Health Policy$ense

Allocating Organs to Cognitively Impaired Patients

Halpern & Goldberg provide perspective in NEJM

Should a patient’s level of cognitive function be considered when allocating scarce organs for transplantation? In a recent perspective in the New England Journal of Medicine (NEJM), LDI Senior Fellows Scott Halpern and David Goldberg weigh in on the highly charged debate about organ allocation to cognitively disabled people.

This is no mere academic exercise. Publicized cases include a three-year-old with Wolf-Hirschhorn syndrome, whose mother claims was initially denied a kidney transplant because of her severe cognitive impairment, and a 23-year old who was permanently denied a heart transplant because he was autistic. In response, 30 members of Congress recently petitioned the Department of Health and Human Services (HHS) to “issue guidance on organ transplant discrimination with regards to persons with disabilities” this past year.

Proponents of transplantation for these patients argue that weighing cognitive function in allocation decisions improperly values some lives over others; others counter that considering cognitive function is important because cognitively impaired patients face challenges in their postoperative recovery and immunosuppressive regimens, which may limit the benefits of transplantation.

NEJM interviews Scott Halpern, MD, PhD, Director of The Fostering Improvement in End-of-Life Decision Science (FIELDS) Program and LDI Senior Fellow.

Is cognitive function a legitimate criterion for organ allocation decisions, and if so, in what context? Halpern and Goldberg analyze several key aspects of the issue.

Should judgments of the quality of life to be gained after transplantation be considered in allocating organs? Allocation decisions are based on maximizing the number of lives saved and life-years to be gained, yet it is not apparent how, and if, the quality of those lives should be weighted. Halpern and Goldberg emphasize that it is not within a clinician’s purview to appraise the patient’s quality of life. However, they also note that it is reasonable to consider whether the patient could appreciate benefits from additional years of life, such as someone who is in a permanent vegetative state.

How does cognitive impairment influence survival after transplantation? Data suggest that post-transplant outcomes in children with cognitive disabilities do not differ from children without cognitive disabilities. This finding may be attributed to the oversight of treatment regimens by the child’s caregivers. Unfortunately, no comparable data exist on the impact of cognitive impairment on post-transplant outcomes in adults. This is an area in need of research, and the authors suggest that the United Network for Organ Sharing collect longitudinal data to determine whether or not cognitive impairment influences post-transplantation outcomes. In the mean time, patients who have cognitive impairments, meet traditional transplantation standards, and are able to appreciate having their life extended should be listed for transplantation just as patients without cognitive impairments are listed.

What mechanisms should be implemented to address disputes? Currently, the only mechanism patients and families have to dispute transplant center decisions is to garner public support for their positions. Halpern and Goldberg recognize that such social media and other campaigns are inherently inequitable because families with means and access to media, lawyers, and politicians are at an advantage. Therefore, the authors propose the creation of independent regional review boards to adjudicate disputes. These boards should be composed of transplant clinicians, ethicists, social workers, behavioral psychologists, and community representatives. They should serve not to compel transplant centers, but to listen to disputes and provide impartial recommendations.