Symposium on Mental Health — February 2015
Tex Med. 2015;111(2):66-70.
By Sarah E. Baker, MD, Rachel M. Pearson, BA, and Jason E. Glenn, PhD
The higher mortality rates experienced by people with mental illness largely result not from suicide or mental illness per se, but from poor overall health.1 As we will explain, researchers trace this poor health largely to the effects of poverty and also to the inadequate — and often substandard — primary care people with mental illness receive. Given that the overall mortality rate of people with mental illness is twice the national average, primary care is vital to these vulnerable patients.1 Yet many primary care physicians struggle to connect with their patients who have mental illness. In the absence of strong clinical relationships, physicians may inadvertently stigmatize people with mental illness.
This paper explores the roots — and health effects — of physician bias in caring for patients with mental illness. It offers a study of a case that did not end well and was likely influenced by stigma. Best care for the challenging patient described here would require that physicians understand not only stigma and its health effects but also the way individual patients and their lives are influenced by overlapping injustice. To improve primary care for people with mental illness, we recommend a two-pronged approach that includes familiarity with physician stigma and overlapping injustice and the clinical application of moral imagination as it is cultivated through close consideration of the narratives of patients vulnerable to stigma.
M.P. is a 46-year-old African-American woman with metabolic syndrome, poorly controlled type 2 diabetes mellitus complicated by retinopathy and nephropathy, and schizophrenia. The patient sought care at a free primary care clinic associated with an academic medical center. At her initial appointment, M.P. discussed her psychiatric history, which included an assault on a neighbor after hearing voices telling her to hurt the neighbor. She was incarcerated after the assault and had recently been released. Over the next two years, M.P. went to clinic appointments in between periodic hospitalizations for her diabetes and schizophrenia, as well as periods when she was lost to follow-up. During the two years she was a patient in the clinic, she presented numerous times stating she was suicidal but left before arrangements could be made for her to be further evaluated by psychiatry. This was very distressing to the clinic's health professionals, particularly to the students involved in her care. After these episodes, she would typically be lost to follow-up for weeks.
At her last visit, she again stated she was suicidal and voiced threats against a family member who health professionals believed was in the clinic. Physicians, fearing that she might endanger students and that her medical and psychiatric needs overwhelmed the capacity of the student-run clinic, told her that night she could no longer be seen at the clinic. She was referred to the only other free care available in this community: a once-weekly mobile clinic that does not offer psychiatric care.
Without access either to comprehensive primary care or to psychiatric care, her health and quality of life undoubtedly declined.
Inadvertent Stigmatization in Medical Care
In its earliest documented use in 1596, the world stigma referred to "a mark made upon the skin by branding with a hot iron … as a token of infamy or subjection."2 In the 17th century, the word would become associated with Christian sainthood and only in the 19th century would it begin to refer to bodily signs of disease. The sort of stigma we are concerned with in fact harkens back to that earliest definition. Whereas "stigmata of disease" arise from organic processes in the body, stigmatization is something we do to each other. Indeed, physicians may participate in the stigmatization of patients with mental illness.
Understandings of stigma vary in the medical literature.3,4 The neat definition of Roeloffs et al — "Stigma is negative stereotyping of individuals with specific characteristics that set them apart" — offers a place to begin.4 Corrigan argues that stigma is a complex process with four components: cues, stereotypes, prejudice, and discrimination.5 Cues include "psychiatric symptoms, social-skills deficits, physical appearance, and labels," which lead people to infer that a person has mental illness. Once that inference is made, people may rely on stereotypes, e.g., that people with mental illness are dangerous. Prejudice is the active, overt endorsement of negative stereotypes. Discrimination is the harmful social outcome of those processes.
Researchers such as Dovidio have emphasized that these processes may be both extremely subtle and unintended, yet they have significant negative effects on clinical relationships and health outcomes. A 2002 report by the Institute of Medicine found, for example, biased care delivered to African-Americans by physicians contributes significantly to the overall increased mortality rate of African-Americans — even when controlling for access-level factors and socioeconomic status.6
Many researchers investigating the role of stigma in mental health care emphasize the importance of perceived stigma, which is a sufferer's own belief that others will discriminate against him or her based on his or her diagnosis or use of mental health services.7 Perceived stigma is known to deter people from seeking care for their mental illnesses.7
Not only do people with mental illness often defer seeking care for fear of stigmatization, but data suggest they receive worse care overall.8 These data are troubling in the context of the twice-normal rate of all-cause mortality experienced by the mentally ill.1 In primary care clinics, physicians who respond to the discomfort they feel in caring for mentally ill patients by stigmatizing them — rather than slowing down and examining their internal response to the patient — may rush through encounters, failing to take the time to provide the most appropriate care. In worst-case scenarios (as described in the vignette that opens this paper), stigma can even contribute to people with mental illness being denied primary care.
Physicians' and patients' narratives, such as the vignette of M.P., show how complex stigmatization can be. The physicians caring for M.P., for example, acted in part out of important concerns such as a duty to protect medical students from a patient perceived as threatening. Furthermore, the health systems context of this encounter — an uninsured patient seeking care in a community with few mental health resources — heightens the consequences of stigmatization. Because the decisions we make as health professionals occur in a complex world, with particular patients, health care practitioners, and health care systems, we must have a dynamic response to potential stigmatization.
In cultivating a dynamic response, it is useful to distinguish between implicit and explicit bias.9 Explicit bias is much like prejudice as Corrigan defines it: the explicit endorsement of negative attitudes and stereotypes about social out-groups. Implicit bias results from "unintentional activation, often outside personal awareness" of negative attitudes.9
Implicit bias is a useful construct for examining the stigmatization of patients with mental illness in primary care settings. While some doctors may be explicitly biased against patients with mental illness, we suspect most are not. In accordance with our professional oaths, we want to provide the best care to all patients. For us, the challenge is to understand how stigma can influence the care of well-intentioned, humane doctors and what we can do to prevent stigma from affecting the care we provide.
A first step is to understand the data presented here on the health effects of stigmatization for patients with mental illness. Next, we will present mental illness as a condition that predisposes people to the experience of overlapping injustice.
Overlapping Injustice and Care of People With Mental Illness
Our patient, M.P., is vulnerable to stigmatization not only because of her mental illness, but also because of her race, class, gender, body type, and history of incarceration. The experience of being an African-American woman conveys a social experience that is distinct from that of either race or gender in isolation.10,11 Physicians often associate negative stereotypes with poverty, such as perceiving uninsured patients to be worse communicators and less compliant, which results in measurable negative changes in physician communication style.12 Many physicians struggle to care for their obese patients, perceiving that obesity is a patient's "fault." The fact that obesity correlates strongly with poverty belies this perception, and the chronic stress of living in poverty has been shown to contribute to development of the metabolic disorder.13 Furthermore, patients who have been incarcerated have been shown to suffer health-endangering stigmatization by health care professionals.14
Our patient is extremely vulnerable to receiving the poor-quality health care associated with being in a stigmatized body. The element of social positioning we are explicitly concerned with is her mental illness, but we must also explore how these multiple statuses contribute to her vulnerability. While studies of individual categories (e.g., race, class, and mental health status) can isolate and quantify the health effects of a single element of stigma, they may fail to appreciate how overlapping injustice — the lived experience and cumulative effects of being in a multiply stigmatized body — affects patients. In fact, the experience of most patients with mental illness can only be understood through the lens of overlapping injustice. Poor, homeless, and incarcerated people are more likely than others to suffer from mental illness. Each of these statuses confers not only injustice but also stigmatization.
An abundance of data support our contention that not only M.P., but also people with mental illness in general, experience overlapping injustice. For example, mental illness is more prevalent among the poor.15 Researchers have shown those with mental illness experience "downward drift" in socioeconomic status; however, the chronic stress of living in poverty can also trigger and exacerbate mental illness.15,16 Those with mental illness are more likely to be homeless, and homelessness can contribute to the cues — appearance, smell, grooming — that may incite stigma.17 Furthermore, people with mental illness are significantly more likely than others to be incarcerated. This trend has accelerated as public support for mental health services in this country has eroded, leading to deinstitutionalization in mental health facilities and the emergence of jails and prisons as de facto mental health care providers.18,19 Although the data cited here are not comprehensive, we hope they begin to show how the lived experience of stigma cannot be isolated to a single factor for mentally ill people but must often be understood in the context of overlapping injustice.
A medical humanities approach that considers lived narratives can help us explore mental illness in the context of overlapping injustice. Neither overlapping injustice nor the narrative complexity of individual health encounters can exactly be quantified; accordingly, our approach uses what Carson and Cole call the "moral imagination."20 As Carson states, "Imagination as a power at once intelligent, sensitive and constructive is importantly related to the power of healing."20 He argues that narratives, particularly poetry, stories, and memoir, can aid clinicians who seek to cultivate the ability to constructively anticipate the moral and emotional needs of their patients. We agree. Literature and medicine instruction, including reading and discussion of memoirs written by people with mental illness, should be required in medical school and residency curriculum.
Best patient care requires not only cultivating moral imagination but also practicing with it. This is particularly true for patients like M.P. who have been denied care or lost to follow-up. Her full narrative is lost to medical knowledge and can only be accessed through the moral imagination.
In this following section, we will extend our vignette of M.P., demonstrating how exercising the moral imagination may help physicians understand overlapping injustice and protect us from perpetuating stigma. In turn, this could protect patients from the quantifiable declines in the quality of care that result from physician stigmatization.21
Though we were not able to contact M.P. so she could tell her story, one of the authors of this paper was involved in her care and wrote the following section. We hope later researchers will work with patients to share these narratives collaboratively.
Exercising the Moral Imagination: M.P. and Overlapping Injustice
M.P. was kind when health professionals took the time to hear her stories, though she would often get frustrated if she felt they misunderstood her or if she felt she was not receiving adequate care.
The frustrations she voiced over the years were often ignored by health professionals, possibly because they felt they had inadequate resources to address her complaints. She also voiced frustration over how she continued to hear voices, despite being treated on and off for years. She often remarked she did not want to hurt anyone and felt distressed that she was unable to control her emotions.
Receiving care at our clinic might have been a difficult experience for her for many reasons. She could not make multiple physician appointments each month because of transportation problems and responsibilities at home. This would make seeing primary care physicians and specialists nearly impossible, despite the fact that her metabolic and psychiatric disorders needed close follow-up.
Due to a lack of community resources, it was difficult for her to see a psychiatrist consistently. She did not like being hospitalized because it meant being separated from her family members, who, despite their often-tense relationship with her, were her main source of support. Furthermore, finding a job was difficult because of her chronic diseases and prior conviction. Poverty and the lack of a significant social safety net may have left her unable to afford her medications or make lifestyle changes.
Furthermore, M.P. might feel frustrated at larger structural factors, such as racism, that contributed to her poverty and incarceration. Many African-American patients are aware of the disproportionate health care injustice experienced by people of color, as well as the history of medical research abuses of African-Americans. Awareness of this history, as well as prior bad experiences with physicians, can complicate clinical encounters, particularly when clinicians do not ask about or address these issues.
Awareness of the disproportionate incarceration of African-Americans, the increased police presence in African-American neighborhoods, and the racial bias African-Americans regularly experience provides some context for M.P.'s arrest history. A compassionate interpretation of her supposed "dangerousness" must take into account the fact that police (like physicians) may associate dangerousness with mental illness and being African-American. Sound assessments of dangerousness must take potential bias into account.
After being asked to leave the clinic, M.P. may well have felt abandoned and hurt. Her health care undoubtedly suffered.
The health care professionals felt distressed over the quality of care they were able to provide to M.P. She often did not receive the standard of care for her chronic diseases due to the limited resources available to unfunded patients in the community. She ultimately developed permanent complications, including peripheral neuropathy, heart problems, and diabetic retinopathy.
Coordinating her care was difficult for the clinic. Furthermore, health professionals felt rushed in encounters, and this patient's multitude of problems led to feelings of helplessness in the practitioners. It often felt impossible to provide the level of care needed (and desired) by this patient.
Her threats of suicide worried the students and physicians. Additionally, this patient often appeared disheveled and would get angry with health professionals and raise her voice. The practitioners, in turn, also felt angry and sometimes afraid, leading them to have less patience and a desire to "call the mental health authority" on M.P. This would at least assure them she was getting treatment.
After denying further care to M.P., the health professionals felt guilty yet also relieved they would no longer have to see her in the clinic and observe her suffering.
Given the considerable discomfort felt by M.P.'s physicians, it is worth wondering to what extent their desire to be relieved of the emotional burden of caring for a challenging patient influenced assessment of dangerousness. To what extent were the judgments made about her — particularly the assessment of dangerousness — influenced by stigma? The devastating consequences of denying care to such a vulnerable patient impel us to reckon with these questions.
To begin to imagine a stigmatized patient as a member of an in-group rather than a stigmatized out-group, it could be helpful to actively consider what interests she and the health professionals share in common.21 Furthermore, simply slowing down and asking more questions, rather than trying to rush out of an emotionally challenging encounter, may have significant clinical benefits.
We could imagine another ending to this story: a scenario in which the health professionals' negative emotions were discussed with the patient, and a commitment was made with the patient to continue seeing her as long as she remained safe within the clinic. If student safety was a legitimate concern, her care could have been provided without students present. All practitioners involved in her care might have benefited from clinician debriefing sessions to discuss the challenges and discomforts they experienced.
Like many mentally ill patients who seek primary care, our patient, M.P., did not receive the excellent care we would wish to provide. Nor did she experience the beneficial health outcomes of good care. In imagining a better outcome for her — and advocating for better health care experiences for all patients with mental illness — we believe it is important to cultivate and use our moral imaginations. Providing the best possible care for this patient would require a commitment on the health professionals' side to examine their own biases, to try to deeply imagine the patient's social situation, and to address their own discomfort in providing care to members of stigmatized populations.
Overlapping injustice as it is lived by people with mental illness cannot fully be quantified. Accordingly, we encourage providers to cultivate and use their moral imaginations by tending to patient narrative in written and spoken form. We were not able to share M.P.'s narrative in her voice due to our failures as caregivers to provide a supportive environment for her within the clinic. Using moral imagination would have better enabled us to envision the world in which M.P. lived, allowing us to work together with her to find ways for her to continue receiving care with us. A robust moral imagination may be particularly important for envisioning better care — and, indeed, better health systems — for the most stigmatized patients, whose bodies, lives, and narratives are often lost to medical knowledge.
Sarah E. Baker MD, is a first-year resident in psychiatry at The University of Texas Southwestern Medical Center at Dallas.
Rachel M. Pearson, BA, is a sixth-year MD and PhD student at The University of Texas Medical Branch (UTMB) at Galveston and the Institute for the Medical Humanities.
Jason E. Glenn, PhD, is a historian of science and medicine and an associate professor at the Institute for the Medical Humanities at UTMB.
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You may read the Symposium on Mental Health in its entirety and earn 2 AMA PRA Category 1 Credits™ (2 credits of education in medical ethics and/or professional responsibility) at www.texmed.org/mentalhealthsymposium.
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