All in the Family

Mental Illness and Caregiving Across the Generations

March Madness All Year Long

Our mental health system has turned its back on family members.

“I’m sorry,” the psychiatrist sighed. “Your daughter is very ill, but there’s nothing more I can do.”

“But surely,” I started, my thoughts racing faster than my words.

He cut me off. “She’s not an imminent danger to herself or others.”

“But she wants to live with a heroin addict she met last week in the psychiatric hospital.” I heard the desperation in my voice. “She’s doesn’t want to take her medications and insists she doesn’t need therapy because there’s nothing wrong with her.”

“She’s 18. Legally she has the right to make that decision. Being an imminent danger means wielding a gun or a knife, not refusing treatment or making bad decisions.”

“But you’ve said she doesn’t have the ability to make reasonable decisions.”

“She doesn’t, but there’s nothing you or I can do about it. Until she asks for help, our hands are tied.”

When my daughter was 12 she was diagnosed with ADHD. At 16 she was diagnosed with bipolar disorder. Then, her healthcare providers relied on me to administer her medications and inform them of changes to her behavior. We talked about the best ways to manage her illnesses. Then, her illness was effectively managed, and she was accepted to a top-ranked college.

When she turned 18, we crossed a threshold and it was as though I no longer existed. The doctors would not talk to me about her illness. They did not ask me whether she was taking her medications. When she was hospitalized and delusional, the doctors relied on her for explanation of what had led to each crisis.

My daughter is one of many with mental illness who also suffer from anosognosia—she does not understand that she has a mental illness that compromises her ability to make informed decisions. Yet, once she turned 18, she had full control of her health care and other life decisions. She stopped taking her medications and going to her therapy sessions, dropped out of college, and left home.

Our mental health system has turned its back on family members in a misguided belief that this protects the civil rights of people with mental illness. While it is true that the rights of some people with mental illness were violated in the years before deinstitutionalization, most family members want nothing but the best for their loved one. Moreover, requiring people who are not capable of making decisions to make them on their own is a recipe for disaster. Involving families, on the other hand, ensures the civil rights of persons with mental illness and safeguards their dignity.

Ironically, most severe mental illnesses are diagnosed in the early years of adulthood, 75% before age 24. Many first experience wildly fluctuating affect or disorganized thought as college students. At that point, having reached the age of majority, their parents become legally powerless to seek assistance for them. 

But, when families are involved in the lives of persons with severe mental illness, health care providers gain a more accurate understanding of the patient’s history. This, in turn, guides better treatment decisions. How can we hope for accurate diagnoses and effective treatments when doctors have only partial information?

Research shows that when families are involved, rates of treatment adherence are higher and rates of hospitalization are lower. Dr. Harriet Lefley, Professor of Psychiatry and Behavioral Sciences at the University of Miami’s School of Medicine, maintains that family members know the person behind the mental illness, have shared the emotional ravages of the illness, and represent stability in a lifetime of shifting resources and changing clinical services. 

My daughter is now 21. She is addicted to methamphetamine and lives on the street when she’s not in jail. Her father and I love her and have begged to help her. She continues to refuse treatment, saying nothing is wrong with her.

At Rowan University’s New Jersey Institute for Successful Aging, where I am the Director of Research, clinicians diagnose and develop treatment plans for older people. Our internists, psychiatrists, and social workers encourage families to play an active role in decision-making, especially when dementias are suspected. Imagine the uproar there would be if adult children of a parent suffering dementia—someone incapable of making decisions or seeking treatment—were told nothing could be done until mom or dad presented an imminent danger and asked for help! 

People with mental illness and society would be served by solving the problem of untreated mental illness. Although people with mental illness rarely are violent, untreated mental illness presents a threat to others. Just as people with typhoid fever can’t work in restaurants and people with epilepsy must medicate to drive, so too must treatment for mental illness be regulated. We must not require persons with mental illness to present an imminent danger before receiving treatment. Neither can we wait until people who lack awareness of their mental illness, ask for help.

This doesn’t mean forced medications or inhumane institutionalizations. It means using common sense. People with mental illness must be respected and involved in treatment decisions as their ability allows.

It’s March. This means March Madness. Bracketology. Seeding debates. The Final Four. 

But March is also Brain Awareness Month. It’s a good time to begin a dialogue that strives to realign mental illness laws with science and compassion. Family involvement is critical. We must enable, rather than hinder, family efforts. Otherwise, we will face living with March Madness all year long.

Rachel Pruchno, Ph.D. is Endowed Chair and Professor of Medicine at Rowan University School of Osteopathic Medicine. Her memoir Surrounded by Madnessis available at online bookstores.

more...

Subscribe to All in the Family

Current Issue

Just Say It

When and how should we open up to loved ones?