Dr. Mildred Solomon directs EDC’s Center for Applied Ethics and Professional Practice. The center researches the complexities associated with advances in medical knowledge and technology, and designs programs aimed at improving clinical practice, health care decision-making, and, ultimately, patient and family well-being. She was recently named to the U.S. Department of Health and Human Services Secretary’s Advisory Committee on Transplantation, which advises the Secretary on national organ donation policy.
What issues do you expect will come before the Secretary’s Advisory Committee?
First, what are the most effective and ethical ways to encourage organ donation? Second, how should families be approached? For example, if the potential donor had indicated that he or she wanted to be a donor earlier in life—maybe [the donor] signed up in a state registry—can the family trump that desire? What are the best ways to honor and preserve the voice of the deceased?
Other questions pertain to “living donors,” who most often offer a kidney, but occasionally a lobe of their lung or liver. Some people feel that related donors may have more reasons to donate than non-related donors, but the related donors may also have more pressure on them from other family members. How can we ensure that the donor is making a free and fully informed choice? There are also safety issues for living donors. We need to build a national system for assessing the impact on their health and well-being.
What are some ideas being considered to increase organ donation?
One very controversial idea is to offer financial incentives for organ donation. Traditionally in the United States, we’ve been firmly against that. We don’t even compensate deceased donors’ families for funeral expenses, for example, which is another suggestion that has been put on the table.
Another idea, far less controversial, is to promote the use of national registries. These are places where people can record their desire to donate. Many states now have these registries, and most often people indicate their desire when they get, or renew, their driver’s license. The hope is that families will be more likely to support donation, if they know that their loved one indicated that desire. Registries are also a great way to track the effectiveness of public education, since a rise in the number of people on the registry right after an educational effort is a very concrete indicator.
Have other countries tried different approaches?
MS: Spain, for example, has something called “presumed consent.” Hospital personnel convey the message that organ donation will happen when a person dies (if the patient meets certain medical criteria). Families can then opt out. Would that fly in America? With our emphasis on individualism and personal choice, probably not.
What can EDC contribute?
The field needs sophisticated approaches to public and professional education. Also, our social scientists can conduct research on some of the ethical concerns being raised. It’s important to find out whether the problems people speculate about actually arise and to design remedies that minimize the likelihood of harm.
For example, what are the best ways to ensure informed consent by living donors? Regarding professional education, our group conducted a study with the New England Organ Bank in three major New England hospitals. We introduced basic quality improvement methods to ensure that hospitals identified all potential donor families. We also designed Family Support Teams to ensure that families received consistent information and emotional support. That was a very gratifying project.
Originally published on April 30, 2006