For anyone interested, here is the URL to the Albertan Canadian Paraplegic Association’s online newsletter Wheel-E. You can subscribe to Wheel-E via email or phone (780-424-6312 for local calls or 1-888-654-5444 for toll free phone calls outside of Edmonton). If you have announcements you would like to post, you can submit them via the email address (the deadline for submission is the 26th of each month).
Eva Feder Kittay, Distinguished Professor of Philosophy at Stony Brook University and Senior Fellow of the Stony Brook Center for Medical Humanities, Compassionate Care, and Bioethics, has been awarded a Guggenheim Fellowship to complete a book tentatively titled Disabled Minds and Things that Matter: Lessons for a Humbler Philosophy. The prestigious fellowship, which places Professor Kittay in the company of many illustrious names, which also includes a lengthy list of noble prize laureates (Czeslaw Milosz being a particular favourite of mine), was established in 1925 and is granted to individuals whose work makes substantial contributions to education, literature, art, and science. Professor Kittay’s work pushes philosophical discourse beyond the inadequate rationalistic framework that has traditionally been utilized to measure the worth of persons. She urges that actual relationships of care and love characterize who we are and why we are morally considerable. Equipped with both the argumentative and analytic tools of a philosopher and the personal experience of being a parent of a child with severe cognitive disabilities, Eva Kittay is in a unique position to play the part of a competent judge whose insights have great philosophical, and more saliently, educational value. Although Disabled Minds and Things that Matter: Lessons for a Humbler Philosophy will be a philosophically rigorous contemplation on the place of disability in philosophical discourse, it will nevertheless be aimed at the educated lay reader, meaning that it will not only shape future philosophical projects, but will also serve to educate the public.
Why is a focus on disability important to the future of philosophical research? Taking severe cognitive disabilities into account when formulating questions in philosophy will force us to reframe both traditional and contemporary inquiries. For example, the rationalistic model of personhood inherited from Aristotle and Kant as well as the numerous individualistic psychological accounts of diachronic personal identity that have been developed since Locke’s Essay Concerning Human Understanding will have to give way to other, more inclusive models and accounts that better represent the relational nature of memory, personhood, and moral status of human beings. Relational personhood and an extended account of personal identity, which is the focus of my own research is indebted to such fundamental reframing of philosophical questions by placing the interests of individuals with severe cognitive disabilities at the centre of our philosophical contemplations regarding the moral status of persons. If placing disability at the centre of philosophical inquiry helps philosophy transcend its current theoretical bounds, then not only is Eva Kittay correct in suggesting that disability is at the frontier of philosophy itself, but Professor Kittay and those her research project inspires to work at the intersection of philosophy and disability studies are forging a new philosophical direction in the time honoured spirit of philosophical innovation and transformation.
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.
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.”
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).
Dr. Stefan P. Kruszewski, in an opinion piece written for ABC News entitled “Doctors’ Conflicting Interests Can Cost Money and Lives, and Hinder Medical Discoveries,” warns against the danger of medical practitioners recommending specific drugs as part of treatment while being paid to speak, advocate, and do research for the companies that manufacture them.
After writing a letter expressing concerns about such practices to the Journal of American Medical Association, the associate editor responded (via e-mail) by shrugging such concerns off as trivial.
During the review process, an associate editor at the journal asked the question (and inadvertently copied me on an email that had been sent to another associate editor), “What’s the big deal? What’s all this [expletive deleted] about conflicts of interest?” (see link)
Kruszewski, however, thinks such practices are actually very dangerous. He writes:
But I do worry, because drug promotion and clinical decision-making that are brokered on the backs of dollar bills have a greater chance of causing serious adverse outcomes, including illnesses and death. If a physician embellishes the effectiveness of a drug or minimizes its risk, that directly hurts you and me. Physicians who are heavily supported by pharmaceutical companies and medical device makers are not forming independent, unbiased decisions. Instead, their brains have been lined with gifts, perks and money, which influences their rose-colored opinions. (see link)
The conflict of interest does not stop at Dr. Kruszewski’s worries and the problem he points to can unfortunately be traced to the DSM (The Diagnostic and Statistical Manual), which is an authoritative taxonomy of mental disorders. Worries of financial conflicts plagued the fourth installment of the DSM (the DSM IV) and with the DSM V on the horizon, similar criticisms are voiced.
The manual, published by the American Psychiatric Association, details the diagnostic criteria for each and every psychiatric disorder, many of which have pharmacological treatments. After the 1994 release of DSM-4, the APA instituted a policy requiring expert advisors to disclose drug industry ties. But the move toward transparency did little to cut down on conflicts, with nearly 70 percent of DSM-5 task force members reporting financial relationships with pharmaceutical companies — up from 57 percent for DSM-4. (see link)
The greatest risk of conflict of interest remains with the taxonomizing and eventual diagnosing of disorders that are intimately linked with the manufacturing of drugs intended to treat these disorders. Katie Moisse writes:
Some of most conflicted panels are those for which drugs represent the first line of treatment, with two-thirds of the mood disorders panel, 83 percent of the psychotic disorders panel and 100 percent of the sleep disorders panel disclosing “ties to the pharmaceutical companies that manufacture the medications used to treat these disorders or to companies that service the pharmaceutical industry,” according to the study. (see link)
This is not to suggest, of course, that medical professionals have malicious intent or that they are only interested in the health of their own bank accounts. However, there remains a serious worry about the taxonomy itself as well as about future diagnoses and treatment. To add to the turbulent atmosphere surrounding the DSM V, the introduction of certain new diagnoses has also been criticized.
The DSM-5 has also drawn criticism for introducing new diagnoses that some experts argue lack scientific evidence. Dr. Allen Frances, who chaired the revisions committee for DSM-4, said the new additions would “radically and recklessly” expand the boundaries of psychiatry. “They’re at the boundary of normality,” said Frances, who is professor emeritus of psychiatry at Duke University. “And these days, most diagnostic decisions are not made by psychiatrists trained to distinguish between the two. Most are made by primary care doctors who see a patient for about seven minutes and write a prescription.” (see link)
I think we have a serious problem on our hands if drug companies get to determine the taxonomy of mental disorders and medical doctors diagnose and prescribe drugs in accordance with the financial interests of these drug manufacturers. Even if things are not as bad as they sound, they seem to be getting worse (“with nearly 70 percent of DSM-5 task force members reporting financial relationships with pharmaceutical companies — up from 57 percent for DSM-4”). Should we start going to the accountants of pharmaceutical companies for advice? Now that would be absurd, but if pharmaceutical companies have as much sway over what is defined as a mental disorder and what treatment is pursued as Moisse suggests, then perhaps we might as well just bypass the middleman (the local mental health professional) and go directly to the source! Why are individuals who are directly funded by drug manufacturers allowed to make executive decisions on the DSM V? James Scully, APA director, sees no other way.
APA medical director and CEO Dr. James Scully insisted the DSM-5 development process “is the most open and transparent of any previous edition of the DSM.” “We wanted to include a wide variety of scientists and researchers with a range of expertise and viewpoints in the DSM-5 process. Excluding everyone with direct or indirect funding from the industry would unreasonably limit the participation of leading mental health experts in the DSM-5 development process,” he said in a statement. (see link)
Lisa Cosgrove, associate professor of clinical psychology at the University of Massachusetts-Boston is of a different opinion:
Cosgrove said she believes there are plenty mental health professionals with no financial ties to drug companies. If necessary, experts with conflicts could still participate in the process as non-voting advisors, she said. “My best hope would be for the APA to respond in a substantive way to the concerns we’ve raised,” she said. “They have an opportunity here to make a correction that would give the appearance, if not the reality of developing a diagnostic instrument that’s objective and has integrity.” (see link)
I hardly think that the mental health professionals with no financial ties to drug companies live at or just above the poverty line, so why, unless a researcher is explicitly doing research for a certain pharmaceutical company, does the profession open itself to such criticisms by allowing the kinds of practices Kruszewski and Cosgrove object to?
Argentina’s strict anti-abortion laws got a minor make-over recently, as the Supreme Court of Argentina has ruled that rape victims will not be persecuted for having abortions. The supreme court unanimously backed the decision of allowing a 15-year-old girl, who endured years of sexual abuse by her stepfather, to terminate her pregnancy. “However, the judges said that their decision was not part of a discussion about the legalisation of abortion in Argentina, but just a clarification of existing laws” (see article).
The controversy was centred around Section 2, Article 86 of the Argentine penal code, which states that “abortion is not a punishable act ‘if the pregnancy stems from a rape or an attack on the modesty of a woman of feeble mind’” (see article). The horrible suffering of the poor 15-year old aside, it is interesting to note that the Argentinian law’s phrasing includes “feeble mindedness” in its allowances for legal abortions. Curiously (and I think quite tellingly), the point of debate in interpreting the law had to do with whether or not all rape victims or just those who are deemed “feeble minded” should be allowed to terminate their pregnancies.
Now, putting the phrase “feeble minded” in the sentence cannot have anything to do with informed consent (and the fact that some individuals might be deemed incapable of giving it) since the law pertains to rape cases, which, by their very definition, are instances where neither informed nor any other kind of consent can or ever is given. What might be the reason the phrase “feeble minded” made its way into the sentence and why might it be unclear to those interpreting the law whether or not it covered all or just “feeble minded” rape victims? If I were to venture a guess, I would say that eugenic reasoning is likely responsible for the legal phrasing the judges had such difficulty interpreting.