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 noted desperately calling numerous professionals.
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, saying laws intended to protect privacy actually function to the detriment of people with addictions and mental illnesses.
However, the idea that including family members in treatment is a violation of confidentiality standards is a myth.
While treating children under 18 years old requires engagement of families, there is no such legal requirement in the care of adults, regardless of whether they live with 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.
In spite of the limited formal interaction between family members and treatment providers, it’s most often families who support 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 crucial 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 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.
It’s incumbent upon us to understand the benefits of family involvement and to offer all patients that option.
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.