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In the middle of a busy clinic I go to see my next patient, a 16-year-old girl with a swollen knee. I had seen her the week before and, after discussing the options regarding treatment of her arthritis, had organized a joint injection for today. As I walk in the door she emphatically informs me, over her parents’ objections, that she is not going to have the injection.
What should we do? What are her rights as a minor? Can she refuse treatment? Further, what obligation do we have as providers and the parents have as guardians to make sure she receives appropriate treatment of her disease?
Informed Consent
Adults, defined as those people 18 years or older, are presumed to make their treatment decisions based on informed consent. This forms the basic tenet of a doctor-patient relationship. However, in pediatrics, where shared decision making is encouraged, informed consent consists of a combination of parental permission and child assent. This works well when parent and child are on the same page, but falls apart when disagreement occurs over the best treatment options. Under certain circumstances, children are legally able to make their own decisions. Emancipated minors are one example: included in this group are adolescents who are self-supporting and living separately from their parents, are married, have delivered a child or are on active duty in the military.
Since 1976, the American Academy of Pediatrics has made several policy statements concerning informed consent. In 1995, this also included a statement regarding how parents, patients and providers need to work in partnership in regard to decision making.1 The latest statement from the American Academy of Pediatrics in 2016 goes even further, stating that dissent by the pediatric patient should carry considerable weight, especially when the proposed intervention can be deferred without substantial risk.2
Active involvement of the pediatric patient in any medical decision has been an important development in recent years. The rationale behind this has been that by engaging in their own care the patient is developing an awareness of their disease, an understanding of the treatments available and, therefore, an acceptance of the proposed care. For this to work, the patient must have the capacity to participate in decision making.
Studies have shown that by age 14, adolescents are capable of making appropriate decisions regarding their healthcare.3 In practice, this relies on the patient putting down the cell phone long enough to actually listen to and understand the implications of treatment.
Clinical Research Guidelines
The definition of assent as it applies to clinical research (in true legal speech) is “the affirmative agreement of a minor who is to take part in the informed consent procedure in a way adapted to his or her capabilities, while their legal representative has the formal role of consenting.”4
The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research recommends assent be obtained from all children 7 years old or above, but no federal regulations exist that determine a set age, and this is essentially left to the appropriate institutional review board.5 If the patient refuses to assent, then they will not be able to participate in the offered research, but there are exceptions to this rule.
Options for Resolving Conflicts
When it comes to treatment of a disease, however, the option to refuse can incur serious consequences. If we study this in the context of our patient who is refusing a joint injection, what are our options?
Three choices exist for agreement scenarios involving the patient, parents and provider.6 The first choice—when provider and parents agree but the child disagrees—is that the physician can defer to the parents’ wishes. The second—when the provider and child agree but the parent disagrees—involves the provider advocating for the patient. And the third—when the child and parents disagree but the provider is neutral—involves the physician arbitrating, working to make a deal. We will explore this case given these three options.
Option one is to defer to the parents’ wishes. The patient is already in the office, the parents don’t want to come back—they have taken time off work—but short of holding the patient down to do the procedure, we remain at an impasse. In this situation, we are relying on the parents to convince the child then and there that they are going to get the joint injection. This type of decision making represents constrained parental autonomy. The child’s decision making has been acknowledged—they don’t want the joint injection—but it is limited in that the parents are the ultimate decision makers, and despite the child’s objections, the joint injection will occur as planned.
Option two involves the provider agreeing the joint injection is not necessary. In the short term, this could be an option. For example, the provider could defer the joint injection to another time. Alternatively, the physician could, after hearing the objections to the joint injection from the child—the most common being a fear of needles—offer a different form of treatment. In this situation, for example, an alternative could be to start a disease-modifying anti-rheumatic drug—one that is not an injectable. This gives the patient a choice and leaves the door open to the option of a joint injection in the future should the child agree to it.
Option three requires an attempt at arbitration. In almost every circumstance, this is the preferred option. In my experience, it also seems to be the most common scenario. The arbitration part can be interesting and often provides a window into the parent-child interaction. The parents, in trying to convince the child to cooperate, will frequently try to coerce the child by threatening to take away a cell phone or some other activity unless the child relents. This may be effective if the parents have followed through on this in the past. However, it often backfires if the child is very resistant to the injection and still refuses to cooperate. Parents who use a positive approach—“You will be able to walk around Disney without your knee hurting or play soccer without pain,” for example—are often more effective in getting the child to cooperate.
Adolescence is a time in which autonomy is developing; adolescents, therefore, should have a voice in treatment decisions, and we need to listen to what they have to say.
There is no point in having an adolescent participate in decision making if we are going to ignore their decision. However, it is the role of the parent and provider to protect the adolescent from making wrong choices. We are lucky in rheumatology in that we often have time to help the adolescent make the right decision; in higher risk emergency situations, this is not always the case. In those situations, the parents or guardians, and providers can legally overrule the adolescent if they decline lifesaving treatment.
With my patient, efforts at arbitration were unsuccessful, even after taking away car privileges, and the family left the office. They did return, however, a week later, and this time the patient agreed to the joint injection.
B. Anne Eberhard, MBBS, MSc, FRACP, FRCPC, is professor of pediatrics at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, New York.
References
- Informed consent, parental permission, and assent in pediatric practice. Committee on Bioethics, American Academy of Pediatrics. Pediatrics. 1995 Feb;95(2)314–317.
- Katz AL, Webb SA, Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics. 2016 Aug;138(2):e20161485.
- Zutlevics TL, Henning PH. Obligation of clinicians to treat unwilling children and young people: An ethical discussion. J Paediatr Child Health. 2005 Dec;41(12)677–681.
- United States Department of Health and Human Services. Code of Federal Regulations. 45 CFR 46:408. Federal Policy for the Protection of Human Subjects (Subpart D). Washington, D.C. Ref Type: Statute; 2009.
- The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Research involving children: Report and recommendations. Washington, D.C.: DHEW; Publication No. (OS) 77-0044, 1977.
- Sisk BA, DuBois J, Kodish E, et al. Navigating decisional discord: The pediatrician’s role when parents and child disagree. Pediatrics. 2017 Jun;139(6). pii: e20170234.
