What are the issues regarding families and caregivers supporting clozapine treatment?

Family and other caregivers are known to experience significant social, economic and emotional stress because of caring for family members with refractory psychosis, making such caregivers a motivated complement to the clozapine treatment team. Family/caregiver support for patients living in the community can provide vital reinforcement for blood testing regimens, diet and weight control strategies, and other treatment elements. Caregivers are often in a position to offer the clinical team prompt and useful feedback on treatment response, side effects and problematic patient behaviors. Because of clozapine’s low utilization rate, family and caregivers are less likely to be familiar with or well informed about clozapine characteristics than other psychotropic medications. Thus, they can be less equipped to support family members or provide or useful feedback to the team unless they are proactively offered education and involved by clinicians.

When patients give consent to release protected health information, enlisting caregivers to support outpatient clozapine treatment is advisable. Release of information is governed by state laws and federal HIPAA regulations. Experts have testified that HIPAA allows disclosure in situations where an individual does not object to disclosure to a family member or personal representative, including when the provider reasonably infers that the person does not object. HIPAA also allows disclosure when a provider believes that disclosure is necessary to prevent or lessen a serious threat to the health or safety of the person or others. Additionally, HIPAA allows disclosure in emergency circumstances, or where the individual lacks the capacity to consent or object, and the provider determines that disclosure is in the person’s best interests. These exceptions to HIPAA’s privacy protections allow disclosure of protected mental health information where it is necessary, including to avert a danger, to deal with an emergency, or to protect the interests of a person who is incapacitated. See full testimony here.

In the absence of legal exemptions, it may enhance treatment outcomes to appropriately provide caregivers with general information about clozapine treatment protocols, risks and side effects and being available to receive caregiver feedback without divulging protected information. In the absence of patient content to release protected health information, clinicians should have pathways to give families and caregivers opportunities to provide meaningful feedback and data that help assess the patient’s wellbeing.

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