New recs empower kids, parents in medical decisions

"The real question is, how can physicians and parents work together to do what is respectful of the child's interests?" says Lainie Ross. "In the end, both may have to make compromises." (Credit: Getty Images)

New recommendations for decision making in pediatric medicine center the child and their parents.

For the past 30 years, pediatric medical decision making has claimed to be based on the “best interest of the child.” While this seems like a no-brainer—of course doctors and parents want to do what is best for a child—new recommendations reframe the discussion by omitting “best” and focusing instead on the “child’s interests”.

The updated recommendations encourage physicians and parents to collaborate in a shared decision-making process that acknowledges that children have a plethora of interests (including, but not limited to medical) that influence their wellbeing.

The recommendations also stray from past guidance by starting with the presumption that parents know best. Flipping the script from the traditional playbook—where doctors know best—the new principles advise physicians to give parents plenty of latitude, respecting their knowledge of their child and trusting them to use it to make the right choices for their family.

Published in the journal Pediatrics, the six new consensus recommendations come from a group of medical and ethics experts led by Lainie F. Ross, chair of health humanities and bioethics at the University of Rochester Medical Center, with Erica Salter of St. Louis University and D. Micah Hester of the University of Arkansas for Medical Sciences. The recommendations address the question of how others should make decisions for pediatric patients.

Best vs. good enough

Ross, a primary care pediatrician who has treated patients for more than 30 years, says that parents and physicians often make decisions for children that are best described as “good enough.” She argues that this is more realistic than the long-held standard of acting in “the best interest of the child,” because the notion that there is one “best” path, plan, or treatment doesn’t hold. This thinking led to the development of the following consensus recommendations:

Clinicians and parents should strive to collaborate in a shared decision-making process to promote the child’s interests

Parents should protect and promote the health interests of their children while balancing practical constraints and/or other important obligations and interests

“As a health care provider, the only recommendation I can give to a parent is what I think is medically best for their child. But, the parent might not want to act solely on a health interest; they may want to consider spiritual or financial interests,” notes Ross. “If a medication I recommend would lead to significant hardship for the family, they may opt for a less expensive option, even if it is less effective. As doctors, we love to say that health needs are always the highest priority, but that’s not the case for all people at all times.”

The “best interest” standard also falters because physicians don’t always agree on the optimal course of treatment. One doctor may recommend surgery for a cancer diagnosis, while another would start with chemotherapy. One may only prescribe antibiotics for recurring ear infections, where another provider would push for surgery to insert ear tubes.

According to Ross, moving from the age-old mindset of always doing what is in the “best interest of the child” to promoting the “child’s interests” is an important change and represents significant progress in an area in which there has been sustained disagreement for decades.

“Any parent who has more than one child knows that what is best for one may not be what is best for the other. The real question is, how can physicians and parents work together to do what is respectful of the child’s interests?” says Ross. “In the end, both may have to make compromises.”

Parents know their kids

Ross and the other authors acknowledge that when it comes to decision making, parents have privileged knowledge of their child, including their interests and perspectives. Parents are also best situated to evaluate competing interests that might be at stake for other family members, such as siblings, and for the family as a whole. They contend that this understanding, along with the need to accommodate a wide range of cultural, social, and religious values, warrants giving parents sufficient space and freedom to make decisions. This reasoning led to the following recommendation:

Parents should be presumed to have wide, but not unlimited, discretion to make health care decisions for their children.

“We are encouraging providers to start with the presumption that parents know their children better than anyone else; to acknowledge the many constraints that may play into parental decision making; and to be respectful when parents make a decision that is good enough,” says Ross. “Ultimately, clinicians need to show some humility and acknowledge that we aren’t the ones going home with the child at the end of the day. We need parents to feel empowered to take care of their kids.”

Seeking agreement

Almost always, parents and doctors agree on treatment plans for a child. The new consensus recommendations provide a framework to help the doctor and parent articulate how their agreement was reached and to provide guidance when disagreement arises. The additional consensus recommendations that make up the newly proposed framework are:

A clinicians’ primary responsibility is to protect and promote their pediatric patients’ health interests. Clinicians’ recommendations should be informed by professional judgment and the best available evidence.

To respect children and promote their wellbeing, clinicians and parents should inform pediatric patients of salient information and invite their perspective to the degree that it is developmentally appropriate.

In addition to fulfilling state-mandated reporting requirements, clinicians should seek state intervention when all less-restrictive alternatives have failed and a parental decision places the child at significant risk of serious imminent harm or fails to meet the child’s basic interests.

Given the complexity of this topic, the group developed the recommendations for clinical decision making for children in infancy through primary school. Next steps include testing the recommendations in real-world conditions to determine how useful they are and to figure out if these principles apply to newborns, teenagers, and wards of the state, or whether changes are necessary. The authors also plan to address decision making in the research setting in the future.

Source: University of Rochester