On Monday, February 11, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services announced that it successfully resolved a complaint filed on September 2018 against University of North Carolina Health Care System (UNC), a public academic medical center comprised of North Carolina Memorial Hospital, North Carolina Children’s Hospital, North Carolina Neurosciences Hospital, and North Carolina Women’s Hospital. The complaint alleged that an individual with an intellectual disability needed a heart transplant, that UNC denied that person the opportunity to be placed on the United Network for Organ Sharing (UNOS) list, and such denial was on the basis of the individual’s disability.
The scarcity of organs available for transplant necessitates that the transplant community set criteria for who gets organs. The transplant teams at the medical centers choose which patients to place on the transplant waiting list. Each transplant center utilizes its own criteria for accepting candidates for transplant and for determining whether an individual is a good transplant candidate and therefore eligible for transplantation. Besides medical factors, these centers frequently consider other issues they believe could negatively impact the success of the transplant.
Other considerations include the person’s mental health status, whether the potential candidate has a support system and the likelihood of relapse by recovering addicts. The selection process has raised bioethical and legal issues because under these standards transplant centers can reject homeless people, people who live alone, people in recovery, and those that have intellectual challenges. While the process purports to be fair, assessments are made through the assessor’s cultural lens. Some argue that this selection process can be a way of transplant teams rationalizing rejections that are based on social worth and lifestyles and that the criteria can also be used to discriminate against protected classes of individuals, such as those with disabilities.
Here an individual alleged that UNC did just that, discriminated based on the person’s disability. An individual doctor at UNC made the determination that a potential transplant recipient was not a good candidate for a heart transplant because of the individual’s developmental learning disabilities and because the individual does not live independently. The complaint against UNC alleged that without the transplant the potential transplant recipient would eventually die.
OCR used its Early Complaint Resolution (ECR) process, which is a facilitated negotiation between the parties to an OCR complaint that seeks to achieve a resolution. ECR “quickly provides a remedy to the individual that has been allegedly discriminated against as well as securing additional measures that can be implemented to reduce the likelihood of future incidents of alleged discrimination.”
In January 2019, UNC Health Care agreed to amend the individual’s medical records rendering the individual eligible to be considered for placement on the UNOS transplant list. OCR will also provide technical assistance to UNC Health Care in the development of their transplant eligibility policy.
OCR Director Roger Severino stated that “[e]very life is precious and no one should be blocked from access to an organ transplant because of stereotypes about persons with disabilities. It is also against the law.” Read the press release.
Lessons Learned
Policies and practices should ensure that the transplant community, including transplant centers, physicians and other clinical professions avoid even the appearance of unfairness or discriminatory behavior in the allocation of organs. Perceived unfairness could have the effect of reducing the number of donors from communities that feel that members of their community or cultural group are wrongly denied transplants, thus adding to the scarcity of organs.
The transplant community should:
- Proactively review their transplant eligibility policies to ensure that those policies do not promote practices that are discriminatory or that have a discriminatory impact.
- Assess policies and practices by multicultural competency* standards to ensure that determinations of ineligibility are not being made from an assessor’s worldview or based upon the assessor’s personal bias and use of stereotypes.
- Ensure that those that draft and implement policies and procedures, as well as those that assess individuals, receive annual multicultural competency, sensitivity, and anti-discrimination training.
- To reduce the risk of regulatory and legal actions, have strong internal second level review and appeal processes in place to address concerns of unfairness or discrimination related to transplant eligibility as a means of complaint resolution.
- Ensure the legal, regulatory and compliance teams understand social determinants of health, are multiculturally competent, as well as, possess knowledge of anti-discrimination laws and the other regulations specific to the industry.
If the industry does not more effectively self-regulate around issues of fairness and real (or perceived) discrimination in allocating organs, history teaches us that the industry is likely to see greater regulatory oversight and an increase in complaints such as the one discussed in this article. As the awareness grows about the level of subjectivity that may be involved in such life and death decisions (who gets organs), so will the level of scrutiny. It is our moral and social responsibility to ask – “how are selections made and who is influencing and decreeing which individuals get a seat on the lifeboat.
Kudos to OCR for resolving this compliant so quickly.
Footnote
*Multicultural Competency involves acquiring and integrating knowledge, awareness, sensitivity and skills about culture and cultural differences that enables professionals to provide optimal services to or that enables individuals to interact effectively with people of different cultures. Multicultural Competency combines awareness, knowledge, sensitivity and operational effectiveness.
- Cultural knowledge– knowledge about cultural characteristics, values, beliefs, worldviews, history, behaviors, and social mores of another cultural group.
- Cultural awareness – understanding cultural differences and being aware of different cultural values, beliefs, and worldviews.
- Cultural sensitivity– being aware that cultural differences and similarities exist without assigning values to the differences, such as, positive or negative, better or worse, or right or wrong.