Linda Rosenberg and Lisa Dixon, MD: Addressing mental illness is a family affair
NEW YORK >> At a forum for presidential candidates on addictions in New Hampshire, Carly Fiorina recounted the struggle she faced in finding out which doctors her adult daughter with addiction was seeing. Fiorina recalled 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 HIPAA laws, accusing laws intended to protect privacy of actually leading to the detriment of the health of people with addictions and mental illnesses. However, the idea that including family members in treatment is a violation of confidentiality standards is a long-standing myth.
While treating children less than 18-years-old 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. A formal test of these simple conversations increased the rate of family participation in care fourfold.
In spite of the limited formal interaction between family members and treatment providers, it's most often families supporting the treatment process of people with mental illness. When a person is admitted to a psychiatric hospital or a residential treatment center for addictions, family members are usually present, especially for younger adults. Family members assume roles they had not anticipated because the illness often demands that someone acts as a case manager, a medication monitor, a financial planner and a housing coordinator. Generally, that "someone" is a relative of the patient. Family members are a critical and hard to duplicate resource.
The impact of this caregiving on family relationships requires attention in order to sustain the support. Patients can feel guilty or worried about overburdening their relatives, and family members can burn out.
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 support and education not only enhances an individual's recovery, it also can increase the well-being of the caregiving relative. A study of the Family-to-Family Education Program, a 12-week free course offered by the National Alliance on Mental Illness for family members of adults with mental illness, found that program participants improved coping and family problem solving. 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 Univ. Medical Center and director of the Center for Practice Innovations at the New York State Psychiatric Institute.
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