Luis is a 14-year-old male who recently arrived in the United States from Guatemala and is staying at a shelter for unaccompanied immigrant children. One day, while playing soccer, he is hit by another player. He is brought to the emergency department where a chest X-ray identifies an incidental lesion.
After initial testing, the lesion is felt to most likely be benign. However, an excisional biopsy is recommended. Who should be informed of his illness and who should provide consent?
Children presenting for medical care without an accompanying adult is not a new challenge. However, national immigration policy and higher volumes of unaccompanied immigrant children (UIC) arriving to the United States have highlighted the need to consider this important topic.
UIC are described by the Department of Homeland Security as having “no lawful immigration status in the United States; has not attained 18 years of age; and with respect to whom (i) there is no parent or legal guardian in the United States; or (ii) no parent or legal guardian in the United States is available to provide care and physical custody.”
Not all UIC arrive to the United States alone. Many children have been separated from their families at the border. And while policy changes no longer require that all children be separated from their parents, many continue to be separated for reasons of detention, removal or prosecution of the adult family member.
Upon arrival, UIC are typically held in a Customs and Border Protection detention facility for up to 72 hours before being transferred to Office of Refugee Resettlement (ORR) custody. From there, they are placed in ORR shelters for unaccompanied minors, often for months, pending reunification with a family member, community sponsor, or placement in the foster care system.
Most shelters have daily nursing staff and all have access to medical care either on or offsite. If medical needs arise that surpass the capabilities of the ORR shelter, the UIC will be brought to a local clinic, emergency department, or hospital.
As with any patient, if a UIC requires treatment, informed consent must be obtained. Legally, ORR has the full authority to consent; however, ethically, it becomes more complex. Despite being minors, children have full, independent moral status. Whereas adults are legally competent to make their own healthcare decisions and advocate for themselves, minors are legally incompetent (and may lack capacity) to make their own healthcare decisions and advocate for their own interests.
Hence, children require caregiver advocates to protect their interests when healthcare decisions are made on their behalf. UIC do not have a natural advocate with them, so they are in a vulnerable position for many other reasons, including language and cultural barriers, immigration concerns, and real or perceived power differentials between the child and their medical team and ORR staff.
Healthcare practitioners have a fiduciary obligation to advocate for their minor patient’s interests; however, these professionals also have competing obligations to their employer, institution, and society. It is impossible for a medical team to balance all cultural values, personal beliefs, or other factors that impact healthcare decisions.
For example, in situations where multiple treatment options are available, providers will often prefer the option with the greatest chance of success, whereas a family may choose an option with a slightly lower chance of success but fewer negative consequences.
Balancing the desire for cure with potential negative side effects is a decision that is affected by many things, including one’s personal values and goals of care. Thus, providing an UIC with a healthcare advocate, who ideally understands the patient’s values, can assist in determining what is truly best for the patient.
Finding an appropriate advocate can be challenging. Minors should participate in medical decisions (as is age appropriate), and their assent should be sought when possible. When doing so would not delay care to the detriment of the minor, clinicians should attempt to reach an adult who is knowledgeable about the patient’s medical history and prioritizes the minor’s well-being. This would typically be a parent or relative, who may live elsewhere in the Unites States or in another country.
The ORR-contracted organization and minor can together advise on who the medical team should contact. Contact should not be attempted if there is any concern that it would compromise the child’s safety. While in ORR custody, ORR (and by extension the organizations that manage the shelters for UIC) has the sole legal ability to consent to treatment. However, while parents do not have medical decision-making authority, obtaining a complete history and having their participation will likely improve the care of the child.
If a family member or other appropriate adult cannot be reached, a third-party advocate, free from competing obligations, should be identified. When the medical team and child advocate cannot come to an agreement, an ethics team or other appropriate resource should be consulted.
We recommend that medical teams feel empowered to fully communicate and partner with the families of UIC, even if they are in another country, as families are the best and most natural advocate for our pediatric patients. We encourage institutions to develop guidelines to support clinicians in this complex situation. By doing so, we will undoubtedly improve the care we provide, and do so in the most ethically responsible manner.
Luis’s mother was eventually contacted in Guatemala. She informed the team that this X-ray finding had been present for several years. She expressed concern that the scar from the biopsy might be interpreted by others to be a result of gang violence and felt comfortable with observation. The medical team agreed, and Luis will be followed over time.
–By Eric A. Russell, M.D., assistant professor of pediatrics-emergency medicine and global and immigrant health and Frank X. Placencia, M.D., assistant professor of pediatrics-newborn and secondary faculty in the Center for Medical Ethics and Health Policy at Baylor College of Medicine