The Waiting Game
Organ Transplant Controversy
January 2, 1998
in this forum:
Is one way to avoid the ethical mess is to have a "National" society of organ donations? What is the difference between heart and brain death? Is it necessary to use Regitine to preserve organs, and what are its dangers? What is the research/clinical status of alternatives such as artificial organs, animal organs, etc.? Is there something wrong with this constant prolonging of life? John R. Conway of Dumont, NJ asks: One way to avoid the ethical mess that is being discussed is to have a "National" society of organ donations that at the time of emancipation from childhood, a person is asked whether or not they wish to donate organs. This could easily be implemented for existing adults by a form that is submitted when it is time to renew drivers licenses, taxes, etc. Eventually almost all of the population could be asked first which I think is paramount in order to avoid anguish.
Dr. William Ritchie responds:Mr. Conway:
Your idea of a national society to facilitate the registration of potential organ donors is not a new concept. First, there are a variety of organizations throughout the U.S. that promote organ/tissue donation. I invite you to explore the following Web page, provided by the Department of Health and Human Services, that provide links to these organizations: http://www.hrsa.dhhs.gov/bhrd/dot/dotlinks.htm
Whether such an organization would be effective continues to be debated within the profession. During October of 1997, the organ procurement organization in Victoria, British Columbia, Canada launched a national donor registry program. A 5 year contract was given to a Canadian Company, Gateway File Systems, Inc., by the Canadian government to establish the registry. One advantage in Canada is that they have a national health care system where every resident is registered in the system with an identification number. This will aid is developing the donor registry.
We have been approached by Gateway to established a similar system in the Washington, D.C. metropolitan area as a test for future nationwide implementation. I, along with other professionals in the field are currently analyzing the feasibility and plan to conduct a market survey to determine if the residents in our service area would agree to such a project. Community empowerment is very important with a project of this nature.
As your are aware, most states allow individuals to indicate their donor preference on their driver licenses. About 20% of the population takes advantage of this opportunity. Normally, this registration process does not provide an accompanying educational component. National surveys suggest that over 90% of people have some knowledge that organ transplantation saves lives and support the process. However, people only consent 50% of the time, somewhat lower in the minority populations. We believe that education is a critical component to ensure that people can make an informed decision.
We live in a death denying society and generally do not like to talk about such issues until faced with a death related situation. We hope to alter this mindset and encourage people to discuss this issue with their families so that families are not faced with making the decision to donate without input from their deceased loved one. We hope to make the process as simple as the process used by people to purchase life insurance. We are planning to seek the assistance of insurance companies to accomplish this objective. This would allow for input and dicussion with children who also provide organs for transplantation.
Please visit the above Web sites for more indepth information on this subject.
Ms. Renee Fox responds:
John Conway's proposal that some kind of national system of organ donation he created wherein, at regular intervals throughout their lifetime, persons are asked and reasked whether or not they wish to donate their organs for transplantation is a thoughtful one. As he intimates, it could have ongoing, consciousness-raising, educational, and self-educational value. It might effectively provide a dynamic process of obtaining informal, voluntary consent -- and nonconsent -- to procure and use a person's organs for transplantation. It should enable individuals to take stock periodically of their feelings and beliefs about being a donor, at intervals that are responsive to where they are in the life cycle, what their personal, familial, and health circumstances are, and how particular experiences may have altered their perspective on what this way of giving of themselves to others entails.
What would have to be worked out, of course, are the auspices under which this system would be organized and administered. (John Conway has suggested in passing a state agency, the driver's licensing bureau, on the one hand, and a federal agency, the Internal Revenue Service, on the other.) How would these data be collected, stored, and transmitted when needed? Would it be possible to maintain necessary confidentiality while at he same time making these data instantly available to relevant medical professionals needing access to authoritative information about whether or not a particular patient, no longer capable of communicating, had given consent to serve as an organ donor? And what would be the psychologically and morally proper way to read and interpret the record of a person who, over the years, had oscillated between ebbing willing to be a donor, and being unwilling? Does the overall pattern mean "yes" or "no"? Should his or her last registered statement be acted upon, ignoring ambivalence suggest that the better part of wisdom would be to define such a person as too uncertain about being a donor to justify removing certain of his/her organs for this purpose?
I have strong reservations about whether the mounting of such a system would result in significantly increasing the number of organs made available for transplantation. I say this for two reasons. The first has to do with the complex barriers in the hospital situation that can impede effective transmission of a patient's intentions to the nurses and doctors responsible for their care. This continues to be a major problem, for example, with regard to implementing the wishes of patients about their care in the terminal phases of their illness, despite the increased use of advance directives, and the passage of the Patient Self-Determination Act in most jurisdictions. Second, although transplant physicians are inclined to characterize organ transplantation as a "routine," albeit life-saving procedure, in certain respects they do not act as if they considered it routine. The most intrepid among the transplanters are disinclined to take organs from a prospective cadaver-donor without consulting his/her family and getting their consent – even if the patient in question has signed a donor card, or made other such testamentary arrangements. The same pattern prevails in those European countries that have passed "presumed consent" legislation that is premised on the assumption that persons are willing to donate their organs unless they specify otherwise. The fact that this legislation has not led to an appreciable increase in the number of accessible transplantable organs suggests that numerous families are reluctant to give consent even if their dying relative has expressed willingness to be a donor, or at least has not indicated unwillingness.
Dr. Michael DeVita responds:
Currently there is a national organization responsible for organ distribution and for oversight of transplantation in general. THe organization, UNOS (United Network for Organ Sharing) was chartered by congress, and is therefore an independent "franchise" which reports to congress.
Laws regarding organ donation (as opposed to organ distribution, which is where organs go once procured) are determined by the state and not by the national government. They vary form state to state creating some confusion. There are two major types of organ donor laws: required request and required refusal. In the former, everyone is required to be asked whether they want to donate. If there is no response, it is assumed they do not want to donate. In required refusal, it is assumed that everyone wants to donate unless they refuse. Therefore no response is a tacit approval for donation. Proponents of required refusal point out that over 80% of respondents to polls state they do intend to donate organs. Opponents argue that only a minority actually do.
Many states have now done exactly as Mr. Conway suggests by requesting a decision at the time of driver's license renewal. No response is usually a "no." This process is usually easy, and affords people repeated opportunities to make their wishes known.
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