Sorry folks but for the Spina Bifida community this is old news. The most serious instance of disability discrimination appears under the Groningen Protocol developed in the Netherlands to regulate and justify hastening the death of newborns with severe impairments. Doctors are directed to discriminate their counseling based on a babies disability. Parents are counselled that their babies' impairments will result in a life not worth living and that they should die. This is often not evidence based but the result of implicit stereotyping about the lives of people with disabilities. This practice is has resulted in the death of more than 20 Dutch babies born with Spina Bifida. The Groningen Protocol has been accepted as a standard of practice by the Dutch Paediatrics Association. But it is not only Dutch children with Spina Bifida who are at risk for dying through application of the Protocol but many others, including premature babies, infants with Down Syndrome and other infants born with significant problems.
The Protocol holds that it is medically and legally proper to withhold, withdraw treatment or medically terminate the life of a baby, when two out of the following seven conditions are met
ofunctional disability,
opain, discomfort,
opoor prognosis, and hopelessness,
olack of self-sufficiency,
oinability to communicate,
ohospital dependency and
olong life expectancy (with a disability)
The Protocol is applied to
obabies with no chance of survival.
obabies that have a very poor prognosis and are dependent on intensive care.
obabies with a hopeless prognosis who experience what parents and medical experts deem to be unbearable suffering. For example, a child with the most serious form of Spina Bifida who is judged, even after many operations to have an extremely poor quality of life. A baby like my son.
The Protocol states that people with severe disabilities have a poor quality of life - often so poor that others are entitled to decide that they should die. A statement like '...a child with the most serious form of Spina Bifida will have an extremely poor quality of life....' which assigns to all persons in a group an attribute that may be true of some members is a stereotype and reflects a discriminatory attitude towards people with disabilities. Active life-ending measures are only recommended because of disability. Parents of a 'normal' baby that may need temporary help to breathe would be counselled to approve ventilation, but the parents of a baby with a severe disability would not.
There is no universal consensus on the definition of what constitutes quality of life, particularly for children. Adults with Spina Bifida report that although they suffer from pain and discomfort related to their condition, they do not experience unbearable and hopeless suffering. In a study of Spina Bifida patients cited by the Health Council of the Netherlands, there was a large discrepancy between the negative medical prognosis made during the patients' infancy and the degree of disability described by their parents after a four to eighteen year period in 50% of all cases. Quality of life is assessed by persons who are living with a disability or who are intimately involved in the life of a person with a disability. One study concluded that Spina Bifida is not a very important determinant of life satisfaction. Parents play a key role in protecting their children's rights and their best interests remain the province of parents or when they fail, to the courts. Health professionals have a duty to avoid discrimination and maximize the life possibilities of any child with a disability. It is not appropriate to give health professionals the power to decide that a disability is so severe that the 'best interests' of the child is to die.
Practices, like the Groningen Protocol, that counsel parents that it is best for babies to die because they have severe disabilities is in direct contravention of the standards required under the UNCRPD , and violates international human rights conventions that set the standards for legal and humane medical treatment recommendations for all people. The International Federation for Spina Bifida and Hydrocephalus (IF) fiercely opposes the Groningen Protocol.
So it would seem that we have ethicists and doctors on the same side but if there is any outrage to be displayed it should be directed at the fact that we only get outraged when this is suggested that this is an acceptable course of action for an otherwise 'normal' baby (whatever normal is) but the same level of outrage is not displayed when it happens to a baby born with disabilities.
So why do I care ? If my little boy had been born in the Netherlands - he would have been a target.
