Organ Donation FAQs
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The Power And The Choice Are Yours
by Michelle Sumner
C.L.A.S.S. Notes, Spring 1997 -- Many people die needlessly because of the shortage of available organs in this country. The number of deaths could be reduced if more people knew the facts about organ donation and understood how urgently donated organs are needed.
According to the United Network for Organ Sharing (UNOS), there are currently 51,422 people in the United States who are in need of organ transplants. One person is added to the transplant list every 18 minutes. Last year, 3,916 people died while waiting for organ transplants. This averages to about 10 preventable deaths every day.
There is a very hypocritical view of organ donation in America. According to a 1995 Gallup poll, 90% of Americans support the idea of organ donation and transplantation. However, less than one third of Americans actually participate in organ donation programs.
Because of the organ shortage, a person cannot receive a transplant until he or she becomes the patient with the most dire need in a particular area. This means a person may be put on the transplant list but may have to wait months, or sometimes years, before receiving an organ. If more organs were available, hospitals would be able to transplant patients sooner, while they were still somewhat healthy, thus increasing the patient’s chance for survival.
The cause of the organ shortage in America is simple: Not enough people choose to give the gift of life and become organ donors.
There are two main reasons why people don’t participate in organ donation programs. The first reason is that people are misinformed. Many people wrongly believe that if they are in an accident and the hospital knows they are an organ donor the doctors will not try to save them 1. Some people falsely believe their religion does not support organ donations2. Some people wrongly believe they are not the right age to donate3. Finally, some people fear their body will be mutilated in some way during organ recovery4.
The second reason people don’t agree to organ donation is that they are uniformed. They simply do not know they posses the power to save lives and they don’t know about the thousands of lives that could be saved or improved by organ and tissue transplantation.
I would like to tell you about Allen, a special friend of mine. Allen was one of the sweetest, happiest children I have ever known. His smile brightened up entire rooms and his heart was made of pure gold. He loved to lick the frosting off his cupcakes. But his cheerful disposition masked a lifetime of pain and suffering. Allen was born with a liver disease known as biliary atresia. He spent most of his life in and out of hospitals and surgeries.
Eventually Allen’s liver deteriorated so badly that he was placed on the liver transplant waiting list. A liver transplant was the ray of hope through the dark clouds that surrounded Allen’s life. A transplant would not only save his life, but it would give him a new one; a life free from hospitals, IV’s, and suffering.
After being put on the list Allen quickly became sicker and sicker. The more critical his condition got, the further up the transplant list he moved and the closer he got to the next available liver. His family was frantic. They knew their child could be saved but they were unable to reach that savior. Each day that passed without a transplant Allen seemed to slip farther away.
That ray of light, that savior, never reached Allen. He died before a donated organ could be found. His future was robbed from him before it even began. Allen was only three years old. He was never given a chance, a chance that could have been given to him by an organ donor.
I ask you today to give the ultimate gift, the gift of life, by becoming an organ donor. I know this may be difficult because it involves dealing with your own mortality, but the choice and the power to save a life is yours. I have seen firsthand the miracles of transplantation. My own brother, Christopher, was successfully transplanted with a donated liver more than 10 years ago. Today he is a healthy, active, normal 14-year-old. I thank God every day for the family who selflessly gave their child’s liver to my brother and gave him a whole new life.
Unfortunately, I have also seen far too many tragedies like Allen’s. Tragedies that could have been prevented. Please sign an organ donor card and carry it with your driver’s license. Tell your family about your decision to be an organ donor. Give the gift of life.
Michelle Sumner is a freshman at the College of the Canyons in Valencia, CA. This essay is adapted from a speech she gave for a speech class.
(1) Fact: Organs and tissues are recovered only after all possible efforts to save the donor’s life have failed.
(2) Fact: All major religions support organ donation.
(3) Fact: People of all ages, from newborns to senior citizens can be organ donors.
(4) Fact: Donation does not change the body’s appearance.
Transplant Dramas On The Critical List
by John F. Neylan, MD
Each day, dramas great and small play out in my office at Emory University Hospital in Atlanta as my patients cope with the great challenges of organ transplantation. This modern medical miracle has it all emotional hardships, cutting edge technology, life and death struggles. So it's no wonder stories about transplants have become mainstay of TV dramas as ER, Chicago Hope, Law & Order, New York Undercover and Profiler this season. And this week, CBS airs the TV-movie Nicholas' Gift, based on the true story of a family and their decision to donate.
But too often these shows are simply not accurate, or, worse, they are blatantly wrong. You may say that's fine, nobody takes them seriously. Unfortunately, that's not true. According to a recent Gallup poll, 46 percent of people with knowledge of organ donation and transplantation cite movies and TV shows as important sources of information on the subject. There are 58,000 people waiting for organs in this country, and if everyone accepted what they saw on TV, it is likely few viewers would want to donate their organs or those of a loved one.
Am I exaggerating? Let's see how TV's dramas measure up to reality.
Just look at TV's most popular drama, ER. In an episode that aired in October (called "Friendly Fire"), a pretty young woman was brought into the emergency room by her husband, who found her in a peaceful but unresponsive state. Naturally distraught, he was all but unhinged as the doctors made a quick assessment and advised him to think about donating her organs. Moments later, she woke up and began to speak.
Chicago Hope, which has turned to transplant plots a number of times this season, had a similar twist in an episode in which a critically injured accident victim was pronounced dead, only to show signs of life as incisions were about to be made for organ retrieval. It seems a resident cut a few corners in making the diagnosis of brain death, a blunder that prompted a scolding from the chief of staff "Hundreds of people...die because people are afraid...they'll be cut open before they're dead."
If they're afraid, it's because shows like these so flagrantly ignore the world of difference between coma and brain death. The truth? There are many causes of coma and many chances for recovery. But brain death, which is usually the result of trauma, bleeding or inadequate delivery of oxygen to the brain, is irreversible. The pronouncement of brain death can only be performed through a series of tests administered by a physician (in many states, two physicians) not associated with the transplant team, and only after these tests have been performed is an organ made available for transplant. In the entire annals of modern medicine, a patient has never awakened from brain death.
Or how about Chicago Hope's "Guns 'n' Roses" episode? Here, a wealthy man mysteriously arranged for the payment and procurement of a new heart. The transplant team was suspicious but went through with the operation anyway. Afterward, the recipient admitted his deed, and the local police closed in, no doubt ready to confiscate the evidence.
In fact, doctors can't just take organs out of one patient and stick them in another, no questions asked. The National Organ Transplant Act of 1984 tightly controls transplantation and makes the sale of human organs a federal crime. In real life, whenever an organ is donated, the federally regulated U.S. Organ Procurement and Transplant Network steps in to match the organ to a recipient, using a national prioritized list that takes into account such factors as medical urgency and time waiting, not how much money a person makes.
New York Undercover's "Spare Parts" episode showed two men harvesting body parts from teens picked up on the street. The chief of surgery at a New York City clinic then performed transplants using these organs for profit.
It's amazing how the urban myth of people being robbed of their organs persists. In truth, it has never been documented to occur in the United States. This is only one of this episode's many untruths. Organs are not left anonymously on hospital steps. All donors and recipients must be followed through the national system, and all transplants must be performed at federally approved facilities. But even if you take this ludicrous plot line seriously, you have to wonder why a sick patient would want an organ picked up on the street. Who's to say the organ would be a match? Without proper testing, who's to say it would be useable? Why would the teams of transplant surgeons and recovery people lay themselves open to this risk?
Worst of all was the Law & Order episode, "Harvest," in which a young woman struck by gunfire was brought to the hospital, barely alive. An unscrupulous surgeon saw an opportunity to procure organs for transplantation and person gain. He pronounced her dead and proceeded to take her heart. Later, as the fact came to light, both of her assailants (the shooter and the surgeon) were brought to justice. The successful prosecutors sat back to recap the story and concluded, "There's going to be some fallout from this. People are going to think twice about signing their donor cards." After watching this dreadful program, I came to the same conclusion.
What a relief it was to see Nicholas' Gift, the true story of an American family vacationing in Italy whose son is struck down by gunfire on a lonely stretch of road. In this deeply moving account (starring Jamie Lee Curtis and Alan Bates), we are shown a far more realistic picture of the struggle that accompanies such tragedies, as well as the empowerment and restitution that organ donation can provide. Interwoven is the story of the young Italian boy who receives Nicholas's heart. If only TV could treat the subject of transplantation with this much delicacy and accuracy more often, the critical shortage of organs might be reduced. Ten people die every day waiting for a transplant in this country. I only hope that after people see Nicholas' Gift, families facing the passing of a loved one will say yes to organ donation when they might have said no
Reprinted from TV Guide, April 25 - May 1, 1998
Is there a campaign against organ donation?
by Mike Holloway, PhD
C.L.A.S.S. Notes, Winter 1996-97 -- The public attitude toward organ donation is still the single most important determinant of whether someone will be given a chance at receiving a transplant. While local and national organizations do a great deal of fantastic work in speaking to people in schools and meetings, the large Partnership for Organ Donation Gallup poll 1 shows that the majority of the public gets their information about donation and transplantation from TV and movies; a statistic that should startle no one. The poll also shows that while a majority believe that organ donation is a decent idea, less than half are prepared to sign an organ donor card and discuss their wishes with family members. A stigma continues to exist about the subject of organ donation, and some members of minority groups speak openly of their deep distrust of organ procurement and allocation. 2
The number of television shows using transplantation in some aspect of a plot device has exploded in the last several years. Few TV shows or movies portray transplantation in a positive manner and even fewer bother to give an accurate portrayal of the process of procurement and surgery. If they mention the donation shortage at all, it is only to make a "black market" and murder for the sake of obtaining organs seem plausible. All kinds of drama, adventure, and soap opera shows, some of which specialize in plausible, current events story lines, are basing their plots on the worst myths and urban legends that have been spread around the world in the last two decades. Two of the most notable examples include an episode of Law and Order in which a kidney is stolen from a kidnap victim (a repeat of this episode was recently broadcast on the Arts & Entertainment Channel immediately following a documentary on transplantation), and the November 11, 1996, episode of Chicago Hope, which portrays with relish the impossible scenario of a single resident misdiagnosing brain death. The patient recovers on the operating table as procurement begins. The surgeons then consider euthanizing the patient so that they can continue to take his organs. Strange Luck, The X-Files, ER, Voyager, at least four different soap operas, Picket Fences, Forever Knight, and many others have all portrayed organ procurement and allocation as horrible, criminal, and corrupt. This is aside from the various tabloid semi-documentary programs that will snatch up rumors or urban legends of organ theft and report them as proven fact. But that is an entire topic by itself. 3
At least two major movies are currently being produced which feature murder and corruption in organ procurement. Actress Meg Ryan will be starring in "Heartless," and Director Steven Spielberg is making the movie "Spares," which is also due out soon as a novel.
Aside from the confusion these programs have introduced about the facts of transplantation, they have undoubtedly left an impression that organ donation is potentially harmful, and patients who need organs are not people most would find sympathetic. While it may be fiction, even viewers who can totally discount implausible story lines seen on the screen can’t help but come away with a negative impression after a constant barrage of these stories. More, and worse, are undoubtedly on the way.
I’m writing this article in the hopes of alerting people who might not be fully aware of this problem and to make a call for action. At least two media contact people of organizations involved in procurement and allocation have stated in the TRNSPLNT e-mail forum 4 that they cannot appear at any time to be scolding the writers, producers, or reporters who call them for help with their stories. They do not even try to inform them of the harm that negative and fallacious stories will have on the public’s appreciation for the need of organ donation. Organizations, professionals, and all concerned individuals need to make their concerns known to the media. When a television show or movie that is harmful to donation is released, or goes into production, it cannot be assumed that it is of no consequence. Many more people will have seen the recent Chicago Hope episode than will have seen even one of the costly Ad Council PSA spots.
Public awareness of various "life or death" health concerns is often crucial, but none more so than the need for organ donation. A constant barrage of negative and fallacious stories on other public health concerns would be intolerable, and quickly protested. I encourage everyone to bring up these issues in organizations they have contact with and encourage vocal protest. There will be people who do not understand the problem and will need some time to figure it out. The media themselves will insist that because it is just fiction they can portray anything they wish. This is, of course, obviously not the case. The need for responsibility in broadcast media is something that they, and the public, are constantly being reminded of in regards to many other issues. Organ donor education deserves to be at the top of the list of subjects viewed as essential and sensitive.
Dr. Holloway is co-owner and principal operator of the Internet e-mail list "TRNSPLNT."
1. The American Public's Attitudes Toward Organ Donation and Transplantation. The Partnership for Organ Donation. This document is available at TransWeb.
2. Arnason WB., Thomas Jefferson Memorial Church, Unitarian Universalist, Charlottesville, Va. Directed donation. The relevance of race. Hastings Center Report. 21(6):13-9, 1991 Nov.-Dec.
Plawecki HM., Plawecki JA., Improving organ donation rates in the black community. Journal of Holistic Nursing. 10(1):34-46, 1992 Mar.
Mozes, Hayes, Tang, Impediments to Successful Organ Procurement in the "Required Request" Era: An Urban Center Experience. Transplantation Proceedings 1991 October; 23(5):2545.
3. Articles and references dealing with organ theft urban legends are detailed in the bit.listserv.transplant FAQ.
4. Information about TRNSPLNT and an automatic subscription form can be found at http://home.columbus.rr.com/mhollowa/
Fighting For Change In New Zealand
by Andy Tookey, givelife.org.nz
Eight years after the birth of our son, Bradley, my wife, Janice, became pregnant with Katie. Though it was a surprise, it was a pleasant surprise. We were just getting used to the lie in's in the mornings, that would change all over again. The pregnancy went well, and a scan showed it was a girl. I asked the doctor three times to double check as it was mostly boys from my side of the family and I couldn't believe that I was going to be a dad to a little girl. Janice said I would never be allowed to go shopping alone with Katie, as I'd buy her anything she asked for.
Katie was born on September 12, 2001. Our wonderful news was overshadowed by the events that had taken place in New York that morning. (New Zealand is a day ahead so it was September 11th in New York.) Katie was born with jaundice, but there was no concern as Bradley had had it, and we were told it was normal. To other people, Katie would have looked quite jaundiced, but as we saw her each day we didn't notice it so much. Her stool colors were pale yellow, but isn't that normal? It had been eight years since our first child so we couldn't remember. The main thing was that Katie seemed to be a normal happy baby.
At six weeks of age, Katie went to our family doctor for her immunizations; the doctor noting that she still had jaundice recommended that she have a routine blood test to find out why it hadn't subsided. Later that day the doctor phoned me back to say that her bilirubin levels were high and he had arranged for a specialist to see her at Starship Hospital (a children's hospital in Auckland).
Little did we know that this was going to be the start of a roller coaster ride of emotions that was going to change our lives forever, and set me on a determined track to try and secure the future of Katie and others in a similar situation. I also had no idea that I was heading into a political minefield. As well as Katie's condition, there was a family to run, employment to go to and I was trying to learn how to get heard. I was, and am, determined to change and shape the future of the lives of many people in New Zealand. It is an uphill battle, but slowly I'm making progress.
All the tests seem vague now, as were the doctor's comments. We were told that there was a blockage and she would need an operation. This was traumatic enough news, as it would be to any parent to find their child needs an operation. On talking to someone else at the hospital whose child had an intestinal blockage it seemed straight forward enough to cut out the blockage.
Friday morning, and we overheard the nurse on the phone to the doctor saying we would have to come in on the following Monday for the operation. We could take Katie home for the weekend, but we couldn't leave the hospital until he spoke to us, and he wasn't available for several hours yet. We protested the fact; we knew now that Katie had blockage and would need to come in for an operation and we wanted to make the most of the weekend with her. Why did we have to now wait several hours for the doctor to tell us what we already knew? They were insistent, so we waited. Finally, two doctors came to see us and started to explain the procedure, at some point the phrase that she would need a transplant came out. I know that many of you have been through the same situation, so you will be aware of how impossible it is to explain our feelings at that time.
That weekend we had Katie home with us was the worst, as we had no knowledge of transplants or how successful they were. I slept all weekend; my way of dealing with stress was to bury my head in the sand. In the past, I had been unable to watch the TV documentaries about children with life threatening illnesses. I used to wonder how do the families cope? We were now one of those families.
Katie had the Kasai procedure a few days before the eight week optimum cut off point, it would be some time before we were to find out if it worked or not. Following the Kasai her bilirubin levels went up into the 300+ points (the range in New Zealand for a normal child should be between 1 and 20).
In the meantime, I started doing some research into the success of liver transplants and my hopes went up when I found out that a liver transplant has a 92% chance of success. My hopes were soon dashed when I learned that New Zealand was in the bottom four in the civilized world for the number of donors that it has at 10 donors per million population (pmp), compared with the United States at 26 donors pmp.
I now set out to find out why. I discovered a system that has been badly neglected and under funded for many years. There is no public education on the matter, no commercials, nothing. It's no easy task to even find a pamphlet on the subject. I also discovered that ICU doctors do not have any mandatory training on the subject, therefore some shy away from asking families. Last year we had a potential of 102 donors, 33 families were not even asked. I managed to get the local newspapers on board, and from their articles, the national press and television companies covered the story of Katie and the problems of the current organ donation system. People were sympathetic, but we didn't want sympathy we wanted action to address the problems!
Though Katie is doing fine through all this, by the time the government goes through all the red tape it could take years, at which stage she may be ready for a transplant. There are also many others dying because of the lack of donors, I know I can help them also. There have been many ups and downs during our fight with the government to change the system. The main problem being apathy. I have been chipping away at them constantly for the past year, and I have been lucky enough to get on board Lord of the Rings Director, Peter Jackson. His high profile makes it easier to get the message across. I can send stuff to the press weekly and it doesn't even get looked at. Peter can make a few comments and it's all over the papers. I can't thank Peter enough for his help; most of it is private help that is not reported in the media. This is Peter Jackson the concerned father, not Peter Jackson the film director. We've come a long way, and we've got a long way to go, but things are happening, and the governmental cogs are slowly churning. One of those aims now is to speed up those cogs before it's too late.
Religious Views On Donation And Transplantation
Provided by the American Council on Transplantation
The Amish consent to donation if they know it is for the health and welfare of the transplant recipient. They are reluctant to donate organs if the transplant outcome is known to be questionable.
Buddhists believe organ donation is a matter that should be left to an individual's conscience. There is no written resolution on the issue; however, Rev. Gyomay Masao, president and founder of the Buddhist Temple of Chicago and a practicing minister, says, 'We honor those people who donate their bodies and organs to the advancement of medical science and to saving lives."
Catholics view organ donation as an act of charity, fraternal love and self sacrifice. Transplants are ethically and morally acceptable to the Vatican.
The Church of Christ Science
Christian Scientists do not take a specific position on transplants. Christian Scientists normally rely on spiritual, rather than medical means for healing. The questions of organ donation is left to the individual church member.
Gypsies, on the whole are against organ donation. Although they have no formal resolution, their opposition is associated with their belief about the after-life. Gypsies believe that one year after a person dies, the soul retraces it steps. All of the body parts must be intact because the soul maintains a physical shape.
In 1983, the Moslem Religious Council initially rejected organ donation by followers of Islam, but it has reversed its position, provided donors consent in writing prior to their death. The organs of Moslem donors must be transplanted immediately.
According to the Watch Tower Society, the legal corporation for the religion, Jehovah's Witnesses do not encourage organ donation, but believe it is a matter best left to an individual's conscience. All organs and tissues, however, must be completely drained of blood before transplantation.
Judaism teaches that saving a life takes precedence over maintaining the sanctity of the human body. a direct transplant is preferred. According to Moses Tendler, PhD, an orthodox rabbi, "If one is in a position to donate an organ to save another's life, it's obligatory to do so, even if the donor never knows who the beneficiary will be."
The Church of Jesus Christ of Latter-day Saints considers the decision to donate organs a personal one. Jerry Cahill, director of Public Affairs for the Mormon Church, says, "Mormons must individually weigh the advantages and disadvantages of transplantation and choose the one that will bring them peace and comfort. The Church does not interpose any objection to an individual decision in favor of organ and tissue donation."
Protestants encourage and endorse organ donation. The Protestant faith respects an individual's conscience and a person's right to make decisions regarding his or her own body. Rev. James W. Rassbach of the Board of Communication Services, Missouri-Synod, says, "We accept and believe that our Lord Jesus Christ came to give life and to give it in abundance. Organ donations enable more abundant life, alleviate pain and suffering, and are an expression of love in times of tragedy."
Call to Action
Whenever you see organ donation or transplantation portrayed wrongly on television, whether it be on a news report, daytime talk show, prime-time drama, or late night TV, take a moment to write to the network airing the program. Even a short note or postcard to register your concerns will help.
It's important to continually remind the media of their role and responsibility in shaping the public’s perception of organ donation. Polls show that most Americans get their information about organ donation and transplantation from television and movies.
More than 80,000 Americans are in need of an organ transplant. Nearly 1,000 children are waiting for a liver transplant. On average,16 people die each day while waiting for an organ transplant. Consistently accurate information is key to gaining public support for the organ donation cause.
- Audience Services Dept.
- 51 West 52nd Street
- New York, NY 10019
- ABC, Inc.
- Audience Information Dept.
- 77 West 66th Street
- New York, NY 10023
- Phone1: (212) 456- 7477
- 30 Rockefeller Plaza
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- FOX Broadcasting Co.
- P.O. Box 900
- Beverly Hills, CA 90213