A Parent's Refusal and the Harm Principle

A mother brings her previously healthy 4-week-old infant to your office with a 101.5 F fever. Pertinent positives are fussiness this morning and poor breastfeeding. There is no cough, vomiting, diarrhea, nor rash. A sibling has a cold. The exam is notable for a fussy infant who consoles with difficulty. Chest has coarse upper airway sounds, but the breathing is unlabored. Capillary refill is 4 seconds with mild mottling of the distal extremities. The CBC has a white count of 16,000 with 60 segs and 13 bands. Urine dip is normal. The chest x-ray is normal.

You believe the standard of care is to perform a lumbar puncture (LP) and admit for IV antibiotics. The mother, despite all your explanations, refuses the LP, fearing it will hurt the baby. You ask your partner to see the child and talk with mother. Your partner agrees with the need for the LP, but mother continues to refuse consent. Now what?

You could do one of the following:

• Let the mother take the infant home against medical advice and see him back tomorrow.

• Admit the infant for observation without giving antibiotics, since no LP was done.

• Admit and give 48 hours of antibiotics while awaiting the urine and blood cultures.

• Admit for a full 10-day course of antibiotics.

• Notify Child Protective Services, seeking temporary state custody to allow the LP.

When this case was discussed on an emergency medicine listserv, there were advocates for all five action plans. As always, however, it is one thing to advocate nonstandard treatment in the abstract, but another thing when it is your signature on the orders.

Medical ethics has a well-established principle that adults with decisional capacity have the right to refuse recommended care. However, the ethics of a parent refusing medical treatment for his/her child is more complex. While refusal is often referred to as a parent’s right, the language of the 1995 AAP guideline portrays it as the parents’ duty to make reasonable decisions regarding their child’s health care (Pediatrics 1995;95 314-7). The legal system presumes that the parents will typically be the best advocates for their own children. Sometimes, that presumption is wrong. As mandatory reporters of neglect, health care providers form society’s safety net to protect children from harm. This includes harm when exaggerated fears, pseudoscience, or other ideological agendas adversely affect a parent’s decision making.

The classic case taught in pediatric ethics is a parent’s refusal of a blood transfusion for her child for religious reasons. In essentially all cases, a judge will override the parent’s wishes and order life-saving transfusions to be given to keep the child alive until the child is old enough to make religious decisions for himself.

But what about cases in which the harm is less likely to be lethal, the risk is smaller, the danger is less imminent, and/or the basis for the refusal is more sanctioned?

The phrase "in the best interests of the child" is frequently used as shorthand for this situation. In many muddled meetings of the ethics committee, that phrase has been a reliable moral compass to bring a wayward discussion back into focus. In my experience, however, using that phrase when dealing with the legal system can lead inexperienced practitioners astray. Judges vary, but many are reluctant to override parents’ wishes unless the child is exposed to a risk of harm that is above some significant threshold. Dr. Douglas S. Diekema has called this the Harm Principle. Harm is a qualitative mix of risk, imminence, and severity of a bad outcome. One recent case in Idaho, Mueller v. Auker, sets a very high threshold, as might be expected given that the local culture strongly favors individual rights over government power. That judge used a standard that "no reasonable parent would decline the treatment."

Pediatricians should be advocates for the child. We are stewards of a vast knowledge base, honed clinical judgment, and tremendous technological resources all designed to promote and protect child health. There will be times when that background conflicts with the world view of our patient’s parents. In most cases, by taking the time to establish trust, carefully explain our recommendations, explore the reasons for disagreement, and occasionally obtain a second opinion, we can lead reasonable parents along the better path.

There will be times, however, when our professional role plays out through the legal system. It would be unacceptably paternalistic for the physician to unilaterally usurp a parent’s decision-making authority. Balancing the rights of the parents with the State’s interest in protecting children (a principle known as parens patriae) is the province of a judge. Professionalism means both knowing the right goal and the right way to get there.

Dr. Powell is associate professor of pediatrics at Saint Louis University and a pediatric hospitalist at SSM Cardinal Glennon Children’s Medical Center in St. Louis.

A mother brings her previously healthy 4-week-old infant to your office with a 101.5 F fever. Pertinent positives are fussiness this morning and poor breastfeeding. There is no cough, vomiting, diarrhea, nor rash. A sibling has a cold. The exam is notable for a fussy infant who consoles with difficulty. Chest has coarse upper airway sounds, but the breathing is unlabored. Capillary refill is 4 seconds with mild mottling of the distal extremities. The CBC has a white count of 16,000 with 60 segs and 13 bands. Urine dip is normal. The chest x-ray is normal.

You believe the standard of care is to perform a lumbar puncture (LP) and admit for IV antibiotics. The mother, despite all your explanations, refuses the LP, fearing it will hurt the baby. You ask your partner to see the child and talk with mother. Your partner agrees with the need for the LP, but mother continues to refuse consent. Now what?

You could do one of the following:

• Let the mother take the infant home against medical advice and see him back tomorrow.

• Admit the infant for observation without giving antibiotics, since no LP was done.

• Admit and give 48 hours of antibiotics while awaiting the urine and blood cultures.

• Admit for a full 10-day course of antibiotics.

• Notify Child Protective Services, seeking temporary state custody to allow the LP.

When this case was discussed on an emergency medicine listserv, there were advocates for all five action plans. As always, however, it is one thing to advocate nonstandard treatment in the abstract, but another thing when it is your signature on the orders.

Medical ethics has a well-established principle that adults with decisional capacity have the right to refuse recommended care. However, the ethics of a parent refusing medical treatment for his/her child is more complex. While refusal is often referred to as a parent’s right, the language of the 1995 AAP guideline portrays it as the parents’ duty to make reasonable decisions regarding their child’s health care (Pediatrics 1995;95 314-7). The legal system presumes that the parents will typically be the best advocates for their own children. Sometimes, that presumption is wrong. As mandatory reporters of neglect, health care providers form society’s safety net to protect children from harm. This includes harm when exaggerated fears, pseudoscience, or other ideological agendas adversely affect a parent’s decision making.

The classic case taught in pediatric ethics is a parent’s refusal of a blood transfusion for her child for religious reasons. In essentially all cases, a judge will override the parent’s wishes and order life-saving transfusions to be given to keep the child alive until the child is old enough to make religious decisions for himself.

But what about cases in which the harm is less likely to be lethal, the risk is smaller, the danger is less imminent, and/or the basis for the refusal is more sanctioned?

The phrase "in the best interests of the child" is frequently used as shorthand for this situation. In many muddled meetings of the ethics committee, that phrase has been a reliable moral compass to bring a wayward discussion back into focus. In my experience, however, using that phrase when dealing with the legal system can lead inexperienced practitioners astray. Judges vary, but many are reluctant to override parents’ wishes unless the child is exposed to a risk of harm that is above some significant threshold. Dr. Douglas S. Diekema has called this the Harm Principle. Harm is a qualitative mix of risk, imminence, and severity of a bad outcome. One recent case in Idaho, Mueller v. Auker, sets a very high threshold, as might be expected given that the local culture strongly favors individual rights over government power. That judge used a standard that "no reasonable parent would decline the treatment."

Pediatricians should be advocates for the child. We are stewards of a vast knowledge base, honed clinical judgment, and tremendous technological resources all designed to promote and protect child health. There will be times when that background conflicts with the world view of our patient’s parents. In most cases, by taking the time to establish trust, carefully explain our recommendations, explore the reasons for disagreement, and occasionally obtain a second opinion, we can lead reasonable parents along the better path.

There will be times, however, when our professional role plays out through the legal system. It would be unacceptably paternalistic for the physician to unilaterally usurp a parent’s decision-making authority. Balancing the rights of the parents with the State’s interest in protecting children (a principle known as parens patriae) is the province of a judge. Professionalism means both knowing the right goal and the right way to get there.

Dr. Powell is associate professor of pediatrics at Saint Louis University and a pediatric hospitalist at SSM Cardinal Glennon Children’s Medical Center in St. Louis.

A mother brings her previously healthy 4-week-old infant to your office with a 101.5 F fever. Pertinent positives are fussiness this morning and poor breastfeeding. There is no cough, vomiting, diarrhea, nor rash. A sibling has a cold. The exam is notable for a fussy infant who consoles with difficulty. Chest has coarse upper airway sounds, but the breathing is unlabored. Capillary refill is 4 seconds with mild mottling of the distal extremities. The CBC has a white count of 16,000 with 60 segs and 13 bands. Urine dip is normal. The chest x-ray is normal.

You believe the standard of care is to perform a lumbar puncture (LP) and admit for IV antibiotics. The mother, despite all your explanations, refuses the LP, fearing it will hurt the baby. You ask your partner to see the child and talk with mother. Your partner agrees with the need for the LP, but mother continues to refuse consent. Now what?

You could do one of the following:

• Let the mother take the infant home against medical advice and see him back tomorrow.

• Admit the infant for observation without giving antibiotics, since no LP was done.

• Admit and give 48 hours of antibiotics while awaiting the urine and blood cultures.

• Admit for a full 10-day course of antibiotics.

• Notify Child Protective Services, seeking temporary state custody to allow the LP.

When this case was discussed on an emergency medicine listserv, there were advocates for all five action plans. As always, however, it is one thing to advocate nonstandard treatment in the abstract, but another thing when it is your signature on the orders.

Medical ethics has a well-established principle that adults with decisional capacity have the right to refuse recommended care. However, the ethics of a parent refusing medical treatment for his/her child is more complex. While refusal is often referred to as a parent’s right, the language of the 1995 AAP guideline portrays it as the parents’ duty to make reasonable decisions regarding their child’s health care (Pediatrics 1995;95 314-7). The legal system presumes that the parents will typically be the best advocates for their own children. Sometimes, that presumption is wrong. As mandatory reporters of neglect, health care providers form society’s safety net to protect children from harm. This includes harm when exaggerated fears, pseudoscience, or other ideological agendas adversely affect a parent’s decision making.

The classic case taught in pediatric ethics is a parent’s refusal of a blood transfusion for her child for religious reasons. In essentially all cases, a judge will override the parent’s wishes and order life-saving transfusions to be given to keep the child alive until the child is old enough to make religious decisions for himself.

But what about cases in which the harm is less likely to be lethal, the risk is smaller, the danger is less imminent, and/or the basis for the refusal is more sanctioned?

The phrase "in the best interests of the child" is frequently used as shorthand for this situation. In many muddled meetings of the ethics committee, that phrase has been a reliable moral compass to bring a wayward discussion back into focus. In my experience, however, using that phrase when dealing with the legal system can lead inexperienced practitioners astray. Judges vary, but many are reluctant to override parents’ wishes unless the child is exposed to a risk of harm that is above some significant threshold. Dr. Douglas S. Diekema has called this the Harm Principle. Harm is a qualitative mix of risk, imminence, and severity of a bad outcome. One recent case in Idaho, Mueller v. Auker, sets a very high threshold, as might be expected given that the local culture strongly favors individual rights over government power. That judge used a standard that "no reasonable parent would decline the treatment."

Pediatricians should be advocates for the child. We are stewards of a vast knowledge base, honed clinical judgment, and tremendous technological resources all designed to promote and protect child health. There will be times when that background conflicts with the world view of our patient’s parents. In most cases, by taking the time to establish trust, carefully explain our recommendations, explore the reasons for disagreement, and occasionally obtain a second opinion, we can lead reasonable parents along the better path.

There will be times, however, when our professional role plays out through the legal system. It would be unacceptably paternalistic for the physician to unilaterally usurp a parent’s decision-making authority. Balancing the rights of the parents with the State’s interest in protecting children (a principle known as parens patriae) is the province of a judge. Professionalism means both knowing the right goal and the right way to get there.

Dr. Powell is associate professor of pediatrics at Saint Louis University and a pediatric hospitalist at SSM Cardinal Glennon Children’s Medical Center in St. Louis.