Monday, December 13, 2010

Case 25 “Anencephalic Newborns, Organ Donation, & Social Policy” (Nivia)

[6th ed. = Case 28]
Nivia: outline the case, distinguishing ethical from medical/social/legal/other issues, and any other information necessary to understanding the case (you might want to do a tiny bit of research if there's some particular angle that seems interesting to you).  You are also responsible for constructing relevant (thought-provoking) questions to start discussion on the case issues

Others: respond to Nivia's awesome questions/discussion prompts.

11 comments:

  1. I do not think it is disrespectful or unfair to transplant the organs of an anencephalic infant to save the life of another seriously ill infant. I think organ donation would bring meaning to the very short life of such an infant, and, as such, a policy to allow it with parental consent should be adopted. It appears that the definition of the brain death will have to be altered for anencephalic infants and the fear is that this definition will be applied to other brain diseases, but if it is for only this condition I do not understand that fear. Based on one website I read, it would not be worth resuscitating a stillborn, however. In the late 1980s a hospital sustained 12 infants on life support until they met brain dead requirements for organ harvesting; none of the transplants were successful because the organs were not functional. It appears, with minimal research, the only organs worth harvesting are those of anencephalic infants that are born alive. I do not really know enough to say if it is also justifiable to harvest the organs of someone in a permanent vegetative state. My thought is that if someone has been vegetative long enough to know they aren’t coming out of it then their organs probably aren’t usable. In addition, their organ could be affected by whatever made them vegetative to begin with (i.e., infection). If, however, it is known that someone will not reawaken and their organs are usable, I would say there is no reason not to help someone else.

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  2. Case 25
    Nivia Bruner
    December 19, 2010


    1.-Using dying anencephalic infants for organ offers many benefits, these include:

    The saving of the life of one baby, rather than the death of two.

    Parents of donors derive satisfaction from the knowledge that some good has
    come from their personal tragedy.

    Society is spared the cost of caring for a terminally ill infant.


    2.-Consent to donate organs from and anencephalic infant in a tragic situation.

    Organ donation from anencephalic infants should not be undertaken due to the
    serious difficulties surrounding the establishment of brain death in these infants
    and the lack of evidence to date supporting successful organ transplantation.

    There should be no alteration or modification of standard infant brain death
    criteria to include infants with anencephaly.

    Families who request the opportunity to donate organs from their infant with anencephaly should have information and educational material provided that explain why this practice is not supported. The option of tissue and stem cell donation should be discussed using the ethical principles and medical practices applied to other donors.

    The practice of using medical therapy and mechanical ventilation to maintain organ function pending the declaration of death in infants with anencephaly is not supported.

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  3. Ethical /Medical Issue:
    Infants with anencephaly require the same respect for life given to other human beings. As with other newborns, the standard medical criteria and ethical principles for organ donation and transplantation must be applied to anencephalic infants when they are considered as potential donors. Organ donation may only be considered if the anencephalic infant has satisfied the criteria for brain death or somatic death as applied to other human beings. Physicians should ensure that the same ethical standards applied to other organ donors are used for infants with anencephaly.
    Experience from individual cases and the Loma Linda study identified specific problems with the process of organ donation from anencephalic infants under the current medical and legal standards.
    First, anencephalic infants will not usually satisfy the standard brain death criteria because of adequate brainstem function that maintains spontaneous respiration and heart rate after birth.
    Second, by the time brain death or somatic death has been declared, the organs will have undergone ischemic damage, making them unsuitable for transplantation. This occurs because cardiovascular and respiratory functions deteriorate gradually in anencephalic infants before a terminal event. Third, the use of life support does not improve the chance of successful organ donation from anencephalic infants. While organ multi system organ failure develops before sudden death.
    In 1994, the American Medical Association (AMA) Council on Ethical and Judicial Affairs stated an opinion supporting the use of anencephalic infant organs for transplantation before death of the anencephalic infant, as long as parental consent requirements were met and other safeguards were satisfied. This radical departure from the ‘dead donor rule’ was subsequently supported by an AMA Council report in 1995 explaining the rationale for this opinion. The AMA Council report expressed the hope that public consensus would result in changes to the law to allow organ donation from living anencephalic infants. Such a development in public opinion has not occurred due to legal and ethical concerns and recent medical developments.
    Ethical concerns opposing organ donation from living anencephalic infants include the following:
    application of similar arguments in favor of organ donation from other seriously brain-
    damaged living person.

    serious risk of loss of public trust in transplantation programs;

    serious deleterious effects on families and staff involved in such cases; and

    risk of loss of public respect for the intrinsic value of all human life.



    The current AMA Policy affirms the ‘dead donor rule’ but supports the use of medical therapy and mechanical ventilation to sustain organ viability until death is declared.
    New medical developments have greatly decreased the potential benefit from using anencephalic infants as organ donors.
    First, the widespread use and improved diagnostic accuracy of routine prenatal ultrasound has been associated with increased prenatal diagnosis of anencephaly and subsequent high rates of pregnancy termination.
    Second, foliate fortification of food and pre conceptual foliate supplementation has significantly decreased the incidence of neural tube defects including anencephaly. As a result, the number of anencephalic infants born at term has decreased so much that the potential benefit from attempts to use their organs for transplantation is minimal.
    Finally, the major indication for neonatal heart transplantation, hypo plastic left heart syndrome, is now commonly treated by Norwood staged surgery rather than by transplantation, in part because of organ donor shortage, but also because of long-term concerns about morbidity after transplantation

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  4. Legal Issues:

    Legal questions center around the applicability, to the question at hand, of state laws
    patterned after two model statutes - the Uniform Definition of Death Act (UDDA), and
    the uniform Gift Act (UAGA). Almost all states have adopted either laws or some form
    of brain related death.

    Death is defined as either “irreversible cessation of circulatory and respiratory
    functions” or “irreversible cessation of all functions of the entire brain, including the
    brain stem”. Under the Gift Act, the request for consent required prior to an anatomical
    gift and the manner of executing anatomical gifts. By the UDDA brain death criteria,
    Anencephalic infants are not dead, because there is some brain activity in the brain stem, which controls respiration and heartbeat. However, if one were to wait for the cessation
    of all brain activity before removing organs, the organs would be severely damaged and ‘’
    unsuitable for transplantation.













    Social Issues:

    Despite the benefits, the issue of anencephalic organ donation has been the source of considerable controversy. The questions raised are not medical in nature per se, but instead revolve around fundamental ethical, legal, political and philosophical debates. These relate to the definition of death, the justification of non-therapeutic
    intervention, the candidacy for organ transplantation, and “ slippery slope” concerns.

    According to Wilke and Andrusko two researchers the anencephalic infant has no consciousness, no self awareness, no autonomy and no future life. Wilke and Andrusko have argued that the anencephalic is a non-person, a mere function, not a person in the legal and moral sense. This argument was expounded by those in favor of redefining death to mean higher brain death. This has been a common denominator in several of the options already discussed, namely conceding that the child is alive but removing the organs on utilitarian grounds, or changing the definition of death to accommodate anencephalic.
    Considering the anencephalic child to be a non-person reduces their sole utility to a source of organs for transplantation. Such utilitarianism would appear to deny the humanity of anencephalic. This clearly contradicts with medical codes and social traditions requiring members of society to treat care and respect each other as persons with intrinsic worth and rights.

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  5. Question:
    If anencephalics are acknowledged as an appropriate source of organs, which categories of dying or impaired patients is next?

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  6. Question:
    Is it ethical to participate in a procedure to enable a donor to receive payment?
    Question:
    Should brain death and/or organ donation laws be changed?
    Question:
    Do anencephalic infants possess the necessary characteristics to be designated as a person?

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  7. This case is particularly heavy, since it deals with babies. I am usually supportive of utilitarian principles, and would support saving the lives of many with the sacrifice of one that is destined to die anyways. Somehow, I can’t bring myself to support that in this case. Obviously, there is a lot of controversy as to what constitutes having enough brain function to be considered a human being. In addition, the child must be kept alive during the organ removal. This in itself seems wrong, and seems like stealing and disrespecting life. If this is allowed with encephalic newborns, I would fear it would be used for brain dead adult patients. I think too little is known about the true state these people are in and what brain functioning they retain (ex: do they dream?) to make decisions involving the last moments of their lives. I think any organ donation should be done after demise when it involves the removal of vital organs. This brings to question a case in which a patient’s family decides to terminate tube-feeding. Should we wait until after death to harvest organs when they would be more viable just beforehand? If the patient is going to be dead either way, why would it even matter?
    I would contend that the only live organ donations should involve non-vital organs and be carried out with the donor’s full knowledge and consent. No organs should be donated that would bring about death to a patient.
    Another interesting note to consider in terms of utility is that technology now allows for much earlier diagnosis of encephala, enabling parents to decide to terminate pregnancy much sooner. This means few encephalic babies are born, and therefore few lives would actually be saved from passing this law.

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  8. I want to start off by saying that Rea made a good point by pointing out that technology will allow doctors to detect issues like these early in pregnancy. With that being said, this is a controversal issue any way you look at it. I see the options in two different ways:
    1. You can honor the right of the baby(who has little to no chance of living) and wait until he passes away before you use his organs or
    2. You can save the life of a baby(who has a chance of living) by using the anencephalic newborn's organ.
    In order for me to analyze this case, I had to put myself in the shoes of both parents. Although I have never had children, I would find it an injustice for the parent of the anencephalic newborn to not in some way donate their child's organs, whether it be option 1 or 2. I do not consider it to be disrespectful for the organs of an anencephalic newborn to be used; I see it as a respect for life because someone in need could have a chance at living. I also don't see a problem with resusitation to save the organs; many people might not agree with me about this, but the infant is not going to remember the pain they suffered as a baby. If it is wrong because the child is going to fell the pain (whether they remember it or not) then wouldn't circumcism be wrong? When talking about using the organs of a person in a vegatative state, I have mixed feelings. I would say that if an individual will die if taken off lifesupport, and that is what their family is planning on doing, then there is no reason why their organs should not be used. A question that aries from the case for me is how to determine the chances of someone living. Many people want to hold onto the idea that their loved one could live. By the time they overcome their "ignorance" about the situation, it is oftentimes too late to save another's life. Because there are so many opinions about topics such as these, creating policies may be necessary, but whose to say what decision is right?

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  9. I think we should do as we have always done, give the parents the choices that are there for them and then let them make the decisions themselves. I agree with Tara when she said people want to hold onto the idea that their loved ones could live even though they have only half a brain. I think they should wait until the baby has in fact died before taking the vital organs. There have been many people killed in car accidents that their families have consented to organ donation. I don't see this to be any different. This would be a very difficult decision to make if you were the parent of an anencephalic child.

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  10. I think that anencephalic babies shouldn’t be acknowledged as an appropriate source of organs until they are declared dead. The AMA Policy, which affirms the ‘dead donor rule’ but supports the use of medical therapy and mechanical ventilation to sustain organ viability until death is declared, should be kept and used in cases such as anencephalic babies. Anencephalic infants do possess the necessary characteristics to be designated as a person. I don’t think that it is ethical to participate in a procedure to enable a donor to receive payment. A donor is any person who voluntarily gives blood, skin, a kidney etc., for use in the treatment of another person. Money shouldn’t be a factor.

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