Caring for Family Members with Severe Mental Illness: Dr. Rachel Pruchno’s Story

Social workers are among the first responders for treating mental and behavioral illness. But too often their efforts are undermined by:

• the stigma attached to this kind of disease,
• a health care system not designed to accommodate it, and
• a legal system that works against the involvement of families in helping their loved ones adhere to treatment.

These were the main conclusions reached at the Clinical and Community Practice Grand Rounds held on February 11. An audience comprising mainly MSW students, some of whom tuned in via Livestream, listened as author and developmental psychologist Dr. Rachel Pruchno talked about her new book, Surrounded by Madness: A Memoir of Illness & Family Secrets.

SCROLL DOWN FOR THE LIVESTREAM VIDEO OF THIS EVENT.

Pruchno directs research at the New Jersey Institute for Successful Aging and also occupies an endowed chair at Rowan University’s School of Osteopathic Medicine.

She said she had written the book initially to document her experience of interacting with two family members with severe mental illness—first her mother, who committed suicide when Pruchno was in college, and later her adopted daughter, Sophie, who was treated unsuccessfully for borderline personality disorder.

Pruchno openly admitted that coming to terms with her family history had been a lengthy, painful process. She had long concealed the facts of her mother's illness and, upon learning her daughter had a serious mental condition, did not ”come out” to her family and friends until she really had no choice:

Sophie left home, and I had to explain where she went to my brothers [and the rest of the family]. I couldn’t keep it secret anymore.

Fear of becoming an outcast

Once the book was finished, Pruchno thought she would share it just with her family—but then decided to promote her story to raise awareness of severe mental disorders and to show suffering families they are not alone.

“[Approximately] 78.4 million people in the United States are living with a diagnosable mental illness,” Pruchno stated, “more than those with cancer, heart disease, and diabetes combined.” Add to this figure the family members of these individuals, whose lives are invariably touched by mental illness, and nearly one third of the nation’s population is affected.

But the majority of these people are suffering silently, she said, just as she had been—despite her training as a mental health professional.

Pruchno asked the MSW students why they think people find it so difficult to start a conversation about mental illness—whether their own or that of someone in their family. Most audience members agreed that the stigma attached to mental disorders can have devastating consequences. They said that individual sufferers are frequently deterred from talking about their problems for fear of being ostracized by family, friends, and employers. As a result, they wait until they are in the midst of a crisis before reaching out for professional help.

It is a similar story with families of the mentally ill, students said, many of whom shoulder a sense of personal responsibility for their loved one’s illness. They, too, fear society’s judgement and prefer to say nothing.

Professor of Professional Practice Mary Sormanti, who served as moderator for the discussion, recommended that social workers in training read Surrounded by Madness as it “shows the importance of breaking down barriers.” Pruchno’s account, she went on, warns against the creation of “us and them” dichotomies, based on the false belief that mental disorders are deserved, endemic, or could never happen to us.

A broken mental health care system

Pruchno said she chose memoir as the mouthpiece for her story after conducting extensive research on the genre and finding that many existing memoirs about mental conditions followed a “triumph over adversity” formula. People became ill, grew worse, and then recovered—a narrative that runs counter to the scientific literature, which shows that advances in mental health do not compare to the strides made in treating more readily perceivable, physical illnesses such as diabetes or heart condition.

Particularly deplorable, in Pruchno's view, is the system America maintains for treating those who suffer from mental illness. In the forty years between when her mother and then her daughter were in treatment, this system has not improved, she said, but continues to be underfunded, fragmented, and difficult to navigate. 

Especially troubling, according to Pruchno, is the lack of coordination among caregivers, families, and institutions. Physicians, psychiatrists, lawmakers, and other key entities are not having the conversations they need to on the patient’s behalf, choosing to operate in self-contained “silos” of care.

Similarly, it is easy for lines of communication to break down between families and health professionals. The latter tend to suffer from burnout or else are too overburdened to spend time with families, providing detailed answers to their questions.

Also of concern is the high cost of proper mental health care. Under the current system, many people would be prohibited from using mental health services simply because they cannot afford them, Pruchno explained.

Formidable legal hurdles

Another major hurdle faced by families of the severely mentally ill has to do with the American legal system, which is designed to protect the freedom and privacy of individuals 18 and older. Under current law, once a person turns 18, he or she has the right to make decisions about his or her own health care even in cases of severe mental illness.

Pruchno said that more than half of people who suffer in this way lack awareness of their condition. A bipolar person, for instance, may not realize her or she is having a relapse so will opt for noncompliance, refusing to take medications and sometimes stopping treatment altogether.

But whereas with Alzheimer’s patients, families can step in and say “you’re not safe,” families can do nothing to help an adult with acute mental illness. Pruchno sees this as an irony in light of all the studies showing that, in cases where families stay involved, mental health patients are more likely to adhere to treatment and less likely to end up being hospitalized.

A policy solution on the horizon?

Pruchno said that fixing the broken mental health system will require action at the level of national policy. She stressed the need for boosting federal funding for community behavioral health services, on a par with comparable health care facilities.

On a more positive note, she said she was hopeful about Pennsylvania Congressman Tim Murphy’s “Helping Families in Mental Health Crisis Act” (bill H.R.3717), noting that Murphy, a former practicing psychologist and a Republican, has done more to revive the mental health reform agenda introduced by President Kennedy than anyone else in Washington. (JFK died just three weeks after announcing his initiative.)

If passed, Murphy’s bill would (among other measures) allow more parental involvement in a young adult’s care and also provide more funding for developing evidence-based mental health treatments and making them more widely available.

The role of social workers

Following Pruchno’s presentation, several students wondered whether there was anything social workers could do—right now—to make a difference in the lives of people suffering from mental illness, as well as their families.

Pruchno responded that they could help by encouraging their clients to develop a health care proxy, which allows an individual to appoint an “agent” he or she trusts to make medical decisions on his or her behalf. Though no laws are yet in place that allow health care decisions to be made by family members, health care proxies ensure that a person’s best interest will be protected when he or she is unwell. Download the New York State Department of Health’s Health Care Proxy Form (PDF: 8 pages).

Professor of Professional Practice Ellen Lukens, who develops interventions for adolescents, adults, and families facing mental health concerns, added that perhaps the most important thing one can do as a social worker is to “give families and individuals your time.” Be patient; explain options; answer questions. Give family members the time they need to understand their loved ones’ conditions and what, moving forward, they can do to help.

Both Lukens and Pruchno proposed strengthening one’s knowledge base. Because social workers are often the first professionals to observe and interact with the mentally ill, a comprehensive knowledge of the different disorders, medications, and methods of treatment will only serve to benefit clients.

“Social workers are the frontline responders for those with mental illness,” Pruchno said. “[They] are poised to connect people with key resources.” It is therefore important to know as much as you can. Staying informed yourself, as a social worker, will enable you to inform others.

—Prepared by the Office of Communications

HERE IS THE VIDEO OF PROFESSOR RACHEL PRUCHNO'S TALK: