One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Monday, April 11, 2005

letter to the editor

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.


Blogger Phantom Scribbler said...

We may not be able to reach everyone who saw that show, but we can help you get an audience for that letter. Let's work on ways to get you high up in the Google search for anyone looking for information on this show. If we all link to this post, that will boost your rank in the search, right? Anyone know some other ways?

4/11/2005 8:32 PM  
Blogger Moreena said...

Wow, that's really kind. Although I confess I have no idea how it would be done.

I forgot to mention that I am also looking for any feedback before I send it off. Are there any points that are confusing? Is there some place where I could make my point more effectively? Does it lose momentum anywhere?

4/11/2005 10:17 PM  
Blogger Amanda M said...

Way to go Moreena! Can you cc: your local newspaper as well? or any local news blog? Let's get that word out!

4/11/2005 10:18 PM  
Blogger jo(e) said...

Thanks for educating me. I didn't know any of this because I'd really never thought about it before.

4/11/2005 10:21 PM  
Blogger none said...

This is such a powerful letter. I wish everybody would read it!

4/12/2005 4:46 AM  
Anonymous Andrea said...

This is lovely. I will definitely link to it. Good idea, PS.

4/12/2005 6:41 AM  
Blogger Pilgrim/Heretic said...

This is a beautiful letter, Moreena. I think you made your point gracefully, effectively, and with great sensitivity. Phantom's idea is a good one - more people need to read this!

4/12/2005 7:57 AM  
Anonymous Anonymous said...

I have to say I disagree with what you think the episode showed. My boyfriend and I both thought the show portrayed the fact that someone died and it had greater meaning. I don't think the show made it seem like the patient could live. All of the doctors and all but one of the interns were perfectly clear on the issue. The only intern that did not understand was simply hoping for a miracle. She knew there was no logical way the brain dead patient could live. The point I do appreciate in your letter is the fact that you say that organ donors are sewn up after the proceedure, this is comforting to know being an organ donor myself, but I am an organ donor and watching this episode of Grey's Anatomy did not change my views or will to be an organ donor.

4/12/2005 9:46 AM  
Blogger Yankee T said...

Moreena, this is a beautiful letter. I would send it to as many papers as possible. Having had an organ-donor sticker on my drivers license for over 20 years now, I was surprised at how much I did not know. My 16 year old has "organ donor" stamped on her brand new license, too. You GO!

4/12/2005 11:45 AM  
Blogger Jay said...

I think it's an important letter for people to read and understand. Of course TV is rarely a mirror for true life and this is not even the tip of the iceberg as far as inaccuracies are concerned.
When someone important in my life passed on in a sudden accident, it was left to me to deal with his body and the hospital staff. I was not sent a qualified and compassionate professional, unfortunately. Real life is never as perfect as we'd like. The woman was cranky to me, pressured me, and made it difficult for me to even make some necessary calls (we were in Florida; my home country is Canada).
It's never an easy decision, no matter how much you've discussed it beforehand. It would be nice if television could be an honest forum for discussion, but it's not, and it's left up to people like you to dispel the myths.

4/12/2005 12:40 PM  
Blogger Moreena said...

I do agree with you that I am perhaps being too hard on the show. I really do think that they were not trying to be anti-organ-donation, especially as one of the stars (plays Izzie) is active in the organ donation community (her brother died and donated his organs). And I doubt it would have changed the mind of anyone already an organ donor. My fear is that, for those who already had reservations about being a donor, this episode may have heightened those fears. Yes, I agree that they did not really make it seem like maybe the patient had some chance at recovery, but for those who are already fearful of organ donation when they might have a chance at recovery, the simultaneously referring to the patient as "brain dead" while "giving him 6 more hours" is very confusing. 6 hours doesn't sound like very much time to allow someone to make a recovery, you know. But of course, they weren't waiting for him to make a recovery. But then what were the 6 hours for? It's all very confusing, and for someone who's a bit fearful of organ donation, confusing is only another way to make it seem like a bad idea.

I'm so glad to hear, though, that for someone who has already made up his/her mind that the episode did not change your mind, and that you grabbed out the positive themes of the episode instead. That really makes my day. Thank you!

4/12/2005 1:11 PM  
Blogger Moreena said...

I'm so sorry to hear that you had such a bad experience during your friend's death. I am really hoping that the person who was so insensitive to you was not a representative talking to you about organ donation. If so, I hope that you did report them, as the hiring of people who are concerned with the emotional well-being of the family and friends is critical. I have met people in the organ donation community who aren't always careful (once a very high-up leader was riffing during a public speaking engagement and made a comment that was blatantly offensive to anyone in a wheelchair, of which there were several in the room. Oy!), but I am hoping that in the situation of losing a friend/family member they are well-trained enough to know how to offer comfort without being pushy, or making the situation worse.

Anyway, again, I'm sorry and am hoping it was noone associated with organ donation at that hospital.

4/12/2005 1:18 PM  
Blogger PPB said...

great post.

4/12/2005 4:05 PM  
Blogger Dan said...

You speak so eloquently on this topic, you should be a national spokesperson for organ donation!

I am in the middle of trying (unsuccessfully, so far) to write a post about a member of our family who died yesterday. He received a heart transplant over 20 years ago, without which he would have been long gone by now. He never forgot the family of the poor young man whose heart he received--he was grateful to the end.

4/12/2005 6:53 PM  
Blogger Moreena said...

I'm sorry to hear of your loss. 20 years is a lot of life to be given. I bet after receiving such an amazing gift that those 20 years were spectacular.

4/12/2005 10:52 PM  
Anonymous Anonymous said...

Thank you for this eloquent post. As a person considering organ donation, I was actually reminded by last night's episode to obtain my donor card. I agree that GA's portrayal created the confusion that you mention, but for me, the episode persuaded rather than discouraged me to donate my organs. Before reading your post, I reasoned that competent professionals would handle the process with the dignity you describe and that the inaccuracies were inserted to heighten the melodrama of the show. I hope that other viewers came to the same conclusion, but if they didn't, I hope they encounter this insightful letter. Best wishes for publication.

4/12/2005 11:48 PM  
Anonymous Chris in NY said...

I agree that the "6 hour" time period was portrayed in a poor way, as if the patient was expected to recover. To clarify the 6 hr time period, many states like NY require a time interval, recommended to be a "6 hr" period in which to observe the patient for clinical manifestations that are inconsistent with brain death. This is not however meant to be a time period of waiting for a miraculous recovery.
Additional inconsistencies related to the actual procurement of the organs were noted. Most glaring and I think disturbing was the removal of organs from the patient
followed by the showing of a cardiac monitor reflecting a flatline as if the patient had just died. (1) The patient who is declared brain dead is legally dead. They only show a blood pressure, heart rate and respirations on a monitor because machines are keeping their body functioning. (2) In a real organ procurement involving a brain dead patient, the surgery begins with the organs being isolated from surrounding tissue. The ventilator support as well as any drug support for blood pressure is then discontinued followed by the actual removal of the organs.

4/13/2005 11:53 AM  
Anonymous Steve said...

I too had difficulty with GA last episode regarding donation. After viewing it I to sent an email to ABC stating what wrong they were with their depiction of organ donation and transplantation. I am glad to hear I'm not the only one who knows how WRONG ABC is!

Steve RN, Clinical Donation Specialist

4/13/2005 11:54 AM  
Blogger Steve said...

I too had difficulty with GA last episode regarding donation. After viewing it I to sent an email to ABC stating what wrong they were with their depiction of organ donation and transplantation. I am glad to hear I'm not the only one who knows how WRONG ABC is!

Steve RN, Clinical Donation Specialist

4/13/2005 11:54 AM  
Anonymous Darlene said...

I am a Donor Mom, a living Donor and a recently a Donor daughter. I an RN and work for the organ procurement organization as a family support couselor. I go into hospitals to support families that are going through similiar tradegies of losing loved ones as I did. I was appalled and shocked by the way organ donation was portrayed too.When organ donation was first mentioned in the show I thought to myself "Wow it's April, Organ Donor Awareness Month" and they are going to do an episode to increase awareness, never thinking that it would end up showing exactly the opposite of what organ donation is REALLY about. I know that the organ donation community in outraged by the terrrible way it made organ donation appear, especially when we work so hard to educate and rid people of all the myths they had in this program.For me organ donation was the only positive thing that came out of the worst day of my life. I truly feel the show needs to make an apology and set the country straight about the damage they did by this episode. Your letter was beautiful and said what I think anyone who has been touched by organ donation feels. Great Job!

4/13/2005 12:46 PM  
Blogger Moreena said...

Chris in NY,
Thank you for clarifying the 6-hour wait in the episode. I had a sneaking suspicion that this had some basis in reality, and so I did send this letter off to my transplant center to get a quick fact check on my understanding of brain death. Your explanation makes sense, but you are right that it was nonetheless an extremely confusing aspect of the episode.

I also noted the flatlining when the heart was removed, but I don't know enough about the actual procedure to have commented. Thanks. I also noted, though, the surgeon who said that he hated performing these surgeries because he is "supposed to protect life, and this ends one." Well, no, the car crash did that, but I was beginning to feel like I was being a bit too harpy-sounding on a topic that is so sensitive to so many people.

It really is a fine line to walk here, but so much rides on the public opinion of this issue, and it saddens me that some people might make up their minds based on misleading information.

4/13/2005 1:11 PM  
Blogger Moreena said...

Darlene--wow, what a story. Thank you.

Steve, anonymous, and others--thanks for the encouragement.

Phantom--your idea of linking has been wondrous and I am so appreciative. Nearly 467 unique visitors have read this letter since I posted it.

Television Without Pity people--thanks for stopping by to read this, despite its utter lack of snarkiness. I really do mean every word..and actually even more.

4/13/2005 1:15 PM  
Blogger Jenn said...

I'm one of those people who feels that TV should be called on its representations as I think they can have very real influence on how we think about ourselves and our lives and each other.

With that said, I'll be linking this in my blog as well. Thanks to Mystery Mommy for the head's up.

5/09/2005 12:53 PM  
Blogger Leone said...

I think your blog entry is incredibly moving and you were so right to bring awareness to this. TV must be held accountable for what they are willing to put on the air and you did just that. Brava! I will link to your blog as well if you don't mind.

5/09/2005 7:00 PM  
Blogger julia said...

i'm leone and jenn's sister... and i'll link up the page too. thank you for taking all of the time to write about this.

5/13/2005 10:53 PM  
Anonymous Anonymous said...

Thank you for writing this. I have worked for the last four years within transplantation and was horrified by this last Thursday's episode of transplantation which bore the same inaccuracies you describe. As you said, it is a show to entertain, but when so many men, women, and children die on the waitlist, I believe the writer's of grey's anatomy are being socially irresponsible.

12/06/2008 9:56 PM  

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