Directed Donation: What is a Transplant Center To Do?
Debera Palmeri

Debera Palmeri, RN-CCTC, is Liver Transplant Coordinator, Hartford Hospital Transplant Program, Hartford, CT, and is a member of the Colonial Chapter of ANNA.

In the beginning, it all seemingly started nobly enough... a cherubic infant dying of organ failure, a tearful plea on television from distraught parents. Another baby is declared brain dead and those parents decide to donate to that dying child. A life is saved and a happy ending comes from a tragic situation. Well, maybe not for everyone. Fade to another intensive care unit (ICU) and another baby. This is the baby who was at the top of the list because she was the sickest and had waited the longest for that organ. Unfortunately, this baby was by-passed for the baby whose parents were able to get on the 6 o’clock news. This family and this child are not so lucky, as an organ did not become available in time and this equally innocent and angelic child dies. Her parents had trusted the transplant nurses and physicians when they told them that the organ allocation system was fair and equitable. And although there were not enough organs to go around, the system was designed so that money and political or social connections could not influence the system. Well unfortunately, there is a flaw in that system and it is becoming bigger and bigger every day. That flaw is called directed donation.

Loophole in the System
Directed donation means a donor family can designate where their loved one’s organs can go and to whom they may go. It was created so that if someone became an organ donor and they had a friend or family member awaiting a transplant, they could help that person. However, this loophole in the donation regulations now means that those with the right social and financial connections can solicit donations. If you are fortunate enough to be able to pay several thousand dollars a month for a billboard, create a web site, or pay for a newspaper or TV ad, you can game the system. Your loved one may be able to leap frog all those sick people who don’t have the resources to get their stories out.

Most transplant programs will not allow a directed donation that is based on a desire to exclude a recipient due to race, gender, or any other discriminatory reason. However, we are all wrestling with the discriminatory factors just described, and those are money and social connections. Patients and families who have the multi-media sophistication and financial resources are able to get their need for a suitable organ donor out into the public arena. They know how to harness the power of the Internet, print media, and television to mount a public relations effort to solicit a donor organ. This places patients who do not have the socioeconomic resources and connections to lobby for their lives at a disadvantage.
The problem is not that we need to increase awareness of a single individual’s fight for life; the problem is that there are not enough organs to go around. It is a sad fact that when someone gets an organ it means that someone else will not get it and may die. Every single day someone’s child, someone’s brother or sister, and someone’s mom or dad will die because an organ has not become available. All the while, transplant professionals struggle with the life and death issues that govern who gets a life-saving organ when it becomes available.

In 1986, the federal government awarded the United Network for Organ Sharing (UNOS) the Organ Procurement Transplant Network (OPTN) contract. Since that time, statistics have been kept on all aspects of the transplant process. Patient waiting times, death while waiting on the list, survival after transplant, etc. can be found on their Web site at www.unos.org. Based on OPTN data, 90,124 patients were awaiting organ transplants as of October 30, 2005. Patients waiting for life- saving transplants include: 17,526 awaiting liver transplants, 3,047 waiting for heart transplants, and 3,352 waiting for lung transplants. An amazing 63,853 people are in need of a kidney transplant with 1,689 awaiting a pancreas and 2,495 waiting for a combined kidney/pancreas graft (Organ Procurement Transplant Network, 2005). And these numbers increase on a daily basis!

According to UNOS, 7,720 patients died in 2004 while awaiting transplantation (2005). As the number of patients on the list continues to grow, the number who die while waiting will also continue to rise.

There are two sides of the issue that we have to try to reconcile. On one hand you have a family who watches their loved one wither away before their eyes. All they know is their situation, their pain and impending loss. They are motivated by their desire to save the life of their loved one, and if they are in a position to try and solicit donation, why not? The other side is all those people who do not have the resources to affect the allocation system. They too are waiting and trusting a system that has a major flaw in it. Imagine being a transplant coordinator and watching a 60-year-old man, who was waiting at home on the list, get the liver that was supposed to go to that 18-year-old who is in the ICU on the respirator. All because the family was able to get his plight across to the public and the liver was directed to him by the donor’s family.

UNOS Allocation Policy Is Fairest to All
The current organ allocation system is certainly not perfect. One cannot state too often that the problem stems from the fact that there are simply not enough organs to go around. Each patient and family only knows their unique situation. If individual patients are allowed to determine organ allocation, the system will disintegrate into competitive chaos.

The system we have in place is objective and based on the sickest patients getting transplanted first. We must continue to utilize the current UNOS allocation policy because it is the most just and fair to all. Increasing organ donation across the country should continue to be a top priority in the transplant.

Fortunately, directed donation currently only accounts for a small percentage of transplants. The highway to the transplant center is not yet lined with competing bill boards. Most donor families allow their gift to go to the patient most in need and leave the allocation to the OPTN. As a wise man once said, “The needs of the many outweigh the needs of the few.” We should support those desperate families trying to solicit directed donations, but we should not allow them to undermine a system based on fair and equitable distribution of a scarce resource.

This loophole needs to be closed. Right now UNOS has a position statement that they “oppose efforts to solicit deceased organ donors for transplant candidates where no personal bond exists between the patient and the donor or donor family” (UNOS News Bureau, 2004). However, there is no regulatory muscle behind this statement, and this leaves transplant programs in limbo and vulnerable to legal action. They can, and have, been taken to court by both sides in this fight. A recipient family can claim their rights to free speech and commerce are being violated if a center denies them the right to solicit a donor. On the flip side, the patient who is passed over by a directed donation can state that the transplant center was derelict in their duty to follow a fair organ allocation policy.

I believe that UNOS should be bold and make this position statement a formal organ allocation policy that all transplant centers must follow. Will there be law suits? Most assuredly. But UNOS is in a much better position to defend this policy than individual centers, and as the holder of the OPTN contract, UNOS needs to “ensure equity” within the transplant system.

References
Organ Procurement Transplant Network (OPTN). (2005). Waiting List of Candidates as of October 30, 2005. Retrieved October 30, 2005 from www.optn.org/data

UNOS News Bureau. (2004). OPTN/UNOS Board opposes solicitation for deceased organ donation. Press release. Retrieved January 25, 2005 from www.optn.org/news/newsdetail.asp?id=374