Shades of Personhood: A Worry About Definitions of Death for Transplant Purposes

Although brain death, which is an “irreversible cessation of all the functions of the brain, including the brain stem” (see article), has been used as a pretty safe definition of a person’s death, transplant advocates are calling to revive a different definition of death, namely cardiac death or circulatory death, which is “an irreversible cessation of circulation and heartbeat and breathing” (see article).  In such cases, CPR is not performed and after a short wait, organs are removed.  However, the problem is that there is no guarantee that the heart won’t restart by itself, so the question of how long to wait becomes a tricky one.  Some hospitals wait five minutes while others only two.  The trouble with waiting too long is that organs cut off from a nourishing blood supply cannot last very long.  Surgeons in Michigan are starting to place donors on ECMOs (heart-lung machines) even before the donor’s heart stops beating.  This ensures that the organs are not deprived of nourishment, but it also further blurs the line between life and death.

The Michigan doctors say the approach is a blessing. Family members have more time to say goodbye and a chance at getting some solace from their loss.  “They are so pleased that the last act of the person’s life on Earth was to donate organs and save other people’s lives,” Punch said.  Transplant surgeons say the chance to turn a death into an opportunity for life is a godsend. (See article)

Defining death is not as straight forward as it might seem.  Of course, there are certainly clear cut cases.  Taking a stroll through a cemetery reveals hundreds such cases.  However, the moment that marks the exact boundary between life and death is much harder to define.  Perhaps this is because there is no such moment, death being a process of a certain duration.  Technological advancements such as ECMOs, however, can extend this process far beyond the short period it would normally take.  Are such patients essentially in a state of dying, but not really dead or are they essentially alive due to the fact that the process of dying had been interrupted by the machines?

Just because machines are doing the breathing does not mean that the person is dead.  By that definition, artificial hearts or pace makers would make the people who have them into walking corpses.  Also, just because someone is in a coma, does not mean that they are ready to be harvested for organs.  Perhaps an argument for the practice of recirculating blood in order to keep organs nourished hangs on the irreversibility of the donor’s condition.  But again, not only is “irreversibility” not a certainty in all cases, but irreversibility itself does not seem to be reason enough to harvest organs from a living human being.  We don’t generally think that extracting organs from patients in permanent vegetative states is permissible, even if such states are by definition irreversible and if such patients happen to be organ donors.

This is certainly a tricky question, especially since the patients involved are donors who have agreed to donate their organs after they die, but unless their advance directives state that organs are to be extracted while alive as long as it happens at the discretion of the doctors or family, the problem with the definition of death will continue to be an issue.  Citing the number of lives that can be saved by the practice of extracting organs from a living person (even if irreversibly damaged), should not be used as an argument for such a practice particularly since the same argument can apply to extracting organs from any living person (I have in mind the classic objection to utilitarianism here).

I am not entertaining slippery slope worries, but I think that it is important to stress that the subtle details regarding our practices of extracting organs for transplantation should be thoughtfully considered, reasoned through, and explained.  One moral worry I have is that such patients may not be viewed as persons by doctors eagerly waiting to extract vital organs in order to save the lives of other (more obvious?) persons.  Can what the Michigan doctors are doing be done with a genuine air of respect and dignity that is owed to persons?  Perhaps it can, but the reasons for such practices must reflect this respect and dignity.  I am simply not convinced that, at least in all cases, merely focusing on what the family and other patients get out of it constitutes reasons that are saturated with genuine respect for the personhood of the donor.

What Sorts of People Should There Be? Do the Deceased Qualify?

When the Social Security Act was being written by Congress in 1939, no one thought that it might be possible to conceive a child posthumously.  In 2003, 18 months after the death of her husband, Karen Capato, a Florida resident, gave birth to his (her husband’s) twins (see article).  Robert, Karen’s husband, preserved his sperm in a sperm bank and gave written consent for its use by his wife before he died.

After her husband’s death, Karen applied for social security survivor benefits for the twins, but was denied because Florida laws recognize the eligibility of inheriting property only if the children who are to inherit property are named in a last will and testament.  This apparently also translates into an ineligibility of the twins to receive survivor benefits.  Robert could not have written the twins into his will because he did not know that they were going to exist at some point in the future.  Regardless of whether or not he discussed possibilities with his wife, he had no way of knowing the genders or the number of children he would father posthumously.

There is, to my mind, a question of whether Karen’s twins can really be called “survivors” since they did not literally survive their father.  And since it was Karen’s own choice to have them after her husband was already dead, perhaps counting on survivor benefits for aid was a tad premature and maybe even irresponsible.  These worries aside, however, it is interesting to live at a time when technological advances create such problems for the legal system.  After all, there is no question regarding biological parentage in this case.  Half of Robert’s DNA had been willingly transferred to a future generation.

While thinking about what sorts of people there should be, we think in terms of human variation.  However, we don’t always stop to consider why a variety of humans are “people” in the first place and what exactly makes them into “people.”  It would be difficult (and likely hopelessly so) to argue that a sperm cell is a person.  And yet, at the time of conception, that was all that remained of Robert.  I would think that it would be absurd to insist that Karen’s twins are essentially fatherless (it is true that their father is dead, but it is not the case that they have not been fathered).  It would be equally absurd to think of the doctors who prepared the fertilized egg as fathers (the medical team has no parental responsibilities toward the twins).  Although the twins were not a result of sexual intercourse between Robert and Karen, their conception is an instance of sexual reproduction (Robert’s and Karen’s genetic material is present in equal proportions in the resulting offspring).  So when asked who their parents are, the twins should refer to Robert and Karen and not just Karen or Karen and the hospital staff or even more absurdly to Karen and Robert’s sperm.  So did Robert father the twins?  I’d say he did!  If that’s the case, then does he qualify to be represented under the general question of what sorts of “people” there should be?  When we think about human variation, do the dead count?  I think they do!  If, by recognizing all kinds of people as “people,” we implicitly assume that we have duties toward them, then by making conceptual space for Robert and other deceased individuals (this also includes all of us at some point), we ought to recognize our duties toward the dead.  Perhaps that should inform the court’s decision in the case of the twins even if they are not literally “survivors.”

Haraway and the (Im)possibility of Cyborg Eugenics – Presentation by Joshua St. Pierre

Last week, on March 23, 2012, Joshua St. Pierre, one of the summer interns from the Living Archives Project who is currently working on his MA in Philosophy at the University of Alberta, gave a presentation entitled, “Haraway and the (Im)possibility of Cyborg Eugenics.”

His abstract from the conference is as follows:

While the discourse of so-called “new eugenics” is becoming increasingly popular in cyberculture, I argue that new eugenics is discussed as a mere technological overlay of pre-existing eugenic ideologies, ideologies undercut by “A Cyborg Manifesto.” Donna Haraway’s cyborg resists the natural and essential properties (racial, class or genetic purity, normalized categories such as “feeble mindedness,” or binaries like primitive/civilized) which made twentieth century eugenic programs, and by extension new eugenics, possible. However, Haraway’s politically and eugenically resilient cyborg opens the possibility for a “cyborg eugenics” proper.

Instead of essential properties, Haraway argues that human diversity and biotic components must be conceived of in terms of “design, boundary constraints, rates of flow, systems logics, costs of lowering constraints” (162). Thus, the Harawaian cyborg translates the modern concepts of ‘eugenics’ and ‘perfection’ to the concepts of ‘population control’ and ‘optimization’ (161).  While the terms ‘optimal’ and ‘population control’ lack the totalizing ideological overtones of a “master race” or the “feeble minded,” such categories force the choice of what sorts of people there should be, fragmented or not, and therefore what sorts of people there should not be.

Paralleling Hannah Arendt’s account of the banal holocaust logistician Adolf Eichmann, I argue that cyborg eugenics arise indirectly from the non-reflective fixation of the cyborg on optimizing technical problems. The Harawaian cyborg thus resists forms of eugenics rooted in claims of nature, telos or purity, but is seemingly unaware of the dark eugenic possibilities latent in the language of instrumentalization and optimization.

 It was a very interesting presentation, that provided a lot to think about in terms of the role of eugenics as modern technology evolves and becomes incorporated in the human, and the role of eugenics in posthuman literature.

The Unhealthy Side Effects of Mixing Medicare with Big Business

Cancer drug shortages in the United States are putting lives at risk, especially when treatments require regular dosages over extended periods of time.  Alice Park of Time Magazine writes:

In late February, when Divers called the hospital to confirm Alyssa’s upcoming chemotherapy treatment, the nurse informed her that there was a drug shortage. The hospital couldn’t be sure that there would be enough methotrexate — the cornerstone of therapy for some childhood cancers, including leukemia and osteosarcoma — to treat Alyssa, now 10. Divers was told she might have to reschedule the session; the hospital would let her know. “It made me sick to my stomach to hear that,” says Divers, a former chaplain from Palmyra, Va. “Alyssa was in treatment for over a year already, and the last thing you want to do is add unnecessary delays in treatment, which gives the cancer a chance to catch up.” Divers explains that her daughter’s cancer doubles in tumor load every 34 days, “so you need to hit it again and again to eradicate it.” (See article)

And this is just one of the many cases.  But what is causing these shortages?  Although this is not the whole story (since the big picture is a bit more complicated, including procedural issues with FDA inspections), a substantial portion of the problem is caused by the economics of drug supply.  One thread of the economic story goes something like this: in order to make chemotherapy treatments easier for patients, doctors began offering infusions in their offices rather than in hospitals.  The 2005 reimbursement scheme, however, allowed doctors to be reimbursed at a 6% profit.  The problem was that the reimbursement price lagged behind the market prices by six months, which made the reimbursements lower than what the doctors paid for the drug, essentially pushing some physicians to prescribe pricier brand name drugs.  This, in turn, amounted in lower orders of generic drugs, which further shrank the market.

“In order to gain market share, companies underbid the market to get the business, and it’s a race to the bottom,” says Dr. Len Lichtenfeld, deputy chief medical officer for the American Cancer Society. “Whoever is the last company standing can’t charge enough to make a profit on the drug and to make needed investments to keep making the drug.” That’s what may have happened with the methotrexate that Alyssa Divers depends on. (See article)

To add to this incredible situation, once the drug shortages were publicized, doctors started receiving offers from distributors, with stockpiled stashes of the harder to get drugs, who were very happy to sell the medicines, charging “$800 to $900 per gram for a medication that normally costs $16” (see article).

I guess that one way to respond to this is to blame the government for its untimely reimbursement policy, which certainly makes me wonder (why is there a six month lag in the first place?).  What really puts a bad taste in my mouth, however, is how intimately the production of pharmaceuticals is linked to the administration of treatments that use certain drugs.  When a profession views itself as essentially helping humankind by caring for human well being and health and when the societal respect is accorded to this profession for such reasons, it is more than disheartening to find out how closely some such professionals can resemble mere pedlars of life when viewed in light of their business connections to pharmaceutical companies (which seem to have no moral qualms about charging 56 times the market worth of a life-saving medicine).

Tommy Douglas, young eugenicist

from The National Post, by Michael Shevell

This NP article is itself taken from a longer article in the January 2012 issue of the Canadian Journal of Neurological Sciences.

Though bespectacled and slight of build, Tommy Douglas is a giant of 20th Century Canadian history. His iconic, indeed mythic, status within the Canadian historical landscape is exemplified by his selection, in 2004, as “The Greatest Canadian” in a CBC-mandated competition above such luminaries as former Prime Ministers Pierre Elliot Trudeau and Lester Bowles Pearson, scientist Frederick Banting, and hockey great Wayne Gretzky. This honour reflects Douglas’ role as the “father” of Canadian Medicare, which has emerged, for better or worse, as a defining feature of a Canadian national identity.

Medicare has in effect emerged as a statement of national values. Values that include compassion, fairness, tolerance and equality; values that are not selectively applied, but are extended to embrace even the most vulnerable of Canadians.

Eugenics, by contrast, concerns itself at its most fundamental level with the selective breeding of humanity to improve the human species. At a practical level, eugenics in the 20th century involved the removal from the gene pool by various means those classes of individuals considered “inferior stock,” whose deficits had an inherited basis that was immutable for future generations. These classes included those suffering from mental illness, intellectual disability or what was characterized as social diseases (e.g, alcoholism, delinquency).

The broad principles of universal-access medicare contradict those that can be utilized to justify the practice of eugenics. It would be paradoxical for an individual to support both. Yet Tommy Douglas did so with moral persuasion. Careful analysis of this contradiction reveals with hindsight further paradoxes that merit consideration. … read more

CCD Calls on Global to Stage Follow-up Episode

Recently, Dick Sobsey wrote about the Live Euthanasia Debate airing on Global Television’s 16 x 9 program.

The show, “Taking Mercy”, also featured a Live Blog including comments from several members of the What Sorts Network.

Alex Schadenberg, Executive Director with the Euthanasia Prevention Coalition, wrote a post condemning the one-sidedness of the show and comparing the “propaganda” in the 16 x 9 episode with the eugenic attitudes that led to the Nazi euthanasia program.

The Council of Canadians with Disabilities has also responded to the lack of an opposing perspective in the so called “debate”. The CCD is challenging Global to stage a follow-up episode.

We are challenging Global, in the name of journalistic balance, to stage a follow-up episode featuring persons with disabilities who want to live and who see a danger in opening up the debate on euthanasia. Only good can come from providing an opportunity for a broader, fairer public discourse.

If you agree that the perspective of those opposed to euthanasia should be represented in a follow-up episode, please take a minute to write to Global representatives at the addresses listed in CCD’s response to “Taking Mercy”.

Rick Santorum and prenatal screening

For those that missed the controversy, towards the end of February Rick Santorum (current candidate for the Republican presidential leadership bid) argued that,  ” a lot of prenatal tests are done to identify deformities in utero, and the customary procedure is to encourage abortions.” His argument was roughly as follows: since prenatal screening leads to an increase in abortions, and since abortion is morally reprehensible, the morality of prenatal screening should also be considered. He was also, however, making the point that prenatal screening leads to a new form of eugenics — one that targets a fetus which exhibits abnormalities and deformities which are deemed undesirable. These arguments set off a firestorm of controversy.

Emily Rapp wrote a reply, “Rick Santorum, Meet my Son”, in which she claims that if she had determined that her son would have been born with Tay-Sachs (as he was), that she would have chose to abort her fetus.

 If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision.

But it seems like both sides are talking passed each-other a bit here. It seems necessary to recognize the potential dangers for a form of newgenics — something that can be informed by our understanding of the history of eugenics, and the ways in which new technologies can reassert these tendencies. But it also seems necessary to recognize the potential value of pre-natal screening technologies, and to recognize the very real pain that diseases like Tay-Sachs impart on the child.