The Rights of Infants With Down's Syndrome

George F. SMITH, MD ; Eugene DIAMOND, MD ; Jérôme LEJEUNE, M D ; Victor ROSENBLUM, PhD ; Anthony AMAROSE, PHD ; Crajg ANDERSON, MD ; Ira ROSENTHAL, MD ; Norman FOST, MD ; Donna SPIKER, PHD ; Maria DAVIES, ACSW.

The Journal of the American Medical Association, Jan 13. 1984 Vol 251.No.2.


Sommaire

There are infants-some with Down's syndrome-who are born dying, in the sense that they are afflicted with an illness for which there is no definitive life-saving treatment, and they will inevitably die as neonates. The question is how they will live while dying. Conflicts may arise in these cases over the physician's obligation toward such patients. The physician clearly must provide comfort and relief of pain, but such arduous interventions as surgery and resuscitative therapy, which would merely prolong or aggravate the dying process, need not be undertaken. There are other infants who can clearly benefit from technically complex and costly interventions. Distinguishing the first group from the second is often difficult, and risk-benefit equations have to be weighed. In the case of infants with Down's syndrome, intelligent decisions can only be made by an attending physician knowledgeable about Down's syndrome and by parents who are well instructed about the condition.

In some instances, the decision-making process may be further complicated by the introduction of another element-the long-term prognosis for quality of life as limited by subnormal intelligence. For example, some infants with Down's syndrome born with a defect correctable by a surgical procedure with acceptable risks are sometimes denied the benefit of the procedure. Such an example is the infant with Down's syndrome who is denied surgery for an operable congenital obstruction of the upper intestinal tract. A decision by parents to withhold consent for surgery is inevitably going to be fatal.

There is a growing consensus in our society that life. even with handicaps, is preferable to death. This is attested to by the great majority of older handicapped persons who are capable of expressing their wishes. The child with Down's syndrome can contribute to society and benefit from its opportunities. Most persons with Down's syndrome who survive infancy seem to lead reasonably happy lives, free of pain, except for that associated with some related physical problem. For this reason, the care and treatment and all other rights that belong to normal infants should be the standard for the person with Down's syndrome. The child with Down's syndrome should be treated medically in exactly the same way as any other child; imperfection does not cancel a person's rights.

The primary obligation of the attending physician, in such instances, is to ensure the best interests of the child. Parents of handicapped children have an important and continuing role to play in deciding on appropriate therapy. The physician's obligation to their needs and interests, however, is secondary to those of his infant patients. To discern the best interests of the child, the physician should consider the parents' wishes in concert with his own medical judgment on indicated treatment. Usually, the decision of the parents will be congruent with that of the attending physician and indicated surgical consent will be granted. When there is a conflict between the physician and the parents, some process for resolution may be required, such as consultation with an expert colleague or review by an institutional committee. As a last resort, the physician may be required to submit the case to a court to obtain consent for a life-saving procedure. The decision of parents, although loving and well intentioned, should not be binding on the medical care team. Recent experience indicates that total reliance on the desires of even well-motivated parents does not necessarily serve the best interests of the handicapped newborn.

The newborn patient with Down's syndrome is a member of society and is entitled to its protection. It is important to emphasize that the custody of the child may have to be separated from its need for care. When parents are incapable, for any reason, of accepting custody of their child after care has been provided, it may be necessary for alternative provisions to be made for adoption or other custody. It is incumbent on society at large to accept its responsibility in guaranteeing the rights of the handicapped infant, including the assumption of financial responsibility for the costs of medical care when necessary.