Ethics in Mental Health Care: A Public Health Perspective
Abstract and Keywords
This chapter explores ethical issues in mental health policy from a public health perspective, with a focus on the United States. Ethical discourse about mental health treatment has typically focused on paradigmatic concepts of individual autonomy, competence, paternalism, and appropriate justifications for overriding individual decision-making and restricting individual liberty. This chapter focuses on overarching ethical challenges in mental health policy at the population level—enhancing access of persons with mental illness to preventive services and community supports, and facilitating their successful community integration. Achieving these goals can reduce the need for coercion and ameliorate the social burden and stigma of mental illness. Shifting ethical discourse to the population level is an important step in the continuing transformation of mental health care and policy in the twenty-first century.
(p. 205) Introduction
Mental illness is a broad term encompassing a wide range of problems, and it requires an open-ended definition. 1 Mental illness is “generally characterized by some combination of abnormal thoughts, emotions, behavior and relationships with others” (WHO, 2013, 38). More specifically,
A mental disorder is a syndrome characterized by clinically significant disturbance in an individual’s cognition, emotion regulation, or behavior that reflects a dysfunction in the psychological, biological, or developmental processes underlying mental functioning. Mental disorders are usually associated with significant distress or disability in social, occupational, or other important activities.
(APA, 2013, 20)
In contrast, mental health is “a state of well-being in which an individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and is able to make a contribution to his or her community” (WHO, 2013, 38). Mental health is “an essential element” of overall health, “a state of complete physical, mental and social well-being” (WHO, 2013, 43). Importantly, mental illness (and health) implicate a person’s functioning, not merely the presence or absence of symptoms.
Epidemiology of Mental Illness
Incidence and burden estimates for mental illness depend upon definitional, demographic, and geographic factors. Nonetheless, it is widely accepted that mental illness (p. 206) is a pervasive health condition around the globe. For example, 18 percent of US adults experienced a diagnosable mental disorder in 2014, with a little over 4 percent experiencing a serious mental illness (i.e., an illness that results “in serious functional impairment, which substantially interferes with or limits one or more major life activities”; NIMH, 2017). Similar estimates have been made elsewhere in the world (Kessler et al., 2009). Around the world, mental and substance use disorders were the leading cause of years lived with disability in 2010 (Whiteford et al., 2013), and an estimated $16 trillion will be lost between 2011 and 2030 due to the direct costs of care and lost income as a result of disability or mortality attributable to mental disorder (Bloom et al., 2011). Complicating the matter, mental illnesses tend to accrue high rates of comorbidity with other diseases, including cardiovascular disease, diabetes, and substance use disorders. As a result, mental illness is associated with increased mortality: a recent meta-analysis found the median reduction in life expectancy was 10.1 years, with a range from 1.4 to 32 years (Walker, McGee, and Druss, 2015).
The costs of mental illness are further amplified by lack of access to treatment. The WHO reports that 76 to 85 percent of people with serious mental illness in low-income and middle-income countries receive no treatment, and between 35 and 50 percent of people in high-income countries do not receive care (WHO, 2013). In the United States, the public mental health system, which may be a resource for the uninsured, is strained because it provides approximately two-thirds of all mental health care. Despite a significant decline in the number of uninsured persons in recent years attributable to federal legislation, mental health care is typically underinsured, leading to insufficient and/or low-quality care (Barry, Goldman, and Huskamp, 2016; Bartlett and Manderscheid, 2016; Goplerud, 2013).
Review of the determinants of mental health reveals a Gordian knot, as mental illness tends to perpetuate many of the social determinants that can give rise to or exacerbate mental illness. Disparities in housing, employment, and criminal justice involvement, for example, are closely linked with mental illness because of the ways that mental illness can impact functioning (WHO, 2014). Disruption in mood, thinking, and/or relationships can destabilize employment and/or housing, yet without stable housing and income, mental illness is exacerbated. Disturbing behavior related to mental illness may attract the attention of law enforcement and begin a process of cycling in and out of the criminal justice system, which is highly disruptive to continuity of care and often worsens symptoms. Even seemingly less-related determinants can have large impacts: elements of the built environment (e.g., public transportation) can be critical barriers to obtaining consistent care, for example.
One social determinant that must be singled out is stigma. Cultural and social norms around the world have long marginalized people with mental illness, eroded their rights, and stymied development of supportive health care practices and policies. Despite the gains of the last few decades, stigma remains a prevalent problem.
(p. 207) In short, many social disparities are risk factors for mental illness, and mental illness often widens social disparities. It is important to recognize these relationships because they underscore the complex nature of mental illness and mental health care and make clear that public health efforts are needed across multiple levels and sectors—not just at the individual level in the health care sector (WHO, 2014).
A Brief History of Mental Health Policy in the United States
During the American colonial era, people with mental illness2 in America were generally considered the responsibility of their family and friends (Slobogin et al., 2013). During the Enlightenment period in the 1700s, an era of therapeutic optimism emerged, characterized by a belief that scientific study would reveal the causes of mental illness and would yield a cure. The United States established its first state hospital dedicated to the provision of mental health care in 1773, and the number of psychiatric hospitals in Europe and America increased dramatically during the 1800s (Eghigian, 2010).
Emergence of the Psychiatric Hospital as the Model of Care
Reliance on institutional care grew during the nineteenth century in the United States and elsewhere in the Western world, undergirded by civil commitment laws authorizing involuntary confinement of mentally ill persons. Legal authority in the United States was firmly grounded in the state’s “police power” to protect public health and safety and in its obligation (as “parens patriae”) to protect citizens unable to protect themselves. Although late nineteenth-century reformers complained about poor conditions in the institutions and questioned the effectiveness of institutional treatment, the medically grounded institutional model survived and was broadened by a new generation of paternalistic commitment statutes in the mid-twentieth century, which sought to make commitment easier due to optimism in new advances in treatment (Slobogin et al., 2013; Boldt, 2014).
During the 1960s, the modern era of mental health policy began to emerge, marked by the downsizing and closing of state psychiatric hospitals. Deinstitutionalization was driven by several factors, including the high costs of institutional care, critiques of institutional care as oppressive and dehumanizing, nascent sensitivity to the civil rights of persons with mental illness, allegations that psychiatry was used as a form of social control, and a renewed optimism about the ameliorative effects of new pharmacotherapies and community-based mental health services.
(p. 208) Broadly speaking, the civil rights movement of the 1960s and expansion of federal funding for community mental health services propelled the public mental health system in the United States toward a community-based model (Petrila, 2001). Litigation led to landmark decisions vindicating rights of persons with mental illness, including due process in civil commitment proceedings, freedom from coerced treatment in the absence of danger to self or others (e.g., O’Connor v. Donaldson, 422 U.S. 563 ), and a right to treatment upon commitment. Federal policies, including Medicaid and Social Security expansion, aimed to increase availability of services in the community as alternatives to institutionalization (Petrila, 2001). As a result, the census of public mental health facilities decreased dramatically: in 1956 the average daily census was 551,390 out of 169 million Americans, but by 2004 the average daily census was 55,000 out of 275 million Americans (Slobogin et al., 2013).
Individuals’ Rights versus Treatment Needs
Legal and ethical discourse in mental health policy during the period of deinstitutionalization largely focused on the tension between benevolence and respect for patient autonomy, and on the meaning and normative significance of decisional capacity (Appelbaum, 1994). Physicians traditionally acted to benefit their patients based on their own judgments about patients’ needs (both for information and for treatment), but respect for patient autonomy demands protection of patients’ rights to receive full information and to make their own judgments about what treatment they receive. In the legal context, this theme translated into debates, which continue into the present day, about the justifications for coercive confinement/treatment and the scope of the individual’s right to refuse psychiatric treatment.
On one side, courts have insisted on narrow and specific criteria to justify involuntary hospitalization or forcible medication of involuntarily hospitalized patients. For example, courts may require that there be a substantial likelihood of harm to self or others as a result of the mental illness, the likelihood of which must be demonstrated by “clear and convincing” evidence in most jurisdictions. On the other side, critics of the “right to refuse” treatment have argued that the commitment laws should focus on the “needs” (i.e., treatment) of persons with mental illness and have bemoaned the tragic consequences of allowing suicidal or helpless persons with mental illness to “die with their rights on” (i.e., respecting autonomy to the point of allowing harm to occur; Treffert, 1973).
A current iteration of this ongoing tension in mental health policy focuses on the legitimacy of “mandated outpatient treatment” (MOT).3 MOT is the provision of treatment in an outpatient setting, but under the constraint of a court order. A person who fails to meet requirements of an MOT plan may be taken into custody for evaluation or treatment. MOT is an appealing option to many because it serves benevolent aims of providing treatment to those in need of it through a less intrusive method than institutional confinement. Opponents, however, highlight the increased paternalism of extending involuntary treatment into community settings and widening the net of social control.
(p. 209) Ethical Principles for Contemporary Mental Health Policy
Deinstitutionalization has been the distinguishing feature of twentieth-century mental health policy in the United States. However, shifting the locus of mental health services from institutions to communities amounts simply to ending an old policy rather than creating a new one. First, there has been a collective failure to establish the community-based services and supports that are needed to enable persons with mental illness to function safely and successfully in the community. Second, reducing unwarranted coercion, by itself, provides a thin and inadequate ethical foundation for the transformative mental health policies needed to vindicate both the rights and needs of persons with mental illness and to assure the mental health and well-being of the population. We next highlight several ethically salient strands of contemporary mental health policy in the United States (which are echoed in international human rights documents and may inform global policy as well [see UN, 2006]).
One policy strand emphasizes inclusion and integration. The Americans with Disabilities Act (42 US Code §§ 12101–12213 ), a US civil rights law prohibiting disability discrimination, has become a charter for freedom for persons with mental illness. Its passage signaled the overarching importance of facilitating inclusion and integration of persons with disabilities, including mental disabilities, into the community, and pressed state and local governments to establish services and supports in the community to enable persons with mental disabilities to achieve equal citizenship.
Another policy strand reflects empowerment and recovery. As used in the behavioral health field, “recovery” describes an ongoing process of gaining greater control over one’s own life, partly through gaining control over symptoms, but also through attending to needs in other domains, such as work and relationships. The recovery model emerged from the psychiatric rehabilitation movement, which expanded the view of mental health treatment to encompass consumers’4 psychosocial needs, and the mental health consumer movement, which emphasized the importance of basic human rights and decried social discrimination and stigma (Pouncey and Lukens, 2010). Although it is difficult to define recovery concretely, several key concepts include autonomy, empowerment, respect, responsibility, and human rights (Davidson et al., 2005; Jacobson and Greenley, 2001).
Yet another salient policy strand concerns the emergence of personal responsibility for managing chronic health conditions. A corollary of empowerment is responsibility. Advances in treatment and the emergence of recovery-oriented frameworks have highlighted the nature of mental illness as a chronic health condition because they have increased the ability to attain and maintain wellness. Thus, like persons with other chronic conditions, such as diabetes, persons with a mental illness have the opportunity to view their treatment with a preventive and maintenance orientation and to interact with their families and clinicians accordingly. This counteracts the (p. 210) tendency to see a person with mental illness as a crisis waiting to happen that must be controlled by coercive means.
In this context, it is important to assist persons with mental illness to take control of their treatment; for example, an advance directive can be a tool of empowerment in mental health treatment (Elbogen et al., 2007; Scheyett et al. 2007), and facilitating the use of advance directives as part of routine care of persons with serious mental illness should be an explicit goal of contemporary mental health policy (Kemp, Zelle, and Bonnie, 2015; Zelle, Kemp, and Bonnie, 2015). The emphasis on taking responsibility for managing one’s own condition also has the potential effect of eroding stigma, because it highlights the similarities (rather than the differences) between mental illness and other chronic health conditions. Mental illnesses (and neurological conditions, such as epilepsy) differ from diabetes because they affect the brain, but they are similar because they are rooted etiologically in the genetic predispositions, environmental exposures, and gene-environment interactions that account for all health conditions. Indeed, advances in understanding of the neurobiological underpinnings of mental illnesses help to normalize them as health problems.
Three Ethical Challenges
This final part of the chapter focuses the population-level ethical discourse on three ethical issues related to persons with mental illness: enhancing access to and utilization of services, preventing harm, and respecting the interests of families.
Justice, Access, and Utilization of Services and Supports
In the United States, as well as many other countries, many people with mental illness have no meaningful access to mental health care at all or are severely underserved. For example, in 2015, 34.7 percent of adults with serious mental illness did not receive any treatment (CBHSQ, 2016). The unfinished business of deinstitutionalization is the creation of the mental health services and supports that are needed to enable persons with mental illness to function successfully in the communities where they live. The creation of services and supports implicates the general ethical discussions of justice in health care and the ongoing debate regarding the best path to universal access to health care in the United States. This section focuses on two distinctive features of that debate regarding mental health care: lack of access (or parity in access) to health insurance (or free services), and the role of stigma in deterring utilization of available services.
Historically, mental health services in the United States were not covered by health insurance or were severely underinsured. Medicaid, which is government-funded, covered some services for the poor, but most medically indigent people were not eligible for Medicaid. The result was that states and localities provided a safety net of emergency (p. 211) services for persons experiencing mental health crises. As recently as 2011, mental health care was financially inaccessible for 51 percent of the population (SAMHSA, 2013). The Patient Protection and Affordable Care Act (Pub. L. No. 111-148, 124 Stat. 119 ) and the Mental Health Parity and Addiction Equity Act (26 U.S.C. § 9812, 29 U.S.C. § 1185a, 42 U.S.C. § 300gg-5 ) significantly increased access to covered mental health services for many people: one estimate suggested that Medicaid expansion would increase mental health and substance use coverage to approximately 16 million people by 2019 (Kessler, 2014; Sipe et al., 2015). However, as of 2014, 1.9 million uninsured people with a mental illness or substance use disorder lived in states that had not adopted Medicaid expansion under the ACA (HHS, 2016) and were entirely dependent on care from a severely underfinanced public mental health services system.
What is more, the gaps in mental health services are accompanied by gaps in subsidized and supportive housing and other community supports. These gaps in services and community supports are widely believed to be at least partially responsible for the increasing number of arrests and detentions of persons with mental illness in local jails, as well as the steady stream of police shootings of persons with mental illness (Kennedy-Hendricks et al., 2016; Steadman et al., 2009; Wilper et al., 2009). Whatever one’s position on the demands of justice in access to health care or the underlying causes of “criminalization” of people with mental illness, the substantial number of people with mental illness who are incarcerated presents a significant public health challenge for many communities. Only public action can ameliorate this problem (see, e.g., Harki, 2016; Kennedy-Hendricks et al., 2016; Kindy and Elliott, 2015; Morse, 2016; Swanson, 2016).
The insufficiency of public mental health services is not due solely to lack of insurance and lack of public funding for direct care. Even when services are accessible, persons with mental illness are often deterred from accessing them (or continuing to engage with them) due to social stigma, which has a pervasive history across cultures and dating back to ancient times (Hill et al., 2016; Nadeem et al., 2007; SAMHSA, 2013; VanSickle et al., 2016). Most studies have found positive signs in destigmatizing mental illness and in raising public understanding, including worldwide adoption of Mental Health First Aid training (see also, e.g., Crisanti et al., 2016; Kenny and Bizumic, 2016). The growing movement toward the integration of behavioral health care into primary (medical) health care in the United States also should help counter stigma and help people understand that mental health is a component of overall health. A cross-systems approach that connects and coordinates mental health services across health, justice, education, and social service agencies is needed.
Another avenue to reducing the current ethical tension around access to mental health care is for public mental health to ensure that people with mental illness have a voice in policymaking. The widespread adoption of the recovery model is laudable in part because it does just that. For example, peer support specialists (individuals who identify as having a mental illness and commit themselves as volunteers or employees of mental health care providers) effectuate procedural justice by bringing the affected people directly into the process of shaping public mental health services. Here, procedural justice refers to the public health moral consideration of ensuring public participation in (p. 212) practice and policy decisions such that they feel an ownership of policies, rather than the conceptualization of procedural justice as people’s assessment of the fairness of a legal decision-making process, as described by Tom R. Tyler (2003). The recovery model’s adoption has also led to a definition of quality of life by people with mental illness, rather than by a paternalistic society—people do not seek to be “cured” and made “normal,” but rather to achieve a level of wellness that allows them to take meaningful control over their lives. Continued movement in these directions may contribute a great deal to empowering people with mental illness to utilize health care services.
As noted earlier, the ethics of coercion has been a preoccupying concern in mental health law. The question to be addressed here is how the lens of public health ethics sheds new light on the ethics of coercion in mental health care. Traditionally, each instance of involuntary treatment is considered to affect only that case: Did the intervention prevent suffering by, or injury to, the person (e.g., suicide) or someone else (e.g., assault), or did the failure to intervene result in an otherwise avoidable suffering or injury? To evaluate the justification for coercion in the individual case, the balance is struck at the clinical level, taking the patient’s decisional capacity, the risk of harm, and the availability and effects of alternative interventions into account. But how does one evaluate involuntary treatment from a population perspective?
Ethical analysis of civil commitment (and other preventive or coercive interventions, such as warning a potential victim or taking other precautionary action) can be analogized to traditional public health crisis management. Treatment of persons with dangerous contagious diseases, such as tuberculosis, includes restraint of a person for treatment, whether through isolation (i.e., separation from people without the disease), directly observed therapy (i.e., provision of treatment by a health professional who observes the patient take the medication), or aggressive community treatment (e.g., intensive preventive treatment of those without the disease). Interventions like these implicate justificatory conditions,5 such as necessity (i.e., the strategy is necessary to achieve the public health goal) and least infringement (i.e., the strategy is the least restrictive and least intrusive possible), at the level of the individual, but the benefits of the interventions are assessed by measuring the incidence of disease in the population (e.g., the number of new infections prevented by the intervention). In comparison, restricting the liberty of a person with mental illness is justified because of the need to reduce a specific threat of harm to the patient or someone else at the time of the intervention. The population benefits are obtained by aggregating the benefits of each individual intervention.
The legal changes in the 1970s that were noted earlier included case law that narrowed the parameters for civil commitment. Courts and subsequent legislation made clear that a person’s liberty cannot be infringed merely because treatment may be beneficial; people have a right to refuse treatment, no matter how “unwise” that decision may be, (p. 213) unless a person poses a serious danger to themselves or others. The justification for coercion is measured one case at a time, and the courts generally insist on proof of a serious and immediate threat.
From a population perspective, what were the effects of narrowing these criteria? Were commitments reduced? With what effect on individuals and on the population? Not surprisingly, there have been no controlled trials on the application of civil commitment criteria, and the few before/after studies on this question tend to show that narrowing or broadening the criteria has had relatively little effect compared to other influences on hospitalization and commitment practices, such as reducing the number of beds or the level of insurance reimbursement. Recent controlled trials of mandatory outpatient treatment, however, have suggested that being under an MOT order for at least six months increased treatment engagement and reduced violent behavior, as compared with receiving outpatient services without the order (e.g., Phelan et al., 2010; Swartz et al., 2010). Results of other studies have been mixed, though, so it is not yet clear whether a strong balance of benefits is accrued and whether infringement of autonomy is offset by claims of effectiveness. Another interesting question is whether disqualifying persons who have been involuntarily committed from purchasing or carrying a firearm reduces suicides or firearm-related injuries and deaths to other victims. Systematic research on these long overlooked questions is just emerging (e.g., Swanson et al., 2015), posing the ethical challenge of weighing the population benefits of categorical restrictions against the principle of individualized decision-making that has generally characterized mental health law and ethics.
Privacy and Relational Autonomy
Advances in treatment may allow for activities at the secondary prevention level, but they also implicate autonomy interests. For example, psychotic symptoms (e.g., hallucinations and delusions) often first present in late adolescence or early adulthood, and recent clinical research has underscored the importance of intervening as early as possible with emergent psychotic disorders. Although proactive family involvement in such programs may be viewed by consumers as overly paternalistic and intrusive, the programs may be supported by the theory of relational autonomy, which posits that an individual’s autonomy is informed by and even promoted through the person’s relationships with others because her sense of self and what is moral and ethical is informed by these relationships. Thus, a program that increases family involvement may ultimately increase a person’s autonomy rather than infringe it.
Unrelated to such programs, proposals to increase access by families to otherwise private health information have been advanced, with proponents arguing that allowing the person’s support system to be engaged in treatment can avoid a worsening of symptoms and result in benefits to the community as well as the individual (Castro, 2015; Johnston, 2008). Critics, however, argue that such policies weight population (including family) interests over the individual’s rights and may further stigmatize mental illness (e.g., Mathis, 2016).
(p. 214) Considering earlier sections of this chapter, it is worth asking whether improved access and decreased stigma would encourage a young person in the early stages of mental illness to engage in treatment and share information, and thus abate the tension between privacy and well-being.
A rich discourse on the ethics of mental health policy and law has emerged since the beginning of deinstitutionalization. That discourse has focused almost entirely on balancing the benefits to the individual and society achieved by involuntary treatment and unwanted disclosure of information against the affront to individual liberty and privacy that they entail. In this chapter, we have shifted the focus of ethical discourse to the population level and to the values that ought to be sought in a system for delivering mental health services. The key values are enhancing access, promoting recovery and empowerment, nurturing community integration and equality of citizenship, and encouraging personal responsibility for managing one’s own chronic health condition. Systems and policies that promote these values can be expected to reduce mortality and morbidity in and the accompanying social burden of mental illness.
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(1.) In the absence of a specific reference, such as the US National Survey on Drug Use and Health (NSDUH), or unless a specific technical meaning is intended, this chapter uses the terms mental disorder and mental illness interchangeably.
(2.) Throughout this chapter we utilize “person-first language” in which the individual is recognized as a person before specifying that he or she happens to have a mental illness. This language-sensitive approach is widely applied in the behavioral health field and is not just “politically correct” but is actually reflective of an enhanced emphasis on autonomy and empowerment, because it does not reduce a person to a mere diagnostic label.
(3.) Many statutes refer to “assisted outpatient treatment,” but we use the term “mandatory outpatient treatment” because it directly expresses the coercive element of such policies. Another common term is “outpatient commitment.”
(4.) Indeed, the preference for terms other than “patient” to identify those receiving treatment is one product of increased respect for autonomy and empowerment of those receiving treatment: many view the term “patient” to embody the traditional “doctor knows best” power differential, and prefer terms that instead reflect the sense of a person’s engagement with treatment (e.g., a mental health treatment “consumer”).
(5.) Justificatory conditions are considerations that rebut the presumption in favor of individual rights concerns such as liberty, privacy, and confidentiality. When considering the ethics of public health situations, individual rights are typically given priority over government considerations; however, a public health action that infringes on those rights could be justified if certain considerations are deemed to outweigh the importance of individual rights (Childress and Gaare Bernheim, 2015).