A Work in Progress
by Cathy Peters, RN, MS, APRN-BC
Historically the “death debate” has been long and intensive, and the definition of death has evolved over the centuries. The ancient civilizations looked for an “absence of a heartbeat” and a “lack of breathing.” By the eighteenth century, however, fears of a misdiagnosis of death led doctors to suggest that the only reliable method of establishing death was to look for signs of putrefaction. The traditional heartbeat test saw its return with the invention of the stethoscope in the early nineteenth century, but later advances in medical science ended the “still heart” as the mode of determining death. During the 1960’s and 1970’s there were many papers on irreversible comas, but it was the Harvard Committee which, after several years of research, introduced the terminology of “brain-stem death.”
“Brain-stem death,” more commonly known as brain death, has caused controversy throughout the world. Some claim that this terminology was devised to increase the harvesting of organs by legitimizing the ending of life.1 Others are adamant that “concepts of brain death did not evolve to benefit organ transplants.”2 However, the number of people who are actually diagnosed with “brain death” is relatively small. For example, in the United States about 15,000-20,000 deaths each year are brain deaths.3 Although this may seem a large figure, it is less than one percent of all deaths in the US.
Testing for “brain death” requires detailed testing over a period of time to evaluate a person’s functions and responses to various stimuli. There are three important strands to this test. Firstly, the patient must be in an irreversible severe coma. However, as some conditions that produce the symptoms of coma (e.g. hypothermia) turn out to be reversible, it is imperative that these conditions be ruled out. Secondly, all brain stem reflexes must be absent: the electroencephalogram (EEG) of a brain dead patient will show no electrical activity; the introduction of mild radioactive isotopes will confirm an absence of blood flow to the brain; and the body’s sight and auditory reflexes will be absent. For instance, in patients who are “brain dead,” the pupils will not contract or expand in response to light, and the eyelid will not blink when a swab is run across the eye. It is not unknown for relatives to watch these tests so that they can acknowledge that their loved one is truly dead. Thirdly, the patient, once disconnected from the ventilator, must make no spontaneous attempts to breathe. The absence of ventilation is confirmed by blood tests that record the elevations of carbon dioxide in the bloodstream. It is only when there is a complete and irreversible cessation of brain function that a patient can be declared brain dead.
Although confirming a person dead in this manner appears to be a systematic and routine procedure, the development of the term “brain death” has not been without criticism. The nature of brain death adds a further pall of philosophical and religious entanglement to the cloudy issue of organ donation. What do we mean by the term “dead”? Is a person truly dead if the body is still functioning, albeit in an unorthodox manner? If body and soul have a symbiotic nature, is it not a “dangerous superstition to think that because we have lost a capacity then the soul has left the body”?4 Moreover, accepting that a relative—now diagnosed brain-stem dead—is truly dead forces the patient’s loved ones to contradict a desire to hope for the best, possibly leading to “emotional chaos” for family members who agree to switch off the machine.5
Statistics indicate that even though a majority of us might be happy to donate our organs after our death, the reality is that most of these organs will be useless to transplant specialists. Corneas can be transplanted for up to 20 days after death, whereas a heart must be transplanted within five hours if the operation is to be a success. Therefore, it is not surprising that those patients who are described as “brain dead” are potentially the most valuable source of donated organs, as the very best donor is the “one who, when under the knife, is as close to alive as possible.”6 These donors can be kept “alive” for a long period to search for a matching donee, therefore giving the best overall chance of success. This means that far from being an autonomous individual with a desire to donate, the donor becomes a vessel in the transplantation procedure, akin to being placed on the shelf of an organ supermarket waiting for the most appropriate buyer.
There is concern that a patient can be classified as “brain-stem dead” when, in fact, the potential donor is not—just to ensure the harvesting of organs. Although there are strict procedures in the UK to ensure that the transplant team has nothing to do with the legal declaration of brain-stem death, this has not allayed fears. It is impossible to tell how much is urban myth and how much is reality. As a young student in a hospital, I heard a variety of rumors about organs being “whipped-out” while the patient was still alive. This, of course, could be an exaggerated account of the organ retrieval procedure on patients who were classified as “brain-stem dead.” Doctors and authors have been at pains to explain time and again that “brain dead” means “dead.” The problem is that these “dead” patients appear to be sleeping, so much so that there are some families who refuse to accept the concept that their loved one is dead.7 Added to this, it is not unknown for some patients who are brain dead to move their hands toward the chest automatically, presenting a praying posture. This is known as the Lazarus sign.8 Those of a religious nature may mistake this as a form of resurrection and violently oppose any suggestion of organ donation.
There have been publicity campaigns mounted with the intention of recruiting donors to the list, but very little information is volunteered regarding the process of organ harvesting. Further, if a patient is declared “brain-stem dead,” does that mean that the procedures applied cause no pain? It has been suggested that anesthetics should be applied to these donors before organs are removed.9 The main reason for this is to reduce the associated hypertension and tachycardia. This reduces trauma, not so much for the patient, but to those experienced in operative procedures who know that these symptoms indicate pain or awareness.
Such a suggestion brought criticism from others in the medical profession who have stated that it would reduce public confidence in these procedures. The supporters of organ donation fear that the public might conclude that, if these patients exhibit elements of consciousness during the organ retrieval phase, they are in fact alive.10 This leads to the uneasy query that lurks in the back of minds: is the method of brain-stem testing the correct method of diagnosing death? More than one patient has been deemed “brain dead” and prepared for organ retrieval, only to be re-examined and “discharged home alert and orientated.”11 Misdiagnosis is far from a thing of the past, and it appears that such incidents still occur today.
Recently in California, there were reports of a misdiagnosis of brain-stem death after the family agreed to organ donation. The family became suspicious and called in a third doctor.12 The daughter reported the doctors as “waiting like vultures, waiting for someone to die so they could scoop them [the organs] up.” She added that, after the second test, the first doctor just “came in and threw the paper on my dad’s legs and said, ‘We got two signatures. We’re pulling the plug.’”13 Those at the forefront of medical ethics spoke quite harshly of the case, confirming that “it only takes one or two of those situations to really sour the public and sour those upon whom we depend so much for donation.”14 One of the main objections people have with signing up on the donor registry, or offering a relative’s organs, is the fear that the person concerned will not be dead at the time of harvesting.15
Potentially more alarming to the would-be donor is “donation after cardiac death” (DCD). Doctors are turning to these types of potential donors in the hope of obtaining more viable organs for transplantation. DCD donors are patients who have brain damage from, for example, a stroke or an accident. However, they do not necessarily fulfill the criteria of brain-stem dead. Most of these patients will be in an intensive care unit, supported by a ventilator. If the ventilator is switched off, the heart will usually stop beating, at which point that patient will be declared “dead,” and the organs will become available for transplantation. It is not always possible to tell exactly what will happen when the life support is removed, and it is difficult to predict how quickly a patient will die. There have been cases where patients have shown a determination to hang on to life once the machines were switched off. Many institutions in the US seem to advocate a one-hour observation period after life-support mechanisms have been withdrawn from a patient to make the final diagnosis of cardiac death—during which healthcare institutions should prepare the family to wait. However, government organizations like the US Institute of Medicine have suggested that there should only be a five-minute lapse between cessation of heartbeat and organ retrieval.16 The ethical considerations here are immense, requiring the creation of policies that deal with the patient who refuses to “die on time.”17
Developments in medical science render it possible to “cheat death” in many ways unavailable decades ago, leading to ethical and religious conflicts in many areas. Those who wish to donate organs after death should be aware of the potential dilemmas their loved ones will face. Some families will forbid organ retrieval despite the wishes of the donor. Families broadly in favor of organ donation may find themselves looking at their breathing child while being asked to consent to the removal of life support and vital organs. The biggest difficulty facing many of these relatives will be convincing themselves that their loved one is truly dead.
The acceptance of a loved one’s “brain-stem death” requires a compliance of one’s religious or spiritual beliefs as well as an assessment of medical knowledge, and it should not be rushed. In regards to DCD techniques, it is imperative that the time between cessation of heartbeat and the opening up of the chest cavity should be sufficient for the families to say their last goodbyes. Consequently, despite the desperate shortage of human organs for transplants, organ retrieval from those who have “died” should be avoided until such a time as all concerned can be satisfied that the would-be donor really has “moved on.”
- “Dr John Yun, oncologist, testified to the [Canadian Parliamentary] committee 1999 that organ harvesting was the impetus behind the brain death theory that has been accepted by the medical profession since 1968.” John-Henry Westen, “First Ever Face Transplant – Face Came from Live Donor.” LifeSiteNews, December 9, 2005, http://www.lifesitenews.com/news/archive/ldn/2005/dec/05120907.
- Calixto Machado and others. “The concepts of brain death did not evolve to benefit organ transplants.” Journal of Medical Ethics 33 (2007): 197-200.
- “Understanding Death Before Donation,” The Gift of a Lifetime: Understanding Donation, www.organtransplants.org/understanding/death/ (accessed February 7, 2011).
- David A. Jones, “Nagging doubts about Brain-death,” Catholic Medical Quarterly, February 1995.
- Masahiro Morioka, “Two Aspects of Brain Dead Being,”Eubios Journal of Asian and International Bioethics 10 (2000):10-11.
- Pauline W. Chen, “Dead Enough? The Paradox of Brain Death,” The Virginia Quarterly Review, Fall 2005.
- See note 5above.
- Masahiro Morioka, “Reconsidering Brain Death: A Lesson from Japan’s Fifteen Years of Experience.” Hastings Center Report 31, no 4 (2001): 41-46.
- Young P, and Matta B, “Anaethesia for organ donation in the brainstem dead—why bother?” (Editorial), Anaesthesia 55 (2000): 105-6.
- Christopher Doig and Ellen Burgess, “Brain death: resolving inconsistencies in the ethical declaration of death,” Canadian Journal of Anesthesia 50 (2003): 725-731.
- Robert D. Truog, “Is It Time to Abandon Brain Death?” Hastings Center Report 27, no 1 (1997): 29-37.
- Charles Ornstein and Tracy Weber, “A Potential organ donor was wrongly declared brain-dead” Los Angeles Times, April 12, 2007, www.latimes.com/news/local/la-me-transplant12apr12,0,3456303.story?coll=la-home-local (accessed March 7, 2011).
- Dr. David J. Powner, a professor of neurosurgery and internal medicine at the University of Texas Health Science Center at Houston as reported, Ibid.
- Sanner M, “A comparison of public attitudes towards autopsy, organ donation and anatomic dissection: a Swedish survey. JAMA 271 (1994): 284-8.
- In December 1997, the Institute of Medicine (IOM) recommended, amongst other things, a five-minute interval between cardiac death and organ retrieval. John T. Potts and Roger Herdman. Non-Heart-Beating Organ Transplantation: Medical and Ethical Issues in Procurement Washington DC: Institute of Medicine, 1997.
- Susan K. Palmer, “What Is Organ Donation After Cardiac Death? Why Do I Need to Know?” American Society of Anesthesiologists, October 2005.
KAREN DYER, LLM, started her working life as a student therapeutic radiographer treating patients with cancer in a hospital in England. She then trained as an actor/teacher and founded a very successful children’s theatre company that toured in the UK. She eventually retrained as a lawyer specializing in criminal and medical law. Her areas of interest include surrogacy and organ donation, and she is currently researching for her thesis on legal dilemmas for those born with an intersex condition.
About the artist
CATHY PETERS is clinical faculty at the University of Rochester School of Nursing, and the School of Medicine Division of Ethics, Palliative Care and Medical Humanities (Rochester, NY). She encourages colleagues to process their clinical experiences through the arts and humanities both as a source of inspiration and renewal. Cathy is an avid photographer and award-winning collage artist. She considers patients and their families to be her greatest teachers.
Artist’s statement: The collage, A Work in Progress, was created in 1999, when Cathy was a graduate student learning about the process of ethics consultation and the elegance of palliative care. The title implies the collaboration and thoughtful deliberation inherent in these specialties. A Work in Progress also implies her own journey of grief after the sudden loss of her father in the 1990’s. This art represents an amalgam of experiences in managing end-of-life issues from both a personal and professional perspective.