Should post-transplant quality of life determine patient's eligibility?
Recently ripped from the headlines is the heartbreaking story of a 3-year-old girl in dire need of a kidney transplant. Additionally, she was diagnosed with a rare genetic disease called Wolf-Hirschhorn, which is characterized by a distinctive facial appearance, delayed growth and development, diminished intellectual disability, and epileptic-like seizures.
The parents of the girl say that because she is mentally disabled (among other health issues), she was denied the much needed kidney transplant. They claim the denial came from the United Network for Organ Sharing (UNOS), the private, non-profit organization responsible for managing the nation's organ transplant system under contract with the federal government. They also claim the denial came from an unnamed doctor at The Children's Hospital of Philadelphia (CHOP) in Pennsylvania. The girl's mother said in her online blog that doctors initially told the family that their daughter wasn't eligible for a transplant because of her quality of life (QOL) and her mental condition.
Following the allegations by the family, CHOP released the following statement: "The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability."
Mathew Pauley, JD, MA, MDR, director of medical bioethics, Kaiser Permanente, Fontana & Ontario Vineyard Medical Centers, Fontana, CA, says, "For me, coming from an ethical perspective, QOL is a personal, subjective assessment that belongs to an individual. Each person has the right to determine what is meant by 'quality' and by what criteria their quality can be said to be acceptable to them or not."
These are most certainly difficult decisions when it must be determined who would likely benefit more from the scarce transplantable organs available. Melissa Kurtz, MSN, MA, RN, bioethics consultant at The Montefiore-Einstein Center for Bioethics, Bronx, NY, says, "The difficulty in evaluating a person's post-transplant outcome is that it is very hard to predict a person's future behavior. Sometimes transplant candidates do better than predicted, and sometimes worse."
Researchers who conducted a study1 in Pediatric Transplantation set out to investigate how major pediatric solid organ transplant programs use neurodevelopmental delay (NDD) as a criterion in their listing decisions. The researchers developed a survey that was sent to active pediatric solid organ transplant programs across the United States to investigate transplant listing decision-making for NDD children. Respondents to the study were medical/surgical directors and transplant coordinators.
The researchers found that programs inconsistently use NDD in listing decisions. Thirty-nine percent of programs stated that they "rarely" or "never" consider NDD in their decisions, whereas 43% of programs "always" or "usually" do. Sixty-two percent of programs reported that informal processes guide their use of NDD, and no programs describe their process as "formal, explicit, and uniform."
Of course, the 'powers that be' at transplant centers generally want to see transplants succeed. "The role of ethics committees, as well as transplant teams, is to ensure that a candidate's opportunity for transplant is maximized, while potential harms related to transplant are minimized," says Kurtz. "In addition, transplant centers are acutely aware of the numbers of individuals in need of transplant and must balance the varying levels of need against one another when deciding how to allocate scarce resources."
In an earlier study, also in Pediatric Transplantation, researchers reviewed the literature on accessibility and outcomes of organ transplantation in mentally handicapped individuals and on the prevalence of organ donation in this population.2 The study shows that the one- and three-year patient survival rates were 100% and 90%, respectively. The studies reported good compliance with post-transplant medications due to consistent support from family members or caregivers.
The patient must also be in an overall condition that would support the transplant surgery, as well as the post-transplant regimen of immunosuppressant medications. Social factors (such as lack of sufficient social support) are also considered when evaluating a transplant candidate.
Pauley says, "Denial based on current state of health poses no ethical dilemma for me, as long as the process has been fair and deliberative. If my loved one were to be denied, I would need to know that the facts are accurate, and all options have been reviewed."
An ethics committee might be helpful in facilitating better communication and supporting how information is provided.
"Ethics committees can be a forum to hear a patient/family express concern that the decision to denial fell outside the criteria set," Pauley says. "Telling someone 'no,' especially in a life-and-death situation, requires compassion and time to ensure understanding," he says.
References
- Richards C, Crawley L, Magnus D. Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: Inconsistencies in standards across major pediatric transplant centers. Ped Transplant 2009; 13:843-850.
- Martens M, Jones L, Reiss S. Organ transplantation, organ donation and mental retardation. Ped Transplant 2006; 10:658–664.
Sources/Resource
- Melissa Kurtz, MSN, MA, RN, Bioethics Consultant, The Montefiore-Einstein Center for Bioethics, Bronx, NY. Email: [email protected].
- Mathew David Pauley, JD, MA, MDR, Director, Medical Bioethics, Kaiser Permanente Fontana & Ontario Vineyard Medical Centers, Fontana, CA. Email: [email protected].
- Chrissy Rivera's blog, Wolf-Hirschhorn syndrome website. Web: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls.
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