The Baby-Face of Bioethics

Bioethics, End of Life Issues, Family Issues, General Bioethics — By Jennifer R. Hardy on July 8, 2009 at 9:13 pm

“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.

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  • Linda Hardy

    It is inspiring and hopeful, that someone so thoughtful might breathe a breath of Spirit into this gray, murky world in which the best thinkers are merely chasing the elusive butterfly.

  • http://www.evangelicaloutpost.com Lindsay Stallones

    What a great post! Thank you, Jennifer!

  • samuel baylus

    that quandary will soon be a non-starter. a bureaucrat will make it and the faux-agony of the neonatologist will be eliminated. the world coming to your door will not eliminate the “law of supply and demand”. rationing is inevitable.

  • http://www.evangelicaloutpost.com Dustin Steeve

    Samuel,

    Are you suggesting that the future of health care involves some sort of “cap and trade” on medical treatment? If so, why do you think this?

  • smmtheory

    Are you suggesting that the future of health care involves some sort of “cap and trade” on medical treatment? If so, why do you think this?

    Have you not been reading about Obamacare?

  • ucfengr

    Are you suggesting that the future of health care involves some sort of “cap and trade” on medical treatment?

    More likely, just a cap.

  • Onecaliforniadad

    I suggest this blog post exhibits another example of two world views again in conflict.

    One world view is exhibited by Samuel Baylus with the comment “that quandary will soon be a non-starter. a bureaucrat will make it and the faux-agony of the neonatologist will be eliminated. the world coming to your door will not eliminate the “law of supply and demand”. rationing is inevitable.” I am sure that Samuel Baylus will embrace this world view when he or she is the one being rationed.

    It is this same world view that condones enabling women who are about to undergo an elective abortion to allow a doctor in training to perform a CVS procedure on the unborn child, solely for training purposes, just before the abortion. This same world view permits CVS trainees to practice the CVS procedure if ultrasound findings place the pregnancy at particularly high risk for a chromosomal abnormality such as Down syndrome. Under this world view, human life (that is, others human life) is a disposable commodity. Why shouldn’t the child selected to die by abortion, or the “inferior” child who might have Down syndrome, be treated like a lab rat suitable for experimentation?

    This is the world view embraced by President Obama as in part exhibited by his treating human life as a disposable commodity in the area of embryonic stem cell research. As Mr. Obama observed, “We certainly do not want to make a false choice between sound science and moral values”. After all, “don’t we have a duty to care for others to ease human suffering?” Unless of course you are the embryo serving as the human lab rat for embryonic stem cell research, or the down syndrome child, or the soon to be murdered child through abortion, or the person facing “rationing”, or the elderly person whose quality of life is no longer financially justifiable under this world view.

    The other world view is that based on God’s revelation, where human life is created in His image. Human life is sacred. It is special. It should be protected and nurtured, even if it is inconvenient, or may have down syndrome, or is disabled and requires extraordinary care.

    I suggest it is time for the Christian community to wake up and stand up and, to their last breath, advocate God’s world view on humanity. Otherwise, it is only a matter of time before each of us will be rationed, that is, unless you are a power player such as Senator Kennedy.

  • smmtheory

    To be fair, though, it probably shouldn’t be called Obamacare. I mean, it’s not as if he actually had anything to do with the designing of such an abysmal health care fiasco. No, Casear-wannabe Barackus is probably happily humming the refrain from “We Are The Champions” while punching up his “This is an EMERGENCY bill!” speechtacular in his office while his lap-dog Pelosi is rigging the bill and the vote in the House of Non-Representatives to pass it. And that sucking sound that people have been hearing grow louder and louder since the Porkulus was passed? That’s the retro-active abortion nozzle that’s about to be shoved into that painful incision just beneath our skulls.

  • http://www.evangelicaloutpost.com Jennifer R. Hardy

    smmtheory:

    This is a place for open discussion and I welcome people’s comments, whether they agree or disagree with me or each other.

    However, I would offer a caution about less-than-judicious references to abortion. While I may agree with many of your political views (so far as I can infer them from your comments), it is simply a fact that some women who have had abortions greatly regret them and stumbling across such a comment could be sickening for them, to put it lightly.

    There is a time, a place, and a manner in which to use vivid language referencing actual abortion procedures. I suggest that was not it.

    Onecalfornia Dad:

    I agree that such an approach to rationing is a worldviews issue, at its deepest core. If you’re interested in a well-thought out defense of rationing in end-of-life issues, Dan Callahan from the Hastings Center is an expert on this. I disagree strongly with much of what he writes (except that death is not to be overcome medically), but it is a way to know what the best of “the other side” is saying and why: http://virtualmentor.ama-assn.org/2008/06/oped1-0806.html

  • http://www.evangelicaloutpost.com Dustin R. Steeve

    Jennifer,

    I assume that you do not intend people’s thoughtful pursuit of the “spirit of truth” to act as a guise for a sort of bioethical relativism. How can a doctor, nurse, scientist, or bioethicist follow the “spirit of truth” while still making ethical decisions to be obeyed to by the general populace (for example, in the case of legislation or policy making)?

  • http://www.evangelicaloutpost.com Jennifer R. Hardy

    Thanks for the clarification.

    First, I do not mean the “spirit of truth” in some sort of metaphorical or literary fashion. I mean the Spirit of truth: the third person of the Trinity. Thus bioethical reasoning enlightened by the Spirit is a way of gaining greater access to the objective reality that He as God created. Given that Paul’s refrain of “be of one mind” is to be achieved through the Spirit, I do not fear that following the Spirit will lead to subjectivism.

    The Spirit’s first role in bioethics was in inspiring the Scriptures, which contain foundational ethical and metaethical principles. The Spirit then aids believers in interpreting those Scriptural principles (whether from reading the ten commandments or understanding narrative, poetry, etc.). The Spirit also aids in corroborating the natural world with the supernatural world of the Scriptures. Lastly, the Spirit works in redeeming our body and soul, including our fallen faculties of reason.

    This means that the doctor/nurse/bioethicist etc. who desires to follow the Spirit of truth will inevitably come to bioethical conclusions that the general populace will not agree on. Usually, I think that those conclusions will be right not simply because they are reached through a Christian worldview but because they effect the greatest good for the greatest number of people (ironically). Thus almost any Christian ethical conclusion can use other methods of reasoning to persuade the general populace of their justification.

    I hope that makes sense. Like I said in the post, I’m only just beginning to “tease out the intricacies” of looking to the Spirit for guidance in bioethical reasoning.

  • http://evangelicaloutpost.com/?fbconnect_action=myhome&userid=98 Jennifer R. Hardy

    To follow up with an example:

    Christian ethics teaches that all innocent humans are deserving of life. We may be unable to sustain such life, but we cannot electively end such life simply because we think that life will be too “burdensome” on the family when we could do otherwise. This is concluded from Christian reasoning, but this ethical conclusion can also be justified through a “feminine care ethic” or a “deontological Kantian perspective” (among others). My personal tactic in arguing in bioethics is to assume presuppositions from the opposing view and work from there, whenever possible, or challenge some of their presuppositions with other presuppositions that they hold.

  • Onecaliforniadad

    Jennifer,
    Thank you for the article references you provided in your comments, both of which I have read. Thank you also for the very important expansion to your blog post that you provided in response to the question posed by Dustin Steeve regarding what you meant by the phrase “Spirit of Truth”.

    I read your expansion right after I had read the Biblical account of Jesus preparing to return to Bethany to restore bodily life to Lazarus. In that account Jesus shared with his disciples (and us today) that “a man who walks by day will not stumble, for he sees by this world’s light. It is when he walks by night that he stumbles.” In the context of God’s revelations throughout the New Testament, my opinion is that Jesus was (is) in part teaching that God’s revelations provide the principles (the light) we need to address all life issues, including those addressed in your blog post. When God’s principles are followed, we (individually and as a society) will not stumble. When they are not followed, either intentionally or unintentionally, we stumble. This appeared to me to tie in with what I understand you were in part sharing in your expansion.

    It struck me that this Biblical teaching is in part evidenced by the life example experienced by Dr. Prager as noted in the observation he included in his article, in the link you provided. In that article, Dr. Prager in part wrote that “Not too long ago, some societies actually treated their elders as second-class citizens when it came to health care. During a trip to the Soviet Union in 1986, I was told that elderly patients in Soviet hospitals were badly neglected because they were felt to be nonproductive elements of society. I was also told how, in an Eastern European communist country, people lied about their ages when calling an ambulance because emergency services were not dispatched to older patients. …These extreme and repugnant examples of ageism should serve as dramatic reminders that age should not be used as the sole criterion for allocating health care resources.”

    Earlier this year I attended a professional meeting and in my conversations with two legal professionals from Canada I inquired regarding their respective opinions regarding their countries health care system. They both commented that daily non emergency care was very good, but when they needed high quality care, including surgery, they obtained it in the United States because they could not obtain the same quality of care in their country, either because it was not available, or if available, it could not be obtained in a timely manner, such as for cancer patients needing immediate treatment.

    It seemed to me that these end results, which by the way I have also observed in our current health care system, were in part the result of choices and decisions based on a non Biblical based world view where human life is a commodity that is no greater than the world in which it exists. I suggest these end results would be repugnant to a Biblical based foundation where human life is special, created by God in His image.

    I suggest that it is critical that if we as a society truly desire a humane culture, in the context of true humanity as God intended, as contrasted against humanism defined by those who have rejected God’s truths – and the real world such humanism creates, then we need to reject the non-Biblical principles (and leaders that are striving to impose them) and bring God’s light back to our culture and apply God’s life principles. We need these same Biblical principles to direct the ethical questions noted in your blog post.

    Please keep posting so that we (readers) can be further educated and challenged.

  • Roger

    Jennifer,

    I am a scientist doing research in the university setting. I have taken a number of seminars on research ethics required by the National Institutes of Health (NIH). Often, ethics is separated from morality in these seminars. Ethics is defined as a system of accepted beliefs within a profession for controlling behavioral practices and morality is more related to standards that a person follows regarding good or bad behavior. These accepted ethical beliefs are often linked to what is or is not legal to do. For example, if I am a doctor and perform an abortion, this procedure can be ethically performed — although some may consider this procedure morally wrong. Ethics can also change over time.

    It seems that most scientists start with what is currently ethical in determining whether a gray area in research is ‘ethical’ or not.

    The AMA article / link you provided to Onecaliforniadad is very interesting. It seems that Dr. Callahan basically functions from an ethical standard; while Dr. Prager functions more from a moral standard. What is refreshing about Dr. Prager is that some possible explanations and answers are provided regarding our current medical dilemma.

    Often when morality is discussed — the morality topic becomes preachy, as well as, the main focus without any real answers to the current crisis. This is a common trend among some Christians. I think that both physicians are sincere in their attempt to address a very complex topic — but they address this topic from different views of the world – offering different solutions.

    I believe that your obligation starts with morality and finishes with some applicable answers to the problem of the day. I believe that Dr. Prager is one good example to follow. To be relevant in these arguments, one has to provide solutions.

    So…A couple has a child with a profound physical impairment. Often, parents are financially strapped — emotionally and physically drained. If they have other children, these children may have to do without because of a lack of resources. Some parents get up at 4 or 5 am to begin the process of getting the child or teenager or young adult ready for the day — usually, a 2 or 3 hour prep time is required. Parents are stressed about what will be the future of their child after their death. Who will care for their child? There are thousands of other concerns we could discuss. Society may offer some assistance – but it really isn’t enough.

    However:
    What are Christians doing to help these families? How do Christian’s reach out and help solve these problems? Or, do Christians leave it to society like Ebenezer Scrooge? Or, perhaps, people simply don’t know how to help. Perhaps, people don’t have time from their busy schedule. Then, there are always the preachers.

    Addressing ethical questions based on God’s moral principles is important. But, Christian’s also need to be prepared to provide some relevant solutions. I’m uncertain we have. Are we really the salt of the world?

  • Roger

    Jennifer,

    I viewed Dustin Steeve’s blog titled, Kids Transformed By Music – Lunch w/ TED.

    I believe Jose Antonio Abreu is another good example of a person who acted / provided a solution to his ethic concerns for the children of his country. While viewing this video, one understands his ethical concerns for the children in his country and then one experiences how he systematically provides an answer.

    When you think about these big ethical questions — I believe that you need to communicate what the solution looks like — how will this solution make the world a better place?

    Nancy Pelosi has made references that abortion will help alleviate problems awaiting children with severe handicaps, as well as, save valuable funding resources — especially in this economic downturn.

    We may not like Pelosi’s world view, but at least, we can see what her world looks like. Her view resembles Dr. Callahan’s.

    I believe that it becomes easy for Christians (including myself) to become noisy gongs instead of providing applicable solutions. If we were better at it — the world would be a better place. Jose’s journey is amazing.

  • http://www.evangelicaloutpost.com Jennifer R. Hardy

    Roger,

    If I had to guess, the NIH is interested in discussing ethics in terms of “what is currently ethical” because of our legal framework. In philosophy, ethics taken broadly is typically broken down into metaethics (exploring what is the nature of right/wrong etc.), normative ethics (identifying and defending specific principles), and applied ethics (what to do in a particular case). If the NIH intends ethics only to include the latter aspect, they are using the term very narrowly and not looking at any “higher” ethical reasoning processes.

    It seems like you are saying most scientists are following our legal system’s interaction with ethics: employing only a system of casuistry—or case by case reasoning—to produce precedent. For example, the Cruzan and Quinlan cases determine what is ethical, and there is no discussion about whether those cases themselves were decided rightly. This approach perhaps works for the legal system, but it slightly worries me that you are saying scientists are following only this model as well.

    There is a great need for Christians to be employed at all levels of this ethical reasoning, not just on a case by case basis, looking to what is currently acceptable and practiced, but also at how we derive original core principles, and the very nature of right and wrong.

    Most of all, though, you are right in pointing out that even if we clearly articulate sound ethical principles but do not follow through in action, we are nothing more than “noisy gongs.” Without love, and as a Christian I mean a robust form of action that looks to care for another’s needs, we are failing to obey the ultimate model of ethics presented to us in the person of Christ within Scripture.

    The abortion reference hits the closest to home because I interact frequently with “moral” people who denounce abortion but would never seek to assist a scared single mother or someone in need of practical resources to assist their disabled child. Madeline L’engle writes, “Abortion is an ugly and unsolved problem, and while the theological answer may be clear, easy answers produce… unloving actions.”

    Spirit-guided bioethical reasoning is pertinent precisely because the same Spirit who reveals and clarifies ethical principles will also prompt a believer to pour out his or her life in sacrificial, practical and tangible service. Christ met the Samaritan woman at the well and denounced the immorality of her lifestyle, but not before offering to meet her deepest needs. Rightness and Wrongness stand as they are, regardless of whether Christians act hypocritically or not, but those who seek to follow the Spirit cannot stop at truth; they must incarnate it in love as well.

    That said, the Christians I know are by and large not hypocrites, and they do serve people in need, whether that be the poor, the lonely, the homeless, or the sick and dying, etc. I would argue that most truly driven Christians are very sacrificially loving, and it’s just that the inactive “preachy” Christians are the ones who make the press. For instance, wack-jobs who bomb abortion clinics receive undue media attention, while I’ve never once seen news covering the Christian Care Foundation for Children with Disabilities, which offers trade training for adult disabled orphans. Or Harbor House, a Christian maternity home which has freely provided housing and support to over 100 girls in the last fifteen years. Or Natthan, an organization which matches Christian families with unwanted babies with disabilities. Plenty of people within the Church are acting on their convictions, especially outside of the US; we simply need more of such genuine obedience to God.

  • Roger

    Jennifer,

    Thank you for your thoughtful reply.

    Just to be clear, I have received a fundamental level of ethical training in my education that goes beyond the information provided by NIH. However, my education in this field does not extend to your level of knowledge.

    NIH’s approach is to provide ‘ethical training’ to me as a consumer, a person who works with humans in research. The idea of separating ‘ethics’ from ‘morality’ is so that various people from different walks, who receive NIH funding (grant), will ethically interact with people the same regardless of the researcher’s moral beliefs. For example, women are free to make their own decisions to either participate or not in a study regardless of social constructs. Additionally, the researcher may have to design the consent process in a specific manner to make certain that women and children are not punished for not participating in the study.

    This thinking is also seen in our legislators. For example, because abortions are ethical (legal), doctors should perform abortions regardless of the physician’s moral beliefs. This process is to ensure that women in all parts of the country will receive the services they need. So, if a doctor does not believe that abortion is morally right, that person should not be a doctor. Whereas, in another situation, people have the freedom to either participate or not participate in a study.

    As we can see, this concept of ‘ethical’ practice can be good or bad.

    You did an excellent job balancing the idea that ‘ethical principles need to be followed through with action’. My comments tipped the scale too much in the direction that Christian’s are noisy gongs. Faculty in universities can also be noisy gongs, and in fact, people in general can be noisy gongs. People express their beliefs and then don’t follow through with action.

    However, an important concept is that if Christians only state their moral beliefs and don’t follow through with solutions or actions, than solutions / actions presented by people like Nancy Pelosi or Dr. Callahan will be viewed as the only alternative. Also, as citizens of this country, we need to put our priorities straight regarding how to fund / support these solutions / actions.

    You are correct in that the media has done an excellent job in promoting Christian’s as crazy. On this website (EO), Dustin Steeve presented a blog “Sarah Palin: Fantasy Politics”, and he discussed the advantages of the “new media” over the old. I would hope that the “new media” (i.e., internet technologies) will be used for increasing the average citizen’s awareness of the positive impact the Christian community has made in our country, as well as, the resources we offer. I also believe that these web resources could help Christians’ understand where they could be of service (action) in helping the community – to have a positive impact in our country and world. Currently, these resources are not well organized and transparent to many people, especially those who are not experts on accessing the web for information.

    Respectfully, Roger

  • brandenk

    Have you read much of Gilbert Meilaender?