Lecture 24

Ethical Issues in the Treatment of Seriously Disabled Children

1. Difficult Issues in the Treatment of Seriously Disabled Children
1. A Clarification of Terminology. Seriously disabled does not necessarily mean critically ill, although some infants who are seriously disabled may also be critically ill, which means at risk of death without drastic medical intervention.
   
2. Some conditions which raise questions concerning treatment.
   
1. Down Syndrome. In addition to the distinctive facial features associated with Down Syndrome, this condition is associated with heart issues, obesity, and mental retardation. One consequence of the mental retardation associated with Down Syndrome is that it can often prevent persons with the condition from living independently even as adults.
   
2. Spina Bifida. Spina bifida is a condition that occurs when the spinal column which surrounds the spinal cord does not fuse properly. The implications of this vary enormously. Some cases are so mild that they are never noticed, but in severe cases spina bifida can cause paralysis from the waste down.
   
3. Anencephalic Infants. Anencephalic infants are born missing most or all of the hemispheres of the brain. In the absence of drastic medical intervention they will typically die within hours of birth. It is normal practice to put the child in the parents' arms and let them hold it until it dies. It has been suggested however that when children are born with this condition they should be kept alive until such a point that another child needs one of their organs, at which point the needed organ can be taken and given to the child who needs it. Such a course of action may save a child's life, but many consider it to be morally problematic because the anencephalic infant is being used solely as a means.
   
4. Extremely Premature Infants. The prospects of premature infants vary depending on how prematurely they are born. A child born at 22 weeks has a very low chance of surviving and an extremely low chance of surviving without severe disabilities. The prospects for infants born prematurely improve considerably if they are born after 25 weeks, although even in those cases many such infants will not survive and many of those who do will be disabled. Additionally, the treatment of infants who are born extremely prematurely is extremely expensive and some have argued that it is not the best use of medical resources to treat infants born with such prospects. Needless to say, the issue is extremely controversial.
   
3. Four Questions Raised by Seriously Disabled Children.
   
1. What course of treatment is appropriate?
   
2. Whose interests count?
   
3. How do we determine the interests of severely disabled infants?
   
4. Who should decide?
   
2. The Search For Clear Criteria of Treatment
1. The need for criteria. Many consider it desirable to have well-defined criteria that can be used when deciding when it is appropriate to withhold treatment from severely disabled children. Without such criteria, it is argued, the attitudes and prejudices of individual doctors will tend to exert an undue influence on such decisions. There are however difficulties in deciding what the criteria should be, and who has the authority to produce such criteria.
   
2. John Lorber's criteria for withholding treatment in spina bifida cases. An example of a set of criteria for deciding when it is appropriate to withhold treatment from severely disabled children was produced by the British neurologist John Lorber. The criteria are focused entirely on the medical condition of the child. One advantage of such an approach is that it increases the likelihood that the criteria will be applied with objectivity. However, such approaches have often been criticized for being too narrow and ignoring other factors which will almost certainly be relevant to the child's prospects.
   
1. Gross paralysis of the legs
2. Thoracolumbar and thoracolumbosacral lesions
3. Kyphosis or scoliosis
4. Grossly enlarged head
5. Intercerebral birth injury
6. Other gross congenital defects - e.g. cyanotic heart disease, ectopia of the bladder, and mongolism
   
3. Fletcher's Criteria. Joseph Fletcher proposed a set of criteria which should be taken into account with regard to neo-natal euthanasia. His criteria are considerably broader than Lorber's, but they are also vaguer.
   
1. The extent to which parents are (or can be) counseled.
2. Parents' attitudes toward the defects.
3. Severity of the defects
4. Economic resources of the family
5. Welfare of any other children involved, as well as the parents' ability to cope
   

Related Resources

Barron Lerner, "Playing God With Birth Defects in the Nursery," New York Times June 14, 2005.