I was working on a post about why I let my girls wallow in Disney Princess paraphernalia, but have instead been sidetracked by the abysmal presentation of organ donation on Grey's Anatomy last night. I felt so strongly about it that I decided to compose a letter to send to ABC and any letter to the editor section that I think might possibly print it. Here's what I've written:
I am a medical show junkie. So of course I watched the April 10th episode of Grey's Anatomy on ABC, which dealt with the issue of organ donation and transplantation. I admit I am not unbiased on this issue (my 4-year-old daughter is a liver transplant recipient), and I also realize that the job of a television show is to entertain, not inform. I even suspect that the writers of the show felt that they were presenting a fair look at the joys and sadness of the transplant process. And, yes, I do know that there is sadness. We never forget that there was unfathomable grief in that hospital in Chicago, when our donor family said, "Yes, he would want to help others." We never forget that a life was ended too soon, and it makes that one last gift from our daughter's donor all the more precious. So we know there are two sides to the transplant story. Still, the show was so filled with inaccuracies in its portrayal of the donation process, many of which serve to fuel the myths that prevent some people from agreeing to be donors, that I switched off my TV saddened at the thought of all the millions of viewers who went to bed disturbed by the idea of organ donation as it was presented in that episode. I doubt any leapt from their armchairs to go sign the back of their drivers' licenses. I suspect many may have told their families, "I don't want that."
My letter will never reach as many people as that one hour of major network TV did, but I still feel the urge to try to undo some of the damage and set the record straight. Here are the issues that this episode misrepresented:
1) "Brain death" is death. It is not a condition that a patient might, at some point, recover from. It is not the same thing as being in a coma. A patient is declared brain dead only when tests have been conducted that establish that the injury to the brain is incompatible with life, and that cardiac arrest is inevitable. If the person is to be an organ donor, these tests are corroborated for their accuracy. In this episode, the patient was declared brain dead after only the briefest of examinations by the doctor, which in itself is misleading, but even further was being given 6 hours before being "declared." This leads to the confusing situation of patient being referred to as "brain dead," while simultaneously implying that there is some chance his condition might have reversed itself.
The confusion created by this misuse of terms leads to one of the most vivid fears that people have about being organ donors - the fear that their organs might be removed while they still have a chance at recovery. The fact of the matter is that doctors do not refer a patient as an organ donor unless the brain has been so horrendously injured that there is absolutely, beyond a shadow of a doubt, no chance that they will be able to recover. The first job of doctors really is to protect life, not to procure organs, which leads to the second inaccuracy in this episode...
2) The doctors who treat the organ donor patient are always completely separate from the doctors who are responsible for procuring the organs. In this episode, the interns treating the patient appeared to be eager to turn their brain dead patient into an organ donor in order to have a chance to get in on a "harvest surgery." Leaving aside the matter that "harvest" has long been recognized in the transplant community as an insensitive way to refer to the process, there is the fact that this situation would never, ever arise. The insistence on completely separate medical teams for the patient who may be an organ donor and the teams representing the transplant recipient helps to avoid any conflicts of interest that might compromise the care of a potential organ donor. Hospitals performing transplants are subject to strict review, and any hospital that did not provide separate medical teams would soon find itself out of the transplant business. No person need fear that they would be rushed into being an organ donor simply because some overeager interns couldn't wait to get into the OR to remove his/her organs.
3) The staff who talk to the family about organ donation are highly trained and compassionate people. This episode sent in an inexperienced intern who confesses she's "not a people person" to go over the donation process with the wife and young daughter. As a result, the donation process was presented as a sort of emotional torture to the family. Truly, talking about organ donation in the first hours after you have learned that you have lost a loved one must be incredibly difficult, but the intern's behavior was unbelievably callous and showed no respect for the emotional support that is offered to families making this compassionate choice despite their grief. The wife, in tears, expresses horror over the idea of donating her husband's corneas and skin. "How is my daughter supposed to look at her father at the funeral?" is her heartbroken question. This question is left in the air, as the intern is unable to deal with the woman's grief any longer.
Thus is left unanswered another of the reasons people sometimes hesitate over organ donation: the wish to have an open-casket funeral. Great care is taken to ensure that an open-casket funeral will be possible for the family. An organ donor looks no different in the casket than a non-organ-donor. The organ donor is also treated with much more respect than this episode would lead you to believe. In this episode, after all the organs have been removed, the doctors simply clear out, leaving the poor donor open on the table. It is left to a kindhearted intern to come in and close him up, apparently her own novel idea. In the real world, donors are always very carefully closed and returned to the family in order to have a proper funeral, and are treated with both dignity and respect.
Also in the real world, all the wife's questions about donation would have been answered clearly and sensitively by a person specifically trained to deal with grieving families contemplating organ donation. Although it is a heartbreaking time for families, no hospital is going to make it harder on a family by sending in someone so blatantly unsuited to the task to talk to the family, and no hospital would treat a donor with such disregard.
4) In this episode, the recipient of the donor's liver was right in the same hospital, and it appeared that he received the liver mainly through good word-of-mouth (one intern hears of the potential donor through his friends and says, "Hey! I know who could use that liver!") This makes it appear that receiving an organ is done mainly through having the right connections, and, indeed, the recipient just happens to be good buddies with the chief of surgery in the hospital. In fact, the allocation of organs is done through an external agency (UNOS or United Network for Organ Sharing). There are strict rules to be followed in determining where donated organs are to go, including such factors as severity of illness, location, and time on waiting list. It is not an arrangement made between doctors in-house, and one does not go to the top of the list, even if his or her best friend happens to be the Surgeon General.
Sprinkled throughout the episode were doctors making callous and misguided remarks, which I won't bother quoting here. There were also a few remarks that seemed to be attempts to balance the view (when one intern calls the waiting recipient teams "vultures," the other intern notes that each one of them represent a life that is going to be saved), but overall the factual inaccuracies were so many and so important that the episode could only be viewed as an impediment to the goal of April as "National Donate Life month."
I have lost family members. I have known families that have suffered great loss, even families who have lost children to the same liver disease my daughter had. One of the most moving tributes that can be made to those loved ones is to plant some living thing in their memory - a tree, a rosebush, or even an entire garden. I think we are drawn to the beauty of watching life go on after death, of knowing that here is a living thing to remind all who pass by of the love we shared. When I send out my letters to our donor parents, along with photos showing how she is growing thanks to their child's gift, I think to myself that what I am sending them is proof of a memorial more fantastic than any million-dollar garden. My child is a living, breathing, laughing, running, hugging, joking, singing, loving reminder everyday of the love one human can show another human, even after death.
I realize that many of the inaccuracies portrayed in this episode were perhaps simply the result of needing to dramatize the situation and fit it into an hour-long segment, but I do believe that these donation and transplant stories are dramatic and moving as they are, without the need to distort the process. I can only hope that ABC did not inadvertently lead potential donors to view organ donation negatively. It would be a disservice not only to the nearly 89,000 people in this country waiting for transplants, but also to potential donors and their families, who might miss the possibility of making life out of tragedy.