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Raymond Raad Chief Resident, Department of Psychiatry, Weill Cornell / New York Presbyterian Medical Center
Paul S. Appelbaum Dollard Professor of Psychiatry, Medicine & Law, Department of Psychiatry, College of Physicians & Surgeons, Columbia University
MENTALLY DISABLED AND
MENTALLY ILL PERSONS
This entry consists of the following:
I. HEALTH CARE ISSUES Miriam Shuchman II. RESEARCH ISSUES
Carl Elliott
II. RESEARCH ISSUES [ADDENDUM] James DuBois
I. HEALTH CARE ISSUES
Additionally, because mentally ill persons comprise a particularly vulnerable population, the clinician has exceptional authority to protect such patients (National Bioethics Advisory Commission 1998). Unique features of mental health care, including the patients’ vulnerability, have also been linked to an argument that psychiatry requires a distinct ethics (Radden and Sadler 2010).
The dilemmas we focus on in this entry are not exhaustive of the moral issues that arise in caring for individuals with mental health problems; however, they are among those that clinicians experience most frequent-ly. The entry looks at six issues: decision-making capacity and informed consent for treatment; coerced treatment; coerced compliance; withholding the truth; breaching confidentiality; and allocating resources to persons with serious mental illness.
DECISION-MAKING CAPACITY AND INFORMED CONSENT FOR TREATMENT
Consider an individual who has become delusional and has lost the ability to think rationally. After interviewing the person and gathering information from family, a clinician may decide the person lacks the capacity to make decisions about suggested treatments. In such a situation, the clinician must guard the patient’s best interests and prevent harm to the patient and others; these moral duties may supersede the duty to respect the patient’s autonomy. Treatment decisions then fall to a family member, the courts, or an individual assigned by the patient or the courts to make decisions on the patient’s behalf.
When a person is treated for a medical condition, clinicians may question whether the person is able to participate in the process of informed consent. Participa-tion in the consent process requires a certain ability to communicate about health care decisions, typically referred to as capacity and also known as medical decision-making capacity, treatment consent capacity, and consent capacity. (Medical “competence”is a similar term but refers to a judgment made by a court [Appelbaum and Gutheil 2007]).
Assessing a patient’s capacity to make medical decisions involves questioning the patient about the nature of the illness and possible treatments, and determining from the patient’s responses if the patient understands the problem, the decision to be made, and the likely consequences of a given decision including its risks and benefits. However, not all patients are able to participate in such discussions. Critically ill patients may be unable to engage in conversation due to sedation or delirium, so their clinicians may communicate with a proxy to ensure informed decision making (Fan et al. 2008). In other situations, a person whose mental abilities are impaired may still have capacity to make certain
decisions about medical care. For example, a person with dementia may be able to participate in medical decisions early in the course of the illness, though decision-making capacity of individuals with dementia will diminish over time (Okonkwo et al. 2008), illustrating the notion that capacity assessment at one point in time may not apply to the future. Similarly, individuals with delirium or severe depression may be found incapable of deciding to refuse treatment, yet when the delirium clears or the depression lifts, their decision-making abilities return.
This was the sort of case presented by a man in his thirties, newly diagnosed with kidney failure. Though he required dialysis to take over the function of his kidneys, the man declined the treatment, saying he would rather die. A psychiatrist determined that he had severe depression and, in that context, lacked the capacity to make medical decisions. When the depression resolved with treatment, the man’s doctors judged him capable of making treatment decisions; however, his improved mood did not alter his desire to stop dialysis. Respect for patient autonomy dictated that this patient be allowed to refuse the lifesaving technology, and he died within a few days (Shuchman and Wilkes 1988).
Ascribing overarching importance to the principle of autonomy, as was done in the case of the man refusing dialysis, is generally accepted for patients with mental illness if decision-making capacity is not in question, yet some scholars argue that in these situations it is not always correct to honor autonomy over other principles, such as acting in the patient’s best interests (Seeman and Seeman 2011). Others note that in certain situations involving psychiatric care, autonomy specifically and principle-based ethics more generally are not the best lens through which to consider a patient’s decision making; other frameworks that are proposed as more suited for considering ethical issues in psychiatry include virtue ethics (Radden and Sadler 2010) and narrative ethics (Martinez 2009).
From a practical point of view it is crucial to consider each patient’s situation carefully. In a busy hospital setting, clinicians may too readily assume that an individual refusing care has the capacity to make that decision. This is seen with patients who sign out of the hospital against medical advice. Leaving the hospital may lead to serious negative outcomes, yet individuals who decline care in this way often are not assessed for their decision-making capacity (Alfandre 2009).
or other similar tools (Dunn et al. 2006). This is sometimes referred to as aformal capacity assessment.
COERCED TREATMENT
If a patient being treated for a medical illness is found to lack decision-making capacity, responsibility for the decision making must go to someone else. A rehabilitation team faced this situation when caring for patients who stopped eating after they experienced brain injury due to stroke. The team sought input from consultants, includ-ing a geriatric psychiatrist and a neuropsychologist, before concluding that these patients, who did not have a fatal illness, did not understand that their actions could result in death (Finestone and Blackmer 2007). In these cases, the team reevaluated the issue of capacity and took steps to ensure adequate nutrition by assigning decision-making responsibility to a patient’s designated power of attorney, typically a spouse or adult child.
In the United States, psychiatric medications are an exceptional legal category of treatment. Forcibly giving a patient psychiatric medication is typically done if the patient is behaving in a violent manner or is actively threatening to do so (Damsa et al. 2008), when the physician’s moral and legal responsibilities to keep the patient and others (staff, patients, family members) safe from harm override other duties, such as the duty to respect a patient’s autonomy (Lo 2005). In less volatile situations, state laws often prohibit involuntary treatment of psychiatric patients. However, many US states and Canadian provinces have procedures involving courts or review boards to consider whether a specific patient may be obliged to take medication despite the patient’s objections. This concept of oversight from the courts has received extensive legal backing from court rulings in the United States (Appelbaum and Gutheil 2007). The result is that mentally ill persons may be hospitalized against their will, yet not be treated with medications. This is another situation where the value of applying the principle of autonomy has been questioned (Appelbaum 1988).
The 1980s and 1990s saw the start of a movement toward the use of psychiatric advance directives, treatment guides prepared by chronically mentally ill patients who are capable of making decisions about their psychiatric treatment when they are functioning well but experience repeated episodes of impaired decision making during relapses (Swanson et al. 2006). A 2003 court decision (Hargrave v. Vermont) underscored the potential importance of advanced directives. The court held that in overriding the advanced directive of a woman with schizophrenia, the state discriminated against individuals with mental disabilities. However, advance directives in psychiatry are not universally accepted (Hung et al. 2012).
Another area of care in which doctors may seek legal opinions regarding involuntary medication involves severely mentally ill female patients who decline birth-control treatments. Questions about pregnancy during mental illness are controversial and may result in legal proceedings. A review of court hearings about obstetrical and fertility interventions in the United States, Canada, and the United Kingdom from 1976 to 2010 found that 40 percent of hearings involved women who were mentally ill or impaired (Matevosyan 2012). In the past, some authors suggested that it could be ethical to act to prevent pregnancy in patients who are incompetent to make medical decisions (McCullough et al. 1992), but current practice reflects greater respect for patient autonomy (Seeman and Ross 2011).
COERCED COMPLIANCE
The idea that a patient’s decisions must be voluntary is central to the concepts of patient autonomy and informed consent. Exceptions to the idea of voluntariness, such as commitment and involuntary medication, have been viewed as last resorts for patients considered incapable of making rational decisions. In general, physicians can take steps to enhance the capacity of mentally ill patients to participate in decision making around their care by treating the underlying mental illness, involving family or friends, or presenting the information differently (Lo 2005).
Yet even in the setting of outpatient care, there are situations where coercive methods are used to encourage mentally ill individuals to comply with treatments. Substance-abusing pregnant women comprise a group that is coerced into treatment, either via incarceration or via compulsory addiction treatment programs (Abel and Kruger 2002). Though US courts have sometimes supported the use of coerced compliance as a means of protecting the woman’s future child, coercion overrides the treatment decisions of an individual with intact decision-making capacity (Chavkin and Paltrow 2003) and surveys in the United States suggest that coerced compliance rules deter pregnant and substance-abusing women from seeking prenatal care or drug treatment (Poland et al. 1993). Clinical guidelines around substance-abuse treatment for pregnant women advocate respect for the women’s autonomy—including “full protection
of confidentiality,” to protect such women from dis-closure to others (American College of Obstetricians and Gynecologists 2008).
assigned to help clients manage their disability benefits withhold a small portion of disability benefits to encourage adherence, a practice that limits a client’s autonomy in order to achieve treatment goals. These kinds of practices may be perceived as coercive and require open discussion with the client (Elbogen et al. 2005; Marson et al. 2006), and these are also the sorts of situations where alternative frameworks of bioethics such as virtue ethics or narrative ethics might offer clearer guidance.
TRUTH TELLING
Clinicians caring for seriously mentally ill or mentally impaired individuals sometimes withhold information or act in deceptive ways, for a variety of reasons. A British survey of neurologists found that only 38 percent“nearly always” told patients with mild dementia about their diagnosis (Rice et al. 1997). Reasons for withholding the diagnosis include concerns that a patient could become depressed or suicidal, but it is more ethical to inform the patient with dementia about the diagnosis (Pinner 2000)—and that is the approach recommended by
clinical guidelines, as of this writing (Alzheimer’s Association 2007; Segal-Gidan et al. 2011).
In some cases outright deception may seem appro-priate from a clinical perspective, as when an emergency room physician surreptitiously medicated a patient who appeared to be having a manic episode and had described a plan to commit homicide-suicide. The man had been declining medications, so the physician presented a sealed orange juice container into which two drugs including an antipsychotic medication had been injected. Uninformed about the medication, the patient accepted the juice (Lewin et al. 2006). Discussions of this case in the literature note that it would not be considered ethically acceptable by many doctors; it is the antithesis of informed decision making, where a patient is informed about benefits and risks of prescribed medications (Hung et al. 2012). The legality of medicating the manic patient in this way was questioned at the hospital where it occurred, but there are other reports of covert medication occurring in outpatient clinics and nursing homes (Lewin et al. 2006) and of families requesting or reporting covert administration of medication (Seeman and Seeman 2011). When deceptive practices are considered for a patient who has lost decision-making capacity, ethicists advise that the practice be discussed with the patient’s family or other substitute decision maker as well as the treatment team (Hébert 2009).
In general, patients with mental illnesses and disabilities expect and deserve to be told the truth. This does not mean that the truth should be disclosed insensitively. Health professionals should consider how
to convey information in a manner most appropriate to a particular patient. A physician or therapist who shields a patient from the truth about his or her illness may unwittingly cause mistrust of health care professionals and of the medical system, and psychiatric and mentally impaired patients need to feel they can trust their doctors and health care teams (Sheldon 1982).
CONFIDENTIALITY
All doctor-patient relationships demand confidentiality, and in the special and stigmatized setting of psychiatric care, the need to protect a patient’s privacy can be paramount. A 1996 US Supreme Court ruling under-scored the importance of confidentiality in psychotherapy by protecting a patient’s statements to a psychotherapist from compelled disclosure (Jaffee v. Redmond), and the Health Insurance Portability and Accountability Act of 1996 maintained the same protected status for psycho-therapy notes (Clemens 2012). The privacy of the patient’s overall medical records, in electronic or other forms, is also legally protected and in most circumstances, patient information cannot be provided without the patient’s explicit permission, as advocated by the guide-lines of several medical professional organizations (Appel-baum 2002).
But a patient’s need for privacy must be balanced against the rights and needs of others. State laws mandate the reporting of incidents of child abuse, for example.
“Duty to warn”rules about physicians’obligations when patients express explicit threats also apply in most states, to the extent that today, mental health professionals view the duty to warn or protect a person who is threatened by a patient as integral to psychiatric assessment and care (Fox 2010). However, the majority of threats made by patients do not represent serious danger to others. Clinical judgment is required to decide whether a statement that a patient utters during the course of a psychiatric assessment merits breaching confidentiality (Felthous 1999), and courts have affirmed decisions not to warn when there is not a clear threat (Maxey et al. 2011).
There are also exceptions to the confidentiality of written or electronic medical records. Typically, patients must provide permission for disclosure of their records, but protected health care information can be shared between health care professionals or institutions when required for emergency delivery of care. If the information is shared to enable appropriate care of the patient, this is not considered a violation of confidentiality (Moskop et al. 2005).
ALLOCATION OF RESOURCES (SCARCE RESOURCES AND PARITY)
extremely scarce resources, such as organ transplants, transplant teams including psychiatrists and psychologists attempt to predict whether patients with severe mental illness or mental impairment who also have severe liver or kidney disease would be able to comply with the extensive follow-up care required after transplantation. However, there is only a small body of research on the extent to which pre-transplantation mental illness predicts trans-plant outcomes (Corruble et al. 2011).
In practice, when serious psychiatric problems are detected during a pre-transplant evaluation, transplant teams may recommend psychiatric treatment, increased social supports, or other interventions aimed at promoting adherence, but psychiatric disorders are very rarely an absolute contraindication to listing a patient for a transplant (Heinrich and Marcangelo 2009). Some patients with mental illness may benefit from early intervention and support, while others will not be able to follow those recommendations due to the severity of their medical illness (DiMartini et al. 2008; Varescon 2013). The moral imperative to justly allocate scarce resources demands that in decisions about whether to list a patient as a transplant candidate, psychiatric and psychological problems be considered similarly to other comorbidities (Kornfeld 2002).
Until recently in the United States, treatments for mental illness were far less available under standard health insurance plans than treatments for medical or surgical problems. The 2008 Mental Health Parity and Addiction Equity Act, implemented by most insurers in 2010, mandates that coverage for a broad range of mental health conditions be equal to coverage of medical or surgical conditions (Busch 2012). By requiring equity in insurance coverage, the parity law ended what has been called
“government-sanctioned discrimination by insurance companies against patients with psychiatric and sub-stance-use disorders” (Fritz and Kennedy 2012, 458). Parity is especially important for those with chronic or severe mental illness, who had faced limited access despite continuing or recurring episodes of illness.
CONCLUSION
Health care providers caring for mentally ill persons face ethical dilemmas in a number of areas. Decisions to medicate a patient against her will, breach a patient’s confidentiality, or withhold scarce resources such as organ transplants are generally not simple decisions to make. The physician or therapist who withholds the truth from the patient, or who coerces the patient into complying with a recommended treatment, may be acting unethically or may be facing a moral dilemma in a complex clinical situation. When the question of how to proceed is difficult, clinicians may turn to clinical consensus
statements, standardized tools such as the tests designed for assessing decision-making capacity, or expert consul-tation, including with clinical ethicists. In turn, an ethicist may suggest that the dilemma be considered using an alternative ethical framework to the standard principle-based ethics that physicians are most familiar with.
SEE ALSOAccess to Health Care; Autonomy; Coercion;
Cognitive Impairment/Traumatic Brain Injury; Con-fidentiality; Electroconvulsive Therapy; Freedom and Free Will; Health Care Resources, Allocation of: II. Microallocation; Information Disclosure, Ethical Issues of; Informed Consent: VI. Issues of Consent in Mental Health Care; Medicaid; Medicare; Mental Health Therapies; Mental Illness: IV. Biomedical Models; Mental Institutions, Commitment to; Patients’Rights: II. Mental Patients’Rights; Psychopharmacology; Psychosurgery: I. Ethical Aspects of
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Miriam Shuchman (1995, 2004, 2014) Chair, Research Ethics Board, Women’s College Hospital, Toronto, Ontario
II. RESEARCH ISSUES
Protecting the interests of mentally ill and disabled people entails a delicate balance between two aims: rigorous research into their medical problems and attention to the difficulties involved in using those people as subjects of research in ethically appropriate ways. Although the hope of understanding mental illnesses and disabilities depends on the results of medical research, persons who have those conditions are especially vulnerable to exploitation and abuse.
RESEARCH GUIDELINES
There are two major problems in conducting research on mentally ill and disabled persons. The first is competence, or decision-making capacity. Because of the nature of their problems, some mentally ill and disabled subjects may not be able to make informed decisions about whether to participate in a research protocol. Issues surrounding informed consent are made even more problematic by the fact that mentally ill or disabled subjects may be living in institutions for patients with special mental disorders, and institutionalization can exert pressures that compromise a person’s ability to make a free choice about participating in research. The second problem involves risk and the design of research studies. Under what circumstances, if any, can a mentally ill or disabled person be exposed to the risk of harm in a research study?
Some mentally ill or disabled persons may be incapable of giving valid informed consent to participate in a research study. Prohibiting those potential subjects from participating, however, would rule out much medical research that could benefit the subjects and others with similar disorders, in the long run harming the populations the studies are intended to protect. For that
reason, since the last two decades of the twentieth century there has been a consensus that research on mentally ill and disabled persons can be justified in some cases, subject to certain conditions (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1978, 1979; Royal College of Physicians of London 1990; National Institutes of Health Office for Protection from Research Risks 1993; National Bioethics Advisory Commission 1998; Canadian Insti-tutes of Health Research et al. 1998; Wing 1999; Royal College of Psychiatrists 2000; Council for International Organizations of Medical Sciences 2002).
Perhaps the most important of those conditions is the stipulation that research on incompetent mentally ill or disabled persons should be allowed only if that research cannot be done on competent persons (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1979; National Bioethics Advisory Commission 1998; Wing 1999). The guidelines for biomedical research proposed by the Council for International Organizations of Medical Sciences in collaboration with the World Health Organization (2002) make that requirement explicit, arguing that because of the risks and burdens involved, medical research should not be done on individuals who are unable to choose to participate if it can equally well be done on competent adult volunteers.
A second condition concerns the amount of risk to research subjects that may be allowed. Many professional and regulatory bodies state that research on incompetent subjects, such as children and the mentally ill or disabled, ordinarily is approvable only when the research involves minimal risk or a minor increment over minimal risk to the subject (“Part II: Federal Policy for the Protection of Human Subjects: Notice and Rules”1991; Royal College of Physicians of London 1996). According to this reasoning, some research on mentally ill or disabled persons may be ethically justifiable, subject to specific additional conditions, even if it is nontherapeutic (National Institutes of Health Office for Protection from Research Risks 1993; Wing 1999).
