Analysis of State Actions Regarding Donor Registries. The Registry as an Advanced Directive

01/04/2000

Legality. The group agreed that in most states, designation as a donor on a driver’s license or other donor documentation is legally binding. In spite of this legal directive, it is rarely implemented as such due to hospitals’ and recovery agencies’ fears regarding legal action or bad publicity resulting from a negative family reaction. A related point is that, by ignoring advanced directives, hospitals or procurement personnel leave themselves open to liability from potential recipients who do not receive organs. Case law on this issue would help to clarify the appropriate actions on advanced directives, and perhaps have an impact on the underlying public and professional expectations related to donation and advanced directives, cited by many as a necessary first barrier to overcome.

Unilateral versus Bilateral Directives. A distinction was made between a unilateral and a bilateral advanced directive. Many conference participants consider that, if the positive designation on valid donor documentation is considered a binding advanced directive, then the negative designation should carry equal weight and be respected. That is, if "yes" means yes, then "no" means no. This is not always the case, however, and in some states, families of deceased individuals who indicated a negative designation on their driver’s license are still approached by procurement personnel. Further, wording of the donor registry question on the driver’s license registration or renewal form may be somewhat ambiguous, e.g., asking individuals if they would like to become part of the registry rather than asking more directly if they would like to become a donor. In some states, the designation of "No" is not noted on the driver’s license or in the registry database, while in all cases the designation of "Yes" is noted.

Ethics of an Advanced Directive. Ethical implications of these approaches were discussed by the participants. It was pointed out that a negative designation might not always be an informed decision on the part of the decedent and that the family should therefore be consulted. Not all participants agreed on this point, and it remains an unresolved issue. Some of the group also felt that certain wording of the question, or omission of negative donation wishes while positive designations are noted, could lead to ambiguity that could be perceived as unethical.

Legislation. Regarding the question of whether further legislation is needed to bolster usage of the registry as an actual advanced directive, the group concurred that the 1987 amendment to the Uniform Anatomical Gift Act (UAGA) was meant to do that, but has not had a substantial effect. Further legislation, if enacted, should include efforts to make donation gifts irrevocable, and should provide immunity for those carrying out advanced directives and organ, tissue, and eye procurement. A further step may be to enact sanctions against medical personnel not adhering to the advance directive. States that have made particular progress on implementing the registry as an advanced directive include Tennessee, Pennsylvania, Illinois, Texas, Florida, Colorado, Arizona, and Virginia.

Two Definitions of "Advanced Directive." Two slightly differing definitions of the term "advanced directive" were presented, with differing potential implications. In one case, an "advanced directive" is the stated intent of an individual in life to donate his or her organs and tissues after death. A broader definition of "advanced directive" is legal documentation outlining an individual’s wishes in the case of incompetence by death. These wishes could include a "Do Not Resuscitate" order that could preclude donation wishes, if both were included in an advanced directive.