Community Columns

Edwards exploits case of a girl denied liver transplant

With the next 10 months being filled with political debates, one issue that will continue to be battered around is health care.

As a provider (as a physician) and a patient, I have an interest at many levels in these debates. My plea upfront is to realize that there is no easy cure and that, often, politicians will take events out of context — especially ones with high emotional overlay.

The most current example is the unfortunate case of Nataline Sarkisyan, a New Hampshire girl who suffered with leukemia for three years, had a bone marrow transplant and then developed a complication of liver failure. At best, most doctors would predict that she had only a 65 percent chance of living six more months, even with a liver transplant. The insurance company is being blamed by Democratic candidate John Edwards for her death because of its initial refusal not to authorize the transplant.

The most agonizing thing to me is that the family has been thrust into the political spotlight and is being used as a pawn in the very complex and difficult subject of health care reform.

There are many elements of our health care system that need reform.

Should everyone have easy access to care? Yes, absolutely. Why was I denied coverage by Blue Shield a few years ago when the only problem was that one test was one point above a normal range for liver function and subsequently came back to normal?

Access to health care by all, regardless of pre-existing conditions, and the ability to transfer to another insurance provider if a person changes jobs are critical.

However, for those with health care coverage, Nataline’s case raises several ethical questions. The first, for physicians, is do no harm. Doctors are trained to cure, but also to relieve suffering and avoid harm by balancing the risks and benefits of any intervention. This teenage girl had already been through a bone- marrow transplant; would putting her through a major transplant operation to gain, maybe, six months, really be the right thing? Even if a liver for transplant had been available, would it have relieved her and her family’s suffering?

Quality of life versus quantity is something those of us in palliative care deal with all the time. Full disclosure and honest answers are what families and patients want, no matter how bad the news.

In this case, the family is being thrust into the media and political frenzy and being encouraged to magnify their anger at their daughter’s death for Edwards’ political gain.

I sincerely hope this family can come to peace with their loss, and that we will have a health care system that will be able to focus more attention on the psychosocial support of patients and families facing life-threatening situations.

In the meantime, improvement in health care delivery and availability will not occur unless we carefully and thoughtfully decide how we will spend our limited resources. Emotionally charged political rhetoric will bear only bitter fruit.

LeFevre is a physician and former visiting editor. E-mail him at