Although I thought about making a post about the refusal of the corrupt earmark system to just die already, I think something more in my scope of interest is the current ethics debate regarding a severely mentally handicapped child. Specifically, her parents have opted to surgically stunt their child’s physical development to prevent puberty (hormones, menstruation, growth, etc) and to keep her weight at a level that they can manage. She is currently 9 years old, and has the mental capacity of a 3 month baby–she can only lie on her back and kick her legs/arms around. She relies on her parents and grandparents for every aspect of her care, from feeding and bathing, to even removing an itchy piece of lint from her eye. There is no prognosis for ever improving (she has static encephalopathy), however her lifespan will be that of anyone else, meaning that someone must care for her every need for the rest of her life.
The surgery entailed a hysterectomy and breast bud removal, as well as estrogen supplements to arrest growth and development. She was in the hospital just 4 days, and was completely healed within the span of a few weeks. Her parents say that this surgery will ultimately drastically improve their daughter’s quality of life, who they can now care for until the end of her (or their) days and will spare her the turmoil and pain of going through menstrual cramps and hormone fluctuations which she would not be able to comprehend. So, she will be forever the size of a 9-year-old, about 4’9 and 65 pounds. Critics are decrying the surgery, saying that her parents have essentially denied her the right to grow up and become an adult, and that the surgery will cause unnecessary pain to the girl just to suit the parents’ convenience. Who’s right on this issue?
(More below the fold…..)
First, a bit about the girl’s disease, as many of the detractors are from the “well, what if she gets better?” or “what if medicine advances to cure her?” camps. Static encephalopathy represents a fundamental problem with how a child’s brain developed in the womb, in that it has formed abnormally and therefore is not capable of “working” like a normal brain. This abnormal development means that the child is born with a permanently mal-formed brain. This is an condition that medical therapy as we know it now will never be able to correct in any of our lifetimes. The reason for this is that diseases can be corrected, as long as some semblance of the normal structure remains intact. For this little girl, her brain structures either aren’t there or are so abnormal as to be non-functional, which is a situation that even the most optimistic of stem cell biologists could never hope to correct.
Reading the new stories about the family’s predicament, it is obvious that her parents love her very much and are dedicated to making what life she is capable of experiencing the best that they can manage. It is admirable that they have taken this point of view, and to me it seems that the therapy (while causing the short-term discomfort of surgery) will help provide her a lifetime of continued high-quality care. I believe that they are doing what they can to include her in their lives and keep her happy, without impacting her life in a seriously negative way. Will a child in a permanent vegetative state miss the breasts she never knew existed or the children she wouldn’t be able to care for?
The decision was also approved by the hospital’s ethics committee, which included doctors as well as lay people, before the surgery could go forward.
“In reality, Ashley being smaller means that she will be moved more, that she will be held more, that she will be bathed more. All of these things are inherently good for Ashley herself,” Dr. Daniel Gunther, the pediatric endocrinologist who oversaw her treatment, said in an interview. The hospital’s ethics committee approved the treatment.
“I understand how people have an initial visceral reaction to this that is negative,” Dr. Gunther conceded. “But if people step back and really start thinking about what is best for this child and what is in her best interests, I think many people will come to the conclusion that this is a relatively low-risk procedure with a great deal of benefit for the child.”
To me it seems less about what is happening to this little girl, and more about the largely grey area of what a nearly brain-dead person’s rights are. What happens when the onus to care for such a person, which will be draining in every imaginable way from financial to emotional to physical, falls upon family members? Hopefully they will love and care for the person as best they can, but shouldn’t the caretaker’s needs have some consideration as long as it does not negatively impact the brain-dead patient? A lot is being required of them, perhaps they should not be dismissed offhandedly.
The girl’s doctor quoted Issac Asimov, “Never let your sense of morals get in the way of doing what’s right.” This is a tricky issue, but in this case I believe the parents did the right thing. However, I would not agree that such a procedure be done on a person who had full mental faculties (unless they consented), because in that case the deprivation of an adulthood would impact them negatively. It is difficult to say when such a cut-off might occur (as in, what really qualifies as “brain-dead”?). But I suppose that it is best left up to the parents, doctors, and ethics committees to decide, as it stands.
What do you think?