An adolescent disagreeing with a parent over treatment is uncommon in the clinical setting, according to Douglas S. Diekema, MD, MPH, attending physician and director of education at the Treuman Katz Center for Pediatric Bioethics at Seattle (WA) Children’s Hospital.
“You can count those cases on one hand, and I don’t think I’ve ever had one when the adolescent wants one thing and the parent wants another,” he says.
More common are cases of adolescents refusing treatment with a parent fully supporting them. Diekema is aware of multiple cases in which an adolescent went to court to refuse cancer treatment. “In every one of these cases, the parent is backing the child,” says Diekema. While the media focuses on the child who is refusing treatment, the legal decision maker is also refusing care, he notes.
“My bottom line on this, is that if we would not let a parent make the decision, we should not let minors make this decision,” says Diekema.
Diekema’s views are grounded in what is known about the adolescent brain. “The traditional approach ethicists have taken is based on studies that were done some 35 years ago,” he says. One study suggested that by age 14, adolescents have the cognitive ability to make adult-like decisions. This led to the ethics community taking the position that adolescents 14 and older should be considered to at least possibly have adult capacity.
“That never quite sat right with me,” says Diekema. “Anybody that knows adolescents recognizes that even if they have the decision-making ability, they often don’t use it.” Recent studies that had adolescents participate in decision-making while on MRI scanners suggests that in fact, the part of the brain involved in adult decision-making isn’t fully mature yet, and also, that adolescents are more susceptible to peer pressure than adults.1,2
“When you consider this, and you look at these cancer cases, it’s not a surprise that there is usually a parent behind these decisions not to receive treatment,” says Diekema. He points to the recent Cassandra C. case, where both a 17-year old and her mother refused potentially life-saving cancer care. The state’s Supreme Court justices unanimously rejected their argument that the court should adopt the “mature minor” doctrine. “My feeling is, it should be a very rare case in which a judge would allow a minor to make a decision that we wouldn’t allow a parent to make,” he says.
A possible exception, in Diekema’s view, is a case involving a 16-year-old who went to court and was declared a mature minor, giving him the right to refuse a liver transplant. He had undergone two unsuccessful liver transplants previously. “This is the only case I can recall where there was a dispute between parents and adolescents,” he says. There is a difference between an adolescent who has lived with a disease for years than one with a new diagnosis, he adds.
“I do think context matters a lot,” he says. “This is a kid who was looking at a third liver transplant who knew what he was talking about because he had been through it twice.” With less serious healthcare issues, Diekema generally respects adolescents’ decisions — not because he believes they have decision-making capacity but moreso due to the principle of beneficence.
Human papillomavirus (HPV) vaccine is an example. If a parent asks for this and a teenager refuses, “I’m not going to hold him or her down to give them that shot,” he says. “The ethical cost of not respecting his decision at that point doesn’t justify the use of force.”
Instead, Diekema attempts to convince the adolescent. The same approach is taken if parents ask him to screen their adolescent for substance abuse. In one case, a teenager refused to have his genitals examined. “It had some degree of importance in terms of making a diagnosis, but there was no way I was going to call in our Code Strong team to hold him down,” he says.
This compromised Diekema’s ability to provide the best possible care. “But I didn’t feel I was dealing with a list of possibilities that were so bad that it justified my assaulting him,” he says.
A recent paper focusing on autonomous decision-making capacity of adolescents offers a different look at this issue, based on the expertise of a group of international professionals working in the field of bioethics, developmental psychology, neurosciences sociology, and medicine.3 The paper’s recommendations stem from a June 2014 meeting of 20 professionals from all continents, working in the field of adolescent medicine, neurosciences, developmental and clinical psychology, sociology, ethics, and law.
“This paper provides an international view on how to address ethical issues in the care of adolescents,” says Pierre-André Michaud, MD, the paper’s lead author and a professor of adolescent medicine at the University Hospital Center in Lausanne, Switzerland.
Many U.S. states provide age limits for granting minors specific rights, such as confidentiality regarding contraception, or the right to refuse a treatment. However, many countries rely on healthcare providers to assess the extent to which the minor has the capacity to make decisions, as the law does not provide any specific age limit. “In the United States and in some other countries, there is a tendency to rely on the judgment of the court or to ask the opinion of a psychiatrist or a psychologist when dealing with the question of competence or autonomous decision-making capacity,” notes Michaud. The paper’s authors advocate for a “respectful, compassionate dialogue” between the young person and the healthcare provider.
“The feeling of our group was that it was better to rely on the healthcare provider’s opinion, who knows his patient and is often aware of the family, school, and social environment, than to ask for the opinion of ‘experts’ who may make arbitrary decisions regarding competence,” says Michaud.
- Casey BJ, Jones RM, Hare TA. The adolescent brain. Ann N Y Acad Sci 2008; 1124:111–126.
- Giedd JN, Blumenthal J, Jeffries NO, et al. Brain development during childhood and adolescence: a longitudinal MRI study. Nature 1999; 2(10):861-863.
- Michaud PA, Blum RW, Benaroyo L, et al. Assessing an adolescent’s capacity for autonomous decision-making in clinical care. J Adolesc Health 2015; 57(4):361-366.
- Pierre-Andre Michaud, MD. Email: [email protected].
- Douglas S. Diekema, MD, MPH, Director of Education, Treuman Katz Center for Pediatric Bioethics, Seattle (WA) Children’s Hospital. Phone: (206) 987-4346. Fax: (206) 884-1091. Email: [email protected].
