New Ethical Guidance on Pediatric Decision-Making
Do clinicians and parents disagree on the best treatment for a child? Ethicists have long debated what ethical principles should guide decision-making in such cases. “We thought we could find consensus if we all got together and tried to find areas of commonality,” says Lainie Friedman Ross, MD, PhD, chair of the department of health humanities and bioethics at the University of Rochester School of Medicine and Dentistry.
During a three-day symposium, 17 experts with diverse points of view developed six recommendations for pediatric decision-making.1 The recommendations give parents wide, but not unlimited, discretion in making decisions for their children. “While parents are expected to promote their child’s health interests, they are not held to a single ‘best’ judgment,” says Ross, director of the Paul M. Schyve, MD Center for Bioethics at the University of Rochester.
According to the guidance, ethical decision-making can factor in parents’ consideration of the child’s non-health interests (e.g., a child’s interest in playing football, even if it risks concussions), and also may consider the interests of other family members, provided those do not severely compromise the child’s health interests.
Various articles on pediatric decision-making present conflicting views on which models should be used. For instance, the best interest standard (i.e., the view that parents should do whatever is in the child’s best interest) competes with the harm principle (i.e., the view that individuals’ actions should not be limited unless those actions cause harm to someone else).2-4 Before the consensus recommendations, ethicists struggled with how to weigh conflicting articles in the literature on pediatric decision-making. Although some articles seemed to express wide disagreement, the experts conducted a deeper examination and found more common ground than expected.
“In reality, it seemed to us that they worked alongside each other, each addressing a different aspect of parental decision-making,” says Douglas S. Diekema, MD, PHP, director of education for the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s and the bioethics fellowship director.
For instance, the “zone of parental discretion” represents the space between an optimal guidance principle (the best interest standard) and the point at which parental refusal to follow medical recommendations crosses an unacceptable line (the harm principle), Diekema offers.
As a general rule, clinicians should presume parents know best, according to the guidance. Clinicians can try to influence parental decisions. Clinicians also can request an ethics consult to be sure all options are considered, and that the clinical team’s assessment is appropriate. “But in the end, clinicians should only invoke the state as a last resort,” Ross says.
For example, based on the guidance, clinicians would be ethically justified in requiring chemotherapy for a 6-year-old patient with acute lymphocytic leukemia with a 90% chance of five-year survival over parental objections.
Overall, the recommendations emphasize shared decision-making between parents and clinicians to promote the child’s interests. However, the recommendations were designed narrowly to cover young children (from infancy through primary school). The authors intentionally excluded decision-making for neonates and adolescents. “We are now engaging in a project to examine whether these recommendations are useful for thinking about decision-making for teenagers and infants,” Ross reports.
To adhere to the guidance, ethicists should listen to parents – and possibly mediate conflicts between clinicians and parents. “But in the end, they should recommend that clinicians respect the parents’ decision unless it falls below some threshold of abuse or neglect,” Ross asserts.
When clinicians at children’s hospitals request an ethics consult, often it is because parents refuse recommended diagnostic tests or treatments. “It is worth re-asserting that a parent’s refusal does not always need to be immediately accepted,” Ross says.
When parents refuse a treatment that is standard of care, try to understand why. Sometimes, parents base decisions on misinformation. For example, parents may refuse surgery for testicular torsion out of fear it will leave the child impotent or infertile. “They often change their mind when given more accurate health information,” Ross says.
In other cases, parents refuse because of religious or cultural beliefs, or because they are making a different risk-benefit calculation than clinicians. Those parents probably will maintain the refusal despite further discussion. Even so, the recommendations support clinicians' attempt to convince the parent to reconsider the risks and benefits of their decision.
“But in the end, the recommendations assert that the parents’ decision should be respected unless they place the child at serious risk of imminent harm,” Ross says.
Erica K. Salter, PhD, HEC-C, often sees clinicians consulting with ethicists because they disagree with parental decisions and are uncertain on how to respond. Clinicians want to know if a parent’s refusal of treatment justifies notifying state authorities, how directive or persuasive clinicians should be, or whether a parental request for treatment should be heeded despite clinicians’ disagreement. Clinicians have requested ethics consults to resolve these specific questions:
- Would a parental refusal to provide a tetanus vaccine to a child with a dirty wound constitute a harm significant enough that state intervention would be appropriate?
- How direct can clinicians be about recommending a do not resuscitate order for a child at the end of life?
- Should cardiac surgery be performed on a baby with trisomy 18?
“The appropriate ethical guidance for each of these situations is complex and context-dependent. It often requires the assistance of an ethics consultant,” says Salter, an associate professor and PhD program director of healthcare ethics at Saint Louis University.
The six consensus recommendations offer well-justified parameters for this type of discussion. Clinicians at SSM Health Cardinal Glennon Children’s Hospital in St. Louis recently requested an ethics consult for a case of a 5-year-old girl who sustained significant neurological and spinal injuries after she was struck by a motor vehicle. The patient was paralyzed from the neck down, ventilator-dependent, and gastrostomy tube-dependent. The family was unhoused at the time of the accident.
The child’s parents requested tracheostomy and gastrostomy tube placement to enable the goal of continued life. The clinical team was uncertain this was in the child’s best interest, considering her poor prognosis and no clear discharge plan.
The ethicist assisted clinicians by clarifying the goals of care. The ethicist also reaffirmed the parents’ decisional authority, despite disagreement about the goals of care. Lastly, the ethicist facilitated safe discharge planning by exploring the availability of community-based resources.
Ethicists used the six consensus recommendations to guide decision-making for this case. The ethicists reminded clinicians that judgments about what constitutes “a life worth living” are not primarily scientific or medical but are, in fact, value judgments. Ethicists stressed patients should have authority when medical decisions are made.
The child ultimately underwent the tracheostomy and gastrostomy tube placement. Clinicians identified a pediatric post-acute care hospital where the child could be admitted indefinitely while the family obtained more permanent housing. “The hospital’s social workers connected the family with community-based resources for housing,” Salter says.
- Salter EK, Hester DM, Vinarcsik L, et al. Pediatric decision making: Consensus recommendations. Pediatrics 2023;152:e2023061832.
- Diekema DS. Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theor Med Bioeth 2004;25:243-264.
- Hubbard R, Greenblum J. Parental decision making: The best interest principle, child autonomy, and reasonableness. HEC Forum 2019;31:233-240.
- Gillam L. The zone of parental discretion: An ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child. Clinical Ethics 2016;11:1-8.
According to the recommendations, ethical decision-making can factor in parents’ consideration of the child’s non-health interests (e.g., a child’s interest in playing football, even if it risks concussions), and also may consider the interests of other family members, provided those do not severely compromise the child’s health.
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