8/24/2009

I Went Before a Real Death Panel

I am a liver transplant survivor. I'm very lucky. I am also one of the people in this country who has been before a real life "Death Panel."

In mid January of 2007 after two months of testing that included both physical and mental screenings, I went before the Transplant Committee at the Medical University of South Carolina. Well, not me personally. It was actually just the collection of lab results, notes, and personal views of a half dozen or so people involved in the process. I was assured by the Transplant Coordinator who is a nurse and serves as the patient advocate that she would present my case in the best way possible.

Yes, this is a real life "Death Committee" or as it is sometimes called "The God Committee." Before I could even make it to that point I had to show that I was a good and decent person, I had family support (charmingly titled a "support network"), I did not use illegal substances (even medical marijuana prescribed legally by an M.D. will get you killed by a God Committee), and that I had the financial resources including insurance and a set amount of money in the bank to make it through the months after transplant.

Honestly, I was terrified because I'd heard rumors of God Committees turning down LGBT people because we are not "socially valuable" in that we don't have children or can't have children. I was assured this was a mistaken belief when I broached the subject outright early on.

Still, what did these people think of me? I had to sit for a couple hours and talk to a therapist about my life and my mental status. I worried that even hinting I'd ever been depressed after my father's death would kick me out of the running to live. After all, why speak to a therapist about your past mental health history unless it meant that something in that history could make you ineligible? Since no one gives you a list of things that makes you ineligible it's hard to know what is considered "normal" by the God Committee.

In my first appearance before the God Committee I was "deferred." That's not a death sentence but it's close. It means that there was something some member of the committee didn't like. My nurse called me and told me the news. However, the good news was that it was simply a lab test they were concerned about. Something looked a little strange on one of the cardiac tests and they needed a better idea whether or not I could even survive the surgery.

I was scheduled for another test involving a cardiac catheterization the next day and then my case would go back into the committee at its next meeting in two weeks. As it turned out at the next meeting I was listed for transplant and placed at the top of the waiting list in my state because I was critically ill. Still, in the intervening two weeks one of my doctors had to start me on anti-anxiety medication because I was prone to panic attacks and uncontrollable weeping as I saw my life slipping away 40.

A few days later I had a new liver thanks to the generosity of a young man and his family and have since done quite well.

However, transplant committees truly are "Death Panels" they are tasked with deciding whether someone is given a chance to live by receiving a transplant or whether they die - often painful and horrible deaths. Their deliberations are quite secretive and there are precious few safeguards enacted in law.

It is necessary to have some screening process because the number of available organs is tiny compared to the need. Too many people just refuse to do the right thing and sign up as donors. After all, of all the people who do consent to be donors only a small percentage actually are able to become donors at the time of their death. It's, unfortunately, a numbers game.

I was very lucky to be at a hospital where the people looked at the medicine rather than making their decisions based upon religious beliefs or social values. Each of their decisions centered around whether I was medically fit for transplant and could survive an 8 hour surgery, whether I could handle the life changes following transplant including the mental swings between euphoria at being alive and the guilt at being alive because someone else died, and the ability to understand what was necessary to remain healthy and juggle medications and frequent visits for checkups. They saw that I was a good candidate medically and that I had educated myself on the process and was capable of being a partner in my own care. My doctors and nurses were all wonderful people who were able to transcend the ordinary to make tough decisions.

Not everyone is as fortunate. Several years ago the University of Arizona's program at UMC came under scrutiny for what seemed to be random actions by members of their God Committee when it came to patients. Simply disagreeing with a physician about a course of treatment or asking about alternatives were enough to have a patient denied a listing for being "non-compliant." Supposedly, this has all been changed and for several years the program at UMC shut down due to a "lack of surgeons." They are now back in full force as of 2008.

Yet, unlike the "God Committees" that functioned in the early years of Kidney Dialysis and which Congress destroyed with the Medicare Act, there doesn't seem to be any sign that the organ transplant God Committees will be going away in the near future.

The reason for that is simple. While finance plays a role in access to transplant: in my case waiting longer while I was finally classified as "disabled" and given Medicaid or in Steve Jobs case, jetting to a place where the list was short to get listed; the real limiting factor is the number of organs available. Unless people in the United States embrace transplant as a moral duty we will continue to have long lists and God Committees will continue to make life and death decisions. Sometimes they decisions will be good and based on medical criteria and sometimes those decision will be bad and based on personal whim or politics.

But, the fact is, when given a chance our Congress destroyed "Death Panels" in the past and I have no doubt that should we reach the place where there is no longer a shortage of transplantable organs and a need by hospitals to ration them, they would do so in the future. But right now, Death Panels meet almost every day across our country and no one on the Right Wing notices or cares because they see them as a necessary part of organ rationing. So don't be fooled by their moralistic bluster. They approve of the Death Panels that do exist both in hospitals and at review centers for insurance companies - they just don't approve of the fictional ones they created as a boogie man in the process to insure more people in this country!

This is not an indictment of the people who serve on Patient Selection Committees. As I found, many of them are very caring and they have a job I simply could not handle. After my transplant, my coordinator and I discussed returning to school to complete my BSN then possibly my MSN and become a Nurse Practitioner to work with transplant patients. However, the more I thought about having to sit on this panel and in judgment of people's lives and whether they lived or died, I knew I could never do it. I could never tell someone that their life was not worth doing everything possible to save if there was so much as a glimmer of hope for them and they wanted to fight. The trauma nurse in me simply couldn't stand by and let death win without a fight.

So, I have a great deal of respect and compassion for people who makes these decisions. Those who act with justice and wisdom do outnumber those who act with pride and conceit.

Would you like to help make the God Committees a thing of the past? It's easy. Sign up to be an organ donor. Then talk to your family and friends about your decision. Don't worry about your current state of health! The determination whether you can successfully donate is made at the appropriate time. Criteria are constantly expanding as techniques improve. Thousands are being saved today using organs that just a few years ago would have been untransplantable!


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