Here we discuss a complex and often emotionally wrenching challenge related to informed consent in the provision of pediatric cancer care. For example, what legal and ethical claims do young patients have to information about their cancer diagnosis and treatment recommendations? What are the obstacles and harms of withholding a life-threatening diagnosis from pediatric patients?
Prior to the 20th century, legal and ethical norms surrounding information disclosure to all patients—both pediatric and adults and across treatment contexts—were paternalistic: providers would make decisions about what information to share with patients and families. Paternalistic approaches still prevail today in some national and cultural settings. However, in the United States, paternalistic medical practice is no longer regarded as appropriate legally or ethically. Rather, for adults, informed consent is a legal and ethical obligation and stands at the heart of patient-centered medical decision-making.
Govind Persad, JD, PhD
Many pediatric patients, especially younger patients, are unable to give fully informed consent for medical information or medical procedures. For these patients, other forms of authorization become relevant. Most prominent is consent from the child’s parents. In some cases, assent from the child is also sought. Assent should only be sought if approval or dissent will be seriously taken into account in deciding medical care. For instance, toddlers’ assent would not be appropriate in making decisions about cancer treatment.
For pediatric patients, parents typically enjoy substantial decision-making power to determine what sorts of medical care and information their child should receive. However, there are cases in which parents’ decisions can be overridden, for instance, if the decisions depart from the child’s best medical interest or the physician’s ethical duties.
Understanding the Mature Minor Doctrine
The status of a child’s legal ability to participate in medical decision-making also depends on the degree of the child’s maturity. As children become older, they are viewed as mature minors, who have a more substantial interest in directing their own medical treatment.
One important point to recognize with respect to the “mature minor” doctrine is that its adoption varies by state. States recognize different ages at which minors are regarded as mature, with many states making case-by-case determinations. Some states also recognize that maturity may exist for understanding information about some procedures but not others. This is particularly important to consider given that providers may practice in more than one state simultaneously.
An article published in the American Medical Association Journal of Ethics by the attorney-physician team of Cristie M. Cole, JD, and Eric Kodish, MD, examined how a medical team can effectively deal with the challenges of consent and information-sharing in pediatric oncology treatment.1 They studied a case in which the parents of a 9-year-old child diagnosed with leukemia asked providers not to share information about diagnosis with the child, for fear of causing her emotional distress.
Drs. Cole and Kodish observed that a 9-year-old, unlike some younger children, is typically mature enough for physicians to appropriately ask for his or her assent for medical information and to take that assent seriously. In the article, they also recognized that there are potential benefits of providing the child with accurate information for the child’s emotional well-being. As they explained, with reference to empirical research: “Without understanding why he or she feels bad, the child may begin to ascertain his or her own explanation for secrecy, including that the illness or treatment is a form of punishment.”
They also explained that providing accurate information does not cause more distress and anxiety than withholding information and that providing accurate information may lead to better long-term adjustment and improve adherence to treatment. Even though it would not be justified to allow the child to entirely direct the course of her care, sharing relevant information with the patient is consistent with her interests, according to the authors.
Ultimately, Drs. Cole and Kodish concluded that, in this case, the medical team is ethically obliged to share the leukemia diagnosis with the child, if the child requests information about her treatment. Although the child’s age may influence the timing, presentation, and detail of information, the physician facing a question from a pediatric patient “has an obligation to answer it honestly and in a developmentally appropriate manner.” In this context, it is important for the providers to document their ethical justifications for sharing information.
Making Shared Medical Decisions
In thinking about how to navigate these difficult situations, it is also important to help parents understand that physicians are obliged to share diagnosis and treatment information with their patients, even young ones, and explain that they are not requesting permission to share the information but instead are communicating that the diagnosis will ultimately need to be disclosed to the patient. However, providers should also give parents an opportunity to be involved in when and how the information will be disclosed, so they can participate in the process with their child.
“Before information is given, physicians should assess whether young patients actually want to know their diagnosis and how much they want to know.”— Govind Persad, JD, PhD
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Before information is given, physicians should assess whether young patients actually want to know their diagnosis and how much they want to know. Information should then be provided in a developmentally appropriate manner that is understandable and useful to the person receiving it. Highly technical information will not be useful to a child and may not even be useful to family members.
In cases where it is judged proper to withhold some information, such as prognosis, from a young patient, it is also important to manage this carefully among members of the care team. Particularly in the case of a minor who is at the age of understanding but is not judged to be mature enough to receive certain information, the team’s communication with the minor needs to be clear and consistent. If the minor perceives that information is being withheld from him or her, it could be distressing and confusing. When available, it could be helpful for care teams to draw on the expertise of other specialists, such as social workers, psychologists, or ethicists.
Finally, it is important to recognize why parents might prefer not to have information about a life-threatening illness shared with a minor patient, even when information sharing is required by providers’ ethical obligations or by law. Parents may be passing through stages of grief in which avoiding thoughts about a tragic outcome is more emotionally manageable. Or they may be accustomed to concealing other types of distressing or painful facts from their child. Some parents may be from countries or cultures where medical paternalism for all patients is more generally accepted or where children’s claims to access information are not as commonly recognized. It is important for providers to avoid judging or stigmatizing parents, even though providers must act in accord with their ethical and legal obligations.
DISCLOSURE: Dr. Persad has received grant funding from the Greenwall Foundation.
1. Cole CM, Kodish E: Minors’ right to know and therapeutic privilege. AMA Journal of Ethics 15:638-644, 2013.
Dr. Persad is Assistant Professor at the University of Denver Sturm College of Law and Greenwall Foundation Faculty Scholar in Bioethics.
Editor’s Note: The Law and Ethics in Oncology column is meant to provide general information about legal topics, not legal advice. The law is complex, varying from state to state, and each factual situation is different. Readers are advised to seek advice from their own attorney.
Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO or The ASCO Post.