From Con to Pro: the Evolution of One Donor's Viewpoint Regarding Monetary Compensation for Families That Donate Organs
First stance, before reading actual proposal: "If someone had come up to me and told me they were giving me $5000 for my son's organs, I would probably have knocked them flat. To me it would be the same as selling my son's body parts." Second stance, after initial reading of proposal: "You made a good point about death benefits. But people buy life insurance before they die. I am suggesting that you focus on giving living people incentives instead. I believe you may find you lose families because of this issue if it is addressed in the hospital." Third stance, after long reflection: "Although I still feel uncomfortable with the incentives, I have pretty much decided that it is worth a try in order to save more lives. I have taken myself out of my shoes and looked at the recipient's family and what they are going through. If it were my child needing a transplant, I would want everything possible done to save him. ... I am now somewhat reluctantly "on board" with you. I hope that your group gets a chance to have a pilot program to see if it increases organ donations. After all, you are simply trying to save lives, and who can argue with that?"
The above excerpts were taken from the following series of letters from Jodi (last name withheld by request) of Jefferson City, Missouri, who wrote to us shortly after reading some press coverage of our proposal.
Monday, June 2, 2003 Dr. Kyriazi:
As a donor mom, I would like to give you my personal experience regarding organ donations. I lost my son five months ago unexpectedly. He was a organ donor and we honored his wishes. Please know that at the time of my loved one's death I was devastated, in shock, vulnerable, and felt like my life had ended. The only thing that held me up was staying with my son fifteen hours until they came and got him for the transplant. If someone had come up to me and told me they were giving me $5000 for my son's organs, I would probably have knocked them flat. To me it would be the same as selling my son's body parts. It was so important to me that he made this decision on his own without thoughts of a reward. My point in writing you is to stress that people become organ donors out of the goodness of their hearts and the desire to help others. It is an insult to my son's memory and to me to think someone would offer to pay me for his organs. Had that happened, I would have refused to consent to my son's donation. I believe strongly in organ donations but offering to pay someone is unethical, cold and callous. I would suggest instead that the money be spent on educating others on organ donation and promoting it through awareness. I think you will find that there are a lot of donor families and recipients that would help promote such. Thank you for taking the time to read this. Please feel free to contact me if you have questions or comments. Sincerely, Jodi Jefferson City, MO ~~~~~~~~ My response: Dear Jodi,
I totally understand your point, and we went out of our way in our proposal to Congress, and in our suggested language that would be used in approaching family members, to emphasize that there can be no price placed on the value of the lives that can be saved by the gift of life-giving organs. We mention that the death benefit could be donated in honor of the deceased to a favorite charity, etc. Please, please, do me the favor of checking out our actual language, on our webpage at www.pitt.edu/~htk/organgiving/proposal.htm, and tell me if you find it offensive. If not, I'd love to have you on board. If you still find it in any way offensive, please offer any suggestions that you think might improve it.
Thank you for sharing your experience and view.
Sincerely, Harold Kyriazi
~~~~~~~~ [She responded as follows, making a good point about it being preferable to have people signed up in advance, to spare their families the trauma of having to make that decision blindly, without knowing what their loved one wanted. But at this point, she still was against the idea of monetary incentives.] ~~~~~~~~ Tuesday, June 3, 2003 The word "cadaveric" is offensive. Please use "deceased" instead. It is much kinder and actually preferred by the National Donor Family Council. It also sounds like something used in a science experiment!
You made a good point about death benefits. But people buy life insurance before they die. I am suggesting that you focus on giving living people incentives instead. Push people to sign up before they die, not the family members who are in a state of grieving and turmoil. If people are going to do it for money, it seems less offensive to have the living future donor sign up. If I were not already signed up to be a donor, I would probably sign up knowing that I would help my family after my death. That in itself seems like life insurance. The money would be like a policy, to be used after the death. I have no problem with this idea.
My feelings are still the same regarding my son's death. If he were not already a donor, I could not have agreed to sign him up for such knowing money was involved. It takes away from the sacrifice and the only good thing that comes out of a death, saving others. I believe you may find you lose families because of this issue if it is addressed in the hospital. When a loved one dies, money is not important at that point. You are too busy focusing on trying to breathe and keep going. I also believe it could split familes apart, causing some to accuse the other of just trying to get money. Knowing that your loved ones organs are going to be removed is not an easy thing, even knowing it will help someone else. It almost feels like you are drowning....
I hope this helps. We are all after the same goal, just getting there on a different route. Let me know what you think. I am interested in your goals. Jodi ~~~~~~~~ [Her next letter indicated that she'd changed her mind, at least insofar as she now thinks it worthwhile to try monetary incentives.] ~~~~~~~~ Sunday, June 22, 2003 I have been thinking about the organ incentives and really struggling with it. What I meant about families fighting over incentives is when they do not agree on organ donation period. If my son was not already signed up as a donor, his father would never have agreed to such. Not that he wouldn't want to save lives but solely for the reason he would not want his son cut into and have part of him removed. I would not have been able to give consent for my son and go against his father's belief due to the fact I think his father would have been traumatized over it. I am pretty sure that his parents would not have understood my strong beliefs in organ donation and would possibly accused me of doing it for the money. On the other hand, if they were going to blame me, they would have done so anyway regardless of an incentive. Death does not always bring out the best in us.
Now that I have tried to clarify my earlier statements, I would like to tell you that although I still feel uncomfortable with the incentives, I have pretty much decided that it is worth a try in order to save more lives. I have taken myself out of my shoes and looked at the recipient's family and what they are going through. If it were my child needing a transplant, I would want everything possible done to save him. I'm not sure even offering an incentive will encourage many to donate organs, but I would not want to stand in the way of someone living. My son's recipient unwittingly changed my mind even though she does not believe in organ incentives and was shocked when I brought up the subject. She managed to track me down and called me one night. She is a pretty resourceful person as she found me on her own. I listened to her describe how her transplant had basically given her life back. Last year she worked one day out of the year. This year after the transplant she is working regularly. She is hopeful that someday she may be strong enough to have children. She is very pro organ donation although intitially she had refused to be put on a waiting list. She spends a lot of time doing public speaking and trying to educate people on the positives of organ donations. She is very grateful for the chance of life. To put it simply, I felt very protective toward her and we plan to keep in touch. She would have died without the transplant. She is 27 years old. My son had just turned 22. I am now somewhat reluctantly "on board" with you. I hope that your group gets a chance to have a pilot program to see if it increases organ donations. After all, you are simply trying to save lives, and who can argue with that? Jodi
This page was created on 6/22/03, and last updated 6/27/03