When a Child's Parents Don't Comply With the Plan of Care, What Should the Clinician Do?

Carolyn Buppert, MSN, JD

Disclosures

February 26, 2019

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Question

Should the Clinician Do More if Parents Aren't Compliant?

A nurse practitioner (NP) working in a specialty clinic relates the following story and asks some specific legal questions at the end.

In a pediatric neurology clinic, an 18-month-old boy was diagnosed with Duchenne muscular dystrophy, confirmed by genetic testing. When the NP called the family to give results of genetics tests, the mother began to cry and hung up the phone. The NP tried calling back eight times over the following 3 weeks and left several messages on voicemail. Finally, the child's father answered the phone one day and the NP communicated the test results and plan of care. A follow-up visit with a pediatric neurologist was scheduled and the patient was referred to pediatric cardiology and neuromuscular clinics. The father verbalized understanding and seemed agreeable to the plan. The child's primary care provider (PCP) was updated via phone call and clinic notes.

The family did not show up for the follow-up appointment with the neurologist. The parents scheduled an appointment with the pediatric cardiologist but did not show up for that appointment and never scheduled an appointment with the neuromuscular clinic. The family has had no other contact with the pediatric neurology clinic.

In this case, does the NP have any further legal or ethical responsibilities to encourage follow-up care? Is the NP obligated to continue to call the family to check in? Should the NP consider reporting to child protective services for concerns of medical neglect? Besides documentation of phone calls, voicemails, and phone conversations, what other documentation is required?

Response from xxAuthorNamexx
Carolyn Buppert, MSN, JD

This question raises at least two issues: a practitioner's obligations regarding patient (parent) compliance and whether it is child abuse to delay treatment of muscular dystrophy.

First, we have to know whether time is of the essence in treating a toddler with that illness. Is there likely to be any injury or damage to the child if the child is untreated, for a while, or if he isn't seen and examined by the various specialties right now? I'm not qualified to provide those answers, but the NP should be able to assess the risks after talking with the specialists.

The parents may need time to get used to the idea of the child's disease and the need for increased contact with medical providers. They may be in denial. They may have insurance problems. Or they may be seeking opinions elsewhere. For now, the NP should document what he or she has told the parents, the parents' response, and the fact that they did not show for their appointments. The NP also should document his or her assessment of what the timeline should be and what the patient's needs are, evaluation- and management-wise. The NP or the neurologist should notify the PCP of the assessment and the missed appointments, and recommend that the PCP communicate with the family and notify the clinic if and when they are ready to proceed.

Whether the NP should continue to pursue the parents depends on the risk assessment. If time is of the essence and a lack of treatment would cause the child to suffer or the disease would get worse, then yes, in that case, the NP in neurology or the PCP should send the parents a letter saying what needs to happen, the timeframe, and the potential consequences if action isn't taken.

The NP's documentation should include a statement like this: "I have explained to the parent(s) the risks, benefits, and alternatives of [the proposed course of action] as well as the risks and consequences of not following the advised course of action. The parents have been given the opportunity to ask questions and I have answered their questions. The parent(s) stated [what they said about their plans]. I have notified the PCP [name the provider] about what has been done and recommended and the parents' reaction, and asked the PCP to notify us if and when the parents want to proceed with neurology evaluation."

If the child is not in danger if the evaluation is put off for a while, and if the NP's reason for calling child protective services is the parents' failure to show up for an appointment, then I don't think it is appropriate to call child protective services in this situation at this time.

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