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.
From a bioethical standpoint, the treatment of mental illness often toys with the bioethical push for autonomy. When one’s condition declines to the point that they require being involuntarily admitted, the bioethical principle of autonomy is shattered. Furthermore, these individuals can be involuntarily given medicine. Medication adherence is often an issue for those with mental illnesses. It is further complicated by social detriments of mental health like one’s access to medicine, insurance, and consistent healthcare.
I found the cases of Bunna Phoeun and Armando Quiñones-Cruz to be very interesting. I could see threads of Wang’s story in the stories of these individuals. Where Phoeun found relief in having a diagnosis, Quiñones-Cruz was distressed by the various changes in diagnosis he had. I am left wondering how we diagnose these individuals. If it is by the DSM-5, then I think it is important to problematize that the DSM was created for American purposes of diagnosis. Different cultures have different norms, which can influence the ways in which a diagnosis is made or not made. Although the DSM can be a helpful tool, I do wonder if it should be used to diagnose those from other countries.
The question in the title is one I have been pondering for a while. Can we ever truly measure how far we have come? What would that measurement be? The DSM has changed several times since its creation. With those changes have come various critiques and concerns. Yet, these changes leave me wondering if we can measure how far we have come when the diagnostic tool has changed over time and continues to change.
I also found this article very interesting from a Narrative Medicine standpoint. The way in which the author toys with the importance of receiving a diagnosis reminded me of the different approaches taken by Esmé Weijun Wang, Kay Redfield Jamison, and Danielle Spencer when coming to terms with being diagnosed.
Wang discusses her experience with schizophrenia in “The Collected Schizophrenias”. She troubles the idea of what a diagnosis means. She notes how her illness was characterized differently when she visited a Chinese natural healer. Due to differences in cultural norms, there were differences in diagnosis. Even Wang’s illness did not fit one diagnosis. She was initially diagnosed with bipolar disorder, until she had her first auditory hallucination. Consequently, Wang’s diagnosis changed to schizoaffective disorder. The narrative she wrote reclaimed it for her, and represented her experience with it. Wang’s struggle to come to terms with her diagnosis, can be seen in the illness experiences of others. In fact, Jamison recounts her difficulties coming to terms with her bipolar disorder, in her memoir “An Unquiet Mind”. Despite being a professor of psychology, Jamison does not seek care because of how stigmatized mental illnesses are. Although the first onset of her symptoms happened when she was 17, Jamison does not seek care until she is 27. Jamison recounts treating patients who she saw her symptoms in, but ignoring the fact she should get diagnosed. Even after her diagnosis she struggled to accept it. Although Wang and Jamison were in 2001 and 1997 respectively, years later mental illness comes with a great deal of stigma that can be a challenge to confront as one acknowledges how they have been impacted.
This stigma also applies to individuals with physical illnesses. Spencer discusses the experience of living with an illness, but never knowing you had it. In her novel “Metagnosis”, Spencer examines how a diagnosis can be a source of relief as it provides an explanation for one’s problems. That being said, a diagnosis can also be the root cause of an identity crisis. One learns what it means to come to terms with having an illness. As they figure out how to navigate the stigma surrounding that illness, individuals are begin to see how their experience may differ from that of someone who has known from youth that they had an illness. Spencer emphasizes the importance of having a diagnosis, but also problematizes it.
Diagnoses are complicated. As can be seen in Wang’s case they can change overtime. After one is diagnosed, are they expected to center their identity around their diagnosis? What happens to individuals who’s identities are surrounded around their diagnosis? There is greater acceptance and greater diagnosis of mental illnesses like depression, anxiety, and ADHD. Are we medicalizing behavior associated with these illnesses? If we are, then are we over medicating individuals who possibly present with these symptoms?
I found this article to be very interesting! I know my reply delved into other topics, but I was just really inspired and intrigued by the points the author brought up. My apologies for the lengthy comment!