When Patients’ Requests Present Ethical Challenges

Consider this: A child suspected of having a developmental disability is scheduled with a provider at Kennedy Krieger Institute. The child’s parent tells the intake staff member that she prefers the child be scheduled with a provider of a specific racial background. How do we respect patients’ preferences while also recognizing that expertise and clinical care do not fall into specific cultural or racial lines?

One way to begin to address these questions is to seek information from our policies on the culture of care, which state that “Kennedy Krieger Institute recognizes and respects the rights of patients and their families and treats them with courtesy and dignity. Kennedy Krieger Institute provides care that preserves cultural, psychosocial, spiritual and personal values, beliefs and preferences.” But how does this square with other ethical principles?

In the Kennedy Krieger Institute Ethics Program, we are guided by the four main principles of biomedical ethics: respect for autonomy, doing good, avoiding harm and supporting justice. These principles can conflict with a stated preference based on culture, race, sexuality or religion. For example, are we supporting the best clinical care if the decision is made based on race, rather than clinical expertise? (I.e., are we doing good?) If we grant such requests, are we indirectly condoning biased attitudes and beliefs? (I.e., are we avoiding harm?) How do we respect patients’ rights to make decisions about their treatment if a treatment conflicts with other values? (I.e., are we respecting autonomy?)

And, what is the impact of such decisions on other patients and staff members, or on members of the community at large? (I.e., are we supporting justice?)

Members of the Ethics Program have developed some basic principles to consider when handling such requests.

  • If there is a desire for a provider of a specific race or ethnicity, and the medical situation is life-threatening, always prioritize providing appropriate clinical care to the patient.
  • If there is a stated desire for a provider of a specific race or ethnicity, and the situation is not life-threatening, we recommend the care management team or provider request further information to understand the context for the request.
  • If needed, the situation should be brought to the attention of the clinical director of the program and relevant Kennedy Krieger personnel (e.g., the care provider involved in clinical decisions regarding the patient). The clinical director and relevant personnel will consider the clinical situation of the patient and the reasons for the request. Clinical directors have the ability to use their discretion to refuse a patient’s request if they determine that the reason for the request would undermine the values and beliefs of the Institute (i.e., request is based on racism, xenophobia, homophobia, etc.).