The practice of infanticide and euthanasia of disabled babies is already happening around the world. In 2004 Netherlands doctors called for changes to the law to allow legal euthanasia of disabled babies.In 1997 the British Medical Journal revealed that eight percent of all infant deaths in the Netherlands are from euthanasia for fetal anomalies.
- A survey rejected the notion that a life with spina bifida isn't worth pursuing.
- Tthe quality of the information parents are often given by doctors, is very, very bad.
- Palliative care experts could suggest appropriate pain and sedation protocols to ensure that any patient is kept comfortable.
- With the advances in medical, transplant and gene therapy the future holds the possibility of cures.
- Disability rights activists are concerned that infant euthanasia sends a negative message to society that could compromise care and endanger lives.
The 2001 law made euthanasia legal only for consenting persons above the age of 12 and for children under 12 with parental consent.
Despite this two doctors at the Groningen University Medical Center in the Netherlands, Eduard Verhagen, and Pieter Sauer, writing in the New England Journal of Medicine (NEJM) in March 2005 said:
"Of the 200,000 children born in the Netherlands every year, about 1000 die during the first year of life. For approximately 600 of these infants, death is preceded by a medical decision regarding the end of life."
A father of three, Dr Eduard Verhagen admits that by technical definition, he has helped commit murder. His medical team at the Groningen Hospital in the Netherlands has ended the lives of four babies with spina bifida. He comments, "If palliative care is not an option, what do I do?"
Dr Verhagen says it's considered good practice in many parts of Europe and the United States not to initiate or to withdraw life-prolonging treatment in newborns with no chance of survival. But few doctors will admit to actively ending the life of a child.
Dr Verhagen says the sad truth is infant euthanasia is practiced around the world, and should be regulated. He's campaigning for the Dutch Government to further relax its euthanasia laws and formally adopt what his colleagues call the Groningen protocol.
The Groningen protocol
The authors group severely ill newborns into three categories: those with no chance of survival, who will die soon after birth despite optimal medical care; those with "a very poor prognosis [who] are dependent on intensive care", who may survive an initial period of intensive care but who have "an extremely poor prognosis and a poor quality of life"; and those "who experience what parents and medical experts deem to be unbearable suffering".
The Groningen protocol prompted Pierre Mertens to survey an unidentified number of spina bifida victims. He says whatever the degree of the disability, each sufferer rejected the notion that a life with spina bifida isn't worth pursuing.
Mertens, whose daughter had spina bifida, is the President of the international federation for sufferers of the disease. As a result of his survey he says:
"It is a feeling of all people with spina bifida. They say we are living now in a world where the world says the quality of life of these children, of these people, is not worth living and they are absolutely, absolutely upset by that.Even though it is the parents who usually initiate a request for euthanasia, Mertens points out that the parents make their decision on the information they get.
And do you know it is the situation where doctors are looking at the human being only from a medical side. The quality of life is not only a medical aspect. It's about art, it's about love, it's about music. This makes quality of life, not if you are in a wheelchair or not."
"So we see and we know that information, the quality of the information people get, parents get, is very, very bad. They present the disability as not valuable. They present the disability as something that's not worth living.Dr Eduard Verhagen is urging opponents to consider the tragic reality - that a small number of children are born with intolerable and incurable illnesses, and will only ever know a short life of pain and suffering. 1
And if parents receive this very negative and subjective negative information - it's not objective - then parents decide or follow the proposal of the doctor."
In response to the NEJM article, Tony Sheldon asks this question in an article in the British Medical Journal "Killing or caring?"
In burn units, the pain due to bandage changes on burns or on dermatologic lesions is usually preceded by the administration of morphine or some other parenteral (intravenous or intramuscular) analgesic, or pain medication.
Verhagenâ€™s own desire to confront the issue was sparked by a dilemma involving a newborn baby with a severe and untreatable form of a rare inherited skin disease, epidermolysis bullosa. This causes the skin to blister on contact, which can result in infection, sepsis, and death. The child was in severe pain whenever the bandages were replaced and was unlikely to live long. The parents did not want their child to suffer. The public prosecutor said, "Do what you have to do," but gave no assurance that a murder charge would not follow. Verhagen decided that, in such circumstances, he could not help the child to die. The child was discharged and died a year later from an infection.
Simon J Clark, a Consultant in Neonatal Medicine in Sheffield, England, writing in the 24 March 2005 edition of the BMJ says he is appalled by the comments of Dr Verhagen.
"I am sure that palliative care specialists would be deeply concerned that he would not offer some sort of supportive therapy. One cited example in the interview is epidermolysis bullosa, which can be a horrific condition. I am sure many palliative care experts could suggest appropriate pain and sedation protocols to ensure that any patient is kept comfortable.Carlo Bellieni, a Neonatologist at the University of Siena, Italy, also responded to the article:
Numerous conditions are currently managed with what is effectively long-term palliation, as there is no cure. These would include cystic fibrosis, hypoplastic left heart syndrome, diabetes and human immunodeficiency virus infection. Therefore, all these conditions are hopeless, being associated with a shortened lifespan and multiple hospital admissions. However, with the advances in medical, transplant and gene therapy the future holds the possibility of cures. Therefore, continuing to extend patients lives seems justified.
So what of the example of epidermolysis bullosa? If at some point an effective therapy or cure turns the most extreme forms of this into a manageable condition, how will the parents of the killed baby feel? Especially, if the therapy becomes available within the expected life expectancy of the killed child. Would then the doctor be prosecuted, or sued? Or is epidermolysis bullosa like cystic fibrosis, which traditionally led to death within the first year of life many years ago, but ongoing refinements in management have led to steadily lengthening of the life expectancy? If Dr Verhagen had been a doctor when cystic fibrosis was a hopeless disease associated with unbearable suffering I presume he would have been happy for it to remain untreated now.
Another problem I have is with the language used. The concepts of "pointless" or "hopeless" are very difficult. They depend far too heavily on the passage of time, as from a logical perspective all life is hopeless; we all seem to die eventually. Pointlessness is also an appropriate description of existence, purposefully ignoring religious interpretations of life. In the life of the multiverse what does one life matter, or indeed all life? On a human level there seems an obvious difference between a life span of 2 days and 70 years, but what of the difference between 2 days and 2 years, or even 2 years and 70 years. Therefore, selecting who should be terminated is fraught with difficultly. So much so that the Netherlands abolished the death penalty in 1870. I am not sure that, as a doctor, I have the wisdom, training, or arrogance to make a decision of this nature.
Recently Verhagen and Sauer described euthanasia as a measure against neonatal suffering (1,2) due to some causes, among which they cite a bad prognosis or the possibility of a low quality of life. But newborns donâ€™t suffer for these reasons. Suffering is the gap between what we expect from life and what we actually get (2), and newborns suffer from insulation and from endless painful procedures; but they cannot suffer from having no chance of survival or a poor prognosis as they have no self-awareness; and the struggle against pain has been won by good analgesic drugs. Moreover, in the future they may become so neurologically impaired that their self-awareness will almost be non existent, and also in this case the word suffering is a misnomer. We have good analgesic drugs and only a bad treatment of pain provokes suffering; moreover, a bad prognosis is not a reason for suffering if the subject cannot be aware of it. Neonatal euthanasia does not cure newborns' suffering. Does it cure ours?Disability rights activists are concerned that doctors too frequently make 'quality of life' decisions about people with disabilities that fail to take into account the enjoyment and satisfaction those people can get out of life.
1. Verhagen E, Sauer PJJ: The Groningen Protocol - Euthanasia in Severely Ill Newborns. N Engl J Med 2005 352:959-962
2. Sheldon T: Killing or caring? BMJ 2005;330(7491):560
They believe that allowing the euthanasia of infants with disabilities sends a negative message to society that may lead a point where resources for the care of those in need will be compromised and their lives will be endangered.
- Australia National Radio 25 May , 2005, http://www.abc.net.au/pm/content/2005/s1377030.htm