Being treated with dignity and respect as a member of Contra Costa Regional Medical Center's Behavioral Healthcare Partnership changed her life, says patient and family advocate, Teresa Pasquini. In this candid interview with IHI Content Development Manager, Jo Ann Endo, Ms. Pasquini describes how her family’s mental health experiences, and the experience she had at Contra Costa, bolstered her dedication to partnering with providers to improve the care system. Pasquini is faculty for the upcoming IHI Expedition on Making Mental Health Care Safer.
Q: How did your family’s experiences lead to your involvement with improving the mental health system?
My immediate family has a 40-year history with the mental health system in California. My brother was a former high school student body president and sports star, and he became sick in his early 20s. He jumped off the Richmond-San Rafael Bridge and ended up in the ICU with a broken back. He had climbed onto the railing with command hallucinations ordering him to die in order to save his family from the Mafia. Fortunately, he was rescued by a local fisherman, taken to the closest ICU, and once stabilized, was transferred to a locked psychiatric ward, where he received medically-necessary treatment for many months.
My brother went home to live with my parents. As a family, we wrapped him in love and support. My husband and I lent my brother money to go back to college, where he received a master’s degree in special education. He went on to save many lives, teaching in the inner city of Richmond, California, where he taught children to never give up hope. He is a hero and a true recovery success story, for me and many other people. Although he’s had relapses over the years, he lives independently and can manage his illness on his own.
Q: How does your son’s experience differ from your brother’s?
In contrast, my son was diagnosed at 15 with the same mental illness — schizoaffective disorder — that my brother has survived. My son’s journey has not been the same hope-filled recovery story. He’s had multiple suicide attempts and over 50 involuntary holds, over the last 14 years. It was when he was hospitalized on his 18th birthday that I literally learned overnight that I had no power over my son’s care due to HIPAA rules. Although my son has always wanted us [his parents] included as part of his treatment team, clinicians often ignored or dismissed and sometimes even blamed us for his symptoms. I’ve been brought to my knees many, many times trying to get my son medically-necessary treatment before tragedy.
During one of my son’s first hospitalizations, the psychiatrist said to us, “You’d be really lucky to get your son into the criminal justice system.” He said it as if it would be like getting your kid into Stanford or UCLA. I didn’t understand back then, but what the psychiatrist meant was that there’s no long-term mental health care as part of the system anymore. He meant, “Your son’s sick, your son needs long-term care, and jail is where we’re providing long-term mental health care these days.”
At some point, I knew that the only control I had was over my voice, my story. I joined every local, state, and national forum to shatter shame around mental health and influence system change for families like mine. That is what brought me to Contra Costa Regional Medical Center, for the beginning of the Behavioral Healthcare Partnership founded in 2009. That’s when I shared my story during an improvement event Contra Costa invited me to join.
Q: Would you describe that initial work with Contra Costa?
I was one of the first of two family members invited to join an improvement event. At the end of that week, I think it was the chief medical officer who said, “Look, we let [the family members] in and the roof didn’t cave in.” He said this jokingly, but it was true. I don’t think any of us knew what to expect.
Looking back, I have to admit that I had kind of a “gotcha” mentality at that point, based on anger. But it was that experience [at the improvement event] that was the start of my “anger wall” coming down because the Contra Costa team treated me with dignity and respect. It was the beginning of a life-changing partnership with Contra Costa Regional Medical Center.
Q: You’ve been candid about the tension that sometimes arises when patients and families actively engage with health care leaders and providers to make improvement. Do you think that tension is inevitable?
I do believe it’s inevitable in our current system. But we must embrace and respectfully push through that tension to a place of no blame and shame towards the patients and the families, and no blame and shame toward the staff. Before the partnership, I felt blamed and shamed, and staff felt blamed and shamed. We were in this battle.
But within the first hour of that improvement event, where Contra Costa invited me to share my experiences, I remember saying, “I’m a proud mom with an adult son with schizophrenia who has been to your hospital multiple times. I want you to know that we’ve done everything we can to prevent him from coming to your door. But when we have no choice and we have to call 911, and we watch our adult son walk out in handcuffs through the door we brought him through as a baby and into an ambulance, we have to trust that there will be the right care at the right time on the other end.”
By the end of that week, the team invited me to be part of the closing remarks for the event. When I spoke, I looked out and saw the tears flowing from the staff, and it was in that moment at Contra Costa that I could see the beginning of change. It hasn’t always been magical, and I don’t want to sugar coat how hard it is sometimes, but that feeling of true partnership remains.
Q: Would you say more about the importance of the “no blame and no shame” approach, for both providers and patients and families, when you’re trying to make improvement?
I think sometimes the staff are afraid [of how families might criticize them] and they don’t realize it’s hard to speak the truth to the people in charge of your child’s life. They literally hold the key to the locked door that you are not allowed to pass through.
I jokingly refer to myself as a “recovering angry mom.” That usually gets a chuckle when I say it. It’s because the respect and dignity I received from the staff and leaders of Contra Costa helped free me from my personal pain, so I can now do the work that I do.
Q: Many of us, including many health care providers who are going to read this interview, have loved ones who are dealing with the challenges of mental illness. What advice do you have for family members?
It isn’t easy, but I believe with all my heart and soul that we have to tell our stories, to shatter shame and stigma. Former Congressman Patrick Kennedy has stated that this is the civil rights movement of our time. Families and advocates and caregivers all have to get comfortable with being uncomfortable about the current state of the mental health care system. We must refuse to be silent and allow harm.
This is a medical illness of the brain that deserves treatment like all other chronic illnesses, but right now we have a system of care shackled by policies and laws that prevent treatment before tragedy. I would just encourage people to challenge the status quo.
Q: What tips do you have for providers about partnering with patients and families to make improvements?
My biggest tip is to let us in, treat us with dignity, and we’ll help you redesign the system. We can move past our own pain and we can see system pain. We’ll learn together, teach together, and transform together.