Family Involvement in Treatment and Discharge Planning

Good communication between individuals and physicians—and families—is critical to effective care. Despite this, families are often left out of conversations about treatment and discharge planning. NAMI (National Alliance on Mental Illness) and NAMI NYC-Metro, as organizations of members who live with mental illness and families, see the bright potential of greater recovery and resiliency when families are actively engaged as part of the treatment team.

Consider this scenario: A young adult is in the emergency department with a first psychotic episode. A psychiatrist is interviewing the young man, who has been handcuffed to his bed by the police. The stunned parents stand by. They have never seen psychosis before and are frightened and anxious. Their son tells the physician stories that seem nightmarish. A week later, their son is discharged because he is no longer considered a risk to himself or others. The physician gives the parents medication and a follow-up appointment with an outside psychiatrist later in the week. No further information about his diagnosis, symptoms, treatment plan, what symptoms to look for and how to respond to them, or community resources is provided.

Without any psychoeducation and the skills needed to talk to their son about psychosis, to understand what he’s been through, to separate out their panic from the critical work they need to do of monitoring symptoms and facilitating treatment, the parents are at a loss. Yet, the parents are the front line of defense for their son in coping with his new diagnosis, his “new normal.”

That was the experience of one of NAMI-NYC Metro’s board members. He and his wife had no idea what supporting their son would entail. Two years later, after several hospitalizations, these parents walked into their first NAMI Family-to-Family educational course. Their ability to engage in the recovery process and to provide valuable information to their son’s doctor improved dramatically.

Mary Giliberti, NAMI’s executive director, says, “Families play a vital role in the support of a family member who experiences mental illness. They should be actively invited and engaged in treatment and discharge planning—and they should get the support and education they need to help in recovery.”

When mental health professionals engage families in care, it helps ensure that everyone supporting an individual’s recovery has the same information and works toward the same goals.

Here’s how Chirlane McCray, first lady of New York City and a mother of two, described her experience: “When I learned that our daughter, Chiara, suffered from depression, substance misuse, and anxiety, I was devastated. My most urgent mission was to help her get the treatment she needed to get well. I was able to be there for her every step of the way because we found mental health professionals who understood the importance of family support. Too often, families don’t have that experience, which can make recovery more difficult. Including families in an appropriate way during the healing process makes sense and can ease the path to wellness.”

Ms. McCray spearheaded ThriveNYC, a groundbreaking mental health initiative in New York City that emphasizes the important role family members play in the recovery of people with mental health conditions (Psychiatric News, October 21).

Families want to promote the recovery of family members who are learning to live with mental illness. To that end, NAMI and NAMI NYC-Metro think it is important for APA to take a formal position to foster family inclusion in care and family psychoeducation. We specifically recommend the following:

• An APA policy statement promoting active family involvement in treatment and discharge planning and family psychoeducation.

• An APA policy statement promoting a psychiatry residency training requirement, with supporting curriculum, about the importance and value of including families in treatment and discharge planning and in promoting and incorporating family psychoeducation in routine care.

• Support for the National Mental Health Family Caregivers Act (pending introduction in the U.S. Congress) to provide education and support for family caregivers.

The critical role that family caregivers play in recovery from mental illness has been well documented, yet families continue to be denied the information and support necessary to serve in this role. With proper education and support, families can be more actively engaged in the treatment process and in reducing the isolation and suffering so often characteristic of mental illness. Collaboration and strong leadership are needed to achieve a culture of mental health care that embraces the vital role of families as key partners in recovery.

Response from Saul Levin, M.D., M.P.A., APA CEO and medical director, and Kristin Kroeger Ptakowski, APA chief of Policy, Programs, and Partnerships:

APA appreciates NAMI’s contributing to Psychiatric News’ Viewpoints column. We are pleased that our Board of Trustees recently approved an APA position statement titled “Accountability for Persons With Serious Mental Illness” that states that in order to achieve the best possible clinical outcomes, functioning, and quality of life for people with serious mental illness, services should include, but not be limited to, the engagement of family and other primary supports. The statement continues to discuss the need for enhancing education and training at every level of potential intervention, with the inclusion of family engagement and participation in education as well as peer support, knowledge, and skill development. We look forward to continuing to coordinate with NAMI on these aligned initiatives and welcome continued dialogue. (The position statement can be accessed here.) ■