Defining Death: Taking a second look at organ donation
By Camilla Gunnarson

The week of April 23-30 is National Organ and Tissue Donation Awareness Week (NOTDAW). Communities throughout Canada will be putting on events to promote the importance of organ and tissue donation, and Canadians will be urged to sign their organ donation cards.
           
Most people view organ donation as a generous and heroic act.  In fact, a 2001 survey by the Environics Research Group revealed that 96% of Canadians support the idea of organ and tissue donation. A total of 46% of Canadians have signed their organ donation cards or registered their intentions to be a donor with their province or territory.  However, 45% of Canadians remain uncommitted and that has stepped up organ donation campaigns.
           
With 4,000 Canadians waiting for organ transplants, many people are asking why numerous organs, capable of restoring good health, continue to go to waste?  Conversely, should anyone dare to question the specifics surrounding organ donation, reactions are swift and critical, lest lives be lost.
           
Advances in modern medicine have made organ and tissue donation a way to improve the health and in many cases save the lives of countless people. All of the world's major religions approve of the practice and respect the individual's right to make a personal decision about donating their organs, provided, organ donors will not have their lives interrupted prematurely and the transplant is performed in an ethically acceptable manner.
           
There are several ways individuals can donate their organs and tissues. Some donations can occur while an individual is still living, while other donations can be made upon death.
           
Donations from living donors, such as, a single kidney, a segment of the liver or the lobe of one lung, generally pose no ethical problems and hold much promise to increasingly meet the needs of people with failing organs.
           
However, post-mortem organ donation in today's culture is a dangerous and misunderstood practice. Most people are unaware of the moral and ethical concerns surrounding organ donation.  Namely, is the donor dead or alive at the time of the transplant?

Defining Terms:

It was once generally agreed upon that the medical criteria for determining death was, "the irreversible loss of heart and breathing function (cardiac death)."   Under this criteria, organ transplantations were attempted by harvesting the organs from people who had recently died.  However, these organs usually failed because they had deteriorated too much during the dying process.
           
In 1968, an ad hoc committee at Harvard formulated a new way of determining death - "the irreversible cessation of all functions of the entire brain, including the brain stem." In other words, neurological determination of death (NDD) or "brain death." Despite widespread national, international and legal acceptance of this criteria, significant differences exist in its application. In all Canadian provinces and territories, the legal definition of brain death is "according to accepted medical practices."  Therefore, the criteria for establishing "brain death" is not consistently applied and varies by individual hospitals or regions.
           
While most public information about organ donation emphasizes that organs can be taken only after "all efforts to save your life have been exhausted and brain death has been determined," not everyone agrees with the "brain death" criteria.
           
There is no general agreement that brain death is in fact death. Professor and Ethicist, Dan Wiker from University of Wisconsin, believes, "brain death is conceptually flawed"and Dr. Paul Byrne, former President of the Catholic Medical Association asserts that, "Brain death is not death…At the time of the removal of organs, the donor's heart is beating, his body is warm, and other vital organs are still functioning, even if there is medical assistance." Likewise, ethicist, Dr. Robert Truog stated, "despite familiarity and widespread acceptance, brain death remains incoherent in theory and confused in practice."
           
Several medical sources on both side of the debate confirm that there is no reliable way to determine the irreversible cessation of the function of the brain unless the entire brain has been destroyed. This cannot be established without destruction of the circulatory and respiratory systems. The use of electroencephalograms (EEG) to aid in the determination of "brain death" will record electrical activity only from the surface of the brain but not from the areas deeper within the brain. Evidence reveals that many people who fulfill the tests for "brain death" do not have irreversible cessation of functioning of the entire brain. Many of these patients have clear evidence of functioning of the brain at the midbrain and brainstem level and may have a functioning cortex. Cessation of all functions of the entire brain, whether irreversible or not, has not been linked necessarily to total destruction of the brain or to death of the person.
           
There have been several cases of protracted survival of brain dead patients. One such example involved 22 year-old Curt Coleman Clark who was injured in a car accident and was pronounced: "brain dead." His family agreed to donate his organs and doctors were about to remove them when suddenly his foot twitched. Curt was moved to an intensive care unit where he continued to showed more signs of life.
           
In another case, police told the parents of a fifteen year-old girl that their daughter, Jennifer, was dead after a car crash.  The emergency room physician who examined Jennifer said her eyes were "fixed and dilated" when she arrived at the hospital.  Her parents were asked to donate her organs. Two days later, Jennifer scratched out a message saying, "I want to talk to my mom."
           
This prompts the question, how can someone live if they are really brain dead?
           
It is not ethical to harvest organs from living persons if it will result in their deaths, even if death is inevitable due to natural causes. While most people who sign their organ donation cards believe that only a careful determination of "brain death" will allow their organs to be removed, these cards do not say how death will be actually determined. The condition of the body after someone has died is different from the clinical condition after the declaration of "brain death."
           
Whether it's intentional or not, the public is unaware that vital organs such as the heart, the lungs, the pancreas and the kidneys require that the donor be alive at the time of their removal, in order that they be useful for transplantation. Why the public does not know this is astonishing but it could explain why it is not uncommon for family members to override the consent of the donor once they learn more about the procedure involved in organ donation process.
           
How is a Post Mortem Donation Carried Out?  A typical scenario for organ harvesting occurs when a person who is in good health, usually between the ages of 5-55 is brought into the intensive care unit due to something like an automobile accident and as a result is experiencing head trauma. The patient is put on life support (ventilator) to enable a health care team to focus their efforts toward resuscitation.  If the doctor decides that the treatment is futile, the determination of "brain death" is applied.  A separate health care team determine if the patient has given his or her consent to donate his/her organs and that the family members are in agreement.  While the patient's vital organs are still functioning, the patient is paralysed but not given anything for pain. An incision is made and the beating heart and other organs are removed for harvesting. In reality, the removal of organs is what causes death.
           
Clinical death must be established with moral certainty in order to proceed with the removal of the organs. But since there is no agreement on whether "brain death" is a valid determination of actual death, how can we be sure the patient is really dead?
           
Determining who will live and who will die:  Newborns with the congenital anomaly, known as anencephaly - an absence of a major portion of the brain also fall victim of organ harvesting. Most anencephalic infants die within days or weeks without life support. One infant was known to live for 2.5 years as a result of aggressive life support.
           
Although a difficult experience, many parents consider it a privilege to give birth children with this abnormality.  Dr. Byrne recalls baby Angelina who lived 11 1/2 days. Her parents took her home from the hospital and cared for her, including tube feeding her. Angela's father shared, "Angelina was beautiful.  She had beautiful black hair. She added so much to our family."
           
Despite the fact that these babies may have some rudimentary forebrain tissue and a functioning brainstem, some in the medical community argue that these babies are "brain dead." They argue that these babies have no self-consciousness therefore we should be able to take their organs for transplantation while they are alive.
           
Echoing this sentiment was the Council of Ethical and Judicial Affairs of the American Medical Association who reversed its once help position of permitting organ transplants on anencephalic newborns only after they had died. In 1994, they declared it is, "ethically acceptable to transplant the organs of anencephalic infants even before they die"  (our emphasis).They concluded that the infant is deformed and lacks almost all brain tissue so that it is only doubtfully human.
           
Thankfully the Canadian Paediatric Society feels differently. Their 2005 position statement says, "Infants with anencephaly require the same respect for life given to other human beings." One of their recommendations is, "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."
           
Organ Donation Campaigns Intensify 

It has become evident that the number of organs from people declared "brain dead" will never be enough to treat all patients who need new organs. Moreover, the incidence of "brain death" is decreasing around the world because fewer people are sustaining brain injury due in part to the advent of airbags. Other reasons include, changes in the demographics of the general population who are generally much healthier than the previous generation, advances in critical care and trauma management.
         
So in an effort to obtain more organs, doctors and ethicists are expanding the limits of "ethics" involving organ transplants. One practice is the recovery of organs from non-heart-beating organ donors (NHBD). Hospitals in the United States, the United Kingdom, Spain, the Netherlands, Switzerland, Japan and other countries have established NHBD protocols.
           
These patients may be in a coma or have suffered a stroke or trauma and require a ventilator. The criteria for establishing a potential NHBD donor is that, "These patients are either competent with intolerable quality of life or incompetent, but not brain dead because of severe, generally neurological, illness or injury with an extremely poor prognosis as to survival or any meaningful functional status." Would conscious people like Terri Schiavo be judged as having an intolerable quality of life with little potential for a "meaningful" life?  
           
Because the NHBD patient does not meet the "brain dead" criteria, the patient instead is diagnosed as "hopeless" or in a "vegetative state." In these cases, the ventilator is withdrawn and doctors wait for the patient's heart and breathing to stop. They declare cardiac death either immediately or after a waiting period of two to five minutes and then begin to harvest the organs. Besides the ethical problems in choosing potential candidates for NHBD, withdrawing the ventilator does not ensure death.
           
One of the first patients considered for NHBD in the U.S. was a conscious, 48-year-old woman with multiple sclerosis who asked to have her ventilator stopped and her organs donated. This particular patient unexpectedly continued to breathe after the ventilator was removed and by the time she actually died, her organs were felt to have deteriorated too much for transplantation.
           
This begs the question; will disabled people be pressured into withdrawing life support? Disability advocate Diane Coleman thinks so. "There is going to be growing pressure on disabled people who are dependent on life support to 'pull the plug'. Allowing them to believe that they are being altruistic by doing so through organ donation will only increase the pressure on disabled people to choose to die in the belief that by giving their organs up, their lives can have some meaning. The danger is especially acute for people who are newly disabled, many of whom believe, falsely, that their lives can never be worth living".
           
There are serious ethical concerns involving the physician's determination of the patient's quality of life as "hopeless." In most cases, a ventilator is most often a short-term therapy used to support a patient's breathing during a crisis until he or she can resume breathing on their own. Are patients being denied time for recovery? It is virtually impossible to accurately predict whether the patient will die or what level of recovery he or she may eventually attain. How many times have we heard of cases involving patients who were not expected to survive and to the doctor's surprise, make a full recovery?
           
Ethical Alternatives: 

As the campaign to promote organ donation intensifies, it is important to know that research is being conducted that has resulted in real cures that do not depend on questionable methods.   
           
For example, recently, several teams of doctors around the world have treated 70 patients who were considered heart-transplant candidates with a procedure that involves taking stem cells from the patient's own blood and injecting them into the heart.  The procedure involves no risk of rejection since the cells are the patient's own (a common side-effect of organ transplants).  It also does not involve the morally objectionable use of embryonic stem cells.
           
Although the treatment is experimental at this stage, doctors are hopeful it will one day be a substitute for heart transplants. Dr. Valentin Fulga, CEO of Theravitae, one of the companies who offer the procedure said, "The treatment seems to be not only very safe, with no side effects, but also effective because they improve. "
           
Sixty-one-year-old Marie Carty had the procedure last Fall. Carty was in need of a new heart and she was afraid hers would not last during the long wait for a transplant.  Since having the procedure, she says, "The change is like night and day.  I feel like myself again, more energy, more stamina."  Her strengthened heart has led doctors to remove her from the transplant list.
           
In another medical breakthrough, doctors have been able to replace failing bladders in spina bifida patients, by taking a patient's own cells and growing them into an artificial organ (bladder) in the laboratory. The cells are not stem cells, but "progenitor" cells, which have the capacity to grow into other cells. The procedure has been performed on seven children with spina bifida almost five years ago and in each case the implant has been successful. 
           
The scientists who invented the artificial bladder will be using the same method to grow blood vessels, kidneys, livers and other organs later this year. Commenting on the exciting research, Dr. Laurence Klotz, chief of urology at Sunnybrook Health Sciences Centre in Toronto said, "I would say the principle that you can actually use bioengineered tissue to replace a human organ….is huge."
           
This research suggests that scientists will be able to grow new organs for people who have lost them to disease or injury and thereby reduce the backlog of patients waiting for replacement organs.
           
We are all profoundly concerned when our family members, friends and colleagues are faced with life-threatening illnesses or injury. But in our zeal to help those with failing organs, we cannot sacrifice the great moral principle of respect for all human life. The public has a right to know all of the details surrounding organ donation. Doctors and organ donation networks seriously risk loosing the public trust if they are not more forthcoming about informing the public how death is determined and how transplants are carried out. As noble of an idea of organ donation may be, there will always be a danger of prematurely taking someone's life in order to obtain organs unless a modification of the criteria of "brain death" and non-heat-beating donation is considered.

Camilla Gunnarson is a part-time editor of LifeCanada News.