Is There a Christian Response to the Organ Shortage?

Maybe because I teach the topic, but I have been noticing a significant increase in the media’s coverage of organ allocation in recent weeks. In January, two sisters who had been in prison for sixteen years in Mississippi were released on the condition that the younger sister donate her organ to her older sister. The ethical response to this case focused on the financial motives for releasing the sisters:

After considering the matter for several months, Governor Barbour announced in late December that he would not pardon the sisters, but would indefinitely suspend their sentences.

He said he had acted in part out of concern over Jamie Scott’s health, but also to relieve the state of the cost of her dialysis treatment, which is approximately $200,000 a year.

“The Mississippi Department of Corrections believes the sisters no longer pose a threat to society,” Mr. Barbour said in a Dec. 29 statement. “Their incarceration is no longer necessary for public safety or rehabilitation, and Jamie Scott’s medical condition creates a substantial cost to the State of Mississippi.”

Dr. Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said Mr. Barbour’s decision to free the women on the basis of the kidney donation had crossed a moral line.

“Either out of ignorance or out of indifference, he shifted what had been a gift into compensation,” Dr. Caplan said. “He turned it into a business contract.”

While it definitely raised ethical eyebrows, the judge’s decision in this case reflects a much larger ethical debate concerning what should be done about the shortage of available organs.

Currently in this country, about 100,000 people are waiting for organs. About three-quarter of these will die before they receive an organ. There are numerous proposals for what to do about the shortage of available organs, some of them rather creepy like the New York “Organ Wagon” that will try and harvest organs from cardiac arrest patients within twenty minutes of death. More serious and far-reaching proposals tend to focus on two solutions: (a) moving to a “presumed consent” policy and (b) encouraging donation through financial incentives.

A “presumed consent” policy already has a lot of worldwide support. Currently, in the US, organ donation depends on explicit informed consent. In other words, organs can only be harvested from your cadaver if you explicitly say so, usually by indicating so on your driver’s license. Supporters of a presumed consent policy argue that the number of available organs could be increased dramatically by requiring explicit “opting-out” of donation, presuming that all those who have not said otherwise have tacitly consented. This is already the policy in many European countries. Opponents argue that such a policy violates the foundational bioethical principle of informed consent, and furthermore, could exacerbate fears about doctors prematurely “harvesting” organs.

Another solution to the organ shortage looks to financial incentives. This is the argument of Sally Satel (herself an organ recipient) who argues specifically that relying on altruism for organ donation has failed. Satel’s argument is not so much that human beings are primarily self-interested rather than other-interested, but rather that an altruistic motive for organ donation alone is not sufficient. She recommends incentives like health insurance, tax credits, education vouchers, funeral expenses, and retirement funding as added motivations for people to donate.

The obvious response to a financial incentive solution is that it will place undue burdens on the poor while possibly disproportionately favoring the wealthy. In other words, it is the poor who would be most motivated by financial incentives to give up their organs without the same likelihood as the rich in actually receiving an organ. Satel’s incentives are primarily federally-allocated, as they are in Israel, thus avoiding the less savory option of having the organ recipient pay the donor directly (which is currently illegal in the US and elsewhere). Critics still argue that such a federal-based solution might not resolve the current organ trafficking problem, and may actually make it worse.

Most recently in the US, the debate has shifted away from increasing the supply of organs towards re-allocating the distribution of organs. The new policy of the United Network for Organ Sharing attempts to replace the current first-come, first-serve model with a more complex rationing protocol that would distribute organs first to those most likely to benefit: the young and the healthy.

“Right now, if you’re 77 years old and you’re offered an 18-year-old’s kidney, you get it,” said Dr. Richard N. Formica, a transplant physician at Yale University and a member of the panel that wrote the proposed policy. “The problem is that you’ll die with that kidney still functioning, while a 30-year-old could have gotten that kidney and lived with it to see his kids graduate from college.”

Under the proposal, patients and kidneys would each be graded, and the healthiest and youngest 20 percent of patients and kidneys would be segregated into a separate pool so that the best kidneys would be given to patients with the longest life expectancies. The remaining 80 percent of patients would be put into a pool from which the network that arranges for organ matches, called the United Network for Organ Sharing, would try to ensure that the age difference between kidney donors and recipients was no more than 15 years.

While this policy shift has been commended for its sensibility, Satel and others are critical of the assumption that we should have to ration organs in the first place. “Rationing should not be taking place at all,” Satel told NPR earlier this week.

Is there an “everydaythomist” response to the organ shortage? Aquinas obviously never dealt with this issue, but there are a few guidelines we might apply from his general worldview. The first is that the debate over how to increase the number of available organs is often susceptible to the utilitarian critique that the “ends justify the means.” In other words, whatever we need to do (within limit) to increase the number of available organs is justified if we can save more lives. From a Thomistic worldview, the ends do not justify the means. The means themselves must be good as well. More specifically, the means chosen to increase the organ supply must also attend to those who are most potentially vulnerable, in this case, the poor who are more likely to give their organs and less likely to receive organs when in need. Thomas is famous for arguing that theft in the case of necessity is not actually theft (II-II Q. 66, art. 7) because “whatever certain people have in superabundance is due, by natural law, to the purpose of succoring the poor.” While this “preferential option for the poor” (not Thomas’ language but not necessarily inconsistent with Aquinas’ idea of justice) need not preclude a financial incentive solution, it does provide us with a reminder to be wary of how the poor will fare in the long and short term should such incentives be implemented.

Second, the debate about organs frequently presumes on both sides that our bodies are our own. Our bodies, however, are not our own property, but rather, gifts from God over which we are stewards. We are not free to dispose of our bodies in any way we would like, but we should also not cling to our bodies as ultimate goods. Christians can be encouraged to donate their organs freely as a sign of the reality of the body’s giftedness. In other words, in donating their organs especially as live donors, Christians are reminded in a very visceral way that the body is a gift, and thus just as Christ gave up his body for us, we in turn are called to give up our bodies for others. As such, Christians need not be opposed in principle to a presumed consent policy on the basis that it violates autonomy. For Christians, autonomy is subordinated to the body’s giftedness. Christians can set a marvelous example to a nation that is rapidly concluding that “altruism isn’t enough” by making altruistic acts a little more common.

Finally, the organ shortage is partially a result of longer life-spans and better overall care for the terminally-ill and severely handicapped like those in a persistent vegetative state. In light of extraordinary new medical procedures to extend life, Christians need also to be reminded that death need not be avoided at all costs, nor must “every step be taken” to extend life. For Christians, what matters is dying well. In order to die well, Christians must prepare, not only by “living well” as Robert Bellarmine wrote in his book “The Art of Dying Well,” but also by making specific plans for end-of-life treatment and organ donation. Many organs are lost because the dying or deceased person did not make their wishes known. Christians reading this who want to register to become an organ donor can also take the opportunity to reflect on what constitutes a good death and how they can begin to live in such a way to make that good death possible. A wonderful exercise for the season of Lent.

Rationing Health Care in the Neonatal Intensive Care Unit

“This book is about moral tragedy. . . Such tragedy is the inevitable result of two universal aspects of the human condition.

1. We have virtually unlimited health care needs.
2. We have limited health care resources.”

So begins my friend Charlie Camosy’s important new book Too Expensive to Treat: Finitude, Tragedy, and the Neonatal ICU. Now, in most cases, I would not dedicate a blog post to a utilitarian and proportionist unless I was going to argue against him. Charlie happens to be both. But he also happens to be an extraordinary moral theologian who defies stereotypes and ideological “buzz words” to really get to the heart of a moral issue. Since these are also the values of everydaythomist and since Charlie is the first utilitarian this everydaythomist has liked so much, his new book deserves a laudatory blog post (check out another review that mentions these virtues at National Catholic Reporter).

Take the following quote, also from the introduction.

[T]he unjust health care system of the United States has once again sparked a heated national debate about precisely what reforms should take place to make it more just. Many of those against expanding our significant public option for health insurance cry out against the “rationing” that would be done. Even the Obama administration and others pushing for precisely this kind of expansion claim that ‘no one is talking about rationing.’ But what neither side seems to realize, or at least is willing to admit, is that we are already rationing and we will never not be rationing.

Rather than avoid “health care rationing” as a bad word, Charlie forsakes the arguments of both sides and gets to what is really going on: We are already rationing, because we have to. Avoiding using the term won’t change the fact that we don’t have enough for everybody to get what they want.

What does this have to do with the NICU? Neonatal intensive care is some of the most expensive in pediatrics and in the healthcare system in general (estimated at around 21 billion dollars). It is routine to spend hundreds of thousands of dollars, even millions, to save the life of a newborn “at all costs.” Camosy gives two powerful narrative examples to illustrate the complexity of the argument he intends to make, one of Patrick, a tiny little preemie who beat all odds at survival and went home after only three months in the NICU, and Jerry, a Tennessee resident with a muscle spasm in his heart who can no longer afford the necessary treatment after being dropped from TennCare (Medicaid):

Can we justify spending $30 million on a single NICU patient while millions like Jerry need life-sustaining treatment—and for pennies on the dollar in comparison? If we say no, we are putting a price on life. We are not saying that Jerry is worth more than Patrick. We are not even saying that such monies, to be justly distributed, need to go somewhere other than the healthcare of babies. We are saying rather that just distribution of resources requires us to face difficult choices about how to ration care.

Part of Camosy’s argument relies on what is called the “social quality of life model” which looks at the just distribution of resources as having primary significance in determining the overall balance of burdens and benefits in questions of treatment. Most who argue for the social quality of life model also argue that infants do not possess a full moral status as a human being and as such, should be denied medical treatment based on broad, and more important social factors. Charlie again defies expectations and argues for both a strong social quality of life model and the full moral status of the infant:

Though all human infants have full moral status, if one accepts Catholic social teaching’s principles of theological anthropology, universal destination of goods, and a preferential option for the poor, broad social factors have more than secondary importance when it comes to treatment of imperiled newborns.

The strong social quality of life model espoused by Camosy, especially as viewed through the light of Catholic social teaching reveals that the “culture of overtreatment” in the NICU is in desperate need of reform. For imperiled newborns, doctors and parents often want to take “every measure possible to preserve the life of incredibly tiny infants, even when the chance of survival is very low, especially without significant handicap. Camosy argues that

“what is in a newborn’s best interest cannot be isolated from the duty of all to live in right relationship with the rest of humanity in conformity with the good of all. Part of what is means to live in right relationship is to use only a proportionate amount of resources available in one’s community. And given the dramatic numbers. . . it seems that some treatment of imperiled newborns is disproportionate with the common good. Such treatment, in light of the finitude of our resources (and of our human condition more generally), out to be forgone.”

Concretely, Camosy thinks a “triage” scale should be established for imperiled newborns ranging from “must treat” to “must not treat (given palliative care)” based on (1) survivability and length of life predictors and (2) short- and long-term costs of treatment. This includes making illegal the treatment (outside of palliative care) for the following terminal ailments which cannot possible benefit from treatment:

trisomy 13, 15, or 18
Triploidy
Anencephaly/acrania
Holoprosencephaly
Large enecephaloceles
Acardia
Inoperable heart anomalies
Severe clotting disorders
Birth without pulmonary veins
Potter’s syndrome/renal agenesis
Multicystic/dysplastic kidneys
Plycystic kidney disease

Although Camosy supports legal reform to keep any aggressive medical treatment from such infants, he is also adamantly opposed to the idea that this constitutes “abandoning the child.” He supports palliative care and any medical procedures (induced early birth, e.g.) that will allow a parent to bond with their child before they let her go.

Camosy must be commended for his courageous willingness to take on an issue that both sides (conservative and liberal) have avoided. Camosy is right to point out the problems with the culture of overtreatment in the NICU, though this culture extends far beyond treatment of imperiled newborns. Overtreatment is a problem in many segments of the health care industry, and Camosy could do a better job pointing this out in order to avoid criticism from the right suggesting that he is unfairly focusing on infants rather than the over-cautious, the terminally ill, or the elderly. For more on overtreatment, check out the book by Shannon Brownlee.

Another issue that goes largely unaddressed (for very good reasons since he is making largely philosophical and not explicitly theological arguments) in Camosy’s book is the fear of death that feeds this culture of overtreatment. Theologically, this fear of death is challenged in a very fine book by Terence Nichols: Death and the Afterlife: A Theological Introduction. However, the point is that Camosy draws on Catholic Social Teaching without drawing on other elements from the broader Catholic tradition (i.e. its teachings on the afterlife) which may make his overall argument a little easier to swallow. Catholics who believe they have to take “every step possible” to save the life of their premature newborn (or elderly parent) often misunderstand the Church’s teachings on end-of-life care precisely because they have not been taught or fail to appreciate the corresponding teaching on eternal life.

Finally, Camosy gives a nod to the role for virtue ethics in this debate in his discussion of prudent clinical and public policy decisions, but one need not be a utilitarian to argue against a culture of overtreatment in the NICU or for a more just distribution of health care resources. A virtue ethicist may put a greater onus on doctors to make prudent, just, and courageous decisions in the NICU or a parent to see true courage as the ability to let their premature baby die peacefully rather than taking extraordinary and largely futile life-extending measures, but virtue ethicists can also appreciate the value of certain legal measures in forming virtuous decision makers in the NICU. This is just a minor quibble. Secretly, I think Camosy is a virtue ethicist at heart (which is why he appeals to the “common good” in his teleological schema rather than the “greatest good” as other utilitarians do). Ultimately, the ideal that Camosy lays out for the just distribution of health care resources will require agents whose characters have been habituated to promote such goals consistently, reliably, and with pleasure. For Camosy, the emphasis is largely on making rational and logical decisions, but a virtue ethics contribution could attend to the powerful way in which emotions prevent or facilitate rational action in these matters.

This is a very fine book, challenging for anybody to read, and worthwhile for everybody. Camosy challenges us to look at a complex and difficult moral dilemma without the comfort of our ideological camps that allow us to be either “pro-life” or “pro-justice.” And speaking of justice, the book is only $12.24 and available in paperback.

Integrating Mind and Matter in Healthcare

A great article in the NYTimes illustrates a major problem in contemporary psychiatric practice–its mind/body dualism. The author Daniel Carlat, who has a book coming out on the subject next month, describes how psychiatric practice has moved over the last fifty years from an exclusive focus on the mind to an exclusive focus on the brain:

Leon Eisenberg, an early pioneer in psychopharmacology at Harvard, once made the notable historical observation that “in the first half of the 20th century, American psychiatry was virtually ‘brainless.’ . . . In the second half of the 20th century, psychiatry became virtually ‘mindless.’ ” The brainless period was a reference to psychiatry’s early infatuation with psychoanalysis; the mindless period, to our current love affair with pills.

More specifically, writes Carlan, “psychiatry has been transformed from a profession in which we talk to people and help them understand their problems into one in which we diagnose disorders and medicate them.”

This is due to a number of factors including the fact that insurance companies “pay nearly the same amount for a 20-minute medication visit as for 50 minutes of therapy” as well as the fact that patients in today’s busy culture are unlikely to want to commit valuable time to weekly therapy. But a big reason for the move to meds over therapy is that the drugs seem to work. But appearances can be deceiving. Carlat writes,

But over the past few years, research studies have shown that therapy is just as effective as medications for many conditions, and that medications themselves often work through the power of placebo. In one study, for example, researchers did a meta-analysis of studies submitted by drug companies to the F.D.A. on seven new antidepressants, involving more than 19,000 patients. It turned out that antidepressants are, indeed, effective, because on average patients taking the pills showed a 40 percent drop in depression scores. But placebo was also a powerful antidepressant, causing a 30 percent drop in depression scores. This meant that about three-quarters of the apparent response to antidepressants pills is actually due to the placebo effect.

Nobody knows exactly how the mysterious placebo effect works, but it is clear that it has impacts on the brain that can be seen as clearly as medication effects. In one study conducted by pain researchers at the University of Michigan, subjects were given an ache-inducing injection of saline into their jaws and were placed in a PET scanner. They were then told that they would be given an intravenous pain treatment, but the “treatment” was merely more saline solution, acting as a placebo. The PET scan showed that the endogenous endorphin system in the brains of the subjects was activated. The patients believed so strongly that they were receiving effective treatment that their brains followed suit. Presumably, a corresponding brain change occurs when depressed patients are given placebo pills.

Therapy, you may be surprised to discover, also leads to empirical changes in the brain.

n an experiment conducted at U.C.L.A. several years ago, with subjects suffering from obsessive-compulsive disorder, researchers assigned some patients to treatment with Prozac and others to cognitive behavior therapy. They found that patients improved about equally well with the two treatments. Each patient’s brain was PET-scanned before and after treatment, and patients showed identical changes in their brain circuits regardless of the treatment.

What this article points out is that the dualistic distinction between mind and matter does not correspond to reality. The “mind” is not some metaphysical entity distinct from and trapped inside the material trappings of the brain. Rather, the mind is matter, or perhaps more specifically, the mind is consubstantial with matter. As scientists like Steven Pinker and Antonio Damasio have illustrated, the legacy of Descartes that there is some sort of “ghost in the machine” is false. The metaphysical “mind,” complete with values, personality, and character, exists substantially in the material components of synapses, axons, and cortex.

We might consider this a development from a more Platonic to a more Aristotelian psychology and biology. Ethically, it challenges us to see how care for the soul cannot be separated from care for the body. We are not spiritual beings who can somehow transcend the trappings of the body with all of its inconveniences, but nor are we purely material beings, as transparent and obedient to the laws of nature as a stone. What is metaphysical in our nature influences and is influenced by what is material.

This new understanding of the nature of the human person, what we might call a philosophical anthropology, needs to influence the way we think of medicine. As Carlat writes,

Clearly, mental illness is a brain disease, though we are still far from working out the details. But just as clearly, these problems in neurobiology can respond to what have traditionally been considered “nonbiological” treatments, like psychotherapy. The split between mind and body may be a fallacy, but the split between those who practice psychopharmacology and those specializing in therapy remains all too real.

For him practically, this has meant a shift to what he calls “supportive therapy” which involves not only prescribing drugs, but also listening to patients, helping them solve basic problems, and offering emotional support. The implications, however, extend beyond just psychiatry to all of medicine. Carlat concludes that good doctoring “involves perfecting all the skills relevant to healing and deploying them when needed.”

This will be a challenge in upcoming years as our health care system becomes more systematized, more reliant on complex care networks dependent largely on electronic patient records rather than a simpler primary care provider/patient relationship. In an of itself, this is not a bad thing and a more efficient system will allow more patients to receive and benefit from healthcare. But doctors need not forget the value of that standard question “how are you feeling?” and most importantly, cultivating a disposition to listen to the response. They may find themselves prescribing fewer meds and getting healthier and happier patients as a result.

The Future of Bioethics

On November 11, Andrea Vicini, S.J. the Gasson Chair professor at Boston College, presented the annual Gasson Chair lecture on “The Future of Bioethics.” Vicini has a unique vantage point in presenting a lecture on such a topic. He possesses two doctorates, one from Boston College in moral theology, and one from Italy, and he is also an M.D. Moreover, he possesses a larger global perspective that many North American bioethicists lack.

Vicini first identified three major areas of concern for contemporary bioethical inquiry. The first, health care, is an obvious concern, but Vicini pointed out the global dimension of this issue, noting that 70% of the world’s population cannot afford health care.

The second concern, research, is a familiar topic for bioethical inquiry, and developments in biomedical and biotechnological research always raises new moral dilemmas that ethicists need to be aware of. Vicini pointed out specifically the ethical challenges raised by the new discipline, synthetic biology, which combines elements of engineering, chemistry, biology, and computer science to redesign life as we know it at the molecular level. The immediate implications of this new discipline were described in a New Yorker article documenting how synthetic biology is changing the face of malaria treatment. Artemisinin, an herb, when taken with other drugs, is the only consistently successful treatment for malaria. However, this plant is difficult to cultivate. Using the tools of synthetic biology to create a new metabolic pathway that did not exist naturally by inserting artemisini genes into E. Coli bacteria, scientists were able to create organisms that produce the drug necessary to treat malaria, potentially saving millions of lives. While the language that accompanies such advances is often triumphant, as Vicini pointed out, we need to also be aware how these new advances are impacting human evolution, and potentially creating new biological and ecological threats for future generations.

The third area of concern Vicini addressed is the problems created by global emergencies like HIV, which have not only biological and medical dimensions, but also social dimensions. Does bioethics have a future in addressing such complex issues?

Vicini thinks that bioethics, a relatively new discipline, historically a branch of applied philosophical ethics, does have a future in addressing these and other issues, but to do so, the discipline must evolve. First, bioethics can no longer be seen as a mere area of philosophical inquiry with implications for policy, but must be understood as a practice. Quoting Baruch Brody, Vicini noted that the future of bioethics must be regarded as a “working practice, not solely a collection of arguments and ideals.”

The practice-oriented vision of bioethics has three dimensions, according to Vicini. First, it is interdisciplinary in mode. Everydaythomist has written about the necessity of interdisciplinary work in both the sciences and the humanities, a point Vicini confirmed. “Interdisciplinary work makes us grow morally and intellectually,” he noted. Moreover, interdisciplinary work has a theological foundation. God in the Christian understanding is triune, and thus eminently in relationship. So too must God’s creation be in relationship, recognizing and reaching out to the other in order to forge relationships on both a practical and a scholarly level that are themselves foundational for truth.

More practically, interdisciplinary work demands that science acknowledge its limits and that the humanities acknowledge their dependence on the sciences. While the natural sciences like neuroscience and medicine can provide a strong empirical foundation for the future of bioethics, a necessity especially emphasized by bioethicist Ezekiel Emmanuel, such empirical foundations are necessary but not sufficient to achieve the telos of the bioethics discipline. Understanding what it means to be human requires not only empirical data, but also narrative from literary studies, an understanding of causation from philosophical studies, an understanding of sociality and group dynamics from sociology and economics, and an understanding of grace from theology. Because human beings cannot possibly master all of these disciplines, the task of bioethics is necessarily collaborative, both on a scholarly and a practical level.

The second dimension of Vicini’s vision of the future of bioethics is the discipline’s prophetic nature. By “prophetic,” Vicini is referring to a human capacity to “speak truth to power.” Bioethicists have to be ready to make ethical proposals, to challenge the status quo, and to have the courage themselves to live out their ethical beliefs. A prophet is inspiring not only in word, but also in example. Future bioethicists have an extraordinary responsibility to live in a way worthy of their calling.

Finally, Vicini’s vision of the future of bioethics sees the discipline as transformative, not only on the level of public policy, but on an individual level. Genetic developments are allowing us to transform human nature on a biological level, but Vicini also thinks that bioethics has the power to transform on an ontological and existential level. Bioethics allows us to see concretely the relational dimension of human nature, and the discipline should proceed in such a way according to Vicini that strengthens those relationships, allowing us to extend those relationships to a universal level, whereby human beings see their connection not only with other human beings, but also with the natural world around them. Bioethics should help human beings identify their place in the cosmos.

Of course, a lecture at this level is necessarily vague, but Vicini’s overall point I take it is that bioethics should transform the way people live. Bioethicists have typically worked on a grand scale, working to transform public policy and weighing in on controversial moral quandaries like the Terri Schiavo debate. While there is a place for such ethical reflection, we must ask ourselves how transformative this mode of bioethical practice really has been. Leon Kass, when asked if bioethics makes a difference in people’s lives, answered in the negative. Vicini’s point is that if bioethics is to have a future, it must find its power on an individual level.

What Vicini neglected in his lecture is the necessity of an adequate moral psychology for his vision of the future of bioethics. Until we can learn how to translate an intellectual ideal into an appetite and an action, bioethics, and all ethics, will fall short. I currently teach a bioethics class for nursing students and we most recently raised the question of the morality of in vitro fertilization (IVF). I had my students read an article from the NYTimes on the larger societal implications of IVF, especially on the cost of health care for children born prematurely due to fertility treatments.

Surprisingly, almost all of my students concluded that from a utilitarian perspective, IVF was not a morally sound practice. There were various comments about how the benefits of IVF are limited to the rich while the burdens more strongly affect the poor, a violation of the principles of beneficence and justice. However, when asked if they themselves would undergo IVF if unable to conceive naturally and practically every student said that she would. The understanding of an ethical ideal was not strong enough to change the actual practices of those holding this ideal.

So without such a moral psychology, bioethics will still fall short of its goals. It will find it easier to get bogged down in quandaries than transform people’s lives. It will find it easier to talk big and act small. Without an adequate moral psychology, bioethics will, I think, become obsolete.