Ethical Issues in the Care of People With Schizophrenia
Sound ethical decision making is essential to astute and compassionate clinical care. Wise practitioners readily identify and reflect on the ethical aspects of their work. They engage, often intuitively and without much fuss, in careful habits—in maintaining therapeutic boundaries, in seeking consultation from experts when caring for patients who are difficult to treat or have especially complex conditions, in safeguarding against danger in high-risk situations, and in endeavoring to understand more about mental illnesses and their expression in the lives of patients of all ages, in all places, and from all walks of life. These habits of thought and behavior are signs of professionalism and help ensure ethical rigor in clinical practice.
Psychiatry is a specialty of medicine that, by its nature, touches on big moral questions. The conditions we treat often threaten the qualities that define human beings as individual, autonomous, responsible, developing, and fulfilled. Furthermore, these conditions often are characterized by great suffering, disability, and stigma, and yet individuals with these conditions demonstrate tremendous adaptation and strength. If all work by physicians is ethically important, then our work is especially so. As a service to Focus readers, this column provides ethics commentary on topics in clinical psychiatry. It also offers clinical ethics questions and expert answers in order to sharpen readers’ decision-making skills and advance astute and compassionate clinical care in the field.
Laura Weiss Roberts, M.D., M.A.
Psychiatrists who care for people with schizophrenia spectrum disorders face specific ethical challenges in their daily work. Treating people with a disorder that can affect perception, interpretation, and the making of meaning is inherently fertile ground for ethical dilemmas. The history of prolonged, often involuntary, treatment of people with schizophrenia spectrum disorders has influenced generations of providers toward paternalistic approaches to care. While questions about consent to research and involuntary treatment remain relevant (1, 2), modern care of people with schizophrenia spectrum disorders leads to new challenges and ethical dilemmas.
In this column I use four composite cases to illustrate ethical problems that psychiatrists face in caring for people with schizophrenia spectrum disorders, followed by questions and answers to review the principles involved. I focus on ethical problems related to early detection and prevention, access to care and opportunity, the right to choose among treatment approaches, and political and social stigma.
Early Detection and Prevention
Among the most important developments in the care of people with schizophrenia spectrum disorders within the past decade are models for screening and detecting individuals in early stages and the identification of treatment interventions for slowing or preventing further progression of the disorder and maximizing treatment response. These interventions have been developed primarily in countries with centralized health care systems, so delivering these interventions in the United States has been challenging despite their potential to reduce disability and cost and improve people’s lives. In 2015, the National Institute of Mental Health project “Recovery After an Initial Schizophrenia Episode” established that comprehensive care for people with first-episode psychosis can be implemented in the U.S. health care system and can result in improved functional and clinical outcomes for patients (3). However, access to comprehensive care for people with early-stage disorders who may not meet the full criteria for schizophrenia remains limited in most regions of the country. The first case illustrates the ethical challenges of access to comprehensive preventive care.
Case 1
John is a 17-year-old high school senior. His guidance counselor referred him to see the child psychiatry fellow at his school outreach program. The clinician noted declines in school performance and social engagement, as well as disorganized thoughts and intermittent paranoia. John was able to recognize that his paranoid thoughts did not make sense. The clinician referred him for evaluation at her university’s early-psychosis and prevention program. The university outpatient practice was out of network for John’s health insurance provider, but his family was able to get approval for an evaluation by the early-psychosis team psychiatrist. The psychiatrist confirmed the presence of attenuated psychosis syndrome and recommended comprehensive care, including group and individual cognitive-behavioral therapy (CBT) for psychosis. However, the insurer declined to cover care delivered by the early-psychosis team members, citing the availability of other therapists in the region.
Questions
| 1.1. | What ethical principles would guide the psychiatrist in advocating for specialty services for this patient?
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| 1.2. | As soon as John gained access to care, his attenuated psychotic symptoms responded well to coping skills for reducing stress and to CBT techniques. After extensive psychoeducation, John’s family expressed worry about his risk for further psychotic symptoms and pressed for prescription of an antipsychotic medication to reduce the stress on their family. The psychiatrist recommended use of Omega-3 fatty acids; psychotherapy, with close monitoring for symptoms of psychosis; and targeted use of antipsychotics for any emerging symptoms. However, the evidence supporting an “optimal” level of antipsychotic medication in attenuated psychosis syndrome is thin. In light of this fact, which ethical principles form the basis for the guidelines described by the psychiatrist?
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Access to Care and Opportunity
People with schizophrenia experience many barriers to accessing the same health care, employment, and educational opportunities that are available to others. On one hand, the public mental health system in the United States is typically segregated from academic medical centers, with distinct care models in each. Public mental health systems emphasize case management and psychosocial rehabilitation services, which are typically not reimbursed and are not available in the private sector. On the other hand, private mental health care emphasizes psychiatric and psychological services that are scarce in the public mental health system. Evidence-based practices such as CBT for psychosis and cognitive remediation are largely unavailable in clinical practice. People with schizophrenia commonly face barriers to accessing comprehensive care driven by their type of insurance.
The Americans with Disabilities Act is intended to protect the right of people with psychiatric and other disorders to have equal access to opportunity in the United States. Despite this legislation, overt and covert discrimination frequently create barriers to accessing the full range of work and educational opportunities. In the next case we explore ethical issues related to workplace discrimination.
Case 2
Julie developed delusions of persecution in her mid-30s after the birth of her first child. She sought a medical workup from her primary care provider (PCP) for diffuse pains and gastrointestinal distress. She was convinced that a device had been implanted in her body that was causing her somatic symptoms and pressed the PCP for whole-body magnetic resonance imaging to find it. On referral to a psychiatrist, she confided that she was sure there was a device in her body and feared that the device would eventually cause cancer and kill her. She reported no suicidal or homicidal ideation and had no history of violence or inappropriate behavior at work. She described good functional capacity. She used to enjoy tennis but had stopped playing because of her pains. She had a supportive husband and enjoyed caring for her daughter. She experienced less distress when enjoying outings with her family.
Julie resisted viewing her problem as a psychiatric disorder and did not want to take a psychiatric medication. She noted continuous employment throughout her life and feeling better when focused on work tasks. She was actively seeking a new job and had an interview that afternoon. Her psychiatrist encouraged her to return to work and resume physical exercise as steps to reduce her distress. The following week the psychiatrist received a call from Julie’s PCP, who was completing a fitness-for-work evaluation for Julie’s new employer. The PCP felt obligated to list her psychiatric diagnosis on the form and was seeking input from the psychiatrist.
Questions
| 2.1. | The psychiatrist advised the PCP that informing the employer of her diagnosis with a delusional disorder was likely to undermine her hiring, whereas employment was likely to improve her coping with her symptoms. The psychiatrist advised the PCP not to disclose Julie’s psychiatric diagnosis to the employer. Which principle is most important in shaping the psychiatrist’s advice?
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| 2.2. | The psychiatrist recognized that Julie was struggling with referral to him because she was convinced that her problem was physical. Julie showed him Web sites supporting her belief and asked if the psychiatrist knew about the technology necessary to place a chip in someone’s body. In the interest of strengthening and preserving the therapeutic alliance, which of the following responses is most ethically sound?
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Treatment Choice
Treatment for people with schizophrenia spectrum disorders is focused on pharmacotherapy, perhaps more tightly than for other psychiatric disorders. Antipsychotic medications are also associated with considerable side-effect burden, particularly in the poorly understood arena of subjective experience. This can lead to a tug of wills between providers seeking to convince patients of the importance of taking antipsychotic medications and patients seeking alternative interventions. The range of evidence-based psychotherapy and rehabilitative treatments for people with schizophrenia has grown considerably in recent years (4). However, providers may feel uncomfortable engaging people in treatment unless they accept antipsychotic medication as a prerequisite to accessing other treatment options. The next case illustrates the ethical issues involved in treating patients who are reluctant to use antipsychotic medication.
Case 3
Karen presented for care at her local community mental health center asking for psychotherapy and medication for anxiety. Her records indicated a 25-year history of hallucinations and associated persecutory delusions, leading to multiple commitments to her regional state hospital. She had no history of substance abuse. She told the psychiatrist who evaluated her that she was a “voice hearer” and preferred not to view herself as mentally ill. She had figured out how to keep her voices in their place through building relationships with them. She was no longer interested in taking antipsychotic medications but would like help with managing anxiety that got in the way of her work as a peer support counselor.
Questions
| 3.1. | The following approach would be the most ethically sound in helping Karen at this juncture:
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| 3.2. | As they work together, the psychiatrist learns that Karen has developed sophisticated coping strategies for managing auditory hallucinations. Using these tools, she is able to function well in her job with minimal interference from the voices. However, when speaking to a group of people whom she does not know well, she often experiences anxiety that disrupts her concentration. She can usually manage anxiety using mindfulness techniques, but public speaking is becoming a larger part of her job and she would like to consider medication options. The psychiatrist educates Karen about options for treatment of anxiety stimulated by public speaking. What ethical principle is the predominant force behind a shared decision-making approach where the psychiatrist provides the patient with the information needed to support her in making informed decisions about her care?
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Political and Social Stigma
The term “schizophrenia” is more than 100 years old and is generally considered a misnomer, translating roughly to “fragmentation of the mind.” Over the course of the last century, the definition and neurobiologic understanding of the disorder have become among the most stable and advanced in psychiatry (5). However, the term has been associated with meanings of disability, institutionalization, and fear. The political debate over gun violence in the United States has recently focused on “the mentally ill,” implying that people with psychiatric disorders are dangerous. The DSM-5 process introduced the term “schizophrenia spectrum disorders” as a nod in the direction of modernizing the nomenclature but did not address the core problems with schizophrenia as the defining term.
Early screening and detection programs constantly confront the barrier of stigma as they attempt to educate young people and their families about their risks. The very process of prevention is undermined by difficulty talking about the disorder that psychiatrists seek to manage more effectively in order to improve outcomes. Patients and families experience so much fear about the label of schizophrenia and its impact on their future that they often distance themselves from prevention interventions. In the final case we will consider the ethical issues that emanate from having a highly stigmatized nomenclature that forces clinicians to dance around the elephant in the room in order to keep the patient in the room.
Case 4
Jose is a 20-year-old man who developed auditory hallucinations, paranoia, and disorganized behavior in the context of school stress and substance use. His symptoms improved quickly after a brief hospitalization including antipsychotic medication treatment. He took a medical leave from school, and his family arranged for care. His family reported that Jose had not been himself for months prior to the hospitalization. He was less social and his grades had declined.
Jose became angry when he learned that the medication he was prescribed was considered an antipsychotic. His psychiatrist attempted to educate him and his family about his episode and risks for progression to schizophrenia, as well as steps they could take to reduce that risk. Jose’s parents were adamant that the problem was drug use and refused to consider the possibility that their son could have schizophrenia.
Questions
| 4.1. | What is the most ethically sound response to the family’s distress?
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| 4.2. | What ethical principles is the psychiatrist balancing during psychoeducation for Jose and his family?
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Answers
| 1.1. | The best answer is B. The principle of beneficence, the duty to act in a way that creates the greatest positive consequences and the least negative consequences, is the primary guiding principle for the psychiatrist facing this situation. Current evidence indicates that comprehensive care for people in early stages of psychotic disorders improves functional and clinical outcomes, whereas prolonged periods of unrecognized and untreated psychosis are associated with a more treatment-resistant course of illness. Advocating for the patient to gain access to coordinated, specific services provided by a team of professionals expert in identifying early signs of psychosis, facilitating discussion of symptoms, educating the patient and family about risks, and intervening prudently and effectively is expected to improve this patient’s current quality of life and reduce the likelihood of a malignant long-term course. Social justice also compels the psychiatrist to seek the same level of access to screening and prevention for people with stigmatized psychiatric disorders as is legally mandated to be available for detection of cancers and other general medical disorders. | ||||
| 1.2. | The best answer is D. Precise data on the long-term outcomes of use of antipsychotic medication in early stages of psychosis are lacking, and existing data are mixed. Some data suggest benefits of antipsychotic treatment for brain maturation and prevention of volume loss, whereas other data suggest poorer functional outcomes associated with longer antipsychotic exposure. Evidence of effects of antipsychotics is particularly lacking prior to a diagnosable first episode of schizophrenia. Evidence of risk of side effects associated with treatment of young people with antipsychotic medication is abundant. Omega-3 fatty acids are better studied in prodromal stages but also yield mixed results. Some studies show reduction in the rate of progression to psychotic disorders, whereas others do not, but there are few risks associated with their use. There is also limited evidence on psychotherapy in prodromal stages but no indication of risks. Therefore, the principles of nonmaleficence and beneficence have led to treatment guidelines that emphasize the use of possibly helpful and low-risk interventions prior to the diagnosis of schizophreniform disorder or schizophrenia, reserving antipsychotic medications (which clearly carry greater risk) for use in treating active psychotic symptoms where their efficacy is well-documented. | ||||
| 2.1. | The correct answer is C. The minimum necessary standard, a key protection of the Health Insurance Portability and Accountability Act (HIPAA) privacy rule, is a component of confidentiality principles. Protected health information should not be used or disclosed when it is not necessary to satisfy a particular purpose or carry out a function. In this case, diagnoses that have no bearing on the functional capacity of the individual in his or her performance of job duties do not need to be disclosed. Ethically sensitive employers will avoid acquiring information about disabilities or disorders until after the hiring decision is made. The minimum necessary standard guides the psychiatrist to suggest that the psychiatric diagnosis not be revealed on a preemployment physical that is intended to screen for physical capacity. Although the PCP felt a duty to be honest on the readiness-for-work form (the principle of veracity), the physician’s primary ethical duty is to the patient and not to a potential employer. The PCP is vulnerable to contributing to employment discrimination should he or she reveal the psychiatric diagnosis. | ||||
| 2.2. | The best answer is E. This response is honest and balanced. It challenges the patient to examine the basis of her belief by indicating that the psychiatrist cannot validate the belief. It also maintains the therapeutic alliance by acknowledging the limits of the psychiatrist’s expertise. The psychiatrist avoids setting himself up as an authority on the topic of technology, but he presents himself as an authority on how to help people to understand beliefs. This response sets up future therapeutic work by indicating that the psychiatrist is willing to align with the patient in understanding her experience but also avoids collusion with the belief. | ||||
| 3.1. | The best answer is C. Because there is no indication of danger, commitment to involuntary care is not indicated and would likely harm the potential for building a therapeutic alliance. There is also no evidence that Karen lacks the capacity for medical decision making. Although educating Karen about her prior diagnosis is appropriate, Karen is acknowledging her symptoms and using another term to describe them. Prohibiting certain treatment options is paternalistic, and benzodiazepines are not clearly contraindicated in Karen’s case. Because Karen has not reported threat to harm others, violating her confidentiality by informing her employer of her treatment status would be unethical. Therefore, engaging her in treatment by focusing on the consequence of her disorder that she identifies as most relevant to her—her work functioning—demonstrates the principles of respect for persons, autonomy, and beneficence. | ||||
| 3.2. | The best answer is A. The shared decision-making approach derives from the ethical principle of autonomy. People have the right to self-governance. Informed patients make better treatment decisions. As it turns out, shared decision making is associated with greater adherence to treatment and is more gratifying to practice as well. | ||||
| 4.1. | The best answer is B. Although conversations with transitional-age individuals about the possibility of having a highly stigmatized disorder that has the potential to disrupt their education and work life are difficult, appreciation of potential risks is a prerequisite to effective prevention. Response B best describes the balance that clinicians must strike in delineating risks while identifying best possible outcomes. Transitional-age youth often have difficulty fully appreciating long-term risks of near-term behavior. Arming patients and families with complete information helps them to work together to implement good brain health behaviors. | ||||
| 4.2. | The best answer is E. Veracity guides the psychiatrist to provide information that is accurate, and compassion guides the psychiatrist to present that information in a manner that is easier for patients and family members to hear. By deemphasizing the stigmatized term “schizophrenia” but clearly describing the risk for a primary psychotic disorder, the psychiatrist aims to present information that is accurate and digestible. Offering to address questions during each meeting over time creates opportunities to further gauge and enhance understanding. | ||||
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