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, October 03, 2005

Grey's Anatomy: Once More, with the Same Feeling

Scrivener sent me an email asking about my reactions to the latest episode of Grey's Anatomy, which again dealt with the topic of organ donation. A few months back, I addressed the topic of organ donation in that show and another, thankfully short-lived one. Phantom Scribbler began a link campaign for my letter, in order to boost the letter's placement when googling for information on organ donation. I'm not sure that I ever properly thanked her for her hugely successful efforts, so here's a big Thank You to her. Now, last night's episode (I'll add a link when I find a recap) was certainly no advertisement for organ donation, but at least it did not leave me steaming over inaccuracies in its portrayal of the process. The fact of the matter is that organ donation is an area with a number of ethical gray areas, especially when it comes to the matter of living organ donation. Here's an informative article that raises some of the main objections to living donation. But even when you are dealing with deceased donation, ethical issues arise. So, for instance, you get the debate over whether prisoners convicted of violent crimes should be allowed on the transplant list, or whether death row inmates should be allowed to donate organs. AIDS patients were frequently not transplanted, following the reasoning that the 1-2 punch of HIV and simultaneous Hepatitis-C (the usual culprit leading to liver failure for those patients) meant that a transplanted liver did not stand much of a chance, until the recent move allowing HIV-positive organ donors to donate to other HIV-positive patients. In the area of liver transplantation, the United Network for Organ Sharing has implemented a new system that seeks to divorce social valuation from the question of who receives an organ, assigning instead based on greatest medical need, but even in this system disturbing inequities across geographical boundaries were noted. There are even ethical issues surrounding the definition of death for potential organ donors, and the possibility of insisting that organs are only given to those that have agreed to be donors themselves. These ethical questions are certainly not abstractions for us. As we draw ever nearer to Annika's Rex shunt surgery, we are well aware that, if the surgery fails as the doctors have warned us that it well may, another transplant will be her only hope. But Annika has already had two transplants. What about all the other patients waiting who have not even yet gotten their chance at one? And even pushing ethical issues aside, the process of organ donation is fraught with emotional confusion. Every year, we celebrate the anniversary of Annika's first transplant, which falls on the same day that another family marks the loss of their child. There is no way to untangle the two events, and my only comfort is the hope that our donor family's pain is accompanied by some comfort in knowing that their child was able to save another child's life. But I have no idea if the heart really works that way. But on to the Grey's Anatomy episode. I think this episode did a much better job at portraying the process of organ donation. One of the major problems I had with the last episode was in the way that the doctors responsible for the care of the donor were also involved in the organ procurement (and also for the care of the recipient). In addition, the show made it seem like the distribution of organs was somehow a matter of luck and connections. Both of these problems were actually directly addressed in this episode. At one point the doctor for the recipient (in this case of a living donation) was addressing the potential (living) donor, and she was resoundingly redressed for even venturing in to express an opinion. Conflict of interest is resolutely not allowed in the area of donation, and most especially for living donation. Good for them. Next, it happens that there is a potential brain-dead donor being flown in to the hospital for organ procurement (again with the word, "harvest", though. Ick. A person is not a field of corn.) In the old school medical drama world of happy coincidences, that donor would have been earmarked for the patient in need right there in that hospital. In this episode, it was made clear that the doctors in the hospital have nothing to do with the allocation of organs. That role falls to an independent organization, UNOS. Again, good for them. That being said, this episode was not exactly upbeat about organ donation. First, the patient in need was an alcoholic wife-beater who killed another driver in a fit of road rage. It was made clear that he was no longer drinking in order to qualify for the list (but given his evident inability to control his domestic violence, you had to wonder about his ability to conquer an insidious disease like alcoholism), but to say he was an unsympathetic character is certainly understatement. I don't know about you, but I certainly hope that, if I die in such a way that my organs can be used, they would go to people like my daughter and all the other recipients I have met with their generous outlook on life. Still, the organization that allocates organs strives to make medical judgments, not moral ones (insofar as the two can be separated). A patient that continues drinking will destroy a transplanted liver even more quickly than his/her native one, and thus is not a good candidate for transplant. This, perhaps, is a moral issue (whether or not the recipient will be a good steward of the new liver), but the reasoning behind that decision can be explained in medically objective terms. The question of whether or not a life is worth saving lands squarely in the territory of moral ambiguity, and squarely in an area that UNOS (and the medical community in general) disregards, and rightly so. Their business is saving life in all its beauty and all its ugliness. The idea of giving organs, a scarce resource, to those that have caused harm to their loved ones and society in general is a distasteful one. But I would never agree that such considerations should become part of the allocation process. To deny a person the possibility of change and restitution seems to allow a sort of righteous certitude that I find cynical at best, and dangerous at worst. The second squirm-inducing issue was the plot line that involved the ostensibly brain-dead patient that was flown in for "harvesting" (again, ick). Thanks to the actions of one of the show's residents, the patient was discovered still to have some functioning in her brain. The surgeons who were there to collect and deliver the organs to the waiting recipients greeted this news with disdain and a horrifying disregard for the rights of the donor. As they pushed to go ahead into the operating room where, they claimed unconvincingly, "Of course we'll wait until she's dead..." the heroic neurosurgeon pushed for an MRI to investigate further. As a result, the doctors discover that her tumor is operable and she will have a good chance of recovery. This sequence again raises the specter most disturbing to those that oppose organ donation: the possibility of being rushed to death in order to obtain their precious organs when they, in fact, could have been saved. It is this possibility that flashes before people's eyes when I ask them about being organ donors and they shudder and say, "No, thanks." The irony here is that the patient's life was probably saved precisely because she was an organ donor. She was flown to the larger hospital for the procurement of her organs (I can't write "harvest" again, even in quotes), where she was double-checked for signs of brain activity, which is standard procedure, and when activity was detected, she was in a place with a surgeon capable of successfully operating on her tumor. Had she stayed at the smaller hospital and not been double-checked (as all organ donors are), she might have been removed from the ventilator and, thus, died. I confess I do not know the procedures used for removing ventilator support when a patient is declared brain dead, but is not an organ donor. I do know, though, that a declaration of brain death is checked and carefully double-checked before a patient is considered for organ donation. In this case, the problem was discovered in the double-checking part of the process. I'm not sure, though, that this connection would be foremost in the minds of viewers, who most likely latched on to the horrific idea of having their organs removed before their time was up. As an organ donor advocate, I hate the idea that any surgeon in charge of procurement would be so callous in disregarding the possibility that the donor's life might be saved. But I suppose that it would be naive to think that there are no such doctors out there. Surely there are bad doctors in all areas of medicine. A few months ago I never would have imagined that an attending (not just a freshly minted resident) doctor* would hang up on a distraught family member asking reasonable questions. They don't hand out angel wings along with a medical degree, I suppose. So in the end I think that this fear is actually caught up in a larger issue, fear of bad doctoring. And just as it is too bad that some people's distrust of doctors will lead to an unnecessarily early death, it is also too bad that people will die because others choose not to be organ donors out of a similar fear. I can at least rest assured that organ donors are checked and double-checked before being accepted as donors. And I still hope that fear and mistrust are not the primary motivations that lead people to say "No" to organ donation. I do have to give credit to the writers for giving voice to exactly this sentiment on behalf of transplant recipients. When Bad Doctor expresses impatience that there are 6 patients waiting for these organs, Hero Doctor responds that he is aware of this and also that they will be happy to know that the organs came from someone who was actually dead. All in all, it was hard to come away from this episode feeling all warm and fuzzy about organ donation. In fact, it felt downright uncomfortable. But the fact of the matter is that organ donation is not all about warm and fuzzy. Someone, beloved by others, has died. And no matter how beautiful the gift, there is still a profound sadness that should never be ignored. And we should always stand guard for the rights and dignity of potential donors. At least the show did not distort or confuse the process in the interest of storyline this time. I'll hope that a future story might allow for some of the genuine joy that results from organ donation, even if it is alloyed with a sorrow that it is hard to contemplate. ~~~~~~~~~~~~~~~~~~~~~~ * I know that there are Chicago liver families out there who read this journal and have been wondering which of the attendings actually hung up on me. I'm happy to report that it is not one of Annika's regular doctors, and feel no compunction about naming names: It was Dr. Saps. Please feel free to tell him that hanging up on a patient's family is unacceptable behavior in your book, if he happens to be on service when your child is admitted. I do think it's a good thing for doctors to know that families network and that their bad behavior is noticed. We also filed (well, Jörg did) an official complaint with patient relations, although they do not let you know what action, if any, was taken in response.


Blogger Sarah said...

I do not watch this show, but have seen shows such as ER that have had organ donation portrayed in a way that made me "uncomfortable." One was about living donation. In this episode a woman needed a liver due to hepatitis C. The doctors called in her little sister who was a senior in high school. They tested her (which only took 5 minutes in the ER) and she turned out to be a "perfect match" Very unrealistic, but the thing that made me cringe was that she did not want to do it, and the doctors pushed and pushed and tried to make her feel bad about her decision. I don't know about other hospitals, but at Northwestern in Chicago, they make sure that you want to do it before your tested. I was never pushed into doing anything, I was the one to push the doctors into getting tested. There were other ones, but that one sticks in my mind the most.

About the doctor that hung up on you, I don't know this doctor, but I am glad to hear that you guys filed a complaint. No one should ever be hung up on like that by a doctor. While I was inpatient at Northwestern after my living liver donor operation (I believe it was the second day) I felt I was being pushed out of the hospital too early. The doctors came in and I was in horrible pain. They told me that I could go home, and I told them I didn't think I was ready. One of the responses to that made by a doctor on their team was, "don't you care at all to see your daughter?" I was horrified. He actually made me second guess myself, that I didn't care about Anna? I called Jason and started to bawl. This made him very angry, and about 30 minutes later the social worker came in apologizing and told me that I could stay for as long as I needed to. Later I learned that Jason called to complain. He told them "she shouldn't be made to feel that way, of course she cares about her daughter, she just gave her part of her liver!"

10/04/2005 10:52 AM  
Blogger Yankee T said...

Moreena, thanks for posting this and for keeping us informed. I am happy to tell you (I don't think I already told you, did I?) that Older Daughter signed up to be an organ donor when she got her drivers license, due in large part to my telling her what I have learned from you.
Please know that your family is in my thoughts daily.

10/04/2005 12:26 PM  
Blogger Phantom Scribbler said...

I am completely in love with weird robot guy and his amazing chest hair. Thanks to both you and Annika!

10/04/2005 1:26 PM  
Anonymous Rowan said...

That is the first episode of Grey's Anatomy that I have ever watched. And I must admit that I thought of you guys as I was watching it. It's weird how many things seem to revolve around donation these days. It's like when you're pregnant and everyone else seems to be, too.

I had a hard time with this show. I kept thinking. "Yah, the dad's a really bad person, but where would you draw the line?" It all just seemed so contrived.

There's so much about transplantation that I just don't know enough about yet. We're learning as we go, and we just haven't crossed that bridge. (But we're one step closer. Today was the dental appointment. No decay/infection!!)

I'm learning so much from you. Even on an emotional level. Thank you. I must, also, express my gratitude for all the links. I've visited the UNOS site, but am eager to peruse some of these others.

10/05/2005 1:20 AM  

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