Kidney allocation changes expected by end of 2014

Cross-posted from Al Roth’s Market Design blog
The board approved substantial amendments to OPTN policy for deceased donor kidney allocation. Implementation of the policy is expected to occur at the end of 2014.
Features of the policy include the following:
  • prioritization of kidneys with longest estimated function to a limited number of candidates expected to benefit the longest
  • wider geographic allocation of kidneys with shorter potential function, to increase utilization for candidates facing a significant mortality risk remaining on dialysis long-term
  • definition of waiting time expanded to include time a patient spent on dialysis prior to waiting list registration
  • a sliding scale of priority for candidates with high PRA, as well as matching of blood subtype A2 and A2B offers for candidates with blood type B, and
  • elimination of the kidney payback system and existing kidney allocation variances.

– See more at:                                                                             https://transplantpro.org/kidney-allocation-changes approved/#sthash.lbHqfgWL.dpuf

Racism in Transplant Denial? Or Too Few Hearts To Go Around?

By Michele Goodwin

Anthony Stokes, a fifteen year old kid from Decatur County, Georgia, is expected to die in a matter of months, according to his doctors at the Children’s Healthcare of Atlanta.  Maybe, they say, he will live for six months.  Who knows?  Anthony suffers from an enlarged, increasingly less functional heart.  His condition is not unusual, and a reasonably effective cure is at hand: a heart transplant. (Learn more about Anthony’s story here.)

However, Anthony has become the latest victim of a dysfunctional U.S. transplantation system, which tempts Americans with a transplant waiting list, but kicks them off if they become too sick or too old.  The problem is that there are too few organs to meet demand, and this perennial problem receives far too little attention from Congress.  Indeed, the U.S. transplantation list, coordinated by the United Network for Organ Sharing, UNOS, (a private organization that coordinates significant aspects of the U.S. transplant system) is so overcrowded that patients increasingly turn to black markets in India, China, Pakistan, South Africa, and other countries if they hope to survive.  (Learn more about that here.) Congressional hearings document Chinese prisoners dying and shortly thereafter Americans receiving organs.

Anthony’s family and some local organizations claim that racism is behind doctors refusing to place the boy on the transplant list.  Anthony is African American.  They ask, what is the harm in letting him on the list?

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Informed consent for organ donation?

By Seema Shah

In my last post, I discussed my view that brain death is not the same as death, but is a status legal fiction to allow organ donation when it is legally and ethically acceptable to treat individuals as dead. There are some important and unresolved questions in the debate on brain death and organ transplantation. In particular, does the public know the truth about brain death? If not, is it ethically acceptable to rely on the consent given by organ donors and their families? Although several surveys have been done on public attitudes towards brain death and organ transplantation, there is a compelling need for more and better data to determine what members of the informed public believe about the relationship between brain death, death, and vital organ transplantation.

Michael Nair-Collins wrote an interesting article recently in the Kennedy Institute of Ethics Journal entitled “Brain death, paternalism, and the language of ‘death.’” He argues that the lack of transparency in obtaining consent for organ donation calls into question whether donors and their family members give valid consent. For instance, he notes that the Department of Health and Human Services website states the following: “Patients who are brain dead have no brain activity and cannot breathe on their own. Brain death is not coma. Brain death is death.” Yet we know that brain dead individuals do continue to have some brain activity, including the secretion of vasopressin, and as discussed in my last post, there is good reason to distinguish brain death from a more traditional, biological conception of death. Nair-Collins raises important concerns about policy makers failing to inform the public with accurate information about brain death in order to try to increase rates of organ transplantation.

What Nair-Collins fails to acknowledge is that by focusing on the information about organ transplantation that policy-makers, doctors, clerks at the DMV, and all those involved in getting consent from potential organ donors, he is only looking at one piece of the puzzle.  Those who have family members who are brain dead have direct access to evidence about what brain death means. They can see for themselves that, with assistance from modern technology, brain dead individuals are warm to the touch, have hearts that beat, lungs that inflate, and in some cases, even have bodies capable of passing through puberty or gestating growing fetuses. No matter what family members are told about brain death, they have the ability to perceive with their own senses the difference between brain death and the conventional image of a dead person as a lifeless corpse. Many members of the public may also be able to see that although brain dead individuals are not actually dead, they are “as good as dead” for the purposes of organ transplantation. Read More

Art Caplan on teen organ transplants

Art Caplan has a new opinion piece up at nbcnews.com. In “Ethicist: Teens have high failure rates after organ transplants — but cut them some slack,” Caplan responds to a recent study showing that teen organ recipients have much higher failture rates than recipients in other age groups:

Remember the long fight over whether Sarah Murnaghan, the little 10-year-old girl from suburban Philadelphia who was dying from cystic fibrosis, should have a shot at getting a transplant from lungs taken from an adult? The fight hinged in part on whether there was sufficient evidence to show that adult lungs would work as well in Sarah, who is still struggling to recover from two lung transplants, as they would in another adult where they would fit better. Some, including me, argued that the best way to allocate scarce lungs for Sarah or anyone else is to determine who is most likely to live if they get them.

That may seem a sensible ethical policy to use when there are not enough organs for all. But there is a new study out that calls into question the merits of an efficacy-only rationing policy.

Read the full article here.

Anthony Weiner, Sexting, Medicalization, and Legal Moralism, Or (To Be Provocative) “What’s So Wrong About Sexting?”

Like most people, I am both amused and shocked by the latest Anthony Weiner sexting revelations and scandal. It is like a car crash where it is hard to look away even though you know you should.

Most germane to Bill of Health’s readership, I am fascinated by the “medicalization” of Weiner’s behavior by some sectors, this CNN clip with therapists is to me a good example. The words “sexual addiction,” “exhibitionism,” comparisons to alcoholism, “not in control of his actions” are bandied about. This to me has fascinating echoes of the medicalization of homosexuality in the 70s and also the medicalization of the choices made by the transgendered. There like here the strategy is fraught. The patient has to perform the “sick role” as a way of excusing himself from responsibility and/or earn governmental support.

The comparison, though, prompts the following question (and yes I am purposefully trying to be provocative so take it with the appropriate grain of salt): As with homosexuality, what is the underlying problem here that calls out for condemnation? Is this merely legal moralism rearing its head again? What’s so Wrong About Sexting?

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Thinking about brain death

By Seema Shah

It astonishes me how many people do not realize the controversial nature of “brain death” and the fact that it is not the same as death. There is a substantial body of literature showing that brain death is not the equivalent of death. The President’s Council on Bioethics issued a white paper in 2008 acknowledging the deficiencies with our current approaches to determining death. The literature on the topic is fascinating—some brain dead individuals have gestated babies successfully to viability and gone through puberty. Many brain dead individuals can heal wounds, regulate their body temperatures, and persist on ventilators for many years. (If you are unfamiliar with this literature and want to read further, see the citations provided below.)

Frank Miller and I have argued that best the way to think about the status quo is that brain death is a status legal fiction, much like the legal construct that a corporation is a person. A corporation is similar enough to a person that it is convenient to treat corporations as persons under the law, rather than writing an entirely new body of law meant to apply to corporations alone. We have argued that brain death is similar to death—Frank Miller and Bob Truog express this by saying that a person who is brain dead is “as good as dead.” For this reason, we can ethically and legally treat the two states in the same way for the purposes of determining death and allowing vital organ transplantation.

There are many open and interesting questions about brain death that I will be exploring on this blog for the next few weeks. Michael Nair-Collins has a recent article in the Kennedy Institute of Ethics Journal that argues that the current approach to determining death in the U.S. is paternalistic and, presumably, unjustified. He cites as evidence the kinds of information that are shared with people deciding whether to become organ donors. But is this true, or is there evidence that the public is able to distinguish between brain death and death? Kenneth Kasper, Frank Miller, and I are investigating this at the moment, and we are finding some surprising answers in the literature. Read More

Replies to the Organ Conscription Trolley Problem

Yesterday, I argued for more aggressive efforts to boost the supply of cadaveric organs available for transplant: If an out-of-control trolley were heading toward a living person strapped to the tracks, we surely ought to divert it to another track, even if doing so will crush a corpse along the alternate path. If we are permitted to crush a corpse when it’s the only way to save a life, even if the family of the deceased doesn’t want us to, then we can recover organs from the deceased when the invasion is fairly minimal (it won’t interfere with burial) and the gains are not one life but several. I emphasized an important qualification, however: we are not permitted to just take organs when we can obtain consent with less invasive approaches, like offering financial or priority incentives.

Commenter SG raised questions about whether trolley problems do a good job of testing our intuitions. There is certainly a lively debate about the reliability of trolley problem intuitions and the reliability of moral intuitions more generally. Despite pitfalls, I believe trolley problems can help us abstract away  morally irrelevant considerations. A family considering donation, for example, doesn’t know whose lives are in the balance. But we know that as a matter of policy, many lives end prematurely because lifesaving organs are wasted. Therefore, the trolley problem I posed helps us removes distractions and confront the loss of life more directly.

Commenter Mitch proposed a variation: Suppose the deceased on the alternate track is your recently-deceased loved one.  I have two replies: First, we need not frame the problem that way in order to draw conclusions about organ donation policy. The destruction of the corpse will be very upsetting to the family, but when we decide public policy, we typically abstract away from who our particular loved ones are. It would bias my hypothetical to stipulate that the living person is your relative, and it would bias the opposite way to assume the deceased was.

Second, even if the trolley problem were posed in this  fashion, you should still flip the switch if it’s the only way to save a living human. (Perhaps families should be excused from blame given that they must  decide under pressure while grieving, but that’s another matter). Interestingly, medical examiners frequently conduct autopsies in which consent is irrelevant. Some of these investigations may save lives by preventing murders. But organ donation is plausibly much more lifesaving than medical investigation.

One last point: It’s easy to think that our choices are to give up our organs or have them stay intact forever. Perhaps mandatory autopsies are viewed as different than conscripted donation because autopsies do not involve a prolonged “using” of someone’s organs. But the “using” happens either way. Your organs can be taken over by bacteria and insects or they can go to save living people. If we were better able to come to terms with such unpleasant facts, we’d more effectively save and heal the living.

[Originally posted to Prawfsblawg]

The Organ Conscription Trolley Problem

Yesterday, Glenn discussed paying people to donate nonessential organs while they are alive. I will argue that we ought to more aggressively incentivize organ donations from the recently deceased.

Imagine that an out-of-control trolley is heading toward an innocent person who is for some reason strapped to the trolley tracks. You happen to be standing near a switch that can divert the trolley to a different track and represents the only available means of saving the person. Here’s where this trolley problem gets much easier than others you’ve seen: If you divert the trolley, it will unavoidably crush the body of an already-deceased person who is strapped for some reason to the diversion track. Are you morally permitted to flip the switch to save a life when doing so will crush a deceased person? Clearly you are. Indeed, you are morally obligated to do so.

What if the family of the deceased is standing nearby and urges you not to, pleading that if their loved one’s remains are crushed, it will interfere with his religious preferences about burial? No matter how much it upsets the family and would have upset the deceased, you are  permitted to divert. Now what if diverting  would save not one life but six or seven? And what if the trolley wouldn’t crush the deceased beyond recognition but would merely cause some internal change that would be invisible at burial? Surely the answers only become easier.

If you’ve answered as I have, we should be permitted to take the organs from the recently deceased when doing so represents the only way of saving the six or more people who need those organs to survive. Does this mean we should implement a routine salvage program where people must donate if they die with organs available for transplantation? Not necessarily. There may be financial or priority incentives that will induce sufficent donation such that we don’t have to go so far as to conscript lifesaving organs. But our current practices cause far to much unnecessary death and misery. See here and here for more. [Originally posted at Prawfs]

Transplant Tourism: Hard Questions Posed by the International and Illicit Market for Kidneys, New Article I Wrote

[Cross-Posted at Prawfsblawg]

The Journal of Law, Medicine, and Ethics has just published an article by me on transplant tourism, that discusses the burgeoning international market for buying and selling kidneys. I review the existing data from Pakistan, Bangladesh, and India, which is pretty deplorable. As I show the vast majority of these sellers are poor and using the money (which is a significnat sum in terms of what they earn, even though in the end only 2/3 is paid) to try to buy themselves out of bonded labor, pay off familial debts, or try to mount a dowry. Many are misinformed or decieved about the health consequences for them and the needs of the person who will receive their kidney. Once they have agreed to sell they are often pressured not to renege. They are often released too soon post-transplant compared to what is optimal for a transplant, and their self-reported health post-transplant is worse. Many experience significant social stigma as a “kidney man” (or woman)and the 20-inch scar (the more expensive way of doing the procedure would reduce the scar size) marks them for life and makes it difficult for them to marry. Most express significant regret and would advise others not to undertake the operation.

Despite these grave facts, as I argue in the paper (and in greater depth for many of these arguments in the chapter on transplant tourism in my new book on medical tourism under contract at Oxford University Press), many of the traditional justifications from the anti-commodification literature — arguments relating to corruption, crowding out, coercion, and exploitation — do not make a convincing case in favor of criminalization. If a ban is justified, I argue the strongest arguments are actually about defects in consent and justified paternalism, on the assumption that criminal prohibition is a second best regulation in the face of the impossibility of a more thoroughly regulated market.

I then examine what means might be used to try to crack down on the market if we concluded we should. I evaluate possibilities including extraterritorial criminalization, professional self-regulation, home country insurance reimbursement reform, international criminal law, and of course better organ retrieval in the patient’s home country.

I will keep writing on this topic, including for my new book, so even though this paper is done feel free to email me your thoughts.

Organ Donation Euthanasia

ELPAT (Ethical, Legal and Psycho-social aspects of Transplantation) is a division of the European Society of Organ Transplantation (ESOT). During the last weekend, the third ELPAT Conference has been held in Rotterdam. It has been a fascinating meeting that has gathered a group of prestigious scholars from many countries around the world to debate several ethical and legal topics involved in transplantation. Glenn Cohen has been one of the key speakers, along with Robert Truog, Alex Capron, Jennifer Radcliffe Richards and many others.

One of the issues which has been hotly debated is “organ donation euthanasia”, a practice that is currently being developed, albeit still marginally, in Belgium, where, as you know, euthanasia is legal since 2002. The issue which intrigued me more is the possibility of adding those organs to the common European pool for their eventual transplantation in a patient from a country in which euthanasia is still forbidden. In a way, our reluctance to such scenario seems to be analogous to the use of organs from executed prisoners. There are even more perplexing alternatives. As is well known, many British citizens travel abroad in order to get euthanasia (Switzerland is the main destination but also The Netherlands and Belgium). Should they also become eligible donors, would it be possible for British citizens to receive the organs? How can we handle that with the allegedly criminal behavior of the travel companions of the “suicide tourist”?

Euthanasia is not permitted in the US, although some States have enacted “aid in dying” statutes. I was wondering, first, if it might be possible in those States to be an “aided in dying organ donor”. What happens if the person who is prescribed the lethal dose requests it? Is it possible to arrange things in such a way that that request is feasible and honored (maybe the individual ingests the pills in an ICU)? Secondly, what about the organs? Should they remain in the State in which aid in dying has been legalized? What do you think?