A Couple of Other Bioethics Blogs Worth Checking Out

“Merry Christmas to all, and to all a good night….”

I am mailing it in on the holiday.  To do so, I thought I’d encourage readers of this blog to check out at least two other bioethics blogs that may not always be linked in the usual places.

One is Wesley Smith’s “Human Exceptionalism” blog at National Review Online.  Posts are reasonably frequent (although none in December 2012), with an emphasis on human dignity concerns (end-of-life, distinguishing human and animal moral status), biotechnology and risks of commoditizing human life, and the implications of the Patient Protection and Affordable Care Act (aka “Obamacare”).  Conservative, both socially and politically, as I take conservatism generally to be understood in today’s America.

The other is the “Over 65 Blog” at the Hastings Center website.  Organized by Daniel Callahan and colleagues, this blog focuses on reflections by senior citizens on health care, health policy, and generational issues raised by those and by the aging of our population generally.  The five stated goals are “a stronger role for seniors, self-determination, more care/less technology, confronting the cost problem, and the economic and family needs of the over-65 generation.”  The general perspective is more progressive or at least center-left.  Last week brought a really interesting post from Alicia Munnell, a management professor at Boston College, refuting the idea that older people working longer will mean taking jobs from the young.

I think both are thoughtful and authoritative, and welcome respites from the talking-point fiascos of broadcast journalism.

Don’t Forget the Soul

I believe that if we are properly to defend human dignity and limits on what we will be willing to attempt with biotechnology, we must do our best to define and defend an essential human nature, which ought not be tinkered with.  I further believe that effort means that we affirm that each human being has a real, immaterial soul that survives the body at death and that is not just “the software” or “the output” of the brain or DNA or our bodies in general.  I find it astounding that some Christians now deny that the Scripture requires this position, an argument made admirably by John Cooper in his book Body, Soul, and Life Everlasting.

In addition, I think that a philosophical defense of the soul is also critical, and in this I am attempting to digest and follow the arguments of Professor J.P. Moreland of Biola University.  He has developed those at book length in Body and Soul (co-authored with Scott Rae), in a related pamphlet What is the Soul?  Recovering Personhood in a Scientific Age, and, in shorter form, in a recent lecture for Biola’s Center for Christian Thought (click here for audio and for a subsequent lecture by John Cooper).

Why should we think the soul is a substantial, real entity, not just an epiphenomenon of brain function?  Space and my meager philosophical skills limit what I can say here, but I understand Prof. Moreland’s key points to be, at least in part:

1)      Mental events are not identical to physical events, even if the latter are intimately linked with the former.  For example, our experience of pain is different from the nerve firings that are the physiologic events that accompany a pain.

2)      Our basic self-awareness—in particular, our awareness that each of us owns our individual experiences, and each of us is an enduring self—cannot be adequately accounted for if we aren’t each individually a soulish, or spiritual/mental substance.

3)      A unified, first-person perspective can only be explained by the presence of a soul.  If we are primarily physical beings, then first-person statements can all be just as well described in the third person.

4)      If we can choose to act at all—that is, if we have free will to any meaningful extent—then there must be an agent acting.  This requires that there be an immaterial soul that is essentially who we are.  Otherwise, we have to hold that our actions are events determined entirely by physical causes, including other events, or that our actions are only seemingly “our” actions, since “we” can’t really cause anything other than what is caused by the biologic operations of our bodies (plus the movements of objects around us, at least in some cases).

5)      By an argument appealing to modal logic, if we can reasonably, or “strongly,” conceive of a state of affairs in which we exist disembodied, then we have good grounds for thinking we are not identical to our bodies, which cannot exist disembodied.  (This one for me is the most challenging of the five points listed here.)

The above are just bullet points indicating the sort of arguments Moreland advances in support of substance dualism, the view that the body (with the brain) and the mind/soul are two distinct things or substances.  Moreland identifies three forms of substance dualism: a Thomist form, to which he subscribes, that holds the human soul to contain all the ultimate capacities of a human being; a Cartesian form (advanced by Richard Swinburne, for example) that holds the soul to be more closely identified with mind in particular, and an “emergent” form (advanced by William Hasker) that holds the soul initially to emerge from brain and nervous system functioning but then to “exercise its own causal powers and be sustained by God after death” (Moreland, What is the Soul?, p. 29).

None of this considers the body, much less the deeds done in the body, to be diminished in its importance.  To be sure, the Scripture affirms bodily resurrection.  But I think that Christians in bioethics ought to be substance dualists and spend some time delving into the issues around it.  In an age when people seek to explain complex human decisions (like whom to mate with or whether to take a gun to a roomful of children) by appealing to DNA sequences or DNA expression or brain chemistry, we should remind ourselves and others that we are, most fundamentally, our souls—which need to be, and can be, fitted for heaven only by God Himself.

On the Boundaries of Moral Complicity

Last week’s lively exchange about the moral legacy of “the father of space medicine” invokes the broader issue of how to decide when one is being complicit in an immoral act.  (Please note that I am NOT attempting to weigh in further on the individual discussed last week—whose name I will not write here, in hopes that I can protect this post from further exchange about him personally.)

We all agree that what the Nazis did in the name of “human subject research” was evil.  At least, I think we all agree.  But would it be evil to use an anatomy text whose illustrations had been derived from the Nazis’ efforts?  Or, to be more contemporary about it, would it be unethical to take a new drug whose development included laboratory tests using stem cells from embryos specifically created or destroyed for use in those tests?   The Nazis are easy targets, but not a shield from more thorny issues that might strike closer to home.

Dr. Robert Orr addressed the issue of moral complicity at length in an article posted in 2003 on the website of the Center for Bioethics and Human Dignity.  In it, he posed several scenarios of moral complicity, and argued that they are not ethically equivalent.  To distinguish among them, he proposed five criteria:

1)      Timing—Association with a future immoral act is worse than association with one that is past.

2)      Proximity or remoteness—The more closely one is involved, the worse it is.

3)      Degree of certitude—how surely are the facts of the case known?  If not known, does one need to steer clear to avoid the possibility of appearing complicit?

4)      Degree of knowledge of the facts—Knowing them makes one more responsible than not knowing them (although I suppose we should be concerned about hiding behind a sort of “ignorance is bliss” argument).

5)      Intent—or, to be more exact, whether the intent of the person performing the immoral act and of a potentially complicit person are the same or different.

Dr. Orr explicitly rejected the possibility of “hand washing” in an attempt to absolve oneself from complicity (see: Pilate), and he counseled humility in judging the complicity of others.  Finally, he pointed out that hard and fast rules will be elusive, and that sensitivity to issues of the heart is paramount.

Read the whole thing.

On the Value and Importance of “Shared Decision Making”

A physician should make difficult medical decisions in close consultation with his or her patient.

Duh, right?

In America, where we place high value on personal autonomy and open communication, and tend to look askance at paternalism in medicine, “duh” would seem to be the correct response. (Perhaps this is not so much so in cultures where the patient is not even told of certain diagnoses.) But insuring the effective involvement of patients in their own medical decision making is not a simple matter. The information is complex, the situation may be distressing, the messages (from numerous health professionals, the Internet, family members, etc.) may be mixed, and what the patient really wants or values may not be clear—even to the patient.

In medical ethics/bioethics at large, a lot of work has been done on defining a practical, relatively simple, formal framework, with practical tools, to assist the process of “shared decision making” between patient and physician. In part because these kind of communications are hard, and in part, I suppose, because we need to make everything “scientific” or rule-driven, shared decision making, or SDM (everything needs an acronym, too) seems to have become—quite reasonably—a subspecialty within medical ethics.

I am not versed in the SDM literature at all, but I recently saw an article on the subject in the journal The Oncologist. (This journal’s content is generally available for free on the web, and should be easily found with a Google search.)
The relevance of SDM is easily grasped in oncology, but it of course encompasses all of medicine. A more detailed, formal process is recommended if:

1) There is substantial uncertainty about the best medical decision in a given situation, in which case–
2) The decision and its pros, cons, and alternatives are described to the patient (similar to the formal process of informed consent);
3) The patient’s preferences are elicited; and
4) A plan for next steps is agreed upon.

This all seems to make great good sense. The second and third steps seem to me the most challenging. Few people in America are sufficiently “medically literate” to follow instructions for taking their medicines. (I can’t seem to locate the reference right now, but it is true.) Also, medical information tends to be communicated in complex, scientific language that goes over most folks’ heads. Add the constant controversy over medical close calls, and explaining options in terms a person can understand is a substantial challenge for any clinician, especially one who is harried and unlikely to be paid for the time and effort to have the conversation at all.

Further, eliciting patient preferences is NOT seen as a matter of setting up a “what if” game of tradeoffs. Rather, it involves a more personal, complex process of understanding, over time, what really matters to a person and how that will effect medical decisions. End of life care is the most obvious example but the principle applies more broadly. It requires an ongoing relationship that is closer than the episodic encounters most of us have with the modern medicine. It takes a spouse, a pastor, a family, a group of friends who are aware of the importance of such values clarification. It seems necessarily hard—think of how hard it can be just to decide what to have or where to go out for dinner sometimes.

I think that sometimes our attention—or at least, my attention—in bioethics can be preoccupied with extreme cases or prospects. We do well to remain aware that important work on SDM is being done. It seems to me that this work is not particularly worldview-dependent. And given the structural and economic pressures affecting contemporary medicine, we should guard against trends that make it harder for people to engage, with their doctors, in the hard calls about their care.

On the Aging and Passing of the “Francis Schaeffer Generation”

In his fine post yesterday, Jerry Risser wrote that he is “certainly not a proponent of fighting the culture wars of the 1980s and 90s.” He then went on to say that on critical moral issues, we must stand firm. It seems that a loud and growing majority agrees, in a sense, with the first statement, by saying “you social and religious conservatives just go away.” One writer on National Review Online suggested religious conservatives on “on the verge of a new Babylonian Captivity.” These sentiments clearly complicate attempts to stand firm as Jerry exhorts.

My wife and I, who were in our 20s when President Reagan was elected, tended to interpret “faith in action” as activism in support of the “life issues,” notably abortion, to which American Evangelical Protestants had been awakened, albeit belatedly, by the work of Francis Schaeffer, in particular. We are in the “Francis Schaeffer Generation” as much as the “Reagan Generation.” In his book (with Dr. C. Everett Koop) Whatever Happened to the Human Race? (and working against a background of 20th century totalitarianism), Schaeffer urged us to be appropriately alarmed and outraged, and to act constructively. And he warned us against taking lazy solace in “personal peace and affluence.”

Now, the Francis Schaeffer Generation is getting old. Some of its mightiest warriors are dying off (Schaeffer and Chuck Colson, for two, are with the Lord). It’s being told it’s out of touch.

But far be it from me, a nameless foot soldier in the “culture war,” to suggest or admit defeat. To be sure, an angry, clenched-fist, condemnatory stance does not honor Christ or communicate love and respect. But in a world where an unpopular stance on moral issues is considered hatred on its face, no one should bear any illusion that the culture war is over. The secularists will press their advantage. Consider, for example, on abortion: why is it treated not just as a matter of choice but as a public good? Why is any attempt to discourage it labeled as a “war against women?”

What should we foot soldiers do? How about:
1) Double down on Schaeffer’s principles. He was right.
2) Support the leaders and people and organizations on the “front lines.”
3) Recruit, support, and gently persuade emerging leaders of the new generation, who, unlike fossils like me, are “in touch.” This includes future political candidates.
4) Realize that there is still a place for good-old-fashioned litigating and legislating. For example, I read remarks by Richard Doerflinger to the effect that legislative protection of certain conscience rights may be feasible, such as with riders to larger bills that would not be likely to be vetoed.
5) Support “emotional,” “narrative-based” approaches as Jerry suggested. There is an army of emerging, imaginative workers, particularly in the performing arts, who should be encouraged to craft high-quality cinema and other works that engage audiences more thoroughly and gently than “Christian” films that amount to cinematic Evangelical sermons, as nice as these may be.
6) Realize, as Jerry pointed out, that thoughtful, rational arguments can still carry the day. Did we all notice that Massachusetts rejected physician-assisted suicide—by a narrow margin, to be sure—last week, and that some of the most eloquent positions to that end were articulated by people like Dr. Ezekiel Emanuel who cannot be mistaken for religious conservatives?
7) “Change the water.” Recall the old joke about the two young fish who swim past an older one, who asks them, “How’s the water?” They respond, “fine,” then swim on a bit before one asks the other, “What’s water?” We must be aware of the “water we swim in,” and question and seek to change cultural assumptions, where necessary. It seems to me this goes on in our extended families and on our streets, in conversation with people closest to us.
8) Learn about, and teach our kids about science and proper scientific reasoning. Jerry pointed out that “good science” should be embraced. But by that we must mean not only science pursued ethically (e.g., iPSCs vs embryo creation and destruction to get ESCs), but also science done well and honestly, and appropriately interpreted. Anecdotes—even a lot of them—added up and posted on a “scoreboard” do not substitute for properly controlled clinical trials, and we must remember that there is profiteering going on with some uses of adult stem cells, and there have been some cases scientific fraud committed in iPSC research. Examples not to be overemphasized, but they are out there.
9) Above all, pray for God’s guidance and for his truth to prevail, trust His sovereignty, and obey Him as fully as possible, with His help.

“3-4-50,” Bioethics, and the Church

In bioethics, we focus—necessarily, I suppose—on rules and principles to address concerns at the boundaries of human life. Compelling as this may be (How shall we limit the mischief committed in the name of progress? How shall we forge a “grand solution,” if one is even accessible, to ensure that everyone gets the medical care he needs?), I sometimes wonder whether we are barking up the right trees—or, maybe I should say, barking at branches while the trunk rots.

In partial response, I give you Dr. Nick Yphantides: disciple of the Lord Jesus Christ, Chief Medical Officer for San Diego County, and brother of one of the elders of my congregation. He describes how our “health care” is really “sick care” for preventable, lifestyle-related conditions. While many have commented on this, Dr. Nick’s formula is simple—3-4-50:

o Three behaviors—poor diet, lack of exercise, and tobacco use—lead to
o Four diseases—cancer, heart disease, Type 2 diabetes, and lung cancer—which cause
o Fifty percent of deaths—in San Diego and the U.S., and the world (at least, the industrialized world).

Whatever other arguments we have about medicine, ethics, economics, and politics, if we would attend to the “three,” we would do ourselves a lot of good, make ourselves healthier in the balance, and probably dramatically lower the costs of our “sick care.” We can debate that last point, and expensive medicine will not go away overnight, but changing the three harmful behaviors seems common sense about which there is broad agreement.

Oh, by the way, Dr. Nick used to weigh 467 pounds. Now he weighs 194. It’s all described on his website, HealthSteward.com, and his book, My Big Fat Greek Diet. (Note that if you Google on “healthy stewards” you can also pull up websites addressing fitness.)

All well and good—but is there a specifically Christian take on this? I worry about “Christian” approaches that seem more faddish than theologically grounded. My grandparents’ Christian bookstore used to carry a title, The Fat is in Your Head (I think Revell was the publisher), and who can forget the exercise video “Firm Believer” (get it?) from the 80’s?

Well, Dr. Nick’s testimony is that the Christian approach is both simple and foundational—be a steward of the health of the gifts our God-created bodies are. He starts with Jesus’ admonition to the Pharisees to “clean the inside” first, and the outside WILL follow. From there, Dr. Nick proceeds to ground seven “pillars” of health stewardship in love and gratitude. Read more about this on his website and in his book. HealthStewards is a specific ministry for Dr. Nick—“Building the kingdom through shrinking the body,” as he tells me in an e-mail.

It seems to me there is a legitimate Christian stance by which we, in recognition of who we are as God’s creatures, joyfully encourage each other and those outside our community to live more healthily—starting from youth. I think such a stance is gentle and grace-based, not legalistic; that it steadfastly AVOIDS stigmatizing anyone; that it encourages moderation while avoiding some sort of asceticism while also reminding ourselves that gluttony and sloth are two of the Seven Deadly Sins; that it fosters a culture of “personal best” rather than pursuit of some ideal, especially of fitness or beauty; and that it admits of some freedom on the margins (I’m in the Presbyterian Church in America, or “PCA,” which, as the joke goes, stands for “pipes, cigars, and alcohol [or ammo].”)

Two final points, for now: First, I’m terribly ambivalent about the proper scope of government paternalism over all this. I am sympathetic to restrictions on smoking but find Mr. Bloomberg’s limits on soda sizes misguided, for example. Second, while it is tempting to start discussions of “3-4-50” with the costs of “sick care,” I think the usefulness of that approach is limited. Less Type 2 diabetes means less expense to control blood sugar or treat the complications of diabetes, for sure. But coronary bypass and colonoscopy and the latest drug for breast cancer may still be relatively expensive in the U.S., for one, and for another, I read that knee replacements for active seniors are becoming a cost-driver for Medicare.

What do you, readers of this blog, think about all this? For the moment, it’s off to the gym for me. I’m 6’3” and 220, making me 20 pounds overweight by BMI. And I wish, at age 55, that I was built like an NFL safety. Sooooo not gonna happen….

Bioethics, Policy, and “Barking Up the Right Trees”

I suppose I should apologize for writing—now and before—so much about matters related to fiscal policy on a bioethics blog, but the line between them can be blurred when it comes to medicine, bioethics as a field tends to expand its own reach (excessively in my view), and, at the moment, in this election season, fiscal policy is sort of an 800-pound gorilla.

Plus, my attention today is seized by the comments of Bill Gross, the “bond king” from PIMCO, about the “fiscal gap” and the peril it presents to our nation. Briefly:
• The nation’s current total debt is $16 trillion (all numbers approximate in this post);
• The future obligations under Medicare, Medicaid, and Social Security, as they now exist, amount to an additional $60 trillion;
• The Congressional Budget Office, the International Monetary Fund, and the Bureau of International Settlements’ projections imply that, rather than just reduce our budget deficit of $1.2 trillion, we need to cut spending and/or raise taxes to the tune of $1.6 trillion per year, starting soon (as in, now), to get our national debt under control. The alternative is for our central bankers to print money until it’s worthless, and the economy collapses—not in the next presidential term, but in the next generation (10-20 years).

Oh—full expiration of the “Bush tax cuts” would yield $200 billion per year, and the “budget deal” that was said to be so close in 2011 would have yielded $400 billion per year. That is, chump change.

I’ll try to stop soon with the numbers, but if this year’s spending were where Mr. Romney says he will aim (20% of the GDP), that would have “saved” (I try to use the word advisedly, because of the emotional/political overlay of these discussions) $700 billion. If tax receipts were where Messrs. Simpson and Bowles suggested we should aim (21% of GDP), that would have brought in another $750 billion. Getting closer, but not there (but leaving a deficit lower than the 3% of GDP maximum urged by the Secretary of the Treasury). If the current, historically high federal spending ($3.7 T, 24.6%) pertained, total tax receipts would have to have been $4 T instead of $2.4 T, or 26.7% of GDP. Unheard of in our history.

Now, full disclosure: I’m sort of a Paul Ryan fan. But I do believe I am open to “compromise,” and yet, with all the bipartisanism (and grace) that I can muster, it seems to me plain on its face that the U.S. government simply must spend less on health care going forward. I want to believe that approaches like Mr. Ryan’s offer prospect for real reform. On the other hand, “Medicare as we know it” (a rhetorical phrase that spikes my blood pressure) will, if not substantially changed, collapse in my likely lifetime. Or, as Mr. Gross fears, the country will.

Mosey on over to the Hastings Center’s “Over 65 blog” and one can read poignant and thoughtful posts about the physical and financial frailty of old age, alongside rhetorical flourishes against the likes of Ryan, written by Dr. Theodore Marmor (public policy professor emeritus from Yale, single-payer advocate). To be fair, I need to dig deeper, and I’m going to try to study Dr. Marmor’s arguments in a recent “point/counterpoint” series on Medicare reform. But from the little bit I’ve read so far it seems that the most thoughtful people’s positions are entrenched enough that compromise is out of reach not just of our politicians, but of our populace in general.

For the moment, my thought is that the predominant “bioethical” issue for the foreseeable future, at least in the U.S., may be how on earth, if we indeed go “off the cliff,” to handle the care demands of my generation. I wonder if it won’t make worrying about matters like stem cell research and human enhancement seem like luxuries.

And it seems to me that much thinking about this—including several of my past posts on this blog—fail to begin to address the deep shock that will be coming to how we live out our days, how we view our earthly estate, and how Christians can lead the way.

Inspirational Sports Stories and the Values behind Life and Death Decisions

We fret—rightly—on this blog about the values that inform decisions to pursue or not pursue extensive, risky, intensive, and maybe expensive treatments for severe conditions on the “ends of life.” We’ve written about dismissive attitudes toward the disabled, the escalation of some non-life-threatening conditions (e.g., Down Syndrome) to make them hard barriers to treatment, and so on. We worry, as we must, that a functional view of human moral status will be used, too quickly and in a “blunt object” fashion to create and implement rules that would deny treatment unfairly to those among us who are weak.

One source of correctives against this is sports television. We all know about Oscar Pistorius, the Olympic “blade runner.” (I know he raises issues about enhancement, but I cannot see him as anything but a courageous overcomer when the conventional wisdom would have been to write him off.) But consider also Matt Woodrum, an 11 year old with cerebral palsy, featured on ESPN SportsCenter on Aug 26, 2012. All he did was run, and finish, the 400 meters at his school. When he was a neonate, his parents were told they should have made him a DNR. He had been born three months’ prematurely, with brain hemorrhage. The prognosis was grave for him and his twin brother. In case studies, one might have made an argument for withholding treatment. Or consider Jen Bricker, featured on HBO’s Real Sports with Bryant Gumbel, Episode 184 (registration required to view fully on the Web). Jen was born without legs, and abandoned at the hospital by her parents, who didn’t even bother to name her. She was raised by a saintly couple in a tiny Midwest town. They told her never to say “can’t.” She became a gymnast, a champion tumbler. (She also played softball and basketball (!)) Oh, and she turned out to be the sister of Olympic gymnast Dominique Moceanu.

The point is, especially at the beginning of life, to not give up on people, and to require that medical injury be catastrophic indeed even to consider giving up early. We can consider, as I have suggested on this blog, that in old age we might be wise to forego some treatments in some circumstances, but we should have an extremely powerful bias toward treatment early in life, when earthly possibilities still lie ahead. This bias should recall, as I’ve written before, that “million dollar babies” are not a cost-driver for our health-care finance problems.

Sure, after a reasonable trial of treatment, it may be time to withdraw, but the bias should be strong enough that we don’t have to worry, as Joel Belz does in the current issue of World magazine, that the IPAB or some such body will just declare that kids with Down Syndrome don’t get their congenital heart problems fixed. It just should not even cross our minds.

Should We Pay Bone Marrow Donors?

Wanting to write about something different this time…

Every now and then the general press reminds us about an ongoing controversy: should donors of bone marrow—or, more precisely, the early blood cells that are found in bone marrow and are highly useful in certain medical treatments for serious illness—be paid for their donation?

It’s a tricky area. Marrow cells are more like whole blood, plasma, or sperm, in that they are renewable, than they are like organs (your kidneys, heart, or liver) which are not. Agree or no, some blood, plasma, and sperm donors (and, indeed, egg donors) are paid for their trouble. In the U.S., the FDA regulates what’s done with the harvested tissue or cells, and mandates (in the case of blood) that, if a donor was paid, the harvested material is labeled to that effect. The one-day surgical procedure of repeatedly sticking a big needle into the hip bone to get bone marrow is increasingly being replaced by a 5-6 hour process of, as it were, filtering the desired cells out of a person’s blood, and re-circulating that blood back into the person. More is involved, and there are side effects (rarely severe). Still, while the procedure may not be “entirely benign” (to crib from the Perri Klass title), it’s hardly draconian.

Of course, transfusion and transplantation medicine suffer from donor shortages.

And consider that healthy volunteers for studies of experimental drugs are routinely compensated—sometimes to the tune of a few thousand dollars to be in a one- to two-month clinical trial—to cover not just time and inconvenience, but also to recognize that they are voluntarily placing themselves at some degree of risk. IRBs are charged with certifying that those risks are minimized, but they aren’t zero, and some of these volunteers make a living at it as “professional” research subjects.

When it comes to compensation, I’m inclined to think of marrow and blood donors as more akin to those drug-study volunteers than to organ donors. (I do recall that all analogies are flawed, so I don’t mean to press this one TOO far.)

It seems to me that it’s not unethical on its face to compensate marrow donors beyond, say, reimbursing travel expenses. The clearest ethical issues seem to be related to undue influence—would payment prompt someone to take foolish risks, would the profit motive (wherever it sits) swamp any regulatory efforts to be sure that the specimens obtained are safe to use in someone else, would the disadvantaged be preyed upon? These could, in principal, be addressed. Still, there’s significant risk on all three counts. Add to that the objection of the Bone Marrow Registry program—that non-volunteer donors would be more likely to withhold medical information about themselves that would otherwise evade testing but put a recipient at risk—and there are plenty of reasons, on grounds of benefit/risk or justice, not to pay marrow donors.

Beyond that, I am uncomfortable with the underlying perspective that seems to treat the body as a source of something not just to be used, but to be bought and sold. It’s a little disingenuous to be too dogmatic about that, because there are costs to an all-volunteer program. (Those costs might be unfairly shifted in a pay-to-donate approach, say, if a marrow program had to come up with the money to pay the donors.) Still, I think that, on these grounds alone, I prefer the all-volunteer approach.

Primum non nocere. I would not encourage anyone (e.g., a cash-poor seminary student) to donate marrow as a money-making proposition. (Indeed, I wouldn’t encourage anyone to be a healthy drug-study volunteer.) And we need to draw the line somewhere. If we pay for marrow, where does it end? Can we be sure we won’t be pushing to pay for kidneys?

Disability, Dignity, and the Insidious Push for Death

I am sure I should find a better title for this post but I cannot resist the provocative…

If you are not aware of it, make your way over to the website of the Hastings Center Report and the Hastings Center’s Bioethics Forum blog and look, on the main site, at William J. Peace’s article “Comfort Care and the Denial of Personhood” (July-August 2012 issue) and, on the blog, the invited responses to it. Mr. Peace, a paraplegic since 1978, wrote a deeply disturbing account of his encounter with a grim hospitalist who, for all intents and purposes, pressured him to forego antibiotics to treat an infection, on the grounds that the gravity of his underlying and overall condition, and the potential risks—worst-case scenario and otherwise—just weren’t worth it, and if Mr. Peace chose it, he could forego antibiotics and be kept very comfortable in his dying. Of course, Mr. Peace’s disability was construed as a life-threatening illness, which it was not. The patient was, understandably, horrified, as should we all be.

The commentators on the Hastings Bioethics Forum shared this horror. In the process, they decried a general insensitivity on the part of physicians and society at large toward disabled persons; the fragmentation of medical care as currently practiced; a certain overaggressiveness on the part of transplant physicians seeking donated organs; an impatience with intensivists and other physicians in too much of a hurry to declare certain comas irreversible; and a pervasive pressure for patients and their surrogate decision-makers to agree to forego interventions of all sorts for a variety of reasons, among other things. I found little, if anything, to disagree with in these responses to Mr. Peace’s article.

Oh, and they were concerned about a certain tone-deafness of the bioethics community toward the worries and distrust that disabled people live with routinely vis-à-vis the medical “system.”

[And, on the way, they even spoke of “dignity”—that “useless, stupid” concept that I thought mainstream bioethics had dismissed as a reactionary canard wielded like a club against the unsuspecting by knee-walking, knuckle-dragging troglodytes in fealty to the church, the Bush Administration, and other assorted enemies of enlightenment. But never mind that….]

By all means, go and read these—they are thoughtful and, I think, helpful. My two cents in further comment:

1) We are so inured to the notion of a health care “system” that the momentum it has engendered will make the “physician-patient dyad” (as a separate piece in Hastings put it earlier this year) increasingly irrelevant. Physicians employed by hospitals or public entities or other bodies, responsible more for resource-based decisions than the patient’s needs, held to rigid guidelines promulgated from afar, will be more likely to act as agents of someone other than the patient. The separation of the executioner and the healer is being undone, as Margaret Mead feared. An urgent need and opportunity for the church will be to find a way to help people defend themselves against the “system.”
2) For fans of the so-called Affordable Care Act: this is a big reason why some of us fear the IPAB. We don’t trust them. Are we, perhaps, tarring with too broad a brush? Perhaps. But on what evidence might we be persuaded to do otherwise?
3) Ditto for the regrettable over-reaction two years ago about “death panels.” In that, doctors saw hostility toward appreciating their efforts to discuss with their patients some difficult care and end-of-life decisions. Some in the public saw a commandeering of the timing and nature of those discussions. Again, trust—or lack thereof.
4) As I grow older, I am increasingly suspicious of the organ transplantation industry. Why, did you notice that Dr. Robert Truog wrote to the Wall Street Journal back in March that he has not signed his organ donor card?
5) In all of this, I agree with Steve Phillips and Jerry Risser in their reflections about moral agency and moral status.