How to Get A Head in Life

Note: The Bioethics Program blog will be moving to its new home on April 1, 2015. Be sure to change your bookmarks to http://bioethics.uniongraduatecollege.edu/blog/

by Bonnie Steinbock, Bioethics Program Faculty

An Italian scientist, Sergio Canavero, claims that he is two years away from performing the world’s first human head transplant, in which the head of one person would be grafted onto the body of a newly deceased person

Canavero’s proposed procedure would involve cooling the patient’s head and the donor’s body so that their cells do not die during the operation. After the head is cut off the patient’s body, the blood vessels would be lined up, and the spinal cord cut with a very sharp knife to minimize nerve damage. The patient would have to be immobilized by being kept in a coma for several weeks. Canavero believes that the patient would be able to speak when he woke up, although a year or more of physical therapy would be necessary for him to be able to move his body.

The biggest technical obstacle is that no one knows how to reconnect spinal nerves and make them work again, although there has been some success with animals. In 1970, a team at Case Western Reserve transplanted the head of one monkey onto the body of another, although they did not attempt a full spinal cord transfer. The monkey was unable to move its body. In 2014, researchers at Harbin Medical University in China were able to preserve breathing and circulatory function in mice. However, as is well known, “everything works in mice.” Most neurosurgeons are skeptical that this would work in humans. Moreover, it seems unlikely that ethics review boards today would approve experiments to see if the procedure worked in non-human primates.

Technical challenges aside, there are a number of ethical questions to be considered. We know that some people have been unable to adjust to transplanted appendages and have even had them removed. The psychological impact of waking up with a new body is unknown: how would you get truly informed consent for that? Nevertheless, if the procedure would save the patient’s life, and the alternative is death, perhaps this is a risk we should let competent adults take.

But would the patient’s life be saved? This is not a medical or scientific question, but a conceptual or metaphysical one. It depends on one’s theory of personal identity. On one view, known as mind essentialism, we human persons are essentially embodied minds, that is, embodied beings with the capacity for consciousness. Since the capacity for consciousness resides in the brain, we are our functioning brains. If your brain could be transplanted onto someone else’s body and continue to function, you would continue to exist.Indeed, philosopher Jeff McMahan created the hypothetical example of a brain transplant as evidence for mind essentialism.

An opposing view of personal identity holds that we are not essentially minds, but human animals or organisms. Its primary supporter, David DeGrazia, holds this to be a matter of educated common sense, and its denial by mind essentialism to be a serious defect in the theory. But what about the plausible intuition that “you go where your mind goes”? Its plausibility stems from the conflation of two distinct senses of identity: numerical and narrative. Narrative identity is psychological. It involves our sense of who we are: our beliefs, memories, values, and intentions. By contrast, numerical identity refers to what makes me the same individual, over time. On the human organism view of identity, I would continue to exist as the same individual even if my narrative identity were lost, as it would be if I permanently lost consciousness, as in permanent vegetative state (PVS).

We care deeply about narrative identity, DeGrazia says. Indeed, it is “what matters in survival.” That is why most people would not want to be sustained in (reliably diagnosed) PVS. Nevertheless, the organism account allows us to say that we can become PVS. On the embodied mind view of identity, this is literally impossible. My organism could become permanently unconscious, but since I am not my organism, I would no longer be there.

Both are plausible metaphysical views: which one is correct? In my view, neither, because both rest on the questionable assumption that we are essentially something. Why insist that we must be either embodied minds or organisms? Why can’t we be both? As a person, Terri Schiavo, ceased to exist when her cerebral cortex permanently ceased functioning in 1992. As a human organism, she died in 2005. And if she has an immortal soul, she continues to exist today.

From a practical perspective, the view of identity one takes doesn’t really matter as regards head transplants, since it is narrative identity that matters in survival. But would narrative identity be preserved? This is not simply a matter of reconnecting the spinal nerves, enabling the reconstructed person to be awake and sentient. If the patient woke up and had none or few of the memories, beliefs, values, or concerns he had before the head transplant, his narrative identity would be lost. Unless there was a possibility of recovering many of the mental contents of his mind, it is hard to see what benefit there would be in even a successful head transplant.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

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Mandatory Organ Donation: Ethical or Outrageous?

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Organ donation is the gift of life. By donating organs after we die we can literally bring someone back from the brink. Pretty awesome right?

So awesome in fact, that it could be argued, and has been, that everyone should want to donate their organs when they die, and consent for donation should be presumed.

What would this mean? Presumed consent for organ donation means that viable organs would be harvested from anyone who dies and consent from the patient or family would be unnecessary. Every person would need to opt-out of the donation program rather than the current “opt-in” plan we have now.

As with everything in life there are pros and cons with an opt-out plan. Let’s start with an obvious pro: with more available organs, more sick patients can get the transplant they need. This is a definite good, but is it worth the cost.

One of the arguments I have heard for mandatory organ donation is: you don’t own your body once you die. The assumption is that once I have died neither I, nor those who love me, have a vested interest in my body and until it is released to my family for funeral arrangements it in essence belongs to the government and my organs can be taken for donation without any ethical issue.

I adamantly disagree with the idea that I have no vested interest in my body once I have died. My interest extends from the values I have lived during my life. Furthermore, ownership and all decisions therein, should belong to my next of kin. This ownership is crucial for many families. For me, the final act I can perform for my loved one is ensuring the safe passage of their remains. It is vital for me to have ownership of this task as part of my grieving process. To remove personhood and its intrinsic value because life has left the body is illogical and disrespectful to the person as well as the loved ones they leave behind.

Another issue with presumed consent is that it expects an educated populous. At this point in our society we need to recognize that this cannot be expected. The vast majority of Americans live very uninformed lives for a variety of reasons. If you don’t believe me watch some of Jimmy Kimmel’s Lie Witness News, they will make you cringe.

Finally, I think that making organ donation mandatory changes the psychology of the act. Right now to donate you organs is altruistic and selfless. If it becomes mandatory it changes the dynamic, instead of an altruistic giving of your organs, you become a renter of those organs until your death. This may sound like a small thing, but changing this changes the way we view donors entirely.

In the end, organ donation saves lives, which is an important and wonderful thing. However, making donation mandatory comes at a cost. Are the lives saved worth possibly violating a person’s body? Or upsetting their family?

Treating everyone with respect and dignity is the most important thing we can do. We should not place one patient at a higher priority while neglecting the other patient or their family.

As you have likely gathered I am strongly against mandatory organ donation. That being said, organ donation is crucial and we should educate all citizens on the great gift they can give at the end of their life. This will be an uphill battle, but if you agree with organ donation tell a friend and tell them to tell a friend. With passionate advocates making the case to individuals we can raise the number of willing organ donors without compromising the donation process.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on May 15, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Fetuses, Organs and Brain-Death

This guest post is part of The Bioethics Program‘s Online Symposium on the Munoz and McMath cases. To see all symposium contributions, click here.

by Pablo de Lora, Ph.D.
School of Law, Universidad Autónoma de Madrid

One of the things that strikes me in the debate over whether a State has a sufficiently compelling interest in sustaining the physiological functions of a dead-brain pregnant woman in order to protect the life of the fetus, is that this very same rationale is not appealed to when we consider the many lives that are at stake when the deceased, or someone else — typically the next-of-kin — decides not to donate its organs after death. So, if the commitment of Texas — or any other State — with the protection of “human life” is sincere, if we can finally agree on that interest as being as compelling as to permit legislation restraining the woman’s right to refuse or terminate end-of-life care when she is pregnant, and their families’ right to bury or cremate their relative once it is pronounced legally dead, wouldn’t that rationale also legitimize the confiscation of dead-brain people in general in order to harvest their organs for the sake of saving the lives of others? I think coherence mandates so.

Actually, our reasons for such conscription in the case of organs’ harvesting are much more compelling than in the case of Marlise Muñoz if we take into account the fatal prognosis of the fetus, the experimental character of the continuation of pregnancy in a brain-dead woman, and the better expectations that we might nowadays have when we transplant organs.

[Cross-posted at Bill of Health]

Physician Authority to Make the Determination of Death: Why It Matters

This guest post is part of The Bioethics Program’s Online Symposium on the Munoz and McMath cases. To see all symposium contributions, click here.

by James Zisfein, M.D.
Chief, Division of Neurology, and Chair, Ethics Committee, Lincoln Medical Center

Why does it matter, to those of us involved in clinical ethics, that physicians are losing the authority to determine that a person has died?

I offer several reasons, in increasing order of importance:

Firstly, there is the (wasted) financial cost of maintaining dead people in critical care beds. However, even with the loss of physician authority to determine death becoming more common (due to publicity surrounding the Jahi McMath case), this cost is but a small fraction of our national health expenditures.

A more important reason is damage to professional integrity. The damage cannot be easily measured, but it’s real. The most bitter complaint I hear from critical care nurses is regarding their wasted efforts to prolong the lives of the imminently dying, and how that infringes on their time available to help patients with a chance to recover. (I don’t think they’ll be much happier ministering to the already dead.) And we have to also acknowledge the feelings of us neurologists and intensivists who use our extensive training and skill to make a correct determination of death only to see it nullified by angry but ignorant families, inept hospital administrators, and [unprintable] court rulings. Personally, it makes me wonder why the hell I’m doing this.

Thirdly, there will be inevitable loss of transplantable organs. As more and more families doubt the accuracy of determinations of death and assert dubious religious objections, and get supported by courts, there will be more and more lives lost on transplant waiting lists. It is already a far too common heartbreak when a child or young adult dies from liver failure, and the death could have been prevented. Prepare for a lot more heartbreak.

But the most important reason for allowing physicians to do their jobs — to determine death properly by medical standards — is for the sake of bereaved families. They have already suffered a tremendous loss, and introducing doubt about the fact of death or possibility of recovery does not change the outcome. It only intensifies and prolongs their anguish.

That’s why I think it matters. Any other takers?

Criminalizing Bone Marrow Donation

by Michelle Meyer, Bioethics Program Faculty

On October 2, in the midst of the government shutdown—either HHS somehow managed to convince itself that the rule was “necessary for the protection of life” or, more likely, it had already been scheduled for printing—HHS quietly published a Notice of Proposed Rulemaking. The proposed rule would effectively moot the recent Ninth Circuit case of Flynn v. Holder by criminalizing the compensation of bone marrow donors, even when the life-saving stem cells are extracted through a newer, minimal risk procedure. In this post, I’ll explain the medicine, the Ninth Circuit’s decision, and what HHS proposes to do in response. In my next post, I’ll have some reaction to HHS’s policy arguments, about which I’m skeptical, and perhaps a few thoughts about where plaintiffs might go from here.

Section 301 of the National Organ Transplant Act (NOTA) of 1984 criminalizes the transfer of “human organs” for “valuable consideration.” Reimbursement of reasonable out-of-pocket expenses associated with travel and lost wages are okay—as are, since the 2008 amendment of NOTA, paired living donor chains—but any other “valuable consideration” that might incentivize sources of organs is not. Under NOTA, as amended,

‘human organ’ means the human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other human organ (or any subpart thereof, including that derived from a fetus) specified by the Secretary of Health and Human Services by regulation

(emphases added). HHS has since added to this list “intestine, including the esophagus, stomach, small and/or large intestine, or any portion of the gastrointestinal tract.”

So-called “bone marrow transplants”—in reality, infusions of hematopoietic (blood) stem cells (HSCs)—are often life-saving procedures for those with, for example, leukemia or aplastic anemia. (See these sobering statistics compiled by the Institute for Justice, which represented the plaintiffs in Flynn.) When NOTA was passed, the only way to obtain HSCs was through bone marrow aspiration using a long needle thick enough to suck liquid marrow directly from the donor’s pelvic bone. HSCs are then harvested from the marrow. The procedure is done under general anesthesia and so the donor is subject to the usual risks of anesthesia. Although the donor can return to usual activities in two to seven days, discomfort may linger for up to two weeks.During the past twenty years or so, however, a new method of obtaining HSCs has emerged—apheresis—that avoids the need to invade the bone for marrow. (Kim Krawiec had a helpful post a while back with short videos that explain the differences between the two methods.) Today, something like two-thirds of HSC donation occurs through apheresis (traditional aspiration is medically indicated in some cases). Using this method, the donor receives five daily injections of a drug that accelerates blood stem cell production and coaxes the stem cells to move from the bone marrow into the bloodstream, where they are called peripheral blood stem cells (PBSCs). On the fifth day, the donor sits in a recliner for up to eight hours while blood is drawn from one of her arms, recycled through an apheresis machine that harvests the stem cells, and returns the remaining blood to the donor in her other arm. Possible side effects of the drug in the five-day run-up to the procedure include headaches and bone or muscle aches. After harvesting, the donor can return to her normal routine in one or two days, and complications are, according to the 9th Circuit, “exceedingly rare.”

Still, insufficient numbers of willing, compatible donors (there are just four blood types but millions of marrow cell types) exist. Those in need of transplants who have diverse genetic backgrounds, such as African Americans and those of multiple races/ethnicities, are especially difficult to match.

In Flynn v. Holder, a group of plaintiffs challenged the ban on compensating bone marrow donors. Plaintiffs included parents of children with leukemia and aplastic anemia; a parent of mixed-race children; and MoreMarrowDonor.org, a California nonprofit that wanted to test a pilot program in which it would offer bone marrow providers $3,000 awards in the form of scholarships, housing allowances, or gifts to a charity of their choice. They pressed two arguments before the Ninth Circuit—one based on the Equal Protection Clause, and one based on statutory interpretation. (A third argument, that the ban violates substantive due process, was rejected by the district court by fairly dubious analogy to Abigail Alliance, and plaintiffs did not raise it on appeal.)

Plaintiffs’ first argument was that NOTA, as applied to MoreMarrowDonor.org’s pilot program, violates the Equal Protection Clause by distinguishing, without rational basis, blood, sperm, and eggs (which do not come within NOTA’s definition of “human organ,” and donors of which may be compensated) and HSCs (donors of which may not be compensated under HHS’s interpretation of NOTA, regardless of the method of procurement). Plaintiffs argued that HSC donors—like blood and gamete donors, but unlike solid organ donors—are exposed to little risk and quickly regenerate what they have donated.

As applied to HSCs donated through aspiration, the court held that NOTA’s compensation ban might have any number of rational (if imperfect) bases and, therefore, does not violate the Equal Protection Clause. However, the court avoided the constitutional question as applied to HSCs donated through apheresis, holding that “the statute contains no prohibition.” According to the court, Congress could not have intended for NOTA’s reference to “bone marrow” to encompass the harvesting of HSCs through apheresis (that is, PBSCs), because that procedure did not exist in 1984.

As for what the statute implies about apheresis-derived PBSCs, the question came down to whether PBSCs should (as the government argued) be considered “bone marrow” or a “subpart thereof,” both of which are covered by NOTA’s ban, or (as plaintiffs argued) “blood,” which is not. The court sided with plaintiffs, finding among other defects in the government’s argument that it “proved too much”; after all, if HSCs are “part of” bone marrow because they are formed there, then so are the white and red blood cells that the government concedes fall outside of NOTA’s scope. In short, the court found,

All that differentiates the blood drawn in peripheral blood stem cell apheresis from the blood drawn from a compensated blood donor, other than the filtration process, is the medicine given to donors in the days before the blood draw to increase hematopoietic stem cell secretion.

In its petition for rehearing (here’s Kim again), the government raised a fairly weak new argument (Kim again) based on the fact that Congress—in an entirely different Title of the U.S. Code, pertaining to entirely different issues—defined “bone marrow” to include PBSCs. The court rejected the government’s petition for rehearing but did amend its opinion to reflect its rejection of the state’s new argument. The court concluded:

We construe “bone marrow” to mean the soft, fatty substance in bone cavities, as opposed to blood, which means the red liquid that flows through the blood vessels. The statute does not prohibit compensation for donations of blood and the substances in it, which include peripheral blood stem cells. The Secretary of Health and Human Services has not exercised regulatory authority to define blood or peripheral blood stem cells as organs. We therefore need not decide whether prohibiting compensation for such donations would be unconstitutional.

In its notice of proposed rulemaking this week, of course, HHS seeks to use just this regulatory authority. (Comments, by the way, are due by December 2, 2013.) The agency proposes to “explicitly incorporate hematopoietic stem cells (HSCs) within peripheral blood in the definition of ‘’bone marrow,’ so that the prohibition on transfers of human organs for valuable consideration applies to HSCs regardless of whether they were recovered directly from bone marrow (by aspiration) or from peripheral blood (by apheresis).”

As I said, in my next post, I’ll talk about the policy arguments for underlying HHS’s use of its regulatory authority. They include the usual suspects—commodification, coercion of PBSC vendors, exploitation of the sick, and concerns about compensation crowding out altruism and incentivizing vendors to conceal infectious diseases.

[This blog posting originally appeared on Bill of Health. The contents of this blog are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Much Ado About UNOS

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

Next weekend my husband and I plan to attend a fundraiser to raise money to cover some medical expenses for the friend of a friend. The person in question, a middle-aged woman not much older than myself, suffers from severe cardiomyopathy. Her heart is literally falling apart and she needs a transplant.

Even if a suitable heart is found, the costs of the transplant are astronomical. The procedure itself costs over $600,000. That price doesn’t include any post-operative care, which can run patients another $200,000. Nor does that figure include the cost of immunosuppressive drugs, which heart transplant recipients need to take for the rest of their lives. Those drugs and follow-up monitoring run nearly $30,000 annually.

Now, my friend’s friend is somewhat lucky in this regard. Her health insurance will actually cover most of these costs, at least until she hits her lifetime coverage cap. So then, why is there a need to have a fundraising event?

The reason is that the family needs to move to California in order to improve the patient’s chance of getting a suitable donor organ. Organ transplantation in the United States is overseen by an organization called the United Network for Organ Sharing (or UNOS), a private non-profit organization that operates under contract with the federal government. One of the things that UNOS does is manage the national transplant waiting list, matching patients in need of an organ with suitable donors (both living and dead).

Organs for transplant are exceedingly rare commodities. For example, nearly 4,000 people are currently on the waiting list for a new heart; that is almost double the number of organs that become available annually. UNOS thus allocates these organs according to a complex algorithm that includes age, blood type, medical urgency, waiting time, geographic distance between donor and recipient, size of the donor organ in relation to the recipient, and type of organ needed. In the case of new hearts, the two key factors are medical urgency and geographical distance.

To deal with geography, UNOS divides the country into 11 different zones, and organs tend to be allocated within a particular zone. When a heart becomes available in zone 9 (which includes New York and Western Vermont), it tends to go to a patient in zone 9. But not all zones are equal. In this zone, where there are nearly 350 waiting patients, only 175 hearts became available last year. By contrast, in zone 5 (which includes California and other Southwestern states) there are 380 eligible candidates and 357 hearts become available in 2012.

So geography matters, and so my friend’s friend is heading to Los Angeles in order to get on the transplant list there. Unfortunately, health insurance doesn’t cover those relocation costs, and the family is desperately trying to raise money to finance the move.

That they need to do so highlights one of the problems with the current system: those with money stand a better chance of getting an organ than those who do not. The organ allocation system managed by UNOS was ostensibly designed to combat this, avoiding a return to the dark days when groups like the Seattle God Squad decided which patients lived and which died on the basis of social worth.

The system works in the sense that medical need and patient suitability are the key factors that determine who gets an organ, not social worth. But money, which is itself often a measure of social worth, can be used to game the system. People with money can move to different geographical zones in order to increase the likelihood that they will receive an organ, they can hire top specialists who know how to make medical need look more urgent, and they can even sue in federal court in order to challenge existing allocation rules.

Sadly, there is little that we can do to fix this. Given the fundamental structural problems with access and delivery of health care in the US, the system is just about as good as it can get. Until every American has comprehensive health insurance, and until that insurance also covers associated costs of care and treatment (like moving expenses for transplant candidates), the wealthy will have a greater chance to get scarce resources like organs. For now, the rest of us will simply have to rely on luck and bake sales.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 29, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Take a Breath

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

The country has been gripped with interest watching the case of Sarah Murnaghan.  Sarah is a 10 year old Cystic Fibrosis patient who was in desperate need of a lung transplant.  The current transplant waiting list rules state that children under the age of 12 can receive lungs from an adult donor only if those lungs are not needed for an adult or adolescent in the same geographical area.

On the surface this may sound malicious and unjust, but let’s dig deeper.  In order for a child, under the age of 12, to receive adult lungs they must be re-sized for the smaller chest cavity of the child.  Current research says that this re-sizing process can make the lungs less stable and the transplant less successful than adolescent or adult transplants.

Being a logical thinker these types of media frenzy stories drive me batty.  An uneducated public is led by a manipulative or possibly, equally uneducated media to “react” on emotion rather than truly think about the issue.  In a moment the country was abuzz about the “unfair” transplant allocation rules and how we need to change them RIGHT NOW!

I am not saying that these rules don’t need to be updated; I am certainly no authority on lung allocation or transplantation.  My knowledge in this area is limited to information that came up in my recent Google search.  We may very well need to change the process, but let’s take our time, use logic, and consult the experts.

Certainly, Sarah’s story is heart wrenching and no one wants to see a little girl’s life end.  Medical policy however, cannot be created based on preventing whichever outcome would make us the most sad.  UNOS, the United Network for Organ Sharing, has difficult, almost impossible decisions to make every day about who receives the organs they have available.  They have to make these decisions logically and free of emotion.  To be truly just, they need to give the organs to patients who will benefit from them the most, this includes considering which transplants will be the most successful.

After the nationwide outcry and a court order, Sarah’s name was given priority on the lung transplant list.  She received her transplant and her body almost immediately rejected the lungs.  Three days later Sarah received a second transplant; it is extremely rare to receive two transplants so close together.  This second surgery was approximately two weeks ago, and according to press releases from her parents Sarah is doing well.

We should certainly all be happy for Sarah and her family and pray for her continued recovery.  I have no issue at all with the Murnaghan’s fight for their daughter.  I understand what it means to have a family member with a terminal illness and the need to exhaust every resource within reach to save them.  Any avenue that brings a family peace or allows them to continue the fight is fine with me.

I am disappointed however with the reactive media and general public.  Organ allocation is a complex process and should be treated as such.  This means any proposed changes should be thoughtful, logical, and well supported with data.  Sarah’s story stirs emotions in us and we want to help her, but what about the other people on the transplant list?

Maybe there is a 15 year old honors student, or a 22 year old with aspirations for medical school, or a 25 year old mother of 2, or 40 year old father of 5.  We need to keep in mind that Sarah’s is the story we know, but not the only sad story on the lung transplant waiting list.  We trust UNOS with the decisions, because they have a commitment to making them logically, based on need and benefit rather than emotion.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on June 30, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]