Inevitably when practicing medicine, one comes across ethical dilemmas that may or may not serve to frustrate and stir up a little angst about doing the 'right thing'. I've had 2 patients in the last couple of weeks that have made me revisit the medical ethics teachings of my school years if only to remind me that I am not alone in this conundrum. I'll share their stories with you...
YA is a full term infant girl born to parents who are first cousins. She did not breathe after she was born and has yet to take a breath on her own as she remains on a ventilator. She can not see, hear, or move freely as her arms and legs are tightly contracted. Should her breathing tube come out, an emergent call would be placed to anesthesia for assistance as her airway anatomy is such that intubating her without flouroscopic guidance is next to impossible. Her chromosomes are normal and basic lab tests are unremarkable. For the past 3 weeks, we have been her lungs, eyes, ears, and advocates. Our last diagnostic effort was a muscle biopsy, which I am sure caused her considerable pain. Yet her parents are not ready to let her go.
JH is a former 33 week premature infant born to 18 year old parents. He has lobar holoprosencephaly and ventriculomegaly, essentially a small rim of brain and a head filled with fluid. He has a cleft lip and palate so he can't eat. He has no eyes and can't see. His brain is not developed enough to allow him to hear. No surgeon will attempt any procedure because they rightfully will not cause pain in the face of futility. His head is getting bigger by the day and he is starting to have short periods of apnea. We've touched on the subject of a DNR order with the parents but they firmly believe that "he will pull through". So we continue the tube feeds and basic care and hope that he does not put us in a position to have to resuscitate him while we wait for his parents to let him go.
Ethics in the NICU are difficult mainly because neonates have no way of representing themselves (no way for us to allow them autonomy) and proxy decision making is unavoidable. Thus, the decision making lies with the parents with help from the physicians. Ideally, these decisions would be made with the baby's best interests in mind, both current interests and potential interests for development. Occasionally, we as physicians must wrestle with the pressure from parents to do what is the wrong thing for the baby, whether that be overtreatment or undertreatment. We are asked to evaluate the baby's 'quality of life' but what exactly is the state where that quality is no longer worth achieving? A child's parents may have a very different answer to that question than the physician caring for him or her. There is a principle called the principle of double effect. This refers to an action that leads inseparably to both positive effects and negative effects. Relieving pain but hastening death for example. Or, in the examples above, relieving the suffering of these infants will indelibly mark their parents' lives with grief and loss. Such is the burden of the physician caring for critically ill infants.
Each time I walk into the unit and I see those babies still lying in their cribs I feel a twinge of sadness that they are still with us. And then I feel more than a twinge of guilt for that very same reason. I don't know how to ensure that we are doing the 'right thing' for every baby that crosses our path. But, I am so grateful that I still have the motivation to try. Thankfully, there are professional guidelines for us in our neverending quest for compassionate care. If you are so inclined, check out the AAP's policy statement on Noninitiaion or Withdrawal of Intensive Care for High-Risk Newborns in the February 2007 issue of Pediatrics.
No comments:
Post a Comment