Death and the Organ Donor -Eastertide 2009

Death and the Organ Donor

by Nancy Valko, RN

In the early 1970s, I was a young nurse working with many trauma victims in a state-of-the-art intensive care unit and I loved it. Because of the high number of young accident victims, I was also often involved with organ donation from patients diagnosed as brain-dead. Asking shocked and grieving relatives about organ donation was the hardest part of my work.

Back then, “brain death” was a new legal and ethical concept stemming from an influential 1968 Harvard medical school committee paper titled “A Definition of Irreversible Coma”, which concluded that severely brain-injured patients who met certain criteria could be pronounced dead before the heart stops beating. Starting in the early 1970s, various state legislatures and courts acted to turn this “medical consensus” into a legally recognized standard for determining death by loss of all brain function. Patients declared “brain-dead” then could have their organs harvested while their hearts were still beating and a ventilator kept their lungs going. The brain death concept virtually created the modern transplant system because waiting to take organs until breathing and heartbeat naturally stopped usually resulted in unusable, damaged vital organs.

Like most people, I didn’t know the history of brain death back then and despite the tragic circumstances of my “brain- dead” patients, I was excited by the opportunity to participate in turning tragedy into the “gift of life”.

Over time, however, I developed some nagging concerns about the brain-death concept and I shared them with our intensive care doctors. I was told, as one doctor put it, “Nancy, greater minds than yours have already figured this all out so don’t worry about it.” It took me years to realize that this meant these doctors didn’t know the answers either.

Death and Choice
Unknown to most people, controversy about brain death has simmered for years in the bioethics community. Some well-known physicians, for example, Alan Shewmon and Paul Byrne, argue that the current brain-death standard does not reflect true death. Others, such as Dr. Ron Cranford and ethicist Robert Veatch, argue that the brain-death standard should be stretched to include so-called “persistent vegetative” patients, further expanding the pool of potential organ donors.

Last August the bioethics world was rocked by an article by Drs. Robert Truog and Franklin G. Miller in the prestigious New England Journal of Medicine that made the shocking assertion that many organ donors were not really dead at the time their vital organs were harvested.1 This Harvard doctor and this National Institutes of Health bioethicist then proposed the radical idea that doctors should drop the rule requiring that people be declared dead before vital organs are taken in favor of merely “obtaining valid informed consent for organ donation from patients or surrogates before the withdrawal of life-sustaining treatment in situations of devastating and irreversible neurologic injury”. This, in Truog’s and Miller’s opinion, would preserve the current transplant system and still be acceptable to the public because “issues related to respect for valid consent and the degree of neurologic injury may be more important to the public than concerns about whether the patient is already dead at the time organs are removed.”

Perhaps as a result of articles like this, the President’s Council on Bioethics decided to explore the determination-of- death issues involved in organ transplantation. In January 2009, the Council published “Controversies in the Determination of Death: A White Paper”.2 Many of the report’s consensus conclusions were surprising and controversial themselves.

The President’s Council on Bioethics White Paper
The President’s Council on Bioethics white paper on the determinations of death made several startling admissions, including finding that some of the most fundamental rationales for brain death were wrong. The Council, citing scientific studies and observations, admitted that the brain is apparently not the central organizing agent without which the body cannot function for more than a short period of time. Years ago, many of us questioned why some supposedly brain-dead pregnant women could be maintained on ventilators — for even up to a couple of months in some cases — in order to help their unborn children develop and survive birth. Others observed that some supposedly brain- dead children could actually grow and even sexually mature if maintained on life support. It turns out that we were right to question this allegedly settled matter.

The Council also had to admit the little-known fact that brain-death tests vary widely from institution to institution, potentially leading to people who could be declared brain-dead at one hospital but at a different hospital still be considered alive. Personally, I was disappointed that the Council’s paper did not even mention instances like the recent Zach Dunlap case, in which every supposedly definitive brain-death test was done, but a last-minute response by Zach stopped the impending organ donation and Zach even recovered.3

But in the consensus opinion of the Council members, apparently the concept of brain death is just too big to fail. Accordingly, some members of the Council proposed that the term “brain death” be replaced with the term “total brain failure”. And with the new term, these members created a new justification for harvesting the organs of people declared to have this condition. According to this redefinition, the brain is important not because it controls physiological processes, but because these processes represent “engagement with the world”.

This “engagement with the world” takes three forms: openness to the world, an ability to act on the world, and the need to do so. These abstract requirements can be met by something as basic as breathing but they are not met by physiological activities that continue in people who have allegedly lost all neurological function. This, the Council members insisted, is enough to spare breathing, brain-injured people like Terri Schiavo from a diagnosis of “total brain failure”. Ironically though, this assertion does not protect people like Terri from having vital organs removed during the time when they are initially placed on a ventilator because doctors can then use another, newer determination of death called “donation after cardiac death” or DCD (formerly known as “non-heartbeating organ donation” or NHBD).4 The Council’s white paper also addresses this type of death determination and, in the process, makes more startling admissions.

DCD/NHBD was developed in the early 1990s to promote a newer standard of determining death for the purpose of organ donation. DCD/NHBD describes a procedure in which a person is declared hopelessly brain-injured or ill but not brain-dead and, with the consent of the patient or surrogates (or potentially even a “living will”-style document), has his or her ventilator removed with the expectation that breathing and heartbeat will stop within about 1 hour. When the heartbeat and breathing stop for usually about 2 to 5 minutes, the person is declared dead and the organs are taken for transplant. If the person’s heartbeat and breathing do not stop within the allotted time, the transplant is called off and the person is left to die without further treatment.

The Council’s white paper admitted that the legal definition of irreversible cessation of heartbeat and breathing used to justify DCD/NHBD has problems. Most people would consider “irreversible” in this context to mean that the heart has lost the ability to beat. But in DCD/NHBD, “irreversible” instead means that there is a deliberate decision not to try to restart the heart when it stops and that enough time has elapsed to ensure that the heart will not resume beating on its own. However the Council had to admit the dearth of scientific evidence supporting this determination. In some cases involving babies, for instance, the heart is harvested and actually restarted in another baby.

The Council also admitted that even fully conscious but spinal-cord-injured patients have become DCD/NHBD donors when dependent on a ventilator. This sad fact is the result of virtually all withdrawal-of-treatment decisions now being considered legal and thus ethical.

The Council also noted that even though doctors are advised to take their time determining death when a natural death occurs, the interval between declaring death and starting transplantation in a DCD/NHBD patient has been as short as 75 seconds. It seems obvious that the push for a speedy declaration of death is not about new scientific information determining the moment of death but rather a desire to quickly get organs because “[t]he longer a patient removed from ventilation ‘lingers’ before expiring, the more likely are the organs destined for transplantation to be damaged by warm ischemia [lack of adequate blood flow]”.5 But even while expressing concerns, the Council still supported the DCD/NHBD concept in the end.

Despite pages discussing these DCD/NHBD issues, the Council unfortunately ignored a most crucial issue: How do doctors determine who is a “hopeless enough” patient with functioning vital organs and who will also die fast enough to get usable organs? The Council never mentioned articles like the one in the September/October 2008 issue of the Journal of Intensive Care Medicine, which stated “Donation failure [patients who don’t die fast enough to have usable organs] has been reported in at least 20% of patients enrolled in DCD”. Those authors also concluded that “There is little evidence to support that the DCD practice complies with the dead donor rule”.6

We Are All Affected
While organ donation is a worthy goal when conducted ethically, it is very dangerous when physicians and ethicists redefine terms and devise new rationales without the knowledge or input of others, especially the public. This has been happening far too often and far too long in many areas of medical ethics and the consequences are often lethal.

Opinions about medical ethics affect all of us and our loved ones. And good medical ethics decisions are the foundation of a trustworthy medical system. We are constantly exhorted to sign organ-donor cards and join state organ registries but are we getting enough accurate information to give our truly informed consent? This question is too important to just leave to the self-described experts.


Notes

1 “The Dead Donor Rule and Organ Transplantation”, R. D. Truog and F. G. Miller. New England Journal of Medicine, August 14, 2008.

2 Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics, The President’s Council on Bioethics. Washington, DC: January 2009. Available online at: www.bioethics.gov/reports/death/index.html.

3 “Was Zach Dunlap’s Recovery a Miracle?”, Nancy Valko, RN. Voices Vol. XXIII, No. 2, Pentecost 2008. Available online at www.wf-f.org/08-2-Valko.html.

4 “Non-heart beating organ donation and the vegetative state”, George Isajiw, MD and Nancy Valko, RN. March 2004. Available online at www.wf-f.org/NHBD-VatMar2004.html

5 Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics, page 82.

6 “Organ Procurement after Cardiocirculatory Death: A Critical Analysis”, Mohamed Y. Rady, MD, PhD, Joseph L. Verheijde, PhD, MBA, and Joan McGregor, PhD. Journal of Intensive Care Medicine. September/October 2008, available online at http://jic.sagepub.com/cgi/reprint/23/5/303.pdf.


Nancy Valko, a registered nurse from St. Louis, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor.


1996 National Catholic Register: A Compassionate Response

A Compassionate Response

 Sunday, Nov 10, 1996 1:00 PM Comment

In 1992, David and Anne Andis had a little girl with anencephaly whom they named Emma. Although an ultrasound showed the possibility of anencephaly only 10 weeks into the pregnancy, David and Anne, who are not Catholic, made the decision not to abort but found little support or information on dealing with their family’s crisis.

Although Emma lived only five days after birth, the Andises found that being able to know and love Emma during her short life was a meaningful and healing experience for them and their family. In response to their situation, they helped to start the Anencephaly Support Foundation to help other parents, families, and friends deal with the physical and emotional challenges of having (and losing) a baby with anencephaly. They now give such practical tips as the best kind of bottle to use if the baby can suckle and how to care for the skull defect as well as linking parents with other parents who have had children with anencephaly.

David and Anne are also spearheading an effort to establish a national birth defects registry and federal funding to study the causes of birth defects, hoping this information will lead to some answers and help prevent future babies from dying. Currently, low levels of the vitamin folic acid has been linked to the incidence of anencephaly but further research is considered warranted.

The Andises maintain an Internet site and also recently produced a videotape called The Anencephalic: A Suitable Donor? which deals with the controversial subject of using anencephalic infants as organ donors before death.

The Anecephaly Support Foundation can be reached by the Internet address http://www.asfhelp.com or by the toll-free phone number 1-888-206-7526.

Nancy Valko

“Non-heart beating organ donation” and the “vegetative state”

 

 

Editor’s Note: The following was presented by Dr. George Isajiw to the participants in the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas”, held in Rome March 17-20, 2004. To read the text of the Holy Father’s address to the Congress, click here. Since this article was published in 2004, non-heartbeating organ donation (NHBD) has been renamed donation by ethicists and organ transplant organization as” death after cardiac or circulatory death (DCD)”  but the issues remain the same.

By George Isajiw, M.D. and Nancy Valko, RN

On May 23, 2003, the newspaper of the Archdiocese of St. Louis, the St. Louis Review, published an editorial stating that “the NHBD (non-heart beating organ donation) protocol is cruel and dangerous and does not meet standards of respect for human life” and called for an immediate moratorium on NHBD at all St. Louis hospitals.

Reaction was swift and critical. The St. Louis Post-Dispatch cited transplant surgeons and others who defended NHBD as a way to increase organ donations by taking organs from patients who “have little brain activity and are in a vegetative state with no hope of recovery and whose families decide to discontinue life support.1 Michael Panicola, vice president of ethics for the Catholic SSM Healthcare System, defended NHBD as “an opportunity for people to give the gift of life when they don’t meet brain death criteria.”

FACTS ABOUT NON-HEART BEATING ORGAN DONATION
For the past several years, a little-known but disturbing revolution has been occurring in organ donation. In the understandable but sometimes alarming zeal to obtain more organs, a new procedure called “non-heart-beating organ donation” has been quietly added to brain death organ donation in more and more hospitals in the United States and in other countries.2

Here, we are referring only to so-called “controlled NHBD protocols, although the “uncontrolled NHBD protocols, which are used for patients who have failed resuscitation efforts, have their own set of ethical problems which overlap with “controlled” NHBD, such as cannulation for preservation of organs before consent can be obtained.

While brain death organ donation means that the person is legally dead but still has a heartbeat when organs are harvested, the potential NHBD patient does not meet the brain death criteria but is termed “hopeless” or “vegetative” soon after suffering a devastating condition such as a severe stroke or trauma, and while still needing a ventilator to breathe. Because of the legal acceptance of the so-called “right to die”, families or other surrogates then agree to have the ventilator turned off, a “do not resuscitate” order is written, and when the patient’s breathing and heartbeat stops, the organs are removed.

In NHBD, the ventilator is usually stopped in an operating room while a doctor watches for up to one hour until the heartbeat and breathing stops. After an interval of usually just 2 to 5 minutes, the patient is declared dead and the transplant team takes over to remove the organs. A determination of brain death is considered unnecessary even though one of the inventors of the NHBD protocol, Dr. Michael DeVita has admitted, “the possibility of [brain function] recovery exists for at least 15 minutes”. Nonetheless, Dr. DeVita defends waiting only 2 minutes before harvesting the organs because he believes that the person is unconscious and, as he writes, “the 2-minute time span probably fits with the layperson’s conception of how death ought to be determined”.3

A recent article in the New England Journal of Medicine illustrates the disturbing lack of objective medical standards for withdrawal of ventilators.4 This article, published in September of 2003, admits that no study was done to “validate physicians’ predictions of patients, future functional status and cognitive function”, and the researchers did not ask doctors to ”justify their predictions of the likelihood of death or future function”.

With such subjective standards being used for withdrawal of ventilators, it should not be surprising that the potential NHBD patient will unexpectedly continue to breathe for longer than the usual one hour time limit required for the organ transplant to be successful. In these cases of failed NHBD, the transplant is then cancelled but, rather than resuming care, the patient is just returned to his or her room to eventually die without any treatment or further life support.

The recent case of Jason Childress illustrates the lethal problems with this non-treatment plan and the lack of objective medical or ethical standards for withdrawing ventilators.5

Jason is a young man who was severely brain-injured in a car accident and became the subject of a “right to die” case in which the judge ordered the removal of his ventilator 2 months after his accident. Against all predictions and because his tube feedings were not also stopped, Jason continued to breathe on his own and is now showing signs of improvement and receiving treatment. Ominously, the doctors, initial recommendation to withdraw the ventilator 2 days after his accident could have made him a prime candidate for NHBD since he would have possibly been too injured to breathe on his own that soon after his accident. The rush to declare patients “hopeless or “vegetative soon after illness or injury can thus deprive at least some patients of the chance of survival or even recovery.6

Some NHBD protocols do not even require that the donor be mentally impaired at all. For example, one ethicist wrote about the case of a fully conscious man with ALS who decided to check himself into a hospital, have his ventilator removed and donated his organs under NHBD criteria. The ethicist wrote, “An operating room nurse reported feeling that the procedure was ‘Kevorkian-like'”.7

CONCLUSION
Even more pressure to increase the use of NHBD is apparently coming in the US, even though the public has been kept largely uninformed about this new method of obtaining organs. For example, last November, an advisory committee to the US Health and Human Services department recommended that, in the future, all hospitals should establish policies and procedures to “manage and maximize” NHBD and also be required to “notify organ procurement organizations prior to the withdrawal of life support to a patient, so as to determine that patient’s potential for organ donation”8. Unknown to most of the public, hospitals are now already required to report every death to the local transplant organization even when tissue or organ donation is refused and, if enacted, this new proposal will put further pressure on medical personnel and distraught families.

Ironically, at the same time, new information is coming forward about these so-called “hopeless” patients who are considered potential NHBD candidates. A September 2003 article in the New York Times featured the work of Dr. Joseph T. Giacino and others with people who have had severe brain damage but who are now showing signs of “complex mental activity even after months or years with little sign of consciousness”.9 And, of course, there are many reported cases even in the media of brain-injured people who improve or even recover long after the doctors declared them hopeless.

Yet, even this may not be enough for some ethicists like Dr. Robert Truog, who recently proposed that “individuals who desire to donate their organs and who are either neurologically devastated or imminently dying should be allowed to donate their organs, without first being declared dead.”10 In other words, Dr. Truog wants to eliminate even the controversial NHBD protocol in favor of just taking organs from incapacitated or dying patients while they are obviously still alive.

Linking the so-called “right to die” with organ donation, as NHBD does, has truly opened a terrible Pandora’s box. While organ donation can be a gift of life and a worthy goal, we must not allow the deaths of some people to be manipulated to obtain organs for others. The position of Cardinal Justin Rigali, now Archbishop of Philadelphia, who was at that time the Archbishop of St. Louis and who asked for an immediate moratorium and re-evaluation of NHBD, is eminently sensible and should be replicated worldwide.

================================================================

NOTES

[1] “Archdiocese criticizes some organ retrievals” by Deborah L. Shelton, St. Louis Post-Dispatch, 6/10/03.

[2] “It is difficult to determine whether other countries such as Holland and Japan adopt a uniform defensible template in their practice of controlled NHBOD and information from the UK is also extremely limited as to the extent and nature of practice”. From “Non-heart beating organ donation: old procurement strategy” new ethical problems by M. D. Bell, Journal of Medical Ethics 2003; 29:176-181. Online at:

[3] “The Death Watch: Certifying Death Using Cardiac Criteria” by Michael A. DeVita, MD, University of Pittsburgh Medical Center, Pittsburgh, Pa. Prog. Transplant 11(1):58-66, 2001. © 2001 North American Transplant Coordinators Organization

[4] “Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit” by Deborah Cook, M.D., et al. New England Journal of Medicine, Volume 349:1123-1132, September 18, 2003, Number 12.

[5] “Jason Childress Still Breathing, Receives Proper Medical Care” by Steven Ertelt, LifeNews.com Editor, September 25, 2003. :

[6] “Ethical Implication of Non-Heart Beating Organ Donation” by Nancy Valko, RN. Voices magazine, Michaelmas 2002 Volume XVII, No. 3.

[7] A Primer for Health Care Ethics by Kevin O’Rourke, O.P., Georgetown University Press, 2000, p. 182

[8] US Department of Health and Human Services Advisory Committee on Organ Transplantation, Recommendations to the Secretary. November 2002. Recommendation 14

[9] “What if There Is Something Going On in There?” by Carl Zimmer. New York Times, 9/28/03

[10] “Role of brain death and the dead-donor rule in the ethics of organ transplantation” by Robert D. Truog, MD, FCCM; Walter M. Robinson, MD, MPH. Critical Care Medicine Journal, September 2003; 31(9):2391-2396

George Isajiw, M.D., is based in Washington, DC, and is Internal Medicine Consultant to the Linacre Institute of the Catholic Medical Association. He is also past president of the Catholic Medical Association, USA. His 2002 paper “Advance ‘Mis-Directives’: Euthanasia in Catholic Hospitals in the United States” appears here.

Nancy Valko, a registered nurse, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-life Nurses and a Voices contributing editor. She is based in St. Louis, MO

2014 Voices: Brain Death and Catholic Teaching

Voices Online Edition
Vol. XXIX, No. 1
Pentecost 2014

Brain Death and Catholic Teaching

by Nancy Valko, RN ALNC

Earlier this year, the public was transfixed by two news stories involving brain death. The circumstances of Jahi McMath and Marlise Muñoz were very different on the surface, but the legal and ethical questions concerning the diagnosis of brain death and the use of life support in both women started a firestorm of controversy even within the Catholic Church.

No wonder the average person, Catholic or not, is confused.

It is important to first scrutinize the facts of both cases to begin to understand why there is a lack of unity on such life and death matters even among respected Catholic sources.

JAHI MCMATH

Jahi McMath, a 13-year-old girl, underwent a routine surgery for sleep apnea in December 2013 at a California children’s hospital. That night she started bleeding and eventually her heart stopped. Her heart was restarted and she was placed on a ventilator to stabilize her condition, but soon the doctors declared her brain dead and prepared to remove the ventilator. However, the family insisted that the ventilator be continued, hoping that Jahi might eventually get better.

The doctors disagreed, insisting that Jahi was legally dead by brain death criteria. The parents went to court to keep the doctors from removing her ventilator but after a series of legal battles lasting weeks, a judge eventually gave Jahi’s family permission to transfer her to another facility that would continue the ventilator.

Virtually all the ethicists and other experts contacted by most media outlets condemned the family’s actions as denying the reality of brain death. In January the National Catholic Bioethics Center issued a statement that said, in part, “… the determination of death by the rigorous application of the neurological criteria is considered legitimate by the Catholic Church, which accepts the findings of science in such a determination.”1

In a January 10, 2014 USA Today article, ethicist Arthur Caplan, head of the bioethics division at New York University’s Langone Medical Center, condemned the judge’s decision for Jahi’s family, declaring that brain dead people will eventually “start to decompose,” even if the ventilator was continued.2

However, almost 3 months later in a March 28, 2014 interview with NBC Bay Area News,3 Jahi’s mother reported that her daughter now moves her arms, legs, and head spontaneously but “is still asleep” and unable to move on command. Jahi is currently being fed by a feeding tube, sustained on a ventilator on room air (no extra oxygen) and receives physical therapy 3 to 4 times a week. At the time of this interview, Ms. McMath had just received an award from the Terri Schiavo Life & Hope Network as a relative who protects “a loved one against overwhelming odds.”

While Jahi’s movements described by her mother were dismissed by some experts as merely “spinal reflex movements,”4 it was a foot movement in the 2008 case of Zack Dunlap5 that led doctors to rethink their diagnosis of brain death in him and stop an imminent organ donation. Although Zack made a very fast recovery and Jahi’s continued lack of apparent conscious movement is not as hopeful, critics of brain death point to these kinds of developments as showing how much we still do not know about the human brain and its capabilities.

Although the medical criteria used to determine brain death vary — often widely — from one hospital to another, the definition of brain death is supposed to show an irreversible lack of function of the entire brain and brain stem. In Zack Dunlap’s case, he had more testing, including a test showing a lack of blood flow to the brain, than the average person diagnosed as brain dead.

MARLISE MUNOZ

Marlise Muñoz was a 33-year-old woman who was 14 weeks pregnant with her second child in November 2013 when she collapsed from a suspected blood clot and stopped breathing at home. She was taken to a Texas hospital and, like Jahi McMath, revived and put on a ventilator. Like Jahi, Mrs. Muñoz was also declared brain dead within a short time; but in this case, the roles of the family and hospital were reversed. Mrs. Muñoz’s husband was ready to remove the ventilator and the hospital objected because of a Texas law, like those in several other states, that prohibits the withdrawal of life support from a pregnant woman so that the baby has at least a chance to survive to birth.

Mr. Muñoz strenuously disagreed, stating that his wife told him she would not want to live in such a state and, in several news reports, voiced his concern that the lack of oxygen and effects from resuscitation might have damaged his unborn child. He went to court to force the hospital to remove the ventilator.

This time, virtually all the many ethicists and experts contacted by the media supported the husband’s decision to remove the ventilator. Many argued that the 1989 Texas law was only meant to apply to pregnant women in conditions like a “vegetative state,” not a brain-dead woman. Some even claimed that removing the ventilator was similar to a legal late-term abortion. As the case wound its way in court for weeks, lawyers for Eric Muñoz eventually claimed that tests showed the now-22-week-unborn child was “distinctly abnormal” with fluid building up inside the skull, a possible heart problem, and lower extremities “deformed to the extent that the gender cannot be determined.”6 In an interview on CNN’s Anderson Cooper 360°, Mrs. Muñoz’s mother “described in agonizing detail in the interview how towards the end, her daughter’s body had begun to visibly deteriorate, making it difficult to look at an empty shell of what had been her beloved daughter.”7

A judge ordered that life support be removed, and on January 24, 2014, both mother and baby died.

While many commentators stated that it was virtually impossible for a pregnant mother declared brain dead to deliver a healthy baby, a 2010 British Medical Journal study reported that “In 12 (63%) of 19 reported cases, the prolonged somatic support [of the mother declared brain dead] led to the delivery of a viable child.”8

In the Muñoz case, virtually all pro-life and Catholic ethicists agreed that giving the unborn child at least a chance to be born was the ethically correct position. And, of course, birth defects do not make a baby unadoptable.

CONFUSION AMONG CATHOLICS

The controversy about brain death has been simmering among Catholic ethicists, medical experts, and theologians for many years.

It all started with a 1968 Harvard paper titled “A Definition of Irreversible Coma — Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.”9 Within a very few years, all 50 states included brain death in the legal definition of death. This allowed brain death criteria to be used for the purpose of organ transplantation. Before this, organ transplantation was virtually impossible in patients declared dead by the traditional standard of irreversible cessation of breathing and heartbeat. In those cases, vital organs were too damaged by lack of blood flow and oxygen to be useful. Brain death allowed organs to be harvested while a ventilator supported breathing and the heart was still sending blood to vital organs.

In 1975, the Committee on Health Affairs of the United States Catholic Conference issued “Guidelines for the Determination of Brain Death,” which concluded that criteria for brain death to provide “moral certainty” of brain death were “morally sound and acceptable.” In 1981, the Pontifical Council “Cor Unum” stated that the determination of the moment of death is a medical, not a theological, judgment.10

The Pontifical Academy of Science studied the question of determination of death in 1985 at the request of Pope John Paul II. The Academy concluded “From the debate it emerged that cerebral death is the true criterion of death, since the definitive arrest of the cardiorespiratory functions leads very quickly to cerebral death.”11 Apparently searching for greater clarity, Pope John Paul II raised the question again with the Pontifical Academy in 1989. The Academy reached the same conclusion.

In 1995, the Pontifical Council for Pastoral Assistance to Health Care Workers under Fiorenzo Cardinal Angelini issued its Charter for Health Care Workers. The legitimacy of neurological criteria was accepted by this body as well, and it concluded, “When total cerebral death is verified with certainty, that is, after the required tests, it is licit to remove organs and also to surrogate organic functions artificially in order to keep the organs alive with a view to a transplant.”12

In 2000, Pope John Paul II gave an address to a Vatican conference on organ donation where he stated:

Here it can be said that the criterion adopted in more recent times for ascertaining the fact of death, namely the complete and irreversible cessation of all brain activity, if rigorously applied, does not seem to conflict with the essential elements of a sound anthropology. Therefore a health-worker professionally responsible for ascertaining death can use these criteria in each individual case as the basis for arriving at that degree of assurance in ethical judgment which moral teaching describes as “moral certainty.” This moral certainty is considered the necessary and sufficient basis for an ethically correct course of action. Only where such certainty exists, and where informed consent has already been given by the donor or the donor’s legitimate representatives, is it morally right to initiate the technical procedures required for the removal of organs for transplant.13

Nonetheless, the Pontifical Academy of Sciences published a statement in 2008 under the title “Why the Concept of Brain Death Is Valid as a Definition of Death.”14

In November 2008, Pope Benedict XVI gave an address to a prestigious international conference on organ transplants in which he stated:

In an area such as this, in fact, there cannot be the slightest suspicion of arbitration and where certainty has not been attained the principle of precaution must prevail. This is why it is useful to promote research and interdisciplinary reflection to place public opinion before the most transparent truth on the anthropological, social, ethical and juridical implications of the practice of transplantation. However, in these cases the principal criteria of respect for the life of the donator must always prevail so that the extraction of organs be performed only in the case of his/her true death.15

In the meantime, other respected Catholic doctors and ethicists like Paul Byrne MD, Alan Shewmon MD, and E. Christian Brugger PhD, as well as other doctors, nurses, and ethicists raised alarms about the validity of brain death criteria, including the lack of standards for testing from one hospital to another and the continued survival of some patients declared brain dead for years. They cite cases where such patients grew, achieved puberty, gestated their unborn baby for months, etc., as well as the reported cases of recoveries like Zach Dunlop’s.

In response to the paucity of such critiques at Vatican conferences, a conference called “Signs of Life,” featuring critics of brain death from all over the world, was held near the Vatican in February 2009.16

Now with more and more people alarmed about the issue of brain death, especially when organ transplantation is involved, it seems that the controversy is far from over.

PERSONAL OBSERVATIONS

Back in the 1970s when I was a young intensive care unit nurse, no one I knew questioned the new innovation of brain death. We trusted the experts.

However, as the doctors diagnosed brain death in our unit and we cared for these patients until their organs were harvested, some of us became uncomfortable. For example, doctors told us that these patients would die anyway within two weeks even if their ventilators were continued, but no studies were cited. I asked many questions but was told that greater minds than mine had it all figured out. It was years before I realized that these doctors did not have the answers to my concerns either.

Over the ensuing years, I began to see many more changes in brain death diagnosis and organ transplantation that alarmed me.

These include the innovation in the 1990s of Donation after Cardiac Death (DCD, formerly known as non-heart beating organ donation), in which brain death need not be determined but instead is based on when (or if) a critically ill — but not brain dead — patient stops breathing within an hour after the ventilator is removed with the agreement of the family.

While the general public is mostly unaware of DCD, such organ donor protocols are now policy in both Catholic and secular hospitals. Ironically while so many Catholic ethicists and conferences endorse brain death as the true standard for death, the lack of brain death standards in DCD is virtually ignored. One of the innovators of DCD organ transplantation, Dr. Michael DeVita, even admitted “the possibility of [brain function] recovery exists for at least 15 minutes” after heartbeat and breathing stops but stated that “the 2-minute time span (before organ removal) probably fits with the layperson’s conception of how death ought to be determined.”17

It is frightening but perhaps illuminative that one of the first known potential DCD donors was a conscious woman with severe multiple sclerosis who requested that her ventilator be removed and that her organs be taken when she stopped breathing.18 (In the end, like a significant number of other DCD donors,19 she continued to breathe for too long for her organs to be usable.)

Other developments and proposals were also disturbing: Paying living donors for organs, presumed consent so that only people who signed a paper saying that they did not want their organs taken were exempt, some doctors in Belgium touting their success pairing assisted suicide/euthanasia with organ transplantation20 and even some ethicists proposing that the dead donor rule itself be eliminated in order to get more organs to transplant.21 The dead donor rule is an ethical norm that states that the donor must be dead before organs are harvested and the harvesting itself must not cause the death of the donor.22

On the other hand, I also saw cases where families were told that their loved one was brain dead for the purpose of withdrawal of treatment, not organ transplantation. When I pointed out that some of these patients continued to breathe on their own after the ventilator was removed and thus were obviously not brain dead by any criteria, I was often met with shrugs and comments like “close enough” or “she was going to die soon anyway.” Attitudes like that chilled me to the bone. It seemed that pessimism, hubris, and misplaced sympathy — rather than evil intent — trumped ethical integrity. The secular media often echoes this apathy, especially when it erroneously equates coma or the so-called “vegetative state” with brain death itself. The result can be lethal.

After years of study and prayer, my personal stand is rejection of two extremes: that brain death is settled science and ethics that no one dare even question; and that withdrawal of ventilators with or without organ donation is always tantamount to murder.

I believe that ventilators, like all other forms of treatment, are subject to the same traditional principle: Treatments that are futile in terms of survival or unduly burdensome to the person can be ethically withdrawn according to strict principles ensuring that death is not intended. I believe in the traditional hospice philosophy to neither hasten nor prolong death.

Personally, I have not signed a standard organ donor card because the wording is so vague (death, not brain death or DCD, is all that is mentioned) and in some states that card can even automatically override family decision-making. I have told my family that I agree to the donation of every tissue that can be used after a careful determination of natural death. Tissues like corneas, heart valves, bone, and skin are not dependent on immediate harvesting after determination of death.

I do not take this position lightly. Right now, I have a daughter-in-law who is in desperate need of a kidney transplant, the most common transplant. She has studied the issue and told her doctors that she wants a living donor. Living donors are generous family members, friends, or even strangers who willingly offer one of their two kidneys for transplant after testing for compatibility.

My daughter-in-law’s decision was based not only on ethical concerns about brain death and non-heart beating organ donation but also on the facts that organ availability is greater with living donor kidneys and that such kidneys last almost twice as long as cadaver kidneys and work immediately.23

Unfortunately, it is uncertain whether the controversy over brain death or even DCD will ever be completely resolved, even within the Catholic community of experts and authorities. However, I do have hope that the issue of organ transplantation that is such a prime motivator of brain death determination and DCD may someday become moot.

Not only have treatments like adult stem cell transplants and improved therapies helped many people with end-stage organ disease survive, but great strides are being made toward developing artificial organs. For example, just last year scientists in Australia grew a tiny but functioning kidney using human skin cells.24 If a person’s own cells can be used to grow an organ, that could eliminate the rejection problem that causes so many transplants to fail, as well as the need for the current powerful and expensive drugs used to prevent rejection.

In the meantime, there must be the honest, respectful discussion about the critical issues of brain death, DCD, and organ donation, based on the highest ethical principles and scrutiny.

FOOTNOTES

1 “Jahi McMath and Catholic Teaching on Determination of Death.” National Catholic Bioethics Center Resources. January 7, 2014. ncbcenter.org/resources/jahi-mcmath-and-catholic-teaching-on-the-determination-of-death

2 “Ethicists criticize treatment of teen, Texas patient” by Liz Szabo. USA Today. January 10, 2014. usatoday.com/story/news/nation/2014/01/09/ethicists-criticize-treatment-brain-dead-patients/4394173/

3 “‘She’s Still Asleep,’ Jahi McMath’s Mother Says of Brain-Dead Daughter” by Lisa Fernandez. Friday, Mar 28, 2014. NBC Bay Area. nbcbayarea.com/news/local/Shes-Still-Asleep-Jahi-McMaths-Mother-Says-of-Brain-Dead-Daughter-252700851.html

4 Ibid

5 “Was Zack Dunlap’s Recovery a Miracle?” by Nancy Valko, RN. Voices. Pentecost 2008. wf-f.org/08-2-Valko.html

6 “Brain-Dead Marlise Munoz’s Fetus Is ‘Distinctly Abnormal.’ Please, Texas, Let This Nightmare End” by Emily Bazelon. Slate. January 23, 2014. Online at:http://www.slate.com/blogs/xx_factor/2014/01/23/marlise_munoz_case_the_fetus_of_a_brain_dead_texas_woman_is_said_to_be_distinctly.html

7 “Husband of brain dead woman who sued to have pregnant wife’s life support turned off may be forced to pay for her hospital stay” UK Daily Mail. February 2, 2014. dailymail.co.uk/news/article-2550352/Marlise-Munoz-case-Husband-brain-dead-woman-sued-pregnant-wifes-life- support-turned-forced-pay-hospital-stay.html

8 “One life ends, another begins: Management of a brain-dead pregnant mother-A systematic review.” by Majid Esmaeilzadeh, Christine Dictus, Elham Kayvanpour, et al. BMC Medicine. 8:74, 2010. biomedcentral.com/1741-7015/8/74

9 “A Definition of Irreversible Coma-Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.” Journal of the American Medical Association. August 5, 1968, 205(6): 337-340.Online at:

http://jama.jamanetwork.com/article.aspx?articleid=340177

10 “Catholic Teaching Regarding the Legitimacy of Neurological Criteria for the Determination of Death” by John M. Haas, PhD, STL, KM. National Catholic Bioethics Center Quarterly. Summer 2011. Reprinted on CatholicCulture.org: catholicculture.org/culture/library/view.cfm?id= 9719

11 Ibid.

12 Ibid. (Cf. FAQ on “Brain Death”: ncbcenter.org/page.aspx?pid=1285# receiveOrgan).

13 Address to the 18th International Congress of the Transplantation Society. Pope John Paul II, August 29, 2000, §5.

Online at: http://w2.vatican.va/content/john-paul-ii/en/speeches/2000/jul-sep/documents/hf_jp-ii_spe_20000829_transplants.html

14 “Why the Concept of Brain Death Is Valid as a Definition of Death.“ Online at: http://www.casinapioiv.va/content/accademia/en/publications/extraseries/braindeath.html

15 “Address of His Holiness Benedict XVI to Participants at an International Congress Organized by the Pontifical Academy for Life.” November 7, 2008. Online at: https://www.wf-f.org/BXVI_Life08.html

16 “‘Brain Death’ is Life, Not Death: Neurologists, Philosophers, Neonatologists, Jurists, and Bioethicists” by Hilary White. LifeSiteNews.com. February 26, 2009. lifesitenews.com/news/archive/ ldn/1990/22/9022604

17 “The Death Watch: Certifying Death Using Cardiac Criteria” by Michael A. DeVita, MD, University of Pittsburgh Medical Center. Prog Transplant 11(1):58-66, 2001. Summary online at: http://www.researchgate.net/publication/11979624_DeVita_MA_The_death_watch_Certifying_death_using_cardiac_criteria

18 Michael A. DeVita and James V. Snyder, “Development of the University of Pittsburgh Medical Center Policy for the Care of Terminally Ill Patients Who May Become Organ Donors after Death Following the Removal of Life Support” in Procuring Organs for Transplant. Robert M. Arnold, et al, eds. Kennedy Institute of Ethics Journal. 1993 Jun; 3(2): 131-143. Abstract online at: http://muse.jhu.edu/login?auth=0&type=summary&url=/journals/kennedy_institute_of_ethics_journal/v003/3.2.devita01.html

Full issue at: http://muse.jhu.edu/journals/kennedy_institute_of_ethics_journal/toc/ken.3.2.html

19 “Organ Procurement after Cardiocirculatory Death: A Critical Analysis,” Mohamed Y. Rady, MD, PhD; Joseph L. Verheijde, PhD, MBA; and Joan McGregor, PhD. Journal of Intensive Care Medicine. 23(5), 2008. jic.sagepub.com/cgi/reprint/23/5/303.pdf

20 “Initial Experience with Transplantation of lungs recovered from Donors after Euthanasia,” by D. Van Raemdonck, et al. Applied Cardiopulmonary Pathophysiology. 15:38-48, 2011. applied-cardiopulmonary-pathophysiology.com/fileadmin/downloads/acp-2011-1_20110329/05_vanraemdonck.pdf

21 “The Dead-Donor Rule and the Future of Organ Donation,” by Robert D. Truog, MD; Franklin G. Miller, PhD; and Scott D. Halpern, MD, PhD. New England Journal of Medicine. 369:1287-1289, 2013. nejm.org/doi/full/10.1056/NEJMp1307220

22 “Is Organ Procurement Causing the Death of Patients?” by James Dubois. Issues in Law and Medicine. 18(1):21-41. citations. Excerpt online at: https://www.questia.com/library/journal/1G1-90440011/is-organ-procurement-causing-the-death-of-patients 2002-2003; cited in “Dead Donor Rule Definition,” duhaime.org/LegalDictionary/D/DeadDonorRule.aspx

23 “Living Donor Kidney Transplant,” Barnes Jewish Hospital. barnesjewish.org/living-donor-kidney-transplant

24 “Kidney grown from stem cells by Australian scientists,” by Jonathan Pearlman. The Telegraph. December 13, 2013.

http://www.telegraph.co.uk/news/worldnews/australiaandthepacific/australia/10520058/Kidney-grown-from-stem-cells-by-Australian-scientists.html

===================================================================================

Nancy Valko, RN ALNC is a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor. She and her family live in St. Louis.

Voices copyright © 1999-Present Women for Faith & Family. All rights reserved.

2011 Voices: Organ Donation: Crossing the Line: Linking the “right to die” with organ donation has opened a terrible Pandora’s Box

Voices Online Edition
Vol. XXVI, No. 4
Advent – Christmas 2011

Organ Donation: Crossing the Line: Linking the “right to die” with organ donation has opened a terrible Pandora’s Box

by Nancy Valko, RN

In the US, whether we are renewing our drivers’ licenses, watching the TV news or just picking up a newspaper, it’s impossible to miss the campaign to persuade us to sign an organ donation card. We see story after story about grieving relatives who have been comforted by donating a loved one’s organs after a tragic death, and grateful people whose lives have been changed by the “gift of life”. But in the understandable zeal to save or extend as many lives as possible through organ transplantation, are some ethical boundaries being crossed?

For example, since the early 1990s, a little-known but disturbing revolution has been occurring in organ donation. A new procedure now called “donation after cardiac death” (DCD) has been quietly added to brain death organ donation in more and more hospitals in the United States and in other countries. It was made possible by linking the so-called right to die with organ donation. Now, doctors in Belgium are using DCD criteria for determination of death to harvest organs after euthanasia.1

What is DCD?

In 1993, a whole issue of the Kennedy Institute of Ethics Journal2 was devoted to discussing a new pool of organ donors — patients who are not brain dead but who are on ventilators and considered hopeless in terms of survival or predicted “quality of life”. In these patients, the patient or family agreed to the withdrawal of life support and to a “do not resuscitate” order. The patient was then taken to an operating room where the ventilator was withdrawn. When (or if, see below) the breathing and heartbeat stopped within about one hour, doctors waited for usually two minutes before then pronouncing cardiac death rather than brain death. The patient’s organs were then harvested for transplant. At that time, this was called non-heart-beating organ donation (NHBD) but since then, some insisted that the term was confusing and the name morphed to donation after cardiac death (DCD). However, since hearts have now been transplanted and thus are obviously not dead, there is a current proposal3 to change the name to donation after circulatory death and keep the acronym DCD.

NHBD/DCD was unknown to the American public until 1997 when many viewers were shocked by a report on the influential US television show 60 Minutes that revealed little-known policies called NHBD at some hospitals that would allow taking organs for transplant from persons who could be, in narrator Mike Wallace’s words, “not quite dead”.

The 60 Minutes story explored the possibility that these NHBD policies were allowing doctors to discontinue life support, administer possibly harmful medications to some potentially salvageable patients, and harvest these patients’ organs for transplants using cardiac rather than brain death criteria. At the program’s end Wallace predicted that as a result of the broadcast the practice of NHBD (DCD) was unlikely to continue. But he was wrong.

INSTITUTE OF MEDICINE REPORTS ON ORGAN DONATION

This TV show caused a temporary firestorm of controversy, leading to a drop in organ donations and eliciting strong criticism of the 60 Minutes story by some transplant organizations. As a result, the Institute of Medicine (IOM) was asked to assess the NHBD/DCD policy. This resulted in two reports in 19974 and 20005 supporting NHBD/DCD with certain guidelines.

The first report did not condemn the practice but instead made recommendations such as waiting five minutes before harvesting organs after breathing and heartbeat stops. This report virtually extinguished media attention and public interest in the topic.

However, the second report showed that many — if not most — of the recommendations were not being routinely followed. The second IOM report even admitted that opinion was divided on the option of NHBD for the patient who is ventilator-dependent but conscious and who wants to stop life-sustaining treatment.

A later 2009 report, Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics,6 reexamined both brain death and NHBD/DCD and made many alarming discoveries about the practice of organ donation, such as wait intervals as short as 75 seconds before harvesting organs in some DCD cases. But in the end, both criteria for organ donation were supported and encouraged. Thus, controversies about organ donation have been virtually limited to bioethics and transplant groups — until recently.

ETHICAL PROBLEMS

However, in March 2011, the boundaries of NHBD/DCD organ donation were pushed even further by a proposal by the Organ Procurement and Transplantation Network (US) to mandate rule changes on DCD. Titled “Proposal to Update and Clarify Language in the DCD Model Elements. Affected/ Proposed Bylaw”,7 one important change would allow DCD for non-brain-injured patients on ventilators with “end-stage musculoskeletal disease, pulmonary disease or upper spinal cord injury” who consent to donation.

Gone is the requirement of an “assessment to determine whether death is likely to occur (after withdrawal of life support) within a timeframe necessary for organ donation” because “there is no industry standard that allows for a true assessment of the likelihood of death within a specific time frame. Each hospital establishes its own timeframe for organ acceptability.”8 These are just two of the proposed changes.

Although this proposal was open for public comment until June 2011, it went unnoticed until a September 19, 2011 Washington Post article, “Changes in controversial organ donation method stir fears”,9 was published and the controversy over NHBD/DCD erupted again.

But while ethicists quibble about technicalities with NHBD/DCD, crucial questions are not being raised: Is the “dead donor rule” that transplant experts are supposed to follow being corrupted by new determinations of death? How do doctors determine who is a “hopeless enough” patient who will die fast enough to get usable organs?

For example, at least 20% of NHBD/DCD donors do not die fast enough after withdrawal of a ventilator to have usable organs10 and are just returned to their rooms to die without further treatment. Doctors writing in the prestigious Journal of Intensive Care Medicine concluded that “There is little evidence to support that the DCD practice complies with the dead donor rule.”11 The dead donor rule is an ethical norm that states that the donor must be dead before organs are harvested and the harvesting itself must not cause the death of the donor.12

In addition, a determination of brain death that was the past standard for most organ donations is considered unnecessary for NHBD/DCD even though one of the strongest promoters of the DCD protocol, Dr. Michael DeVita, has admitted, “the possibility of [brain function] recovery exists for at least 15 minutes”. Nevertheless, Dr. DeVita defended waiting only two minutes before organ harvesting because he maintains that the person is unconscious and, as he writes, “the 2-minute time span probably fits with the layperson’s conception of how death ought to be determined”.13 In contrast, those of us with the responsibility to declare death are cautioned to take ample time in determining death even in hospice patients, lest death be declared too soon.

Additionally, a 2003 article in the New England Journal of Medicine illustrated a disturbing lack of objective medical standards for withdrawal of ventilators.14 This article admitted that no study was done to “validate physician predictions of patients’ future functional status and cognitive function”, and the researchers did not ask doctors to “justify their predictions of the likelihood of death or future function”.

With such subjective standards being used for withdrawal of ventilators, it should not be surprising that many potential NHBD/DCD procedures will not even result in a transplant because the patient will continue to breathe and have a heartbeat for longer than the usual one-hour time limit.

Most recently, an August 2011 article in the Internal Medicine News Digital Network15 cited a Canadian Medical Association Journal study on traumatic brain injury revealing that most of these patients’ deaths in ICU “stemmed directly from withdrawal of life-sustaining therapy, including 64 per cent of patients who died within three days of admission to an ICU” (emphasis added).

The authors of the study concluded: “Our study highlights the need for high-quality research to better inform decisions to stop life-sustaining treatments for these patients.” Such decisions could be a lethal mistake because these kinds of patients are often considered some of the best potential NHBD/DCD organ donors.

For example, a September 6, 2011 segment of US television’s Today show featured an interview with Shelli Eldredge, a young mother who was comatose after a traumatic brain injury from an accident in June.16 One doctor recommended stopping life support. Although Dr. Eldredge, Shelli’s husband, also believed it was medically impossible for her to recover from the brain injury, he wouldn’t give up. After a month, Mrs. Eldredge woke up and started speaking. Three months later, she was giving this interview — alert, articulate, and working toward a full recovery.

WHAT WE MUST DO

In 2003, the newspaper of the Archdiocese of St. Louis, the St. Louis Review, published an editorial17 calling for a moratorium and re-evaluation of NHBD/DCD for St. Louis hospitals, a recommendation widely criticized and then ignored. Now we have doctors in Belgium using lethal injections instead of withdrawing ventilators in NHBD/DCD protocols to harvest organs after euthanasia, and the Ethics Committee of Eurotransplant even formulating recommendations on organ donation after euthanasia.18

Linking the so-called right to die with organ donation, as NHBD/DCD does, has truly opened a terrible Pandora’s Box. Unfortunately, choice rather than principle is becoming the overriding ethic.

While organ donation can be a gift of life and a worthy goal, a civilized society must not allow the deaths of some people to be manipulated to obtain organs for others. We must demand transparency from organ transplant organizations and insist on public input for the protection of both the public and our health care systems. At the same time, we must also work tirelessly for universal laws against assisted suicide and euthanasia — before organ donation after euthanasia becomes yet another excuse for medically induced death.

References

1 “Initial Experience with Transplantation of lungs recovered from Donors after Euthanasia” by D. Van Raemdonck, et al. Applied Cardiopulmonary Pathophysiology 15:38-48, 2011. applied-cardiopulmonary-pathophysiology.com/fileadmin/downloads/acp-2011-1_20110329/05_vanraemdonck.pdf

2 Kennedy Institute of Ethics Journal. Volume 3, Number 2, June 1993. Online at: http://muse.jhu.edu/journals/kennedy_institute_of_ethics_journal/toc/ken.3.2.html

3 “Proposal to Update and Clarify Language in the DCD Model Elements. Affected/Proposed Bylaw”. Online at: optn.transplant. hrsa.gov/PublicComment/pubcommentPropSub_283.pdf

4 Non-Heart-Beating Organ Transplantation: Medical and Ethical Issues in Procurement (1997), Institute of Medicine, National Academy Press. Available online at nap.edu/openbook.php?record_id=6036

5 Non-Heart-Beating Organ Transplantation: Practice and Protocols (2000), Institute of Medicine, National Academy Press. Available online at: nap.edu/openbook.php?isbn=0309066417

6 “Controversies in the Determination of Death: a White Paper” by the President’s Council on Bioethics, The President’s Council on Bioethics. Washington, DC: January 2009. Available online at: bioethics.georgetown.edu/pcbe/reports/death/index.html

7 “Proposal to Update and Clarify Language in the DCD Model Elements. Affected/Proposed Bylaw”. Online at:

http://optn.transplant.hrsa.gov/PublicComment/pubcommentPropSub_283.pdf

8 Ibid.

9 “Changes in controversial organ donation method stir fears” by Rob Stein. Washington Post, September 19, 2011. Online at: washingtonpost.com/national/health-science/changes-in-controversial-organ-donation-method-stir-fears/2011/09/15/gIQAlY9agK_story.html

10 “Organ Procurement after Cardiocirculatory Death: A Critical Analysis”, Mohamed Y. Rady, MD, PhD; Joseph L. Verheijde, PhD, MBA; and Joan McGregor, PhD. Journal of Intensive Care Medicine. September/October 2008, available online at jic.sagepub.com/cgi/reprint/23/5/303.pdf

11 Ibid.

12 “Is Organ Procurement Causing the Death of Patients?” by James Dubois, 18 Issues L. & Med. citations.duhaime.org/I/IssuesLMed.aspx 21 (2002-2003), cited in “Dead Donor Rule Definition”. Online at: duhaime.org/LegalDictionary/D/DeadDonorRule.aspx

13 “The Death Watch: Certifying Death Using Cardiac Criteria” by Michael A. DeVita, MD, University of Pittsburgh Medical Center, Pittsburgh, Pa. Prog. Transplant 11(1):58-66, 2001. © 2001 North American Transplant Coordinators Organization.

14 “Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit” by Deborah Cook, MD, et al. New England Journal of Medicine, Volume 349:1123-1132, September 18, 2003, Number 12. Abstract available online at: content.nejm.org/cgi/content/short/349/12/1123

15 “Support Withdrawal Causes Most Deaths after TBI (traumatic brain injury)” by Mary Ann Moon, Internal Medicine News Digital Network. August 29, 2011. Online at: internalmedicine news.com/news/neurology/single-article/support-withdrawal-causes-most-deaths-after-tbi/f3409f41da.html

16 “Mom defies the odds after devastating accident” by Lisa Flam. MSNBC.com online at: today.msnbc.msn.com/id/44408465/ns/today-today_health/t/mom-defies-odds-after-devastating-accident/

17 “Organ Donation and the Definition of Death”, St. Louis Review, May 23, 2003. Online at: wf-f.org/review-organdonation.html

18 Report of the Board and central office of Stichting Eurotransplant International Foundation. 1.5 Recommendations approved: Ethics Committee. In: Oosterlee A, Rahmel A, eds. Annual Report 2008 of the Eurotransplant International Foundation. Eurotransplant International Foundation, Leiden, the Netherlands, 2008. p. 24, cited as footnote 22 in “Initial Experience with Transplantation of lungs recovered from Donors after Euthanasia” by D. Van Raemdonck, et al. Applied Cardiopulmonary Pathophysiology 15:38-48, 2011. Online at: applied-cardiopulmonary-pathophysiology.com/fileadmin/downloads/acp-2011-1_20110329/05_vanraemdonck.pdf

========================================================================================
Nancy Valko, a registered nurse from St. Louis, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor.

2009 Voices: Death and the Organ Donor

Voices Online Edition
Vol. XXIV, No. 1
Eastertide 2009

Women for Faith & Family
Celebrating 25 years of service to the Church
1984-2009

Bioethics Watch:
Death and the Organ Donor
by Nancy Valko, RN

In the early 1970s, I was a young nurse working with many trauma victims in a state-of-the-art intensive care unit and I loved it. Because of the high number of young accident victims, I was also often involved with organ donation from patients diagnosed as brain-dead. Asking shocked and grieving relatives about organ donation was the hardest part of my work.

Back then, “brain death” was a new legal and ethical concept stemming from an influential 1968 Harvard medical school committee paper titled “A Definition of Irreversible Coma”, which concluded that severely brain-injured patients who met certain criteria could be pronounced dead before the heart stops beating. Starting in the early 1970s, various state legislatures and courts acted to turn this “medical consensus” into a legally recognized standard for determining death by loss of all brain function. Patients declared “brain-dead” then could have their organs harvested while their hearts were still beating and a ventilator kept their lungs going. The brain death concept virtually created the modern transplant system because waiting to take organs until breathing and heartbeat naturally stopped usually resulted in unusable, damaged vital organs.

Like most people, I didn’t know the history of brain death back then and despite the tragic circumstances of my “brain- dead” patients, I was excited by the opportunity to participate in turning tragedy into the “gift of life”.

Over time, however, I developed some nagging concerns about the brain-death concept and I shared them with our intensive care doctors. I was told, as one doctor put it, “Nancy, greater minds than yours have already figured this all out so don’t worry about it.” It took me years to realize that this meant these doctors didn’t know the answers either.

DEATH AND CHOICE

Unknown to most people, controversy about brain death has simmered for years in the bioethics community. Some well-known physicians, for example, Alan Shewmon and Paul Byrne, argue that the current brain-death standard does not reflect true death. Others, such as Dr. Ron Cranford and ethicist Robert Veatch, argue that the brain-death standard should be stretched to include so-called “persistent vegetative” patients, further expanding the pool of potential organ donors.

Last August the bioethics world was rocked by an article by Drs. Robert Truog and Franklin G. Miller in the prestigious New England Journal of Medicine that made the shocking assertion that many organ donors were not really dead at the time their vital organs were harvested.1 This Harvard doctor and this National Institutes of Health bioethicist then proposed the radical idea that doctors should drop the rule requiring that people be declared dead before vital organs are taken in favor of merely “obtaining valid informed consent for organ donation from patients or surrogates before the withdrawal of life-sustaining treatment in situations of devastating and irreversible neurologic injury”. This, in Truog’s and Miller’s opinion, would preserve the current transplant system and still be acceptable to the public because “issues related to respect for valid consent and the degree of neurologic injury may be more important to the public than concerns about whether the patient is already dead at the time organs are removed.”

Perhaps as a result of articles like this, the President’s Council on Bioethics decided to explore the determination-of- death issues involved in organ transplantation. In January 2009, the Council published “Controversies in the Determination of Death: A White Paper”.2 Many of the report’s consensus conclusions were surprising and controversial themselves.

THE PRESIDENT’S COUNCIL ON BIOETHICS WHITE PAPER

The President’s Council on Bioethics white paper on the determinations of death made several startling admissions, including finding that some of the most fundamental rationales for brain death were wrong. The Council, citing scientific studies and observations, admitted that the brain is apparently not the central organizing agent without which the body cannot function for more than a short period of time. Years ago, many of us questioned why some supposedly brain-dead pregnant women could be maintained on ventilators — for even up to a couple of months in some cases — in order to help their unborn children develop and survive birth. Others observed that some supposedly brain- dead children could actually grow and even sexually mature if maintained on life support. It turns out that we were right to question this allegedly settled matter.

The Council also had to admit the little-known fact that brain-death tests vary widely from institution to institution, potentially leading to people who could be declared brain-dead at one hospital but at a different hospital still be considered alive. Personally, I was disappointed that the Council’s paper did not even mention instances like the recent Zach Dunlap case, in which every supposedly definitive brain-death test was done, but a last-minute response by Zach stopped the impending organ donation and Zach even recovered.3

But in the consensus opinion of the Council members, apparently the concept of brain death is just too big to fail. Accordingly, some members of the Council proposed that the term “brain death” be replaced with the term “total brain failure”. And with the new term, these members created a new justification for harvesting the organs of people declared to have this condition. According to this redefinition, the brain is important not because it controls physiological processes, but because these processes represent “engagement with the world”.

This “engagement with the world” takes three forms: openness to the world, an ability to act on the world, and the need to do so. These abstract requirements can be met by something as basic as breathing but they are not met by physiological activities that continue in people who have allegedly lost all neurological function. This, the Council members insisted, is enough to spare breathing, brain-injured people like Terri Schiavo from a diagnosis of “total brain failure”. Ironically though, this assertion does not protect people like Terri from having vital organs removed during the time when they are initially placed on a ventilator because doctors can then use another, newer determination of death called “donation after cardiac death” or DCD (formerly known as “non-heartbeating organ donation” or NHBD).4 The Council’s white paper also addresses this type of death determination and, in the process, makes more startling admissions.

DCD/NHBD was developed in the early 1990s to promote a newer standard of determining death for the purpose of organ donation. DCD/NHBD describes a procedure in which a person is declared hopelessly brain-injured or ill but not brain-dead and, with the consent of the patient or surrogates (or potentially even a “living will”-style document), has his or her ventilator removed with the expectation that breathing and heartbeat will stop within about 1 hour. When the heartbeat and breathing stop for usually about 2 to 5 minutes, the person is declared dead and the organs are taken for transplant. If the person’s heartbeat and breathing do not stop within the allotted time, the transplant is called off and the person is left to die without further treatment.

The Council’s white paper admitted that the legal definition of irreversible cessation of heartbeat and breathing used to justify DCD/NHBD has problems. Most people would consider “irreversible” in this context to mean that the heart has lost the ability to beat. But in DCD/NHBD, “irreversible” instead means that there is a deliberate decision not to try to restart the heart when it stops and that enough time has elapsed to ensure that the heart will not resume beating on its own. However the Council had to admit the dearth of scientific evidence supporting this determination. In some cases involving babies, for instance, the heart is harvested and actually restarted in another baby.

The Council also admitted that even fully conscious but spinal-cord-injured patients have become DCD/NHBD donors when dependent on a ventilator. This sad fact is the result of virtually all withdrawal-of-treatment decisions now being considered legal and thus ethical.

The Council also noted that even though doctors are advised to take their time determining death when a natural death occurs, the interval between declaring death and starting transplantation in a DCD/NHBD patient has been as short as 75 seconds. It seems obvious that the push for a speedy declaration of death is not about new scientific information determining the moment of death but rather a desire to quickly get organs because “[t]he longer a patient removed from ventilation ‘lingers’ before expiring, the more likely are the organs destined for transplantation to be damaged by warm ischemia [lack of adequate blood flow]”.5 But even while expressing concerns, the Council still supported the DCD/NHBD concept in the end.

Despite pages discussing these DCD/NHBD issues, the Council unfortunately ignored a most crucial issue: How do doctors determine who is a “hopeless enough” patient with functioning vital organs and who will also die fast enough to get usable organs? The Council never mentioned articles like the one in the September/October 2008 issue of the Journal of Intensive Care Medicine, which stated “Donation failure [patients who don’t die fast enough to have usable organs] has been reported in at least 20% of patients enrolled in DCD”. Those authors also concluded that “There is little evidence to support that the DCD practice complies with the dead donor rule”.6

WE ARE ALL AFFECTED

While organ donation is a worthy goal when conducted ethically, it is very dangerous when physicians and ethicists redefine terms and devise new rationales without the knowledge or input of others, especially the public. This has been happening far too often and far too long in many areas of medical ethics and the consequences are often lethal.

Opinions about medical ethics affect all of us and our loved ones. And good medical ethics decisions are the foundation of a trustworthy medical system. We are constantly exhorted to sign organ-donor cards and join state organ registries but are we getting enough accurate information to give our truly informed consent? This question is too important to just leave to the self-described experts.
Notes

1 “The Dead Donor Rule and Organ Transplantation”, R. D. Truog and F. G. Miller. New England Journal of Medicine, August 14, 2008.

2 Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics, The President’s Council on Bioethics. Washington, DC: January 2009. Available online at: https://bioethicsarchive.georgetown.edu/pcbe/reports/death/

3 “Was Zach Dunlap’s Recovery a Miracle?”, Nancy Valko, RN. Voices Vol. XXIII, No. 2, Pentecost 2008. Available online at www.wf-f.org/08-2-Valko.html.

4 “Non-heart beating organ donation and the vegetative state”, George Isajiw, MD and Nancy Valko, RN. March 2004. Available online at www.wf-f.org/NHBD-VatMar2004.html.

5 Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics, page 82.

6 “Organ Procurement after Cardiocirculatory Death: A Critical Analysis”, Mohamed Y. Rady, MD, PhD, Joseph L. Verheijde, PhD, MBA, and Joan McGregor, PhD. Journal of Intensive Care Medicine. September/October 2008, available online at http://jic.sagepub.com/cgi/reprint/23/5/303.pdf.
Nancy Valko, a registered nurse from St. Louis, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor.
**Women for Faith & Family operates solely on your generous donations!

WFF is a registered 501(c)(3) non-profit organization. Donations are tax deductible.
Voices copyright © 1999-Present Women for Faith & Family. All rights reserved.

2008 Voices: Was Zack Dunlap’s Recovery a Miracle?

Voices Online Edition
Vol. XXIII, No. 2
Pentecost 2008

Was Zack Dunlap’s Recovery a Miracle?

As Easter arrived, NBC’s news show Dateline breathlessly ran a story1 about a teenage boy declared “brain dead” who nevertheless began to recover just hours before his organs were scheduled to be harvested.

Last November, 21-year-old Zack Dunlap was declared dead 36 hours after flipping his 4-wheeler ATV. Official word of his death was even reported to Oklahoma authorities. The parents were told that their son was brain dead and they knew he had signed an organ donor card. After seeing a brain scan apparently showing no blood flow to his brain, the parents agreed to donate his organs.

However, Zack jerked his foot when a nurse ran a sharp object up the bottom of his foot. Although skeptical at first, soon even the doctors agreed that he was showing purposeful movement and the organ removal was cancelled. Five weeks later, Zack was transferred to the Jim Thorpe Rehabilitation Hospital in Oklahoma City.

Today, just four months later, it is almost impossible to tell that Zack ever had an accident, much less a catastrophic one. He speaks clearly, walks without assistance and is planning to go back to work. He now insists that that he heard a doctor say he was dead and that this “just made me mad inside”.

During the broadcast of this amazing story, much was made of Zack’s grandmother’s prayer for a miracle. Zack’s doctors continue to insist that no mistakes were made in Zack’s diagnosis of brain death and the parents agreed, saying “There’s no blame in a miracle.”

So have we indeed witnessed a replay of the Lazarus miracle? Probably not.

THE TRUTH BEHIND MOST MIRACLES

I fervently believe in the enormous power of prayer. I believe that God can and still does perform miracles but even when recovery doesn’t happen or is less than desired, prayer always helps.

As a nurse, I have seen many amazing recoveries over the years, ranging from the purely physical to the deeply spiritual. Intense prayer has accompanied many of these recoveries, but some, to my knowledge, have not. Of course, people like my paternal grandmother have made a habit of praying for anyone who most needed prayer, but I know from personal experience that there are no special words or prayers guaranteed to make a recovery happen. In the end, we always have to trust God.

But there is a larger issue: Are we conferring too much similar trust in the wisdom of the medical and ethical establishments?

It is ironic that true miracles such as the Resurrection and those verified at Lourdes are often dismissed as fake by the scientific establishment, but recoveries such as Zack’s are routinely seen as “miraculous” rather than as problems that need rigorous scrutiny or even opportunities to learn more.

Countless times over the years, I have seen doctors turn out to be wrong when they have given families a dire prognosis about their loved one. Honest mistakes do happen but with time and care, a surprising number of such patients survived and some even fully recovered. In the past, however, we weren’t in such a rush to withdraw treatment or donate organs. Today, a dire prognosis can be a death sentence.

In Zack’s case, barring a true miracle, it seems most likely that the doctors were well-intentioned but frighteningly wrong.

The diagnosis of brain death itself can be problematic and is still being debated even in Catholic circles.2 But while debate will continue over the validity of brain death, it seems obvious that we also need much more scrutiny of the ethics and practicality of applying that theory. At the very least, brain death is not a term to be used lightly.

For example, despite claims that brain death soon results in the end of all bodily function, we now have cases of pregnant “brain dead” women able to live for even months until their babies could be delivered. At the present time, the tests required to diagnose brain death can vary widely from hospital to hospital. When I personally served on an ethics committee at a local hospital years ago, I was appalled when one young doctor proposed that our hospital adopt the least strict brain death tests so that we could obtain more organs. This can have lethal repercussions even outside the context of organ donation.

For example, recently an elderly Minnesota woman’s family was told that she was brain dead after a massive stroke. No organ donation was planned and the family decided to take the 65-year-old woman home to die. Less than a month later, she was awake, talking and the doctors now say there is a possibility of a full recovery.3

And, as I have written before, there is now a big push for organ donation policies to include taking organs from people who are not brain dead, but whose families or guardians agree to withdraw life support and donate the organs when (or if) the heart stops within about an hour.4 This kind of organ donation is called non-heartbeating organ donation (NHBD) or donation after cardiac death (DCD). Currently, a California surgeon is fighting charges that he used drugs to hasten a disabled man’s death in order to obtain his organs using this kind of organ donation.5

MEDICAL MIRACLES

Scientists do agree on at least one thing. There’s a lot we don’t know about the human body, especially the brain. In the meantime, we have become used to the term “medical miracles” when new discoveries are made.

In the past, for example, we have had the development of CPR (cardiopulmonary resuscitation), which literally changed our legal definition of death from the cessation of heartbeat and breathing to the irreversible cessation of heartbeat and breathing. Countless lives that could have ended prematurely are now being saved. And just by not giving up, we have discovered that drowning victims can sometimes recover full brain function after being submerged in cold water for a prolonged period of time.

In recent years, careful observation and new technology is showing us that many people thought to be in a coma or the so-called “vegetative state” can indeed think and feel.6 Unfortunately, and despite numerous cases of people waking up even years after being diagnosed as comatose or “vegetative”, many doctors and ethicists continue to insist that such people are hopeless and better off dead.

Death penalty opponents hold that it is better for ten guilty men to live than for one innocent man to die. Ironically, that same rationale is seldom applied to such patients.

LESSONS TO BE LEARNED

In the past generation, we have seen a societal U-turn from “sanctity of life” to “quality of life”. Thousands of people sign “living wills” and other advance directives stating that they don’t want even simple measures such as food and water or antibiotics in the event that they do not have full mental function. Futility policies to allow the removal of basic medical care even against the patients’ or families’ wishes are becoming increasingly common, even in Catholic hospitals.7 More and more countries are legalizing assisted suicide and even outright euthanasia.

Terminal sedation, when used to make a person unconscious until he or she dies from dehydration, is now viewed by many as an ethical and legal substitute for euthanasia.8 Some ethicists, like Peter Singer of Princeton University,9 insist that human beings actually lack “personhood” when diagnosed as “vegetative” or severely brain-impaired and that caring for such people is a waste of health care resources.

In light of this new view of human worth, it is disappointing but not surprising that Zack’s dad, like many other well-meaning but misguided people, would say, “He lived life to the fullest. And laying in bed the rest of his life? That wasn’t an option.” This same rationale is used every day to deny basic care to even conscious people like the frail elderly, people with severe disabilities, patients with Alzheimer’s, etc. Society seems to be quickly forgetting that there is a very real difference between withdrawing futile and/or burdensome treatment from someone near death and actually causing or hastening the death of a vulnerable person.

In the final analysis, it seems that the story of Zack Dunlap’s recovery is less a story about a miracle than a cautionary tale about a close call. If Zack indeed had his organs harvested, this whole incident would be seen as just another successful case of organ donation. If Zack had survived with severe brain damage, we probably would have never heard about him at all.

While the media may treat Zack’s recovery as a feel-good human interest story, I believe that we should instead consider Zack’s case as both a wake-up call and an opportunity: We desperately need reform of some of our questionable medical and ethical policies as well as some of our own attitudes toward the sick and disabled. And we need to scientifically examine medical mysteries like Zack’s recovery so that possibly even more people can benefit from such medical marvels.

As far as miracles go, perhaps Zack Dunlap’s recovery was God’s way of reminding us that we still don’t know as much as we think we do and that we still need to take good care of each other.

Notes:

1 “‘Dead’ man recovering after ATV accident”, March 23, 2008. available online at: http://www.msnbc.msn.com/id/23768436/

2 “Vatican resuscitates issue of whether brain death means total death” by Carol Glatz. Catholic News Service. September 15, 2006. Available online at: http://www.catholicnews.com/data/stories/cns/0605285.htm.

3 “Lake Elmo woman makes miracle recovery from ‘brain dead’” by Allen Costantini, KARE 11 News. Feb 13, 2008. Available online at: http://www.kare11.com/news/news_article.aspx?storyid= 498009.

4 “Ethical Implications of Non-Heart-Beating Organ Donation” by Nancy Valko. Voices, Michaelmas 2002, Volume XVII, No. 3. Available online at: http://www.wf-f.org/02-3-OrganDonation.html.

5 “Surgeon Accused of Speeding a Death to Get Organs” by Jesse McKinley. New York Times. February 27. 2008. Available online at: http://www.nytimes.com/2008/02/27/us/27transplant.html?_r=1 &oref=slogin&ref=us&pagewanted=print.

6 “What if There Is Something Going On in There?” by Carl Zimmer. New York Times. September 28, 2003. Online at: http://www.nytimes.com/2003/09/28/magazine/28VEGETAT.html? pagewanted=print&position=.

7 “The Duty to Die: Scouting the Next Pro-Life Battlefield” by Deborah Sturm. insidecatholic.com. March 24, 2008. Available online at: insidecatholic.com/Joomla/index.php?option=com_content&task=view&id=3150&Itemid=48.

8 “When Is Sedation Really Euthanasia?” by Kathleen Kingsbury. Time. March 21, 2008. Available online at: http://www.time.com/ time/health/article/0,8599,1724911,00.html. See also my article “Sedated to Death? When ‘comfort care’ becomes dangerous” (written in 2002) at http://www.wf-f.org/02-2-terminalsedation.html.

9 “Taking Life” by Peter Singer. Excerpted from the book Practical Ethics, 2nd edition, Cambridge, 1993, pp. 175-217. Available online at: http://www.utilitarian.net/singer/by/1993—-.htm.
Nancy Valko, a registered nurse from St. Louis, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor.

**Women for Faith & Family operates solely on your generous donations!

WFF is a registered 501(c)(3) non-profit organization. Donations are tax deductible.

Voices copyright © 1999-Present Women for Faith & Family. All rights reserved.