What Should Be Done for an Underdeveloped Young Child Whose Parents Refuse a Medical Work-up?

July 13, 2004

Question

What is the best approach to use when parents are not interested in or refuse a medical/developmental work-up for a 2-year-old child who is small in size (falling below the 5th percentile for height/weight)? Although the child has had upward growth, the child is behind in most developmental milestones and has problems with social interaction. What is the best way to make sure that the child receives adequate care?

Response From the Expert

Laurie Scudder, MS, RN-C, PNP
Adjunct Assistant Professor, School of Health Sciences, George Washington University, Washington, DC, and Pediatric Nurse Practitioner in a primary care pediatric practice, Columbia, Md.

The National Center on Child Abuse and Neglect has defined 3 types of neglect. One type is described as "a failure to provide adequate food, clothing, or shelter. It may also include the refusal or delay in seeking health care..."[1] The child you describe could certainly be considered to fall into this category, making the parents' refusal to seek care a potentially reportable case of child neglect under state law. The American Academy of Pediatrics position statement on informed consent emphasizes that providers should seek parental permission in most cases, but must "focus on the goal of providing appropriate care and be prepared to seek legal intervention when parental refusal places the patient at clear and substantial risk."[2]

However, before a provider takes the potentially serious step of contacting Child Protection Services, it is reasonable to explore this decision in more depth with the parents. As healthcare has become more complex, an increasing percentage of adults with inadequate literacy face the daunting challenge of dealing with important healthcare issues when they do not understand the information and materials well enough to make an informed decision. This problem is not limited to just those with limited English proficiency or poor education. The National Adult Literacy Survey estimates that there are 90 million adults in the United States who are unable to comprehend basic health literature.[3] Due to the stigma attached to literacy issues, many of these individuals attempt to hide their lack of understanding by not asking questions.

Have you provided the parents with a nonthreatening environment in which they can ask questions about your rationale for performing this evaluation? Do they know and understand what you're concerned about and what the potential diagnoses are? Do they understand the nature of the tests you wish to perform?

It is also critical to explore the family's health and genetic history. Are there other family members with similar growth and developmental patterns? If so, what was the outcome for these individuals? Are the parents comfortable that their child will "turn out fine"? Or, was the outcome for these family members a poor one, and are the parents fearful of a similar pattern and thus afraid to discuss their concerns openly? Are there issues of one parent "blaming" the other for perceived problems with the child? Is family counseling an option?

Finally, what are the family's financial resources? Are you requesting an evaluation that may require out-of-pocket expenses that are beyond their means? Or will the evaluation lead to difficult work or travel issues that they do not have the resources to solve?

If you have explored these possibilities and conclude that the child is at risk and the parent unwilling to obtain necessary evaluation and care, you are required to make a report. The National Clearinghouse on Child Abuse and Neglect Information is mandated to maintain information about reporting statutes and child-abuse prevention laws in all 50 states, and is a good resource for clinicians. The Clearinghouse has also posted articles related to child abuse and guides for reporting.[4]

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