Tuesday, February 5, 2008

Organ donation and the Slippery Slope: Fantasy or Reality?

There is a length debate at First State Politics on Rep. Pete Schwartzkopf's bill to change Delaware's "opt-in" organ donation system to an "opt-out" system that presumes consent to organ donation unless there is clear evidence of non-consent. Two of the legislators signed on to this bill as co-sponsors are awaiting kidneys themselves.

The idea is that "opt-out" organ donation increases the number of transplantable organs harvested, benefitting everyone in society; many supporters suggest that it is not logical (dead people have no rights) or moral (you are allowing people to die through inaction) to do otherwise.

Some commenters, like me, see a slippery slope toward increasingly nightmarish State intrusions into our control over our bodies. This has not resonated with many of my liberal or progressive friends, who feel that it represents typically paranoid Libertarian thinking, laced with rhetorical fear-mongering questions and devoid of either logic or evidence.

Thus this post.

There are two kinds of slippery slope arguments: intentional and unintentional. In the intentional slippery slope strategy we can presume some group has introduced an initial wedge issue to begin step-by-step progress toward a defined end. Examples of this kind of slippery slope strategy (as visualized by Progressive guru George Lakoff and his Rockbridge Institute) include the Conservative attack on late term abortions and perhaps the introduction of Intelligent Design beside the theory of evolution in American public school classrooms.

The second kind of slippery slope is functional rather than intentional: the logical progression of ideas and policies leads in a specific direction whether anybody intended it or not.

In either case, someone arguing that a potential policy decision leads us toward a slippery slope have an obligation not just to leap to the worst case, but to demonstrate both a realistic progression of steps (and either examples or the proponents thereof) toward that end.

With respect to organ donation I would argue that we are in the midst of a conscious slippery slope strategy led by a number of prominent bio-ethicists and statist politicians.

To wit:

1) Changing from an "opt-in" to an "opt-out" strategy fundamentally changes the nature of organ donation from a "giving" to a "taking," from an act of individual altruism to an enforceable act of social responsibility. Give the gift of life, we have often been urged. In reality, however, when we change the presumption and burden of proof from voluntary giving to assumed consent, we remove that charitable impetus. This also leads to a subtle shift in emphasis on the organ recipient from being someone who is grateful for the receipt of a gift to someone asserting a right to the organs of the recently dead. Most advocates of "opt-in" organ donation prefer to concentrate their argument on the idea that "dead people have no rights," rather than admit that they are expanding a different right: your right to my kidneys under certain (and potentially expanding) conditions. This argument is most often made in terms of a sort of natural right to other people's organs:

Forensic pathologist H.E. Emson contends that since our bodies are “on loan to the individual from the biomass” and constitute “a unique and invaluable resource”, control over cadavers should be vested in the government as a trustee for potential organ recipients.

That at least some commentators see this as an intentional move toward mandatory organ donation is verified by Wired.com:

If mandatory donation is politically unfeasible now, the United States could consider an opt-out rather than the opt-in organ-donation policy, known as "presumed consent" and adopted in various guises in France, Spain, Australia, Belgium and Portugal. (At present, no country mandates that organs must be relinquished at death.) [Emphasis added]

2) This leads to an overturning of the traditional American legal, social, and cultural assumption that individuals have the right to dispose of their own property after their deaths. Once inheritance taxes and outstanding debts have been satisfied, the right of the deceased to control disposition of his/her own property is presumed to control, unless successfully challenged in court. Your body is fundamentally your property and a reserve against State encroachment; this is the principle of Roe v Wade and the right to refuse any treatment (ala Christian Scientists). What advocates of increasingly mandatory organ donation seek to do is portray this traditional normative behavior as "selfish," and to balance it against the "right" of the potential recipient.

This from Urban Semiotic is representative rather than exceptional:

We have mandatory vaccine policies. We have mandatory ages set for driving and for the purchase of alcohol. We have mandatory quarantines for certain illnesses. All those mandates were created to serve the greater good beyond selfish individual interests.

Why not have mandatory organ donations as the default interaction between the living and the dead for the greater goodness in all of us? [emphasis added]

This also from Wired:

Curbing the illegal trade in human organs just might mean scrapping the way we think about the rights of brain-dead organ donors....

Setting up a mandatory system of organ donation would undoubtedly stir protests from around the country. Americans are used to the idea of having a choice over the state of our bodies after death and many people would be irked that the government would be meddling into some of the most sensitive and private moments of a family's life. [emphasis added]

Notice how, in the last quotation, the right to control disposition of your own body after death has subtly been shifted to an idea that we are simply "used to."

3) Advocates of increasingly mandatory organ donation support this reversal of traditional moral and legal reasoning with a utilitarian argument. Opt-in organ donation is preferable because it (a) increases the potential pool of available organs and (b) streamlines the process and saves organs that otherwise might be lost. This argument is usually posited, however, not to support the reversal of rights argument, but as a consequence of that argument already having been accepted, which in truth most advocates know it has not been. Thus the utilitarian argument is used as a vehicle for moving people past the ethical question.

Again, Wired:

"Routine recovery would be much simpler and cheaper to implement than proposals designed to stimulate consent because there would be no need for donor registries, no need to train requestors, no need for stringent government regulation, no need to consider paying for organs, and no need for permanent public education campaigns," wrote Aaron Spital, a clinical professor at Mount Sinai School of Medicine, and James Stacey Taylor, an assistant professor of philosophy at the College of New Jersey, in a controversial article published this year by the American Society of Nephrology. [Emphasis added]

As RN Nancy Valko has argued, this utilitarian argument leads to increased statist regulation of the process, even reporting on hospitals that do not move fast enough to harvest organs:

Other strategies propose changing organ donation rules requiring patient or family consent for donation to "presumed consent", which legally assumes that everyone is automatically willing to be an organ donor unless they have documented an objection to it. Some states already have laws to enforce organ donation if a person has signed an organ donation card, regardless of family objections. A US Health and Human Services (HHS) advisory committee has recommended that hospitals be required to notify organ procurement organizations prior to the withdrawal of life support so that such patients can be evaluated as potential organ donors. In 2002, the Association of Organ Procurement Organizations sent a letter to the head HHS proposing that a hospital's failure to identify a potential organ donor be reported as serious medical error. Financial incentives for organ donation are also being proposed to increase the pool of potential organ donors. Educational programs for promoting organ donation are entering many school systems and especially aimed at new teen drivers. [Emphasis added; footnote numbers omitted]

4) The consequence of this combined ethical-utilitarian argument is a change in the attitudes of physicians and other medical professionals regarding organ donation, making it a consideration in treatment options in medical futility cases. Many American physicians are now shifting toward the presumptive rights of the potential organ recipient weighing the balance against that of the patient or the family, as well as redefining operational definitions of death to make organ harvesting easier:

From a study published in the Annals of Internal Medicine regarding physician attitudes toward PVS [Permanent Vegetative State] patients:

Measurements: Physicians' beliefs about diagnosis of the PVS, patient awareness and suffering, treatment withdrawal, appropriate use of health maintenance and life-prolonging therapies, organ donation, lethal injection, and the treatment they would want if they were in the PVS.

Results: 68% of surveyed neurologists and 60% of medical directors responded. Thirteen percent of responders believe that patients in the PVS have awareness and experience hunger and thirst; 30% believe they experience pain. Fewer than 9% believe that respiratory failure, cardiogenic shock, acute renal failure, or cancer should be aggressively treated. Eighty-nine percent believe that it is ethical to withdraw artificial hydration and nutrition. Almost two thirds of responders believe that it would be ethical to use the vital organs of patients in the PVS for transplantation, and 20% believe that it would be ethical to hasten the patient's death by lethal injection. [Emphasis added]

Again Nurse Valko:

Several years ago, I served on a hospital medical ethics committee and I had several "Maalox moments" when the discussion concerned organ donation.

In one case, a young doctor suggested that we drop the EEG (brain wave) test from the hospital's policy on brain death tests required for organ donation, citing a personal survey he did that showed testing requirements varied -- often widely -- among other hospitals in the area. He maintained his position even after a stroke victim initially thought brain-dead was found to still have some brain activity on the EEG. I was shocked when I found myself alone on the committee when I argued against dropping the test. I was even accused of being "insensitive" to people who need organs in favor of people who were probably going to die soon anyway. [Emphasis added]

From Australia:

MELBOURNE, Australia, October 5, 2006 (LifeSiteNews.com) – Patients designated as in a “persistent vegetative state (PVS)” should be used for medical experiments, according to several top bioethicists, regardless of whether or not prior consent was obtained.

Several articles published in the recent issue of the Journal of Medical debated the potential use of patients with non-responsive brain function for such medical experiments as animal organ transplants—to bypass ethic prohibitions against using a living human being for medical experimentation, some even suggested designating such patients as “dead,” saying their cognitive impairments justified treating them as cadavers....

Dr. Steven Curry of the University of Melbourne, who supports experiments using PVS patients, said it would be too difficult to convince the public that PVS patients were “dead”, according to commentary by the bioethics news watch BioEdge on Oct. 3.

Regardless, he said, their bodies should be used for medical research. Repeating a common fallacy of the bioethics debate on PVS, Curry stated that such patients will not recover. “Those who are in a PVS will not ever wake up, they feel no pain or discomfort and have no continuing interest in their own survival…”

While making the argument that PVS patients have no right to mental autonomy since they have no apparent functioning mental capacity, Dr. Curry excused the medical “use” of their bodies by suggesting such patients should be allowed to choose to donate their bodies for the good of science, saying, “…these patients must also have a right to risk that life for the common good.”

As a further basis for his argument, Dr. Curry stated that PVS patients’ inability to bear children and their lack of any capacity for movement justified the “possible confinement” caused by experimentation.

“Also,” he said, “no risk of withdrawal of consent exists.” While stating that obtaining prior agreement to experimentation would be preferable, he pointed out that such agreements would be unlikely, since few people would anticipate living in a “comatose” state for several years. [Emphasis added]

This last quotation posits a link between the decreasing ethical and legal barrier caused by mandatory organ donation into outright experimentation on living PVS patients.

5) This leads to questions about changes in care for a variety of patients, including the poor. Would people ever be denied treatment or be helped into dying to provide organs? There are some uncomfortable signs that this is a real prospect:

One respected medical anthropologist suggests disturbing implications for poor Americans if we move toward mandatory organ donation:

Nancy Scheper-Hughes, a medical anthropologist at the University of California at Berkeley who has made her career writing about violence caused by poverty, stresses that the current system of organ donation breeds inequalities -- but she is equally wary of a system that doesn't allow people to opt out of becoming organ donors after death.

"Why make everyone pay a body tax?" she asks. "We have 60 million people who are uninsured in this country; why should we force the people who we denied health care in their life to offer up their bodies after they die? The history of transplants has been replete with doctors who have put themselves above the law and (think) that they are ahead of the morality of the time and that society has to catch up with them," she said.

"This proposal doesn't seem to be any different," she added. [Emphasis added]

Bioedge reports that there may have already been cases in America of physicians hurrying death to improve organ donation:

Organ donation can go pear-shaped in the US, too, as the Los Angeles Times revealed recently. According to a report obtained under the Freedom of Information Act, early last year a doctor at a California hospital, Sierra Vista Regional Medical Center, pumped huge doses of morphine and a sedative into a retarded 26-year-old, Ruben Navarro, who had refused to die on time. At least six people, including his treating doctor, looked on and did nothing. Worse still, the doctor, Hootan Roozrokh, a transplant surgeon, was not authorised either to direct Mr Navarro's treatment or to administer his medications. Eventually, the surgeon gave up and Mr Navarro was returned to intensive care, where he died the next morning. His organs were not retrieved. Federal regulators are looking into the case. ~ Los Angeles Times, Mar 2 [before you ask, I tried three times to access the original LA Times story but it is in a pay archive if available at all; emphasis added]

In Singapore this practice has become considerably more common [this post from Catholic Light]:

Singapore's "organ donor policy ... assumes that all citizens are willing donors, unless they have registered with the government that they wish to opt out."

But when the criterion is "brain death", and the medics want those organs, they sometimes tend to hurry the family along:

Sim's family had no objection to his organs being used for transplants but wanted doctors to wait one more day before turning off the life support machine.

But as Sim's 68-year-old mother and about 20 other relatives knelt weeping before the doctors, begging them to wait, nine police officers entered the ward and restrained the distraught family while Sim's body was quickly whisked away.

"The hospital staff were running as they wheeled him out of the back door of the room. They were behaving like robbers," said Sim Chew Hiah, one of Sim's elder sisters. [...]

His parents were offered five years of subsidized hospital fees -- and his family received a thank-you letter from the ministry for their "generous organ donation."

I wish I could be assured that current practice is proper, because I'm not convinced yet that (a) "brain death" is a sound definition of bodily death, or (b) the medical profession can be trusted to make sound ethical decisions. Sad to say, I have opted out in Massachusetts. [Emphasis added]

The definitive study of medical euthanasia in the Netherlands concludes that in situations when doctors are given essentially unregulated control of life and death decisions there is widespread abuse of policies meant to protect patient and family rights:

As one of the main conclusions of the study, the authors express the opinion that “these data do not support the idea that physicians in the Netherlands are moving down a slippery slope.” With this conclusion I agree, but—unlike the report’s authors—I don’t find it reassuring. The 1995 study brought information concerning euthanasia on newborns and infants. The lives of some were terminated with injections. Many others, denied life-sustaining help, at the same time received drugs intended to end their lives. A staggering 62% of all newborns’ and infants’ deaths resulted from “medical decisions.” In 1990 one thousand, and in 1995,nine hundred patients who did not request euthanasia were given lethal injections. Some of them were demented but this did not protect their lives. Many, 140 in 1990, and 189 in 1995, were fully conscious and reasonable, and yet they were not asked whether they wished to live. A number of doctors who in 1995 and in 1990 terminated the patients’ lives without their consent, did so not because the patients could not take it any more but because the patients’ families could not take it. In 1995, as in 1990, relieving pain degenerated into deliberate termination of lives of patients without the latters’ consent or knowledge. Involuntary euthanasia, accepted and acclaimed in the country since 1969, was rampant in 1990 and equally rampant in 1995. Dutch doctors who practice euthanasia are not on a slope. From the very beginning they have been at the bottom. [Emphasis added; footnote numbers omitted]

6) Nor all all organs harvested used for humanitarian purposes. This chilling article from New Zealand highlights an aspect of mandatory organ donation that few in America have discussed:

It's confession time again: the photo at the top of this column is not a true likeness. Some of my lines are missing, erased courtesy of Photoshop technology.

Thinking I'd like this look in real life, I started investigating new dermal filler products. The one the doctor recommended is made with cadaver dermis. It comes in either dissolvable sheets or micronized for easy injection into those tiny wrinkles and skin folds that seem to spring up overnight.

In soothing tones, the doctor assures me there's nothing wrong with using cadaver dermis. Yes, he says, this product is made from the skin of dead people. And, yes, they were organ donors.

But when I ask if the donor's gift of life-saving organs included consent to use their skin in expensive, profit-heavy cosmetic procedures, he's not so confident.

Finally, he agrees that perhaps donors are a little naive about just what it means to have your body harvested for medicine; or just not up with modern medical theory. [Emphasis added]

Notice how this one moves the bar? Organ donation subsidized by the sale of integument to become a cosmetic product. There's the height of ethical process.

7) Mandatory organ donation has led to some horrific consequences in the Netherlands and China. In the Netherlands, I suppose, it's more a matter of offended taste, as when Dutch TV runs a "reality show" about people competing for a kidney transplant.

In China the reality is much more grim.

How about "live" organ banks of condemned prisoners? This from ChinaView:

On September 20, 2007, a Sound of Hope Radio reporter called the Dermatology Department at the Peking University (PKU) People’s Hospital to inquire about a skin transplant. The doctor he spoke with revealed that live skin of the required type is delivered immediately to the hospital from the skin bank.

A doctor from the Transplant Division of the Department, Dr. Li, told the reporter if he needed skin from a third party, there is a state-run live skin bank that can provide a matching donor. Dr. Li also mentioned the skin comes from young living individuals. The following is the recording:

Reporter: “Do you have skin from death-row prisoners?”

Dr. Li: “You mean allograft skin (skin flap from another person)?”

Reporter: “Yes.”

Dr. Li: “Of course we do. We have a bank for skin grafts like that.”

Reporter: “How does the bank work?”

Dr. Li: “Our skin bank stores skin grafts from living persons only. It doesn’t take skin from dead people because the cells are dead and it will be useless to plant it in your body. The skin grafts are kept in a liquid culture media and will stay alive for 24 fours.”

Reporter: “I want skin from a young healthy individual, is it possible?”

Dr. Li: “Definitely.”

Dr. Li also revealed: “The skin banks are supplied by a national network. We order a specific type of skin and it will be delivered immediately from one of the banks. All the banks are integrated and belong to a network approved by the government. There are eight skin banks in the country, one of them is located right here in Hebei Province.”

This live skin bank interview revealed by the PKU People’s Hospital matches the results of an investigation of an international organization. This interview proves that there is a large live organ transplant bank organized by the government. The Chinese government is accused of removing live organs from Falun Gong practitioners or death row prisoners to supply national organ transplantation. [Emphasis added]

What about those Falun Gong practitioners? Kat's Meow summarizes a report by two human-rights activists on this barbaric Chinese government practice:

Kilgour and Matas make clear that they cannot point to any irrefutable proof that the Chinese government is actually harvesting and selling the organs of Falun Gong prisoners, because the government denies it, and tightly controls the access to official information, but the mass of unofficial information and evidence is damning. (Matas and Kilgour's work is meticulously documented.) Such evidence includes taped conversations with hospital staff, in which they used the availability of Falun Gong organs as a selling point for their transplant programs. (Ironically and tragically, the organs of Falun Gong practitioners are desirable because of the good health of the prisoners.) Further evidence is to be found in the many admissions of complicity from Chinese medical personnel. There are even statements made on Chinese hospital websites, touting the availability of live organs. The sheer volume of transplants being performed in China is a clear indication that the government has an organ supply that far outstrips the number of organs made available through accidental death or involuntary donation from non-Falun Gong prisoners. (China has no compunction, it seems, about harvesting organs from those people subjected to the death penalty by its court system, either. Those "donations" are more openly admitted, unlike the "donations" of the people who have simply disappeared throughout China for practicing their religion.) Matas and Kilgour's report also includes interviews with former Falun Gong prisoners, escaped to Canada, whose stories are heartbreaking. The compilation of history, testimony and lack of credible refutation paints a rather complete picture of a situation that warrants grave concern from the world at large, and human rights advocates in particular. [Emphasis added]

Do I believe that the US could ever reach the barbaric situation of the one apparently instituted by the Chinese government? No. But I think that the conditions in the Netherlands are another question entirely.

Moreover, even if we don't go there, it is a profoundly distressing situation to have ethicists, physicians, and other advocates brushing blithely past the issues of giving rather than taking (Why is it people can see the slope with respect to eminent domain but not organ donation?), avoiding the justification of the assumed rights of the potential organ recipients over the existing traditional rights of the original owners.

Moreover, the reluctance of advocates to discuss openly the question of whether or not physicians--who already have documented attitudes toward mandatory donation--can be trusted to administer such a program ethically and responsible is also disquieting.

This is my best shot at convincing you that there is a legitimate slippery slope argument to be made regarding the change from opt-in to opt-out organ donation. Perhaps you don't think I've made the case; if so, Im sure you'll let me know.


David said...

Great post Steve.

I offer one more point; this proposal undermines the family's role in the dying process.

The current system does not assume that you don’t want your organs donated. If you make no decision, it goes to your family. There is plenty of opportunity to harvest organs. What this bill is about is disenfranchising the voice of one’s family in favor of the state.

Does anyone think that is a good idea?

bobby fletcher said...

The Falun Gong organ allegation Kilgour is promoting has been discredited, most recently by Ottawa Citizen:


Here are US government and Chinese dissident investigations disproving it:

1) http://usinfo.state.gov/xarchives/display.html?p=washfile-english&y=2006&m=April&x=20060416141157uhyggep0.5443231&t=livefeeds/wf-latest.html

http://www.usembassy.it/pdf/other/RL33437.pdf (section CRS-7)

2) http://www.cicus.org/info_eng/artshow.asp?ID=6491


Please look into the facts.

Dave said...

There's a simple way to keep organ donation voluntary and put a big dent in the organ shortage -- allocate donated organs first to people who have agreed to donate their own organs when they die.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.

Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.