The Baby-Face of Bioethics

“I don’t know.”

This was the advice Dr. Mark Mercurio, director of the Yale Pediatric Ethics program, gave to a room full of Yale University bioethics students in a lecture on how neonatologists should find their way through ethical quandaries. It is not that he is unqualified. Quite the contrary.

Dr. Mercurio’s extensive training and experience includes degrees from Princeton, Columbia, and Brown University and residence experience in pediatrics in New Haven, Connecticut— America’s first city to have a newborn intensive care unit. His fatherly wisdom and good humor have clearly aided the Yale Pediatric Ethics Program (where he serves as Director) and the Yale-New Haven Children’s Hospital Ethics Committee (which he chairs).

Dr. Mercurio spoke to the summer interns at Yale University’s Interdisciplinary Center for Bioethics on the bioethical quandaries facing neonatologists forced to make life and death decisions for non-autonomous, non-cognitive human beings. Their most frequent patients are premature newborns (often with congenital anomalies or genetic disorders) with low survival chances. But the newborns can’t give informed consent for either life-saving techniques or to be taken off the ventilator. While considering medical knowledge, ethical principles and the individual facts of each case, neonatologists must listen to or refuse the parents’ judgment in light of the patient’s best interest, and affect life and death accordingly.

Consider some of the ethical issues involved: for example, the neonatologist must tell a new mother that her 23 week old, premature infant has less than a 25% chance of survival, and that she and the father will have to decide whether “it’s worth it” to try all life-saving techniques, but that even survival most likely means a life of severe impairment. Occasionally, the parents can’t decide and leave the decision up to the doctor, or make a request the doctor cannot morally honor. What if the family’s best interest conflicts with the patient’s best interest? What if the baby will be in a vegetative state and the parents are unable to provide adequate care? Is it legitimate to consider society’s best interest? What of allocation of medical resources? The neonatologist must weigh all of these factors and more, and yet act with immediacy.

The expert’s best advice to Yale’s budding bioethicists as to how to decide these life and death matters?

“I don’t know.”

This same refrain is echoed time and time again in our discussions here at the Bioethics Center. As ethicists sitting in a room at a university, “I don’t know” is the only right answer. We don’t know what the baby’s future will be; we can only conjecture from insufficient data and probabilities. We don’t know if the parents can afford medical care for the child, whether the disease will onset in its most crippling form or whether the child will live a fairly comfortable life. We don’t know if the baby wants to live or die; we argue about whether he or she is even a person yet. We don’t know how to resolve conflicts of interest between the family’s best interest and the patient’s best interest, or where the family’s best interest is the patient’s best interest. To give the wisest, safest, and humblest answer, we must always say, “I don’t know.”

But a neonatologist does not have such a privilege; a decision must be made. Dr. Mercurio referenced a continuum of benefits and burdens as an equation to be constantly balanced when looking between the right to life and the right to mercy (dying with dignity, in essence). In my mind I had the vision of a constantly tipping scale between pleasures and pains, where at any moment the needle could slip away from degrees of “worth it” and point to “no longer worth it.”

Is the decision to stay alive and not seek or allow or cease to prevent death only framed by that endless equation? When probabilities and conjectures are the only data available, making such decisions is simply not a matter of science or perfect rationality. Human judgment, faith, and emotion inevitably creep in, or even overshadow what vestiges of reason remain. Even reason is in a fallen state and cannot infallibly guide us to right decisions in cases replete with unknown variables. The presence of emotion guarantees a more human decision, at the very least. But the unqualifiedly right decision?

My fellow interns, the staff, the lecturers, and the seminar leaders at the Center come from all over the world. They have various areas of expertise, are deep thinkers, honest in their pursuit of truth, and earnest in determining ethical fairness. But when “I don’t know” is the fruit of their well-reasoned philosophies, I begin to question redemption’s place in reason. If reason itself is fallen, it is no surprise that “I don’t know” floats around the university like a disembodied ghost.

Yet there must be a place for the Spirit of truth to heal our human judgment—to give insight into human purposes beyond maximizing pleasure and minimizing pain (often the only guidelines of medical ethics), to help us discern ethical principles, to give us confidence that we are making better-than-humanly-possible decisions in the face of the unknown. My bioethical instincts say “I don’t know” about that role, but I’m fairly certain I do know that just such a Spirit is often missing. My obligation then is to pursue that Spirit Himself, and tease out the intricacies and robust impact of His work in our bioethical reasoning.

Calling All Tripe:
A Response to Elizabeth Whelan

In a recent TCS article on the Terri Schiavo case, Elizabeth Whelan, president of The American Council on Science and Health, says we should call “call tripe when tripe is served.” I wholeheartedly agree which is why I believe we should start by calling Ms. Whelan on the tripe — and the liberal ladling of ad hominem — that she has served. I realize that the media often calls upon Ms. Wheldan precisely because she is known for giving colorful misrepresentations of her ideological enemies. But such nonsense directed toward the respected neurologist Dr. William P. Cheshire Jr. should not go unchallenged.
Ms. Whelan begins by claiming to know the “harsh facts” of Terri Schiavo’s brain state, yet appears to be confused about the difference between a “permanent vegetative state” and a persistent vegetative state in which a patient may be minimally conscious. As Dr. Cheshire correctly notes in his affidavit, actions taken against a minimally conscious patient may be “unintentionally neglectful.” Because a misdiagnosis of her condition could lead to cruel and unethical treatment, it is imperative to make as accurate an estimation of her condition as is possible. The record shows, however, that some of the most basic neurological tests have not been used in making the diagnosis.

Continue reading Calling All Tripe:
A Response to Elizabeth Whelan

Still in the World:
A Pro-Life View of Death and Dying

I was in Okinawa when I got the call. “Mom’s not expected to live much longer,” my younger brother said. “You might want to come home.” I had just arrived on the island a few days before and had to fly back to mainland Japan. As I waited another three days for the next plane back to the States and began to wonder if I’d make it home in time.
Two years earlier, when my mother was diagnosed with breast cancer, my brother built a room onto his house so that she could live with him and his family. The time had been difficult but the past few months had been especially hard on them. On the ride home it was made clear that the prodigal son would be expected to take his turn shouldering the burden.
The cancer had taken a toll. I was shocked by seeing my mother so gaunt, bald, and weak. I’d sit on her bed at night and prepare her medicines, swabbing the shunt in her chest with rubbing alcohol. It seemed absurd to worry about an infection when the tumors were destroying her from within. But I didn’t say anything and performed the task as if it were making a difference. She often drift in and out of sleep as I fumbled clumsily with the syringe.
I’d load the needle with morphine and feel a strange impulse, similar to the urge to jump that overcomes you when you stand on the edge of a bridge. All it would take is an extra dose, I thought. My family would wake in the morning to a sense of guilty relief and damned up grief. No one would know. There’d be no questions. There’d be no autopsy. The waiting and the pain and the dying would be over.
But the longer I sat watching her labored breathing the more I realized how precious was life, even in the midst of such suffering. I carefully measured out the correct amount, sometimes slightly less just to be safe. I stayed for three weeks, giving the shots, attempting to make her comfortable. We made it through Thanksgiving before it became obvious that she wasn’t finished living. I had to return to Japan. Mom held on for several more weeks before passing away peacefully in her sleep.

Continue reading Still in the World:
A Pro-Life View of Death and Dying

Lebensunwerten Lebens:
When Is Life Not Worth Living?

Over the past few weeks, the events related to Terri Schiavo have generated thousands of posts throughout the blogosphere. Unfortunately, many of the discussions — on both sides of the issue — reveal a complete ignorance about the actual facts in the case. As happens all too often in the blogosphere, people are ready to form an opinion without bothering to understand the essential elements in a story.
But while these ill-informed blogs provide little insight into this particular incident, they have performed the invaluable function of shedding light on the practical ethics of the average blogger. Many bloggers, for instance, appear to believe that human worth is based on functional criteria ‘

Sympathectomy of the Soul:
Dutch Euthanasia and

After a three-year investigation, the Royal Dutch Medical Association has concluded that Dutch doctors ought to be able to kill patients who are not ill but who are judged to be “suffering through living.” The report, which contradicts a Dutch Supreme Court ruling that euthanasia should be allowed only if a patient has a “classifiable physical or mental condition”, argues that no reason can be given to exclude situations of such suffering from a doctor ‘

Sympathectomy of the Soul:
Dutch Euthanasia and

After a three-year investigation, the Royal Dutch Medical Association has concluded that Dutch doctors ought to be able to kill patients who are not ill but who are judged to be “suffering through living.” The report, which contradicts a Dutch Supreme Court ruling that euthanasia should be allowed only if a patient has a “classifiable physical or mental condition”, argues that no reason can be given to exclude situations of such suffering from a doctor ‘