Bioethics Forum Essay
Looking Back 10 Years: How Far Have We Come in Mental Health Care?
In its inaugural issue in 2011, the journal Narrative Inquiry in Bioethics published a collection of personal narratives on the experiences of people who had been hospitalized with psychiatric illnesses in the United States. The authors explored themes of choice and agency, hope and frustration, and resilience and recovery. The authors also discussed the harms caused by the dominant biomedical model of mental health care, which emphasizes psychological and biological causes and pharmacological treatments. Many authors struggled to receive a proper diagnosis due to the uncertainty of psychiatric science and diagnostic approaches, which led to confusion and distrust of the mental health profession.
A recent issue of Narrative Inquiry in Bioethics, “Living with Mental Health Challenges: Stories of Recovery from Across the Globe,” returns to the topic. The authors, who come from countries around the world, write on strikingly similar themes to those raised more than 10 years ago. For many authors, the answer to the question, “How far have we come in mental health care?” may be: not far enough.
The biomedical model remains predominant. For some, it did provide a path to recovery. One such person was Bunna Phoeun, from Cambodia, who did not know what schizoaffective disorder or mental illness was until a doctor made the diagnosis and prescribed psychiatric medications. “I was shocked because I thought I just had a different personality from other people,” Bunna writes. With medications, Bunna was better able to manage her symptoms and was able to return to work. Some authors were even relieved by their in-patient hospitalization because, as one anonymous author from the United States writes, it “represented a possibility to finally get [help].”
But other authors were not well served by the biomedical model. “I received several diagnoses that in turn resulted in changes to the medications I was taking,” writes Armando Quiñones-Cruz, of Puerto Rico. “The doctor would change the diagnoses every other month from post-traumatic stress disorder, borderline personality, bipolar disorder, and general anxiety. This constant change and unstructured therapy made me skeptical and wary, missing a lot of appointments and medications.” The full text of Quiñones-Cruz’s story is here.
Symposium commentator and psychiatrist Dainius Pūras writes that “psychotropic medications might be needed for some patients, but just focusing on medications will never lead to recovery.” Indeed, he adds that many people suffer more from the effects of mental health services than from the natural causes of their mental health challenges. Instead of only focusing on how to “fix mental disorders” by targeting individuals and their brains, he argues that we should “address the quality of the patient-provider relationship and the social determinants of mental health.”
Symposium editors James DuBois and Heidi Walsh emphasize that the social, cultural, and economic factors that can affect mental health need to be considered when pursuing recovery. They discuss the high suicide rate in India, where one-fifth of the world’s suicides occur. This high rate can be partly attributed to farmers who are in debt, do not own the land they farm, and cannot compete with larger corporate farms. While these factors may seem outside the purview of mental health professionals, this example speaks to the need for multidisciplinary teams that can address all circumstances that can affect a patient’s mental health. Providers who listen to their patients and understand the stresses and challenges they face will strengthen the patient-provider relationship. Attention to the social determinants of health has increased over the last 10 years, but more work needs to be done.
Several of the authors—both 10 years ago and today—discussed the reality that recovery from mental illness can be elusive, and that it can mean different things to different people. For some, recovery may be less about finding a way to live without the disease and more about finding a way to live with it—and finding people to support them. “I suppose you could say I’m in recovery, although the word recovery implies there is some permanent healing,” writes Karin O’Brien, who lives in the U.S. “With mental illness, there is no recovery. It is more accurate to call it a mutually agreed upon co-existence. It is always there, and I’ve learned to accept its presence.” Quiñones-Cruz says, “recovery is an ongoing effort.”
Other authors, however, such as Luc De Bry, Catherine De Bry-Meeùs, and their son Valère De Bry from Belgium, assert that curing mental illness is possible and push back against the “current psychiatric dogma of incurability.”
While the symposium does not provide a definitive answer to whether recovery is ever possible, it serves as a powerful reminder that recovery can take various forms. Despite the complexity of mental health challenges and the different levels of access to resources around the world, the authors each display a powerful sense of personal participation in and reflection on their journeys toward recovery—however they define that for themselves
Quiñones-Cruz speaks for many of the other authors when he says, “To those individuals who may be struggling with any mental health disorder, I would say that we are not just a diagnostic, a medication, or plain symptoms. We are humans and that should be our identity. With this, I mean to say that a diagnosis should not define what we are, or who we are . . . .”
These stories contribute nuance and depth to a much-needed discourse about how to best support and facilitate avenues to recovery for people living with mental health challenges. Ten years later, it may be discouraging to see people still facing the same issues in a system that too often is unhelpful and sometimes is even harmful. However, these stories serve as an important reminder for mental health professionals to think outside the dominant biomedical model, to understand and address the social determinants of health, and to work creatively with people to forge their own paths toward recovery.
Annie Friedrich, PhD, is a staff scientist in the Bioethics Research Center at Washington University School of Medicine in Saint Louis.