Ethical Considerations in Children with Severe Cognitive and Developmental Disabilities
Since 1995, the American Society of Transplant Physicians guidelines state that cognitive impairment should be considered a contraindication to transplantation only when it is so severe as to impair compliance with essential medication regimens and no caregiver is available to compensate for the individual’s limitations. Yet a 2005 survey of pediatric transplant centers reported that 56 percent of transplant centers would consider an IQ of less than 35 a relative contraindication to solid organ transplantation. Pediatric nephrologist and bioethics fellow Dr. Aaron Wightman, with thesis advisor and mentor Dr. Douglas Diekema, researched the variability in how decisions are made regarding solid organ transplant in children with pronounced cognitive and developmental disabilities.
Reasons for excluding children with profound disabilities from transplant stem, in part, from belief of reduced life expectancy, lack of ability to understand transplantation and comply with the required post-transplant therapy, and a lack of improvement in quality of life. In fact, studies have shown that children with disabilities have better outcomes than any other population. By every measure, these children experience improved quality of life as a result of having a liver transplant or a kidney transplant. Quality of life includes, but is not limited to, the child’s perception of their social, physical, and emotional well-being.
Wightman wrote a computer program to identify patients from the United Network for Organ Sharing database who were up to 18 years old, had had transplants and have intellectual disabilities. He found that:
- 16% of pediatric transplant patients have definite or probable intellectual disabilities.
- These transplant patients have early outcomes (such as graft rejection and patient survival) equivalent to the larger transplant patient population.
This study provides the first national large-scale description of children with intellectual disability who underwent kidney transplantation. There is no evidence to support assumptions that children with disabilities have any lower benefit than any other patient on the wait list. Fairness requires that we avoid discriminating between individuals on morally irrelevant grounds and apply criteria to all in an equal manner. Decisions to not offer a transplant to a child with severe cognitive disabilities, then, perhaps reflect social values rather than medical factors and are in violation of guidelines intended to assure equal access to care. “My experience with bioethics has taught me to step back from an emotional issue, frame a question, and then systematically approach it,” Wightman says.
For more, see Prevalence and outcomes of renal transplantation in children with intellectual disability. Pediatr Transplant. 2014 Nov;18 (7):714-9.
Determine the medically relevant factors to weigh for children with severe cognitive and developmental disabilities to guide decision making for solid organ transplant.
- Miranda Bradford, Seattle Children’s
- André Dick, Seattle Children’s
- Patrick Healey, Seattle Children’s
- Ruth McDonald, Seattle Children’s
- Jodi Smith, Seattle Children's
- Noel Weiss, University of Washington
- Bessie Young, University of Washington
Wightman completed his fellowship in summer 2014 and is now assistant professor at the University of Wisconsin–Madison School of Medicine and Public Health.