By Linda Rosenberg and Lisa Dixon
At a forum on addictions for presidential candidates in New Hampshire, Carly Fiorina recounted the struggle she faced in finding out which doctors her adult daughter with addiction was seeing. Fiorina noted desperately calling numerous professionals only to be rebuffed. When she finally found a doctor who would take her call, he told her that he couldn’t share information about her daughter’s treatment, but he could and would listen to her concerns.
Unfortunately, Fiorina’s experience is common. All too often families are rebuffed when trying to get involved in the care of loved ones with a mental illness or an addiction. They are left alone, confused and frightened.
Fiorina used her personal story to call for changes in the Health Insurance Portability and Accountability Act (HIPAA), saying that laws intended to protect privacy actually harm the health of people with addictions and mental illnesses. However, the idea that including family members in treatment is a violation of confidentiality is a long-standing myth.
While treating children younger than 18 years of age requires the engagement of families, there is no such legal requirement in the care of adults, regardless of whether they live with or depend upon their families.
Practitioners must take the extra step of seeking a patient’s permission and setting parameters for family participation. However, if they make the many options for family participation clear and elicit patients’ preferences and concerns, the reluctance of patients to include families diminishes.
Numerous studies show that the additional work required to include families in care is well worth it. Studies show that family psychoeducation improves the health of individuals with bipolar and other mood disorders, obsessive compulsive disorder, post-traumatic stress disorder and traumatic brain injury. For people with schizophrenia, family psychoeducation can cut relapse rates in half. Family members also had less distress, greater knowledge and were more empowered.
Everyone needs love and support when the going gets tough, and someone battling a serious mental illness or an addiction is no different. It’s incumbent upon us to understand the benefits of family involvement and to offer all patients that option. More often than not, people want a family member by their side to walk the road to recovery together.
Ultimately, patient- and family-centered treatment will reduce relapse rates, increase adherence to treatment and enhance recovery.
Linda Rosenberg is president and CEO of the National Council for Behavioral Health. Lisa Dixon, M.D., is professor of psychiatry and director of the Division of Mental Health Services and Policy Research at Columbia University Medical Center.