Advances in medical technology and clinical procedures can improve outcomes for many patients. But there can be cases when use of these interventions may not be in the child’s best interest.
In matters of consent – from vaccines and surgery to ending chemotherapy treatments and deciding end of life wishes – adults are presumed to be the decision-makers because most young kids lack the experience and maturity to make complex medical decisions. But a teen likely has greater capacity for making decisions and it’s important for them to have input in their health care decisions, even if they disagree with the standard of care that is being recommended by their clinician. These challenging situations can be distressing for health care professionals.
Resources available in Journal of Pediatric Ethics
The clinical ethics team at Children’s Minnesota analyzes the moral aspects of pediatric health care decisions. They provide thought leadership through the Journal of Pediatric Ethics (JPE), a publication that features articles about their work, research highlights and case reviews. The JPE is available to anyone by subscription.
Ethical principles for difficult decisions
Dr. Ian Wolfe, PhD, MA, RN, HEC-C, senior clinical ethicist at Children’s Minnesota, says there are some underlying ethical principles that all pediatric health care providers can use when making difficult decisions involving kids. “I always start consults with two assumptions: No one is generally walking around doing unethical things on purpose, and parents generally want what’s best for their children,” said Dr. Wolfe. The following principles are also used to guide decision making:
- Shared decision-making. Where, or if, a decision is on the spectrum of shared decision-making is important. Some decisions are clinical decisions not appropriate for parental preference, such as which antibiotic to use or if one is required. Some decisions might be completely up to the parent, such as when there is more than one medically appropriate decision. As children age, we also want to include them in their decisions as appropriate given their maturity level and desire.
- Best interest. In ethics, best interest is considered a guiding principle where context is important. Parents generally want what’s best for their child and for the whole family – and they have a wide latitude to make decisions for their children, even if others think those choices are suboptimal. However, parents are limited by the harm threshold, which might obligate the clinician to take more drastic steps, like report the case to state officials. “It’s a very distressing situation when we think the parents are making a decision that’s not in the child’s best interest, and so we [could] take that concept alone and report [to Child Protective Services],” said Dr. Wolfe. “But that has led to a lot of health care being [perceived as] untrustworthy because [health care providers] weren’t considering the harms of what they were doing when it was used inappropriately. Certainly, reporting to the state is lifesaving for many children and families when it’s used appropriately. But we need to consider the full context.”
- Harm. Parents have wide latitude to raise their children as they see fit. Where they are limited in authority is where the child is at significant risk of imminent harm. Often this is interpreted as where the child’s life is at risk either through action or inaction. This level of harm should be distinct from something we might find not ideal or sub-optimal. The burden of proof is on clinicians to determine the level of harm, certainty of harm, and effectiveness of treatment where a parent is refusing. It is important to consider both the clinician’s obligation as a mandated reporter but also their commitment to fair and equitable care; this responsibility must not be taken lightly.
- Proportionality. “Most ethical questions in pediatrics are disagreements over the proportion of benefit to the burden, and the level of certainty around treatment effectiveness,” said Dr. Wolfe. How much certainty we have around this proportion can help us navigate where decisions lie on the shared decision-making spectrum, as well as whether a treatment might be mandatory, optional, or unreasonable. Treatments such as insulin for diabetes are significantly beneficial with low burden. Without insulin a child will succumb to significant and imminent harm. Treatments such as vaccinations which are aimed at prevention certainly have what most would consider a low burden, but the direct benefit is uncertain enough to allow for parental discretion, particularly because long-term trust with parents will be more beneficial than overriding parental authority. “As health care providers, we are responsible for building trust – starting with the assumption that parents want what’s best for their child – then finding ways to partner with the family for the best possible outcome for the child.”
Dr. Wolfe on Talking Pediatrics podcast
In the episode, “Crack the Case: Conundrums in Pediatric Ethics,” Dr. Wolfe and Dr. Bryan Fate, general pediatrician at Children’s Minnesota, discuss real cases seen in our clinics and the underlying ethical principles that were used to make medical decisions.