There’s a lot under the surface of life, everyone knows that. A lot of malice and dread and guilt, and so much loneliness, where you wouldn’t really expect to find it, either.
More than two years ago I published, “How ‘Person-Centered’ Care Helped Guide Me Toward Recovery From Mental Illness,” an account of my three psychiatric hospitalizations as an adolescent. The impetus for this essay, which appeared in the March 2013 issue of Health Affairs, stemmed from two separate, distinct, but unified places: my work as a researcher in the mental health field and my own first-hand experience with multiple psychiatric hospitalizations.
Listening to others’ experiences in the hospital, I quickly realized that I was the only person I knew who had a positive, albeit painful, story to tell of a hospitalization. In my 2013 essay, I talked about a charge nurse at the last hospital I was admitted to, who saw me as a whole person and gave me hope when I did not have any for myself.
Shortly after my narrative was published, I received an overwhelming number of emails. The majority were from survivors of child abuse, sharing their own stories of trauma and healing, or from the parents of teenagers who were struggling with mental health difficulties and suicidal ideation, as I had during my high school years.
The stories were heartbreaking and I was filled with a mix of emotions: gratitude that my story had helped some people, and deep sadness at the pervasiveness of childhood sexual abuse and its tragic impacts on individuals and families. I was also filled with hope, and reminded of the resilience of the human heart. Although the road to recovery is long, hard, rugged, and often lonely, many of us try to find meaning and bring light to the dark places we have known and survived.
I also received emails from hospital administrators and clinical practitioners who were discouraged by the bleak state of mental health care practices in this country. They voiced their frustrations along with their commitment to working to effect positive change. Some distributed my paper to their staff in hopes of reaffirming the good work that clinical and support staff are already doing and reminding them of the difference they can make in the lives of their patients. Others have shared my narrative as a way to begin a conversation about making culture changes within their organizations, practices, and units.
The Journey Continues
Yet, though my essay ended with my going to college, at a point of relative success in my life, I am still on the winding road of recovery. Throughout my life, I’ve continued to require care from mental health professionals and relied on them to hold hope for me when I could not hold it for myself. This past year I struggled with a major depressive episode, exacerbated by my complex trauma history. I became very isolated and filled with sorrow. Attempting to heal from this recent depressive episode has been hard, dark, and messy.
In 2014, almost 10 years after my last discharge from the hospital, I found myself in need of inpatient care again. I voluntarily entered an inpatient unit at one of the most highly respected psychiatric hospitals in the country. I felt ashamed that I was in need of such a high level of care and that after many, many years of hard work and creating a meaningful life for myself, my past still affected me in such profound and devastating ways.
The staff at this hospital was kind, and the rooms were single occupancy. As a trauma survivor, these two aspects of a hospital are critical to foster any sense of safety in a strange place. I was a “good” patient. I was motivated to participate (mainly because I was motivated to be discharged and get back to my home, my loving husband, and my work).
I came equipped with many skills that I did not possess in my teenage years—mainly Dialectical Behavioral Therapy skills, a cognitive behavioral treatment developed by Marsha Linehan originally for individuals living with Borderline Personality Disorder and chronic suicidality—and I drew on these skills. But I had been using my skills before my visit to the hospital, too, and I was not finding relief from my suffering. Coping skills are crucial, to be sure, but they do not necessarily alleviate a profound feeling of aloneness and deep despair.
This time, the hospital was not a place that could lessen my suffering. The staff was kind, yes, but these individuals were not interested in what was going on with me, what had happened to me, or what my feelings were — they wanted to know if I had coping skills and if I could use them. I did have them, and I could use them — but clearly this was not enough. A slight change in my medication was made and I was discharged after four days. I was never asked what brought me to the hospital, or what I thought I needed, or how I might get my needs met — I, as a person, was not “seen.”
Where Do We Go From Here?
In our fragmented health care system, with the extreme pressure that hospitals and physicians are under to discharge patients as soon as possible, the needs of people with psychiatric illnesses, particularly those of us who have suffered childhood trauma, are often overlooked. I am not advocating for longer hospital stays if it is not beneficial to the individual—for me, staying longer in this unit would not have been the answer—but I am saying that it takes time to be truly “seen” by providers — as a person who is suffering profoundly and is in need of a personal connection, even for a brief time. With reporting requirements and fee-for-service payment structures, this kind of meaningful treatment is often very difficult for organizations and individuals, even those with the best intentions, to provide.
In my outpatient treatment over the past six years, I have had the good fortune of finding practitioners who see me as a person and recognize my strengths, complexities, and struggles, and who remind me of my humanity, just as the charge nurse did when I was hospitalized at age 17. This is the “person-centered” care I wrote about.
Equally important is the need for affordable care and insurance coverage, which are fundamental to accessing the kind of high-quality care I am advocating for. Access to relatively good insurance has allowed me to receive the level of care I require (with minimal pushback), although I still pay a substantial amount out-of-pocket when the intensity and frequency of my outpatient care is high during times of extreme stress. Even in the wake of health care reform and mental health parity laws, access to adequate mental health coverage is still lacking, and this is unacceptable.
From my conversations with practitioners, researchers, advocates, and people in recovery, it is clear we have come a long way, but we still have a ways to go. The stigma of mental illness is still alive, even among those of us who work in the mental health field. That stigma perpetuates shame, making the journey through the dark times even lonelier and recovery all that more difficult.
It is not easy to bear witness to someone’s pain. It’s easier to treat symptoms or even to place some blame on the individual who is suffering. But patients need someone to listen. We need someone to take the time to hear our stories and stand beside us. Regardless of where one is on the road to recovery, they cannot make the journey alone.
The inclusion of peer mentors—people with histories of mental illness who are hired as mental health staff—in inpatient units would be extremely helpful. Research has shown the peer-to-peer model of care provides a level of comfort for the patient and can reduce the impact of stigma and enhance a person’s self-efficacy. The work that peer mentors do currently is not a billable service in some states. This needs to change.
We need a new structure for paying for mental health services so that we do not have to fight the insurance companies to get the care that we need, and so that providers are not under such pressure to provide treatment in as short of time as possible, in both inpatient and outpatient settings. We need providers and insurers on our side too. If we are dedicated to being in the business of helping people before we are in the business of making money, we need to create policies that meet the real needs of real people.
No comments:
Post a Comment