Dr. Norwood.

http://www.phillymag.com/home/articles/did_dr_norwood_go_too_far_part_one/

http://www.phillymag.com/home/articles/did_dr_norwood_go_too_far_part_two/

Above are links to a two part article on Dr. William Norwood. Although he is an incredibly brilliant surgery and has invented three cardiac surgeries that have saved thousands of children with congenital heart defects, he is being accused of failing to obtain a complete, informed consent from parents of his patients. After reading these articles, you will understand why the waters are muddied and a definite answer cannot be reached. I must also state that I am one of the children that Dr. Norwood saved by operating on my heart when I was 4. Although I did not receive one of the procedures he invented and I regret any children who might have been harmed or died while he was perfecting his techniques, I cannot caste a stone at this man as I would not be here without his exceptional brilliance and skilled surgical hand.

However, these articles do raise several ethical points. I can tell you from personal experience that when a doctor tells you there is something wrong with your heart, you are thereafter unable to comprehend what s/he is talking about, even for someone with some degree of medical understanding. I cannot imagine how difficult it would be for a parent to hear about their child’s heart defect, in addition to not having a basic understanding of the medical jargon. Though the parent may sign a consent form, is that really informed consent? What can a doctor do to help a non-medically educated parent understand complex terminology, especially when the parent is extremely emotional distressed? And while this may not necessarily be the circumstances Dr. Norwood is accused of, when an unexpected complication arises during surgery, should the doctor stop the surgery to speak to the parents to make sure they understand the implications of this complication and obtain consent to use further and perhaps more extreme measures to save the child’s life? In the situation where a mother claims she did not know the stent used in her daughter was still experimental, would that have really changed the mother’s decision? Would she have opted not to have a surgery that her daughter needed in order to live? Would she have chose to go against the doctor’s recommendation of a new, improved, better, but still experimental stent? I completely agree that the issue is that the mother did not have an opportunity to make the choices that were hers to make (if that did occur), but I also believe Dr. Norwood was doing what he thought was best for the child. Also remember, that without Dr. Norwood, this child would not have lived as long as she did. Without the procedure he invented, she would have died within days after birth.

Another issue brought to light by Dr. Norwood’s situation is the question of experimentation. While many codes exist to protect and regulate experimentation, the fact remains that medicine cannot advance without experimenting with new procedures. This article lists tons of surgeons who went against laws and hospital policies to perform procedures that were unethical and illegal. However, these “illegal procedures” are now considered routine procedure and lifesaving. I believe patients have rights, including the right to know exactly what a physician is doing to them and the right to refuse treatment. Perhaps Dr. Norwood took the idea of utilitarianism ethics to the extreme in that experimenting on a few kids will certainly benefit the greater good. He had to experiment in some form to perfect three surgeries that save the lives of thousands of kids (each year since the 1980s) with a congenital defect who otherwise would die within a few days of birth.

Where do we set the boundaries of punishment for pushing or overstepping ethical boundaries? Dr. Norwood’s intentions are good – he is trying to make these kids better. He is not a surgeon who is harming his patients by rushing through a surgery to make his golf game as in the case of a Hawaiian surgeon who replaced FDA-approved titanium spinal rods that hadn’t arrived yet with something he found in the operating room that had the same dimensions (patient is now paralyzed).