Cultural, Legal, and Ethical Issues for the Health Sciences
Keyrsten Knight
HS 2050
Final Essay
Ethics in Neonatology:
A Newborn's Rights to Resuscitation and / or Life Support
Suzie and Ryan were approaching their third anniversary and actively trying for a baby. Suzie, a woman in her late 20's, worked as a waitress at a small diner and Ryan, early 30's, worked full-time as a legal assistant at a law firm. They were not wealthy be any means but lived comfortably in a reasonably sized, two bedroom town-home. After about eight months of trying to conceive, the couple was ecstatic to learn that they were expecting. Suzie's pregnancy was her top priority and she worked hard to make sure that her baby received all of the nutrients it would need. All seemed well at first but at Suzie's 24-week ultrasound her obstetrician, Dr. Harlem, saw signs that were consistent with spina bifida. As ultrasounds can be misleading at times, Dr. Harlem ordered blood work that included a maternal serum alpha-fetoprotein (MSAFP) test which is used to check for abnormally high levels of alpha-fetoprotein (AFP) – a protein produced by the baby that, if detected in large amounts, would suggest a neural tube defect such as spine bifida. Several days later, Suzie received a phone call from Dr. Harlem confirming her fear that the MSAFP test had shown high levels of AFP.
With an ultrasound showing signs of malformation and now a positive MSAFP test, Dr. Harlem felt that the likelihood of a spina bifida diagnosis was high but offered amniocentesis for further confirmation. Suzie and Ryan were devastated by the news they had received and spent a great deal of time exploring their options. They were tortured by the thought of giving up their unborn baby but knew that they were in no financial position to care for a disabled child. The couple decided to move forward with the amniocentesis but agreed that if it in fact confirmed the spina bifida diagnosis, they would terminate the pregnancy. Dr. Harlem discussed the risks of the amniocentesis procedure with Suzie and Ryan and then a needle was advanced into the amniotic sac. A sample of fluid was taken and sent off to be analyzed for abnormally high levels of AFP.
The procedure was performed on a Tuesday and Dr. Harlem said that the results would be in by that Friday. Before the results were available, Suzie was taken to the emergency room where she was treated for a severe infection, a complication of the amniocentesis procedure. When Suzie's condition progressed, Dr. Harlem highly recommended emergency delivery. Prior to being induced, Suzie and Ryan had lengthy discussions with both Dr. Harlem as well as the hospital's neonatologist, Dr. Smith, about what they should expect during and after the birth of their child. Knowing the high probability that their child possessed a significant disability, Suzie and Ryan made it clear to both physicians that they did not want resuscitation or any life-support measures to be performed on the infant. Dr. Harlem and Dr. Smith agreed that they would only provide care necessary to keep the infant comfortable for the remainder of its life.
A few hours later, Suzie gave birth to a baby boy. As the couple had requested, the infant was instantly taken out of their room and into the NICU where he was thoroughly evaluated by Dr. Smith and his colleagues. To their surprise, the child was seemingly healthy. Although the spina bifida diagnosis could not be completely ruled out without imaging and further testing, there were no obvious deformities and the child was notably strong which would be extremely unusual for an infant with a significant neural tube defect. After only a few minutes of monitoring the child, the physicians began to reconsider their decision to not follow resuscitation protocol. Knowing that the child would die within minutes without respiratory support, Dr. Smith immediately withdrew the agreement he had made with the parents and ordered hospital staff to treat the struggling infant. When Dr. Smith informed Suzie and Ryan of his decision to resuscitate the child without their consent, the couple was enraged. They argued that the decision was not his to make and that, because they are the parents, he is obligated to respect their wishes.
Now, from a bioethical perspective, the conflict in this issue is obvious. On one side, we have a mother and father of a newborn who they fully expected to possess a significant disability. As parents, this couple expects that the decisions they make and the plan they have established regarding their child will be respected and followed by the physicians and hospital staff. On the other side, we have a highly trained physician or physicians who have dedicated their lives to saving the lives of others. Regardless of whether or not a disability is present, these physicians are faced with a very difficult decision: to either respect the wishes of the parents and violate the rights of the infant by allow him to die or defy the wishes of the parents and save the life of the child.
''Decisions about whether to provide intensive care to periviable infants remain some of the most difficult in neonatology. These decisions do not occur in a vacuum; rather they are complex interactions among parental concerns and rights; societal norms, which may be regional rather than national; and the neonatologist's opinions about viability and medical futility.'' (Eric C. Eichenwald, MD)
Of course Suzie and Ryan have rights that should be taken into consideration and protected. But whose duty is it to protect the rights of the newborn? In this situation, someone's rights will likely be violated. But whose? As Suzie's obstetrician, Dr. Harlem holds the responsibility to respect the rights of his patient. Similarly, as the acting neonatologist, Dr. Smith is obligated to make sure that the rights of his patient, the newborn infant, are not violated.
When reviewing a case like this one from an ethical and moral perspective, it is important to look at it from all angles. It is true, in this case, that both physicians, Dr. Harlem and Dr. Smith, had initially agreed to respect Suzie and Ryan's wishes that no resuscitation or life support measures would be performed on the infant. At first glance, it would seem unethical for either physician to defy this agreement and save the life of the child. However, it is also important to consider that the agreement to withhold resuscitation was made solely based on an assumed and unconfirmed diagnosis of spina bifida. In most cases, an infant with even a moderate degree of spina bifida would be expected to possess significant physical and mental disabilities that would likely result in a very poor quality of life. Also, caring for a disabled child place a significant burden on the parents, both mentally and financially. For these reasons alone, Suzie and Ryan's decision is relatively understandable and justifiable. However, if a postnatal examination revealed that the child's health was much better than expected, it seems appropriate and almost necessary to reconsider the decision to withhold resuscitation and consider other options. A physician who allows a seemingly healthy infant to die based on a decision and agreement that was made based on an anticipated (again, not confirmed) disability would likely face significant ethical, moral, and possibly even legal criticism.
There are those who would argue that a physician does not have a duty, or even a right, to make a decision regarding the health and well-being of an infant without the consent of the parents. In some cases this might be true. For example, most people would agree that a physician does not have the right to subject a completely healthy infant to any type of treatment or therapy that could harm the child without the consent of the parents. However, exceptions must be made in circumstances where the child's life would be preserved if certain measures were taken under the direction of a physician without the consent of the parents.
In conclusion, parents as well as their newborns are naturally entitled to a list of basic human rights. As healthcare providers, physicians have a duty to protect the rights of their patients. When reviewing a case like the one discussed from a medical perspective, it is important to understand that a very important step in becoming a physician is to take the Hippocratic Oath. One of the promises within the Hippocratic Oath is to “first, do no harm”. Medical treatment is different for every patient and physicians must always take into consideration the wishes and requests of the patient when developing a treatment plan. However, if a physician is forced to make a difficult decision such as whether or not to follow resuscitation protocol for an infant against the request of the parents, he/she must always choose the option that will do the least amount of harm.
