Wednesday, January 26, 2011

Ethics in the NICU

This is a fascinating article brought to my attention by Barb Farlow, who we interviewed in For the love of Annie.

The role of a pediatric ethics committee in the newborn intensive care unit is published in the Journal of Perinatology this month and looks at ethical issues related to parent authority and best interest of the child. A couple of cases are presented, including one of an infant with Trisomy 13 who needs heart surgery. Historically, this type of surgery wouldn't be performed because Trisomy 13 is associated with early infant mortality. The author notes, however, that early death may be in part because efforts are not made to save these children.


Thank you for posting Louise. I believe that the medical history of Trisomy 13 and 18 is very important for the future of all children with genetic conditions.

When these conditions were first identified back in the 60's, large population studies revealed that the rate of survival was greater than it is now. Think about that. The 60's were the dark ages of neonatology. How could the stats have gotten worse? Would this have occurred if there was no associated disability?

Once the condition was identified and the child was labeled, there was certainty of disability and it appears that treatments were withheld. These children clearly did not benefit from the major advances in neonatology available to other children. Stories abound related to terminal sedation and infants pushed off into the corner of nurseries and left without food to "mercifully die" as soon as possible. Eventually, these early deaths, of which many could have been prevented, contributed to dismal survival statistics and these conditions were erroneously labeled as "lethal" and "incompatible with life." Like a self-fulfilling prophecy, many children died because they were expected to die and were thus denied standard care.

There is no doubt that many of these children are best treated with comfort care. But there is a vast range that exists. All children and families are unique.

In my opinion, the situation with trisomy 13 and 18 represents a potential dark side of prenatal genetics, including inappropriate labeling. Once a prenatal test exists if the majority choose termination, do options and choices for children born cease to exist? As a society, with public health care based in part on "majority values" is this acceptable?

Dr. Mercurio made an excellent statement about questioning the validity of standards and protocols:

"Good medical practice requires knowing the strength of the evidence and arguments that support any standard, and basing one's degree of flexibility with regard to the standard on the strength of its foundation. A similar point could be made with regard to ethical questions in medicine: our obligation to adhere to a standard of care should be greatly informed by the strength of the data and the ethical reasoning that support that standard."

There is much that is not known about trisomy 13 and 18. Thanks to the internet, the parents are becoming empowered. They are determined to ensure that the truth of the value and beauty of their children's lives, however long, be known and that their children should be medically treated as individuals, not as genetic labels.