Cognitive Impairment and Transplantation Policy

How should patients’ cognitive function be weighed when allocating organs? A perspective recently published in the New England Journal of Medicine (NEJM) (1) shed some light on the issue. State and federal officials are also weighing in, and new laws are under consideration to keep the scarce organ supply open to a wider population and diversity of patients.

To date, four states, California, New Jersey, Maryland, and Massachusetts, have passed laws with provisions to protect citizens who may face discrimination when in need of an organ transplant or anatomical gift. Four other states have introduced bills: Delaware, Kansas, Oregon, and Pennsylvania.

At the federal level, in October 2016, 30 congressional members asked the Department of Health and Human Services (HHS) Office for Civil Rights to issue instructions that discrimination in organ transplantation violates the Americans With Disabilities Act.

An HHS spokesperson said in a statement that the agency is working “to clarify the obligations of covered entities participating in the transplant process and to provide equal access to their programs to individuals with disabilities,” the Washington Post reported.

The NEJM article, by Scott Halpern, MD, PhD, and David Goldberg, MD, both of the Perelman School of Medicine at the University of Pennsylvania, suggested that a workable solution for patient transplant deliberation should prevent preference for the privileged and support accountability for reasonableness.

Review boards could function to adjudicate disputes, the authors noted. The boards might comprise transplant physicians from other regions (via videoconference), ethicists, behavioral psychologists, social workers, and community representatives.

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Halpern and Goldberg noted that evaluations of patients with cognitive impairments could include judgments about the severity and permanence of impairments that might render a transplant “imprudent.” The review board’s decision would not be binding or final, but rather would serve as a set of recommendations for consideration by all transplant centers that might become involved in the case.

Harvard’s Center for Bioethics Community Ethics Committee (CEC), reviewed the topic of cognitive impairment and transplantation, and its report suggested that pediatric patients with intellectual development disorders “should not be categorically excluded from listing for an organ transplant.” The CEC report noted a patient with cognitive impairment receiving a transplant should be able to survive and likely be better off than before the transplant—which would exclude people in a vegetative state.

In response to the NEJM article, the CEC’s Carol Powers, JD, wrote that an advisory committee at each transplant center could assess non-medical criteria used in listing decisions and monitor data.

In the age of social media, Halpern and Goldberg said guidance on transplant decision-making can help level the playing field. They referenced the case of a girl three years of age with Wolf-Hirschhorn syndrome, a rare genetic disease, who was denied a kidney transplant in 2012 because of her severe cognitive impairment. She later received a kidney after her family launched a successful media campaign.

A regional review board could serve impartially as a source of information as campaigns to obtain new organs are publicized in traditional and social media, Halpern and Goldberg said.

As the need for organs continues to be a medical, societal, and ethical issue, debate about how best to allocate the scarce resource is sure to yield more governmental and legal inquiry and new institutional programs that aim for fairer deliberation and allocation.

Reference

1. Halpern SD, Goldberg D. Allocating organs to cognitively impaired patients. N Engl J Med 2017; 376:299–301.

April 2017 (Vol 9, Number 4)