to “Dr Death”, as they call him, ever since he admitted having personally overseen four “assisted neo-natal terminations”. He then began drawing up guidelines for doctors carrying out euthanasia on babies.
It forced the government to confront the issue and Verhagen’s so-called “Groningen protocol” has been adopted as the standard to be upheld by the regulatory committee.
It emphasises that life can be ended only in cases involving “unbearable suffering”, with parental consent and after consultation with other physicians.
“If a child is untreatably ill,” Verhagen explained, “there can be horrendous suffering that makes the last few days or weeks of this child’s life unbearable. Now the question is: are you going to leave the child like that or are you going to prevent that suffering?” He went on: “Does the child have to sit it out until the end? We think that the answer is no. There can be circumstances where, under very strict conditions, if all the requirements are fulfilled, active ending of life can be an option — but only in cases of untreatable disease and unbearable suffering.”
Questions
1- do you believe that neonatal euthanasia performed under the strict conditions described by Verhagen is morally permissible? why? why not?
2- should it be legalized?
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