Harold J, Bursztajn and Archie Brodsky
The Journal of Clinical Ethics
Volume 5, Number 3
Harold J. Bursztajn, MD, is Codirector of the
Program in Psychiatry and the Law and Associate Clinical
Professor in the Department of Psychiatry at Harvard Medical School, Boston.
Archie Brodsky, BA, is a Senior Research Associate in
the Program in Psychiatry and the Law, Department of Psychiatry, at Harvard
Medical School.
Wenger and Halpern's timely article perceptively identifies some major clinical and ethical issues that arise when one confronts a medical patient's refusal of a psychiatric consultation to evaluate his or her capacity to make decisions. Indeed, this article takes on even greater importance than the authors suggest when it is considered in the light of the present-day preoccupation with controlling cost that shadows medical practice. On the basis of Wenger and Halpern's prescient discussion, we will analyze the effect of cost control on the patient's capacity to make decisions and will propose applications of this analysis for clinical practice, ethics, law, and public policy.
A patient's capacity to make decisions cannot be evaluated meaningfully without considering two other elements of a patient's competent informed consent to treatment: information and voluntariness. Has the patient been fully informed in such a way as to empower, rather than to incapacitate, his or her ability to make decisions? Does the patient feel coerced, either overtly or subtly? Poor information or a lack of voluntariness can overwhelm an otherwise competent patient's capacity to decide. Thus, an assessment of a patient's decision-making capacity (more broadly, an assessment of his or her competence) must be specific to a particular environment: attention should be given to the particular decision to be made, the patient-clinician relationship, and the institutional environment.
In particular, pressures that stem from considerations raised by third-party reimbursement and managed care are now making themselves felt in virtually every hospital ward. These pressures create a chilling atmosphere in which to provide information and to obtain voluntary informed consent; this atmosphere, in turn, affects how well a patient may make decisions. Whereas previously, those practicing in institutions may have felt pressured to provide heroic treatment at any cost, [1] the institutional milieu now pushes clinicians toward providing minimal treatment. Patients can easily pick up on these pressures—as conveyed by, or in spite of, the best efforts of their treating clinicians. When patients refuse treatment for no comprehensible reason, clinicians should keep in mind that depressed individuals most often respond to stimuli that are congruent with their feelings of hopelessness, while they ignore optimistic stimuli. These patients draw selectively from their environment, with a bias toward pessimism. Thus, even when (as in the case the authors report) the patient's physician recommends treatment, that recommendation may be undercut by countervailing currents to which the institutionalized patient is then especially vulnerable. [2]
Such suggestibility must be considered in the case of a patient such as the one described by Wenger and Halpern, who refuses a psychiatric consultation with the explanation that psychiatrists in the past have been "able to change my mind" about consenting to medical treatment. Insofar as she sees her mind being changed by someone other than herself, the patient places the locus of control over her own thoughts outside of herself, which is both a symptom of depression and an indication of her state of vulnerability to the pessimistic inertia of the institutional milieu. The patient herself thus provides a subjectively accurate, context-sensitive (albeit metaphorical) description of her own state of mind.
To recapitulate: Wenger and Halpern present the case of a 49-year-old woman with a 22-year history of myasthenia gravis that was subsequently complicated by malignant thymoma and diabetes mellitus. The patient had endured long prior hospitalizations and several times had become depressed and delusional, with suicidal thoughts, during episodes of acute illness. Admitted to the hospital with weakness and pneumonia, she failed to respond to antibiotics and high doses of steroids. Her physician decided to move her to the intensive care unit for possible intubation. The patient, however, stated that she had suffered enough and did not want any more painful treatment such as intubation, even if foregoing the treatment meant that she would die.
The patient's cognitive faculties were intact, and she was capable of articulating and manipulating the information necessary to make decisions about her treatment. Her physician, however, noted suicidal feelings and a history of psychotic depression in conjunction with steroid treatments, and sought psychiatric consultation. The patient refused the consultation, stating that its purpose was to coerce her into treatment.
Wenger and Halpern argue cogently that, in cases such as this one, a psychiatric consultation to determine capacity is not equivalent to coerced treatment. On the contrary, it helps the physician understand the patient's true wishes, helps the physician share the making of decisions with the patient, and may restore or enhance the patient's ability to make autonomous decisions. From this perspective, we offer the following clinical considerations to assist physicians who seek to persuade a reluctant patient to accept a psychiatric consultation to assess his or her competence, or physicians who must decide how best to respond to a patient's persistent refusal of such a consultation.
There is no clinical or ethical justification for abandoning a patient who has refused both medical treatment and psychiatric consultation. Rather, a waiting period is in order during which the patient's resistance can be addressed. [3] A waiting period allows the treating clinician to build an alliance with the patient, explore the reasons for the refusal, and help the patient see the recommended consultation in a different light. The treating clinician, in consultation with a psychiatrist, may take preliminary steps to help the patient make decisions autonomously and authentically. To do this, both healthcare providers and insurance companies must accept such therapeutic waiting periods as a legitimate part of treatment.
In order to understand and work with the patient, the treating clinician can address informally the kinds of questions about the patient's state of mind that the consulting psychiatrist will ask as part of a comprehensive evaluation." [4] Central to the assessment is the influence of the patient's emotional state on his or her capacity to make decisions, even in the presence of apparently intact cognitive functions. [5] The clinician should ascertain what the patient has found unbearable, both in life generally and in previous medical treatment. If the patient has suffered from post-traumatic stress disorder (PTSD) as a result of previous episodes of illness and treatment (for example, the "post-ICU [intensive-care unit] syndrome" patient), the patient may subsequently be at high risk for depression and feelings of hopelessness. Such responses may then lead the patient to make unnecessarily pessimistic predictions about the results of treatment, as in the case presented here. In that event, the clinician needs to ask whether and how the patient's capacity to respond to optimistic data can be encouraged.
The clinician may also explore whether the patient has not reconciled his or her chronic illness with his or her own identity. Whether the clinician is dealing with a patient's genuine identity or an assumed "sick role" is a difficult question to answer; it needs to be explored with the patient, in a kind of dialogue that a treating physician who is deeply aware of a patient's suffering may or may not be able to carry off.
The "warmth, empathy, and persistence" called for by Wenger and Halpern are a necessary foundation for overcoming the patient's resistance to the consultation. More specifically, in the same way that the referring clinician confronts the patient's resistance to a psychiatric consultation in order to treat the patient, he or she can address the patient's fear of being stigmatized, explore the effect the consultation may have on the patient's self-esteem, help the patient understand his or her psychosomatic processes, and reassure that patient that his or her medical physician will continue to provide care. [6] With the patient's permission, these issues can also be addressed with the family and the treatment team. Several strategies can be used to counter a refusal to be assessed: the clinician can clarify the goals of the consultation, acknowledging the difficulties the treating clinician would have in conducting such an assessment; or, the clinician can hold out the possibility that the psychiatric consultation might provide something he or she overlooked that might help ease the patient's suffering.
In addition to attempting to intervene with the patient, we recommend that the clinician closely examine negative cross-currents at the institution. As we noted above, a negative atmosphere may discourage the patient by conveying a sense of futility and hopelessness. [7]
The clinician should also consider how countertransference (a defensive reaction to distressing feelings or thoughts engendered by painful realities) may affect his or her ability to objectively assess the patient's competence. The specialized training a consulting psychiatrist will bring to the assessment of competence will enable him or her to avoid the role conflict in which the treating clinician is inevitably enmeshed. Psychiatrists who have this specialized training have made clear in their own ethical guidelines that treatment and evaluation are best carried out by different individuals. [8] Even highly experienced psychiatrists, when they attempt to assess the competence of patients they are treating, run into pitfalls that range from identifying with a patient's hopelessness to defending themselves against the awareness of such hopelessness by resorting to heroic measures. Asking a treating clinician to serve as an objective inquirer and evaluator may work against the patient's best interest, which is usually best served by having the treating clinician take an empathetic stance.
When a clinician communicates with a patient about such a consultation, then, it is best to clearly and specifically acknowledge the limits of his or her ability to assess or enhance the patient's capacity to make decisions, not only because of his or her training, but also because of the nature of the relationship between them. By explaining the conflict in this way, the clinician can put the consultation with a psychiatrist in a less threatening light. The explanation needs to be made in accessible, common-sense language, such as the following:
Even though I want to support the choice you've expressed, I still wonder whether I'm too close to the situation, and whether I may simply want to do what you want me to do because, as your doctor, I have put myself in your shoes. So I'd like to have someone whose judgment is not shadowed by these feelings look at this from a perspective separate from the one you and I both hold. So, let's get a psychiatrist's input, not because I think either you or I are out of our minds, but because we can use a "fresh look."
The emphasis, then, is less on the psychiatrist's specialized training than on a "fresh look," uncomplicated by the treater's perspective.
The cross-currents of feeling, perception, and motivation in which patients may be caught come from his or her family as well as from the institution. [9] Wenger and Halpern tend to idealize the family as a potential ally of the physician in promoting the patient's best interest. However, the family's perspective is not necessarily any more reliable than the patient's. Family members, too, may have selective memories, or their memories may be affected by their emotional state, or they may rework their memories over time. Family members may have conflicting perspectives, and these may be colored by acute or chronic stress. Thus, what is offered as "the family's perspective" may depend on to whom one talks and when.
As Wenger and Halpem note, "the family's interpretation may be subject to their own desires for the patient." Family members may become exhausted with the care of a chronically ill patient and may need a period of respite. On the other hand, they may defer to the clinician and comply with his or her recommendations because they fear the patient will blame them if they take a contrary position and a poor outcome results. They may forget such compliance later if, instead, the clinician's recommendation produces poor results.
Family members may have vested interests that may not be immediately apparent. They may anticipate an inheritance; may rely on disability payments that will continue only as long as the patient lives; or may worry that the patient may live long enough to "wipe out them out" financially and emotionally. [10] When a clinician considers such matters, he or she is not placing family members in a bad light; he or she is simply accepting the fact that family members' opinions may be shaped by interests that they may find difficult to acknowledge. The clinician should not be judgmental, for example, in the case of a woman who wishes her terminally ill husband would die while she feels she is still young enough to find another mate.
To clarify these issues, short-term family therapy may be called for. In the case discussed by Wenger and Halpern, the family sacrificed to an unusual degree. The patient's husband chose early retirement so that he could take care of his wife, and her son attended the local university and lived at home to help out. The patient's initially stated reason for wanting to die was that she was a burden on her family. How was each individual's judgment affected by these considerations? Was the family being as freely supportive as they could be, or did they need support so that the patient could draw the encouragement she needed from them? Was this a patient whose competence was impaired by her long history of suffering, or was this a long-suffering patient in a less-than-optimally-competent family system, where the competence of each member could have been enhanced by addressing their suffering? Subtle impairment of competence brought on by suffering is difficult to evaluate, but such evaluation is essential. [11]
In the wake of a patient's refusal of a psychiatric consultation, the treating clinician should be alert for a phenomenon familiar to experienced psychiatrists: the flight into health. Just as when a patient abruptly breaks off psychotherapy, the refusal of a psychiatric evaluation may be a last desperate attempt to deny the seriousness of one's illness. This flight from illness into pseudo-health may be followed by rapid collapse of a patient's defense mechanisms and an acute crisis.
Wenger and Halpern suggest that treating clinicians may ask psychiatrists for "second-hand" guidance in dealing with a patient who refuses to be evaluated by a psychiatrist. Such a consultation with the clinician, in which the patient is "examined" at arm's length, may be appropriate to assist in determining treatment, but is of limited use in determining competence, which is best carried out by direct examination of the patient. For this reason, ethics committees that seek to determine a patient's competence without the benefit of a direct psychiatric examination of the patient are engaging in clinical practice that borders on negligence. When a psychiatrist does not have an opportunity to examine a patient directly, the purpose of the consultation should be to identify what treatment will best enhance the patient's competence to make decisions.
When a patient has refused a psychiatric consultation regarding intractable pain, the treating clinician (in consultation with a psychiatrist) may wish to start low-dose antidepressant medication. This will help to reduce the patient's pain and will help the patient weigh, without the burden of depression, the consultation that he or she initially refused. This is an appropriate use of an arm's-length psychiatric consultation. Antidepressants are an often-overlooked resource, especially given the newest classes of these agents, which have a high benefit/risk ratio even for patients on ventilators. Al] too often, physicians rely solely on opioids for pain relief, or on a mixture of opioids and tranquilizers, which may reduce a patient's anxiety but still leave the patient depressed. [12] Low-dose antidepressants, on the other hand, can be effective in easing (for example) the panic and depressive symptoms associated with being placed on a ventilator, as well as in easing the associated pain.
As in Wenger and Halpern's case, a patient who remembers a previous experience on a ventilator as depressing may well refuse a second intubation. Depression is a pervasive but under-diagnosed complication for patients on ventilators. To make it less likely that the patient will have a depressing experience, supportive measures should be considered, ranging from providing a blackboard for communication to antidepressant therapy.
For a patient who did not have the benefit of these measures during an earlier painful experience, the administration of antidepressants may make it possible for him or her to address memories that were previously unbearable. While some may question the reality of such "chemical sanity," there is no evidence that choices made with the help of antidepressants are any less authentic than choices made in a state of depression or overwhelming pain. Indeed, there is compelling testimony that the opposite is often the case. [13]
If the patient described by Wenger and Halpern did not have psychiatric follow up after her previous acute medical episodes, then she would remember psychiatrists only as having induced her to endure suffering, not as having helped her work through it. An acute episode of severe illness can lead to PTSD, which may be reactivated by a new episode of illness. [14] That is why people who have required heroic measures in response to acute illness, in spite of their wish to forget, may be better served by attending an outpatient psychiatric service after the acute episode has passed so that they can work through the memory of their trauma.
As Wenger and Halpern note, clinicians must not only respond to a patient's refusal of a psychiatric consultation, but also try to prevent such refusals from occurring and recurring in the chronically ill patient who intermittently requires heroic measures. No amount of subsequent repair can substitute for preparing the patient for acute crises and discussing with her, when she is at her best, what is to be done when a crisis comes. Such anticipation, in effect, changes a living will from a pro forma document into a process that is shared by clinician and patient. It can also minimize the sometimes harmful effects of educational efforts mandated by the Patient Self-Determination Act. These efforts all too often are implemented in either a perfunctory or mechanical fashion at the time of an acutely ill patient's admission to the hospital. [15]
The decision whether or not to terminate life support is not simply an individual choice. The decision and the way in which it is made have an effect not only on the patient, but also on the people close to the patient (family, friends). In addition, there is the effect on the treating team of allowing a patient to die or to continue to suffer. The social cost that is emphasized in today's climate is the cost of a treatment that seems only to prolong a patient's suffering. However, there is also a cost-to society and to individuals — when a patient is not treated, including the cost of reducing a patient's range of choices by refusing treatment to patients who would elect to have such treatment if they were truly free to do so. We all suffer the cost of calling a decision autonomous when, in fact, it is neither autonomous nor authentic.
Today's rote invocation of the principle of autonomy obscures the context-specific, individual-state-specific nature of autonomy. One needs to have a deep understanding of a person to say that any decision the person makes is or is not truly autonomous. A person may make a decision that is prima facie autonomous but is not authentic, that is, it is not consistent with the person's basic principles or true self, the self that in the midst of suffering may be overwhelmed by despair and fear. [16] To accept the "self of despair" uncritically as the "authentic self," without an effort at complete understanding, is to collaborate in manipulative, expedient non-treatment, often in the interest of controlling cost.
In the current climate, the authenticity of a patient is subordinated to his or her autonomy. Clinicians labor under intense pressure to save time, and funding for "untreated" patients who need a waiting period to clarify their true wishes is not allowed by Medicare, Medicaid, or managed-care agencies. These patients then face the choice of accepting involuntary treatment or losing their hospital beds. The autonomy of patients still needs to be honored and defended, but in the current climate, taking any expression of autonomy at face value is a far greater danger. This rapidly changing economic and institutional climate shows why ethics must evolve historically. An ethics that either slavishly follows or is insensitive to the current social environment runs the danger of collapsing into a system of rationalizing what is most expedient.
When evaluating a patient's competence to make a decision, what legal standard should be applied that will preserve both the authenticity and the autonomy of the patient's decision? Historically, those who championed the autonomy of patients advocated one of the lower standards for determining a patient's capacity to make decisions. Beginning with the ability to signify a simple "yes" or "no," these standards ranged from straightforward factual understanding to a higher standard of whether a patient had the ability to manipulate information rationally. Now, however, given the way that pressure to contain cost serves to support the choice not to treat, to truly champion a patient's autonomy requires advocating a higher standard.
Wenger and Halpern are correct, then, when they include in the assessment of competence the patient's ability to "appreciate the clinical situation." Stone has questioned the clarity and reliability of this "appreciation" standard. [17] Nonetheless, although its interpretation varies by jurisdiction and even by case, this standard allows for a degree of complexity beyond mere rational understanding. In so doing, it allows emotional considerations to be taken into account. It is worth noting that in the very different sphere of criminal law, the Federal Insanity Defense Reform Act of 1984 excuses from criminal responsibility a defendant who, "as a result of a severe mental disease or defect, was unable to appreciate the nature and quality or the wrongfulness of his acts." [18]
Although Wenger and Halpern distinguish between a patient's ability to appreciate the clinical situation and his or her ability to weigh the risks and benefits of a treatment in an appropriate way, a patient must first be able to fully appreciate the choices that are before him or her, and their consequences, before he or she can weigh them. Under the appreciation standard. the patient's whole personal history is seen as the context in which he or she makes immediate choices regarding treatment. Under the appreciation standard, then, the patient is expressing a choice that refers to his or her experience, values, desires; a true expression of an entire self. Thus, in the present case, when the patient refuses interventions she has agreed to in the past, it is reasonable to ask whether this choice expresses her underlying values, goals, and identity, and whether she wishes to live according to the same values, goals, and identity she has had up to now.
This discussion leads us to three public-policy questions for those who wish to help patients make truly authentic choices.
Currently it is difficult to provide waiting periods for hospitalized patients who refuse treatment or consultation, during which they may reconsider and "work through" their decisions. Such in-hospital waiting periods are typically categorized as "no treatment" by third-party healthcare reviewers. Yet, discharging these patients from a hospital to a lower level of care will often hurt them. Offering patients time to make important decisions is a legitimate part of medical treatment, and clinicians should be reimbursed for the time and skill they put into this essential task.
Patients who are denied benefits need to know that they have recourse. Physicians must act as advocates for patients who fear their family resources will be depleted when they are denied healthcare benefits. Physicians need to be able to point to some realistic hope that further appeal will result in reversal of the decision to deny healthcare benefits.
The best hope for bringing the review process into line with clinical standards is for reviewers to be held to the same minimum standards of practice as clinicians are. The current split between clinicians who are responsible for meeting the standard of care and reviewers who have no responsibility for the liability that ensues from their actions is indefensible. Responsibility without authority leads to clinician helplessness; authority without responsibility leads to reviewer recklessness.
When a seriously or chronically ill patient is treated not by a clinician of choice, but only by those clinicians who are eligible for reimbursement by the patient's HMO or insurance plan, the result is an environment that hampers patients' ability to make autonomous, authentic, and coherent decisions. A remedy for this alienation has been proposed in the form of "any willing provider" legislation, which allows a patient to contract with any qualified clinician, independent of his or her insurance coverage. This open access to providers is especially important, and its absence is especially damaging, when a patient has previously been treated by the clinician of his or her choice. The fewer choices patients have, the greater is the likelihood that they will go all too gently into the night, lumped together into stereotyped categories such as "he/she is DNR."
If the treating clinician can build an alliance with a patient, and the psychiatrist performs his or her consultation in the best possible way, there is no reason for the consultation to be, or to remain, involuntary. Given sufficient time to build the alliance, the skilled medical clinician can nearly always give a patient the support he or she needs to accept a psychiatric consultation. In the rare instance when an involuntary psychiatric evaluation is ordered, a psychiatrist with the requisite training can nearly always elicit a patient's willing participation. There is much to be gained, then, from educating clinicians on how to make a psychiatric referral [19] and from educating psychiatric consultants on how to turn an involuntary assessment into a voluntary one.
The methods described here are intended for preventive as well as remedial use; they apply not only to medical patients with psychiatric disorders, but to any patient with chronic medical illness that requires heroic measures that may traumatize a patient. In the current rush to control costs via managed care, this insufficiently explored area of clinical ethics can no longer wait to be addressed.
The authors wish to thank their colleague, Thomas G. Gutheil, with whom they have enjoyed an enlightening dialogue since the inception of the Program in Psychiatry and the Law, and the other colleagues who have joined the program over the years.