An unpleasant truth about 10-year-old Sarah Murnaghan’s lung transplant…
…is that her getting it means that someone else won’t get one right now.
Another unpleasant truth about lung transplants (and transplants in general) is that, until we can grow new organs in labs, there will be a finite number available at any time, and that finite number is likely to be fewer than the number of people who need the organs and are waiting for them. So whether you like it or not (and I doubt you like it, and I certainly don’t like it), someone’s going to have to pick and choose among potential recipients to see who will get each available organ. And when one person gets the transplant and, hopefully, lives, another person might just happen to die waiting (nineteen people a day die in the US waiting for transplant organs). And all of this picking and choosing is going on right now and is independent of Obamacare and whatever panels it might establish to further deal with (and interfere with?) the process.
So how should we decide who goes to the front of the line? Well, first of all, it’s not really a line, not exactly:
Specifics of waiting list rules, which can be seen at OPTN website, vary by organ. General principles, such as a patient’s medical urgency, blood, tissue and size match with the donor, time on the waiting list and proximity to the donor, guide the distribution of organs. Under certain circumstance, special allowances are made for children. For example, children under age 11 who need kidneys are automatically assigned additional points. Factors such as a patient’s income, celebrity status, and race or ethnic background play no role in determining allocation of organs.
Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order. In some respects, even the word “list” is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor’s blood type, size and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the “list,” is different each time.
The other major guiding principal in organ allocation is: local patients first. The country is divided into 11 geographic regions, each served by a federally-designated organ procurement organization (OPO), which is responsible for coordinating all organ donations. With the exception of perfectly matched kidneys and the most urgent liver patients, first priority goes to patients at transplant hospitals located in the region served by the OPO. Next in priority are patients in areas served by nearby OPOs; and finally, only if no patients in these communities can use the organ, it is offered to patients elsewhere in the U.S.
Such locally oriented allocation makes medical sense because less time between donor and recipient usually means more chance of a successful transplant as well as fewer logistical complications that could threaten the viability of the organ. Experience has shown, furthermore, that people are more likely to donate organs if they know that other people in their own community will benefit…
Of course, debates about organ allocation will continue as long as there is such a large gap between patients who need transplants and the number of organs donated. Who, for example, should get priority, people who are the sickest or those who have the greatest chance of surviving and achieving a long life? And what is the significance, if any, of someone’s personal behavior? Should a much-needed heart go to a person who was a heavy smoker or a liver to someone who has suffered from alcoholism? These are difficult questions for which there are no easy answers.
Indeed.
There are protocols in place that thoughtful people have devised to deal with these questions, and there is a good possibility that the rule the Murnaghan family was fighting—that children under 12 qualify only for pediatric lungs, although they could do okay with adult lungs instead—had a logical reason for being. I haven’t been able to find that reason, but it makes sense that it would probably be because, although a small child can benefit from adult lungs, an adult can’t benefit from child lungs. So adult lungs would be limited to adult (or teenage) recipients because adults have no other options, whereas children are the only ones who can receive child lungs (not because of the rules, but because pediatric lungs just would not work in larger people).
You may not agree with those protocols, or think they’re unfair or stupid. But then attack the protocols on the merits. It is disturbing to think that organ transplantation decisions might turn into popularity contests, a kind of “American Idol” where the person who can stir up the most publicity wins the grand prize.
I want to make it crystal clear that I am not faulting Sarah Murnaghan’s family or Sarah herself, or even the people whose hearts went out to the little girl and her plight and raised a hue and cry to help her get the lungs that we all hope result in her living a long and healthy life. But aside from the adult vs. child conundrum, was she the only child on the list, or the sickest or most in need, or the best match for these particular lungs, or just the one whose parents were able to garner the most publicity for her?
Marc Siegel’s article, the one from National Review that I linked to at the beginning of this post, seems to ignore these complex issues, as do so many of the other pieces I’ve read on the subject except this one of Ace’s. And although yes, I agree with Siegel that Obamacare would mean that the government will be involved more and more in all sorts of health care decisions about how to allocate scarce resources, and that worries me a lot, I also believe that some entity would have been making more of those decisions as time went on and health care became more and more expensive. That’s been happening anyway, with health insurance companies often being the decision-makers.
I don’t know whom I trust less—the government or the health insurance companies. No, actually I do: it’s the government, sadly enough.
The solution to the socialist induced organ shortages is to introduce free markets into the system.
You will see that when people are dying they and their families will be interested in selling the organs and voila, there will be a dramatic increase in the number of organs.
Also we won’t have to depend on fascist government bureaucrats like Sibelius deciding who will live and who will die.
But who pays for the organ? Is it an auction? Or is it a set fee?
No matter how you do it, any system will have ugly-looking results at the margins. At the statist extreme, you’ll have people (or groups) going through politicians, or as in this case, the media, to get special treatment. If you strictly go by free market economics, old rich people will beat out young low-income people every time.
“It is disturbing to think that organ transplantation decisions might turn into popularity contests . . . .”
I’m not very optimistic about the current state of affairs; I can only see three alternatives:
Neo, as you point out, someone must make a decision with a finite supply, and while no system is perfect, all systems are subject to corruption. All the more so when one’s own life is at stake.
One thing I admire about this blog is its commitment to honesty: first determine what the facts are in any situation and only then give your (conservative or other) interpretation.
Much as I despise Obamacare, the use of Sarah Murnaghan’s sad case to bash the monstrous ACA is almost totally dishonest: eg “Sarah Palin was right. Here are the death panels she warned about.”
Yes, Obamacare is going to put some big dumb government bureaucracy in charge of organ allocation, thus effectively having the power to decide who lives and who dies. But guess what, there already is some big dumb government bureaucracy in charge of organ allocation with the power to decide who lives and who dies (HHS’s Organ Procurement and Transplantation Network (OPTN)). If I had to bet, I’d guess Obamacare will actually make the existing system even worse, but the current system is not good.
———
“Factors such as a patient’s income, celebrity status, and race or ethnic background play no role in determining allocation of organs.”
Somehow I doubt that “celebrity status” is not a factor. For example, Mickey Mantle and David Crosby both went to the front of the line and received liver transplants after destroying their own livers through extreme alcoholism (and drugs in Crosby’s case).
I don’t think I can go with the totally libertarian solution Harold describes, but the current system is basically a socialized one. And like other socialized systems, there are–surprise!–shortages. Providing some kind of significant incentive for people to donate organs would seem to be a step in the right direction.
Another difficult question: Should decisions be made in part based on the worthiness (and by whose standards?) of the recipient? For example, a gang member vs an exemplary youth if their medical conditions are otherwise the same.
It is, I hasten to note, a global market. And the rich do well in it.
China’s been doing a land-office business for years. Rumors still circulate about execution on demand with a clean head shot.
I’m with the National Kidney Foundation, which “opposes all efforts to legalize payments for human organs for use in transplantation”:
More here.
There are many countries where life is held in disregard in a manner similar to our society’s general disregard for the unborn. IMO organs for sale will lead to bounties and there will be those who are willing to collect organs by all possible means. Free and equal access to medicine is impossible. There will be disparities under any system of delivery. Government involvement in medicine, like everything else in life, increase costs; it does not “bend the cost curve”.
I’m not overly fond of the various insurance companies I deal with, but I’ll gladly deal with and pay for private insurance as opposed to dealing with government bureaucracies.
Sarcasm on
Hey wasn’t it great when those on the left let us know Bush was an idiot for suggesting animal human hybrid research? I mean it’s not as though one of the most obvious things you could do with that information would be to take a pig or goat, genetically engineer its surface proteins to be compatible with a human, then implant organs from that now biocompatible animal into a person. (Since of course they knew it wouldn’t work even though they really hadn’t done the experiment to figure out if it would or would not work.)
sarcasm off
To be serious one of the best ways to actually solve this problem would be if we could perfect therapeutic cloning combined with genetic engineering. Too bad everybody seems to hate that.
As usual, Yuval Levin has very sensible things to say:
http://www.nationalreview.com/corner/350270/dont-politicize-organ-transplantation-yuval-levin
I think the free market is the best way to go. As Harold noted, it will first and foremost increase the supply of organs. And with an increase in supply, the price will come down and more people would be able to afford replacement organs.
JuliB: Probably both. While there will be private transactions between willing buyers and willing sellers for a mutually agreed upon price, nothing would prevent a person from auctioning his organs on eBay. Some might choose to donate their organs, just as people donate money and clothing to charity.
Without a free market, we are left with a situation where the supply is limited and somebody gets to choose who gets a transplant and who doesn’t.
Ann:
I have a real problem with that paragraph. It sounds anti-capitalist. “Our values as a society”? That smacks of collectivism.
As long as my body is my private property, how does that devalue my life? It’s my choice whether to sell or donate my organs, or not.
Selection for a scarce resource has been a systemic issue for a very long time. Cast your minds back, if old enough, to the early days (~1972) of kidney dialysis, when there were very few dialysis machines and lots of failing kidneys. Local Boards were established for each machine to pick the lucky few; the Board members were anonymous; most were local community folks.
The egalitarian selection criteria have not changed in the past 40 years, though now applied to transplants only, since dialysis access ceased to be a limiting factor. Any type of market factor was deemed unethical then, as now. An old bum was the equal of a young and otherwise fit person from the selection standpoint; the only commonality was that both had end-stage renal disease.
So we are left with the market fact that it is OK for a Chinaman to sell one of his kidneys, but such buying or selling is not allowed to Americans for Americans. Donations only, please!
(As an aside, I do not get Neo’s complaint about health insurance companies in this context. Why are we mixing reimbursement issues into a discussion about the donation of organs?)
“As long as my body is my private property, how does that devalue my life? It’s my choice whether to sell or donate my organs, or not.”
Yes, that is your right. However, that will not be the salient issue if there is a free market for organs. If there is a global free market for organs, organs will be harvested by force. Hellfire, there are certain zones in the USA were organs for transplant will be harvested by force. Rival gangbanger organs will become a money machine equal to cocaine. Never under estimate the potential for a black market to develop where there is a scarce or lucrative commodity.
parker Says:
June 19th, 2013 at 8:20 pm
If force is involved, then it is by definition not a free market. A free market means willing buyers and willing sellers, trading voluntarily.
I know that our society is moving away from the free market. The key phrase in my earlier quote was “as long as”. In a socialist/communist/fascist/collectivist state, my body is not my own and in fact belongs to the state, which can harvest my organs on demand against my will and give them to cronies in the nomenklatura.
I went through the initial process representing a friend of mine who was in a drug induced coma. When I went before the transplant committee. they laid it out very simply. That someone will die without it is not considered as everyone on the list will die without an organ. Next the organ goes to whoever will provide the best home for it. Therefore drug and alcohol abuse, bad. Attempted suicide, bad. Other health problems, bad. Also the recipient must meet a certain minimum health standard since it is a waste to give it to someone who may still die of other issues.
By using a criteria of what is best for the organ much of the conflict about who is most deserving goes away.
Glen says:
“By using a criteria of what is best for the organ much of the conflict about who is most deserving goes away.”
I disagree. If, in algebraic terms, you can solve for X, it does not matter if your starting point is the inverse of X.
Glen,
I do think ‘the best home’ for the organ is a clarifying point of view. After all, if the organ does not survive in its new environment, neither does the recipient. And if the recipient dies prematurely for other reasons, the organ then dies without helping anyone.
To some extent that approach is also responsive to the problem of worthiness I posed above–how to choose between a gang member and an exemplary student if the medical conditions are otherwise the same. It might not help in the choice between a college student genius and a high school drop-out of average intelligence, medical conditions otherwise equal.
Although I would consider worthiness a valid criterion, I can understand the argument against making such a judgment.
rickl,
It has been a long, long time since there was a market remotely ‘free’ in this country. However, in the past ‘free markets’ have not been immune to the use of force in various forms. So while I favor as few regulations as possible on markets, I recognize some level of oversight is necessary in the market place.
Organs for transplant are a matter of life or death. When life or death is on the line many people will be willing to do anything to meet the demands of that market.
The ‘best home for the organ’ strikes me as not facing the thorny ethical issues involved. The ‘best home’ will always be the otherwise healthy (not necessarily a Sarah: cystic fibrosis involves other organs too, not just the lungs) and the young. This leads to the same problem as Ezekiel Emanuel’s QALY (Quality-Adjusted Life Years) approach to health care rationing. By definition, the more sick are flushed in favor of the less sick, the older in favor of the younger. The chance of benefit is greater that way, you see….but the morality dilemna is avoided.
Jim Nicholas
“It might not help in the choice between a college student genius and a high school drop-out of average intelligence, medical conditions otherwise equal.”
No system is perfect. However as the chairman of the transplant committee told me, my friend’s case was the first in over a thousand cases that he had been involved with that was not obvious.
This makes sense since they can only consider those that are on the list at that time. Once you start eliminating based on local, compatibility, current and past health conditions, smoking, drugs, alcohol, suicide attempts, and other criteria what’s left may is not likely to be very many.
In fact it is probably not going to be between two good choices but two bad ones. Such as a 70 year old in excellent health who was hit by a drunk driver and a 45 year old who has been smoking for 30 years and needs new lungs. I vote for the 70 year old.
“By treating the body as property, in the hope of increasing organ supply, we risk devaluating the very human life we seek to save. ”
I think if you analyze this statement, Ann, you’ll find that you are claiming that saving life (by increasing organ supply) devalues life.
Neo-neocon, an excellent post. The organ-transplant system should not be hijacked by a popularity contest. On the other hand, Kathleen Sibelius is not the person who should be able to override the system, especially in the light of the IRS targeting scandal.
Death Panels will be part of any healthcare system that is not entirely dependent on patients paying their own way. The advantage of a corporate death panel, versus a government death panel, is that you can choose which corporate panel will be overseeing your case, and they are beholden to you as a customer. The government does not allow for competition, and ensuring the government a monopoly is what Obamacare is ultimately about.
Corporate death panels are beholden to profit, and profit is controllable when the money comes from the tax payer.
The government death panels are beholden to power. No single citizen has a candle’s light of power compared to the nuclear furnace of the United States federal government.
If ever that proved not the case, civil war would already be here.