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Refusing Care: Forced Treatment and the Rights of the Mentally Ill

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By Elyn R. Saks

University of Chicago Press

Copyright © 2002 Elyn R. Saks
All right reserved.
ISBN: 0226733971

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1 - doctors and lawyers: why can't we all just get along?

Nancy, thirty-five years old, was undergoing a hearing to decide whether she should be allowed to refuse psychotropic medication. She had been brought to the emergency room by the local police. Some time ago she had lost her job and had subsequently been evicted from her apartment. That night, she was caught trying to break back in. The police did not detain her, but they found her several hours later by the railroad tracks nearby, huddled by a fire she had built to keep herself warm.

Nancy's stay in the hospital was difficult. She resisted being there, denied that she was mentally ill, and wanted no part of treatment. Although she had no history of previous psychiatric treatment, her family reported that she had been troubled for a long time. In addition to her bizarre behavior the evening of her confinement and her uncooperative behavior on the ward, Nancy admitted that she heard voices. She was committed to the hospital. She continued to refuse treatment, however, on the grounds that she was not mentally ill, did not need medication, and in any case preferred not to take medication of any kind. Nancy's treating psychiatrists sought to medicate herinvoluntarily via an order of the court.

Nancy's case--a real case--raises many difficult issues. My purpose in describing it is to explore why the typical psychiatrist seeks treatment in cases of this kind and why the typical lawyer seeks a disposition that upholds the patient's right to refuse treatment. That is, I am interested in the fantasies and fears that underlie the psychiatrist's and the lawyer's commitment to their different stances. What stories do they tell themselves to form the basis for their positions? At this point, I must somewhat stereotype the mental health professional's and the lawyer's response to this case; later I will add some depth to this picture.

The psychiatrist's theory is fairly straightforward. He tells himself that Nancy is seriously mentally ill. She behaved bizarrely--not to mention dangerously--on the night she was brought to the hospital. According to her parents' report, she has a long history of troubled behavior. Recently she lost her job, suggesting that she is unable to function effectively in society. She denies that she is ill--and therefore "lacks insight"-- and does not cooperate with treatment or the ward routine. Finally, and perhaps most important, she admits to hearing voices.

If Nancy is seriously mentally ill, the psychiatrist tells himself, she needs to be treated. That's what doctors are for: to cure people--or at least to help them. Nancy's refusal of help is but a symptom of her mental illness. Mentally ill people often deny that they are ill, even when it is obvious to everyone. And of course if one does not think one is ill, one is not going to think that one needs treatment. Because Nancy lacks insight into her condition, she is in no position to make a reasoned choice concerning what to do about it.

The doctor's fantasy continues: imposing treatment on Nancy will promote her well-being. She will stop hearing voices. She will relate better to those around her. She will behave better. She will be able to be more productive. Finally, she will feel happier and have a greater sense of wellbeing. Serious mental illness is extremely painful and debilitating, and Nancy, if she responds well to treatment, will be restored to health. The benefits to Nancy may be matched by those to her loved ones--and to society itself. If Nancy recovers completely, she may no longer need treatment and may go on to live a happy and healthy life.

The doctor realizes, of course, that forcing treatment on Nancy does just that--it forces her. And being deprived of choice is itself unpleasant. But surely, he reasons, it would be less unpleasant than the fate Nancy would otherwise face. The benefits justify the costs. Indeed, the costs to autonomy can be justified in other ways. Perhaps Nancy is not truly autonomous. After all, she is impaired, so improving her functioning will serve her long-term autonomy. Indeed, perhaps she is not even truly herself when she makes the unwise choice. When restored to her true self, she will be grateful--that is her autonomous expression of her interests, and that is the choice we should respect.

If the doctor tells himself a hopeful story about the benefits of treatment, even if it is forced, he also tells himself a bleak story about the risks of nontreatment. If Nancy is not treated for her psychiatric disorder, she may progressively deteriorate. Her behavior may become more bizarre and unmanageable; she may begin to voice delusions as well as hallucinations; her hallucinations may become more frightening, her speech incoherent. Nancy may become totally out of control and even violent to herself or others. At that point there will be no choice but to medicate Nancy, whatever her preference.

If Nancy's condition does not become more acute in this way, it may, after a certain point, become irreversible. Nancy may become a chronic patient. Her bizarre behavior and preoccupation with her hallucinations may then make her unable to work ever again, her relationships may become strained if not nonexistent, and her self-care skills may deteriorate. She may become homeless. In addition, Nancy's family may suffer all of these losses as well--and society itself. At best, then, Nancy may lead a horrible life; at worst she may be dead after a short time.

Of course, the doctor will think, nontreatment will jeopardize not only Nancy's well-being but also her autonomy. Nancy's illness may cause her autonomy to become progressively attenuated. She may become so ill that her autonomy is irretrievably lost. At that point she will have no real choices left.

In short, the doctor's fantasy is that he will cure his patient; his fear, that she will decline and die. Treatment, even forced treatment, will serve not only the patient's best interests but also her long-term autonomy. Non-treatment will disserve both the patient's interests and her autonomy. What else is a reasonable doctor to do but to force treatment? Given these hopes, fantasies, and fears, it is not surprising that the doctor wants to force treatment. The lawyer, then, must have a very different set of hopes, fantasies, and fears, because she wants to allow the patient not to be treated. What is going on in her mind?

The story she tells herself may have more branches to it, as it were (or different branches may appeal to different lawyers). For example--in a move more popular in earlier days--she might entirely repudiate the notion of mental illness. Nancy, to be sure, is undergoing certain problems in living. She has lost her job and been evicted from her apartment. She is probably angry. She is responding in an angry and somewhat antisocial way--trying to break into her apartment, making a fire in a residential neighborhood. But in no way does this behavior suggest that she is ill. To do so only medicalizes ordinary human conflict. Of course, Nancy does hear voices, but so do religious mystics. Hearing voices is outside of the norm, but can't people be unusual or different without being labeled mentally ill?

Of course, if Nancy is not mentally ill--if there is no such thing as mental illness--forcing medication on her is abominable. The lawyer will point out that if we do so she will suffer all the risks, known and unknown, of these powerful chemical agents and will derive no benefit from them. Perhaps worse, the medication may have the effect of changing Nancy's most intimate self--her thoughts, feelings, and behaviors--solely to make her more like us. That is state intrusion at its most vulgar. Finally, treating Nancy against her wishes is a serious assault on her dignity, made all the worse because she is a fully autonomous agent.

Not many people these days, not even lawyers, think that mental illness is just difference--although we will see in the next chapter that how it is anything more is a vexed question. Accordingly, not many today think that treatment is just a form of mind control.

Many lawyers, on the other hand, might agree with this one's next possible posture in this case: that, although mental illness is real, Nancy may not herself be mentally ill. The reasoning about her behavior would be the same as in the previous condition: Nancy is angry, wants to get back into her apartment, and is sleeping rough by an outdoor fire because she has no choice. Her family is now reading a lot of her prior behavior as symptomatic of illness rather than of interpersonal difficulty. The voices she is hearing are a little harder to deal with, but maybe more people hear voices than admit to it, or maybe there has been some misunderstanding. In any event, Nancy is thirty-five years old and has worked most of her adult life. If she were truly psychotic, one would expect earlier and unequivocal signs. At the least she has many resources.

It is clear, of course, that if Nancy is not mentally ill, she should not be forced to receive treatment. There would be no point to the treatment-- and she could be seriously damaged. In addition, as above, forcing treatment on Nancy is a serious erosion of her autonomy.

Lawyers often argue in the alternative, and the lawyer here may believe that Nancy should not have treatment imposed on her even if she is mentally ill. The medications may damage Nancy both physically and psychologically. The risks of antipsychotic medication are well known (I discuss them in chapter 4). Nancy could develop an irreversible, disfiguring movement disorder. She could even die from the treatment.

The lawyer may also point out that the psychological risks are not insignificant and may outweigh the benefits to Nancy's mental state--if the medications work. For example, accepting that she is mentally ill may irreparably harm Nancy's self-esteem, and it may be better for her to resist the label even if it truly applies. Think how well she has functioned so far. Worse yet, Nancy may come to accept the mental illness role even when she need not do so. She may stop seeking work, feel disabled, and become helpless. Forcing treatment may cause her to feel resentful and angry toward her treaters and thus may deter her from ever voluntarily seeking treatment in the future. And the treatment may even be less likely to work if forced--so she gets all the costs and perhaps none of the benefits.

Not only may treating Nancy involuntarily not redound to her wellbeing, the lawyer will point out, it certainly does not serve her autonomy. Nancy is somewhat mentally ill, according to this theory, but she is not incompetent. And competent people ought to be able to decide their own fate. The idea that her autonomy may be impaired is beside the point; absent incompetence, we serve someone's autonomy by letting him or her decide free of interference by others. That is what we are not doing with Nancy. Medicating Nancy may increase her long-term autonomy, but so long as she has minimal autonomy now, we let her decide if she wants that. And the idea that we serve Nancy's autonomy when we support the choice of the grateful Nancy is no more than sleight of hand--who's to say who the "real" Nancy is?

If forcing medication on Nancy is full of risks, according to the lawyer, allowing her to refuse promises considerable benefit. Negatively, it avoids all the potential harms enumerated above--for example, risks to her physical well-being. Positively, it may provide numerous potential benefits. First, Nancy may recover spontaneously. Illnesses sometimes remit without treatment, and when they do, the patient is spared all the costs associated with treatment, while preserving her self-esteem and sense of agency. Indeed, such preservation may give Nancy added motivation to recover under her own steam--and motivation is important to recovery. Second, even if Nancy continues to be mentally ill, allowing her to make her own choice has the benefit of making her feel listened to and valued. It gives her dignity and self-respect. Nancy may prefer dignity and self-respect to being mentally healthy, and, if she is not incompetent, she may have the right to have this preference honored.

Third, whatever we may imagine, Nancy herself may feel happier remaining mentally ill than being forced to become mentally healthy. People have idiosyncratic preferences. Perhaps Nancy prefers the symptoms of her mental illness to the side effects of her medication or to the diminution of self-esteem that afflicts many who take medication. Or perhaps Nancy prefers the symptoms of her illness because they tend to dull her sensitivity to a bleak and painful life. She may wish not to know, so to speak. The lawyer will wonder who we are to tell Nancy which is the better life for her; surely she knows best.

Finally, the lawyer may imagine that, if we only give Nancy the dignity of her own choices, she may eventually come around to taking the recommended medication of her own volition. Doctors forbidden to force medication have an incentive to talk to their patients--to engage in persuasion--and they may ultimately persuade Nancy to do what the lawyer, in this posture, feels would best serve Nancy's interests. The advantage now is that there will be no infringement on autonomy, and the medication may work better to boot; cooperative patients are much likelier to benefit from treatment than uncooperative ones.

If allowing Nancy to refuse treatment may serve her best interests, the lawyer will continue, it also preserves her autonomy. Once again, autonomy is served if one retains freedom to make one's own choices. And one may remain autonomous in the most important senses even though one is impaired. Indeed, giving the impaired patient freedom to choose may bolster her ability to choose well and wisely. The less than fully autonomous agent may become more autonomous when she is treated as though she were autonomous. Of course, greater autonomy makes one feel better, too, so we count the benefit of increased self-respect when considering the patient's well-being.

In short, the lawyer tells herself a very different story about Nancy than does the doctor. She believes that supporting Nancy's right to refuse treatment may serve both her best interests and her autonomy. The lawyer's secret fantasy is that all the gloomy talk about Nancy may be a terrible mistake--or worse yet, some abuse of power. Maybe Nancy is not mentally ill after all, and if not, she certainly should not be treated against her will. Even if the lawyer concedes that Nancy is mentally ill, she will still tell herself that forcibly medicating Nancy threatens to harm her both physically and psychologically, whereas allowing her to refuse may enhance her wellbeing as she sees it. And of course this tack furthers Nancy's autonomy.

The doctor and the lawyer, then, have very different ideas about Nancy. With involuntary treatment, the doctor predicts cure and restored autonomy, with no treatment, deterioration and diminished autonomy. By contrast, with forced treatment, the lawyer imagines psychological and physical damage, as well as insults to autonomy, with upholding the right to refuse, good psychological effects and a preservation of or increase in autonomy.

I have of course purposely picked a case that is ambiguous as to the correct course--that is on the border. And both doctor and lawyer will temper their predictions somewhat in more obvious cases. For example, if the patient has a long history of nonresponsiveness to the treatment or even ill effects, the doctor is not likely to be so sanguine about the benefits of treatment. Similarly, if the patient becomes and remains extremely resentful and hostile as a result of a long history of forced treatment, the doctor is not likely to predict thanks.

By contrast, if the patient has a long history of crippling mental illness, the lawyer is going to find it harder to imagine that it might all be a mistake--that the patient is not really ill, just having some difficulties. Similarly, if the patient has a long history of responding to treatment and feeling more empowered as a result--as well as of deteriorating when allowed to refuse--the lawyer is not likely to be so confident about the benefits of allowing her to refuse or so concerned about the dignity costs of forced treatment.

Still, even in these less borderline cases, the typical doctor is likely to support treatment and the typical lawyer the right to refuse. The doctor will reason that it is better to be on medication and thus mentally healthier, even if one is still impaired and however angry one is about the forced treatment, than it is to be in a more seriously ill state. Similarly, forced treatment will ultimately serve the patient's autonomy because the drugs render him more autonomous, even if only a little.

By contrast, the lawyer will reason that there remain important benefits to allowing the patient to refuse. We should not underestimate the value of dignity and self-respect, even at the cost of some well-being, conventionally conceived. Unless she is completely incompetent, we should trust the patient to make that judgment for herself. And although the healthy patient might make a different judgment, we should respect the ill patient's autonomy as much as the well patient's--we should not be in the business of choosing selves. Indeed, the patient must have a reason for choosing at times to discontinue her medication; even the well self must have some ambivalence about the benefits, for her, of being medicated into health.



Continues...

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Excerpted from Refusing Care: Forced Treatment and the Rights of the Mentally Ill by Elyn R. Saks Copyright © 2002 by Elyn R. Saks. Excerpted by permission.
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