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When is it appropriate to nullify parental authority?
Legal action should be last resort
Pediatricians and other health care providers caring for children often run into conflict with the parents of their patients. As the Internet and other media outlets make medical information more accessible to the public, it seems more people are willing to question the judgment of the physicians assigned to their care.
But what happens when a parent’s wishes are contrary to what the provider thinks is best for the child? Professional ethics dictate both a respect for the autonomy of the patient and the surrogate decision makers (the parents or guardians) and a duty to seek legal intervention if they do not act in the child’s best interest.
Physicians treating children often must strike a delicate balance between respecting parental authority, and valid wishes that may run counter to their own and protecting the health of vulnerable children, say experts.
"It is not an uncommon occurrence. It is probably something that is occurring more commonly than in the past and probably more commonly than most people would imagine," says Joseph R. Zanga, MD, FAAP, head of the section on bioethics for the American Academy of Pediatrics and assistant dean for generalist programs at the Brody School of Medicine at East Carolina University in Greenville, NC. "Frequently, there are two directions: one, the parent who wants something done for the child that the pediatrician may not believe is in his or her best interest; two, is the refusal to do or the strong question about doing something the pediatrician thinks is in the best interest of the child."
A dispute in Michigan between parents of a critically ill 2-year-old girl and her physician recently made national headlines after the girl’s doctors sought legal action to force her parents to allow risky brain surgery needed to save her life, but carried a high risk of killing her or leaving her severely disabled.
Prosecutors in Pontiac, MI, recently dropped their quest to force the parents of Noshin Hoque to allow the surgery after doctors decided her condition had deteriorated to the point that surgery was unlikely to be of any benefit. Previously, two pediatric neurosurgeons told her parents that there was a 70% to 80% chance their daughter would either die or emerge with severe complications from the surgery to remove a walnut-sized brain tumor. Without the surgery, the child would definitely die.
Faced with those odds, her parents chose not to have the surgery, but to take the child instead to a homeopathic care provider in Canada in hopes of a cure.
The case is an extreme example of disputes that happen all the time in pediatric health care, says Douglas Diekema, MD, MPH, associate professor in pediatrics and emergency services and an adjunct professor of medical history and ethics at the University of Washington and Children’s Hospital and Regional Medical Center in Seattle.
In teaching ethics students, Diekema frequently uses the illustration of an infant with a fever whom doctors fear may have meningitis. The physician wants to follow the standard course of ordering a spinal tap to rule out meningitis before proceeding. The parents don’t want their small child undergoing a painful and traumatic procedure unless it is absolutely necessary.
"These parents often ask very good questions," he notes. "They sort of pull us away from what we consider the standard of care and this kind of broad consensus about how you should manage those babies."
The parents may ask about the likelihood that the cause of the fever is, indeed, meningitis and the answer, statistically, is about 1%, Diekema adds. They may feel that is too slim a chance to warrant such a procedure.
"The medical profession looks at this baby and says, Meningitis is a bad thing. Babies who get meningitis can suffer anything from hearing loss to brain damage to death.’ A spinal tap, from our perspective, is a very safe procedure that is somewhat uncomfortable, but not horribly so," he says. "So, from a physician’s perspective, it seems a no-brainer. Why take that chance?"
However, what the physician is really saying is that a 1% chance of meningitis justifies a spinal tap, whereas the parents disagree — they think the procedure is very uncomfortable, and a 1% chance of a serious illness doesn’t warrant it.
"That’s why I like these kinds of illustrations because they expose what lies behind a lot of medical decisions, and that is that there are very few medical decisions that are purely objective, scientific decisions — they also entail some sort of value judgment," he explains.
Physicians must be able to acknowledge that their concept of the best interests of a patient entail some judgment based on their own personal values, he adds.
Advocate, don’t force
A common conflict occurs when parents have qualms about immunizations or refuse to have their children immunized, says Zanga.
"That’s a question of really sitting down with the parents and explaining the importance of having this done and the dangers, mostly nonlife-threatening issues, of not having it done," he says. "It is generally not something we would consider going to court about."
In conflicts that don’t present a serious risk to the life or safety of the child, both Zanga and Diekema say physicians should not consider legal action to force parents to adhere to doctors’ wishes, but instead counsel them as best they can and then adhere to their ultimate decision.
Another common example, cites Diekema, is when parents won’t allow caregivers to administer a sedative to a child about to have sutures placed or another painful, but minor, procedure performed.
"The parents don’t like the idea of this mind-altering drug going into their child, so they refuse it," he says. "I feel strongly that I should sedate a child to sew up his cut. I know the child is going to have an awful experience, and he’s going to be kicking and screaming and remember it as traumatic; when with a little sedative, it would have been reasonably pleasant."
Beyond discussing his feelings with the child’s parents, however, Diekema says he was unwilling to pursue the matter further.
"It does not meet the level of risk of serious harm," he explains. "I struggle a little more with the spinal tap issue because getting meningitis would be serious harm and there is not much risk associated with a spinal tap. But the risk is really too low to justify legal intervention — although you will probably get pediatricians who disagree with that statement — who think that it is enough."
At the point that caregivers feel strongly a certain course is the best for the child, who may face significant, if not life-threatening consequences, physicians should try to explore other alternatives with parents — possible compromises that could make both sides happy.
"In the spinal tap cases, the alternative that usually suits the parents is admitting the child, putting them on antibiotics and treating them as if they had meningitis," he explains. "We would much rather give the spinal tap and then not have to treat the child [if it were negative] and not have them in the hospital for those extra days. But for most people, that is also a reasonable way to treat the child."
In another example, for parents concerned about the rumors that the MMR (measles, mumps, rubella) vaccine causes medical problems, Zanga may offer to give the shots, separately, after talking with the parent about his or her concerns.
"There are sometimes other ways of getting parents to do what is best for their child," he notes.
In some situations, however, physicians may feel that they in good conscience cannot accede to a parent’s wishes, yet at the same time do not feel the situation warrants legal action. Immunization cases are sometimes an example of this, he notes.
"In that case, the club that some pediatricians use is saying, Mrs. Jones, I want to do what is best for your child, and I feel that what is best for your child is to have these immunizations. If we cannot agree on this, I am afraid there will be other situations in which we won’t agree, and that puts me in a difficult position. If we cannot have a trusting relationship, perhaps it would be best to find another pediatrician who is comfortable with your position.’"
Rational not necessarily better
Diekema also cautions physicians against distinguishing between parents who make scientific or rational-seeming arguments and those who object to a recommended course of action for religious or cultural reasons.
"I don’t think it should matter whether their decision is based on this sort of rational calculation of the risks vs. benefits, or it is a cultural thing or religious thing," he explains. "The latter two bother us more because we don’t understand where they are coming from. My feeling is that when you are talking about intervening in the decision, it doesn’t make sense to intervene in one case simply because the parents have a religious or cultural belief vs. this sort of rational calculation. If you interfere with the religious person, you have to interfere with the other person as well, given the same set of circumstances."
Health care professionals should focus on the situation and the possible consequences for the patient — the child — and leave judgments about the rationality of acceptability of the parents’ argument out of it, he notes.
"We say we use the best interest’ standard to help us decide. But what most people — doctors, lawyers, judges — really end up using is what I consider the harm principle," he continues. "Most ethicists argue that parents should not be able to make decisions that put their child at risk of serious harm. Short of that degree of harm or risk of harm, they should be allowed to make decisions even if we don’t agree with them."
Diekema acknowledges that sometimes the potential for harm is great, no matter which choice is made — as in the Hoque case. In that situation, he contends, the decision should rest with the parents.
In a similar case in Delaware, physicians tried to force the parents of a child with cancer to allow him to undergo chemotherapy and radiation even though physicians estimated he had only a 40% chance of survival and the course of treatment would likely be very debilitating.
"It was a difficult situation with a high potential for a poor outcome. The parents, who happened to be Christian Scientists, said they didn’t want to do it; they wanted palliative care," Diekema says. "The Delaware Supreme Court, wisely, I think, said they should be allowed to make that decision for their child, and they said it quite strongly and were quite critical of those who would challenge that notion."
• Douglas Diekema, MD, MPH, Children’s Hospital and Regional Medical Center, University of Washington, M/S 5D-1, Box 357120, Seattle, WA 98195-7120.
• Joseph R. Zanga, MD, FAAP, Assistant Dean for Generalist Programs, The Brody School of Medicine at East Carolina University, 600 Moye Blvd., Greenville, NC 27834.