Shared Decision Making in the Treatment of Psychosis

There seems to be a disconnect between psychiatrists and their patients around prescribing antipsychotic medications in early-episode psychosis and schizophrenia: psychiatrists tend to prescribe antipsychotics, confident that they are essential, while patients discontinue them-often surreptitiously-at very high rates.¹ The psychiatrists’ stance is understandable. Antipsychotics have repeatedly been demonstrated to improve positive psychotic symptoms. Moreover, the toxicity of these agents, particularly second-generation antipsychotics, is not grave over the short term. By diminishing positive symptoms, antipsychotics may help the patient preserve his or her social role and minimize the stigma associated with psychotic behavior. Moreover, the psychiatrist may fear a charge of malpractice if effective treatment is withheld. These ideas are reinforced by the day-to-day experience of real patients who experience improved outcomes.

Yet patients are often reluctant to take antipsychotics. Some say that the medications do not deliver the proffered benefits, that they make them feel as if something essential were deadened inside, and that they hate taking them. Many patients seem to feel that they were not involved in the decision-making process to begin medications and thus the prescription was not consensual. While there may have been discussion about which medications to use, the option of delaying or not taking them at all is rarely discussed.² Initial experiences with antipsychotics are embittering for some patients and can harden their resistance to pharmacotherapy in general, which can seriously complicate treatment.

Eventually, some patients find salutary antipsychotics that are use-ful to their recovery; others seem to be caught in a cycle of prescription, nonadherence, and relapse. There is also a minority-not a large group but not insignificant-who do well without antipsychotics.³ It may be argued that at least some of these patients do well because they avoid antipsychotics.⁴

One way to improve this unsatisfactory misalignment between doctors and patients is to apply principles of shared decision making to whether and when to begin anti­psychotics, not just about which one to use. Shared decision making is a foundational principle of patient-centered care and a key element in the transformation of the mental health system. Increasingly, shared decision making is the gold standard in clinical practice. The Substance Abuse and Mental Health Services Administration (SAMHSA) has recently promulgated tools for practitioners, patients, and family supports in making shared decisions about all aspects of care, including whether to take psychiatric medications.⁵

A recent editorial in theBritish Journal of Psychiatry recommended offering patients a real option of deferring or avoiding antipsychotics in psychotic states.⁶ Psychiatrists vary in their eagerness to adopt such permissive practices; some believe that adherence is paramount and paternalism is often necessary to prevent loss of insight with consequent impaired judgment and functional decline. Our bias is to adopt a radically more collaborative style.

What new information does this article provide?

• Extends the use of shared decision making with people with psychosis to whether and when to use antipsychotic medications

• Raises critical questions about the underlying assumptions that lead to early and sustained use of antipsychotics

• Provides guidelines for collaborative shared decision making in psychotic states

• Provides principles for safety for patients, doctors, and others in delaying or minimizing antipsychotic medications

What are the implications for psychiatric practice?

If conditions for ensuring safety permit, entertaining shared decision making about whether and when to use antipsychotics may promote alliance and decrease polarization between doctor and patient.

Challenges in implementing shared decision making

We hope this collaborative approach will catch on. However, apart from the fact that these are new recom­mendations and there is a predict-able lag between emerging best practices and standard care, psychiatrists face several hurdles in deciding whether to entertain discussion about the use of antipsychotics in early-episode psychosis and schizophrenia. Currently, for many psychiatrists, watchful waiting before starting antipsychotic therapy for patients expe­riencing psychotic symptoms is not a viable option. Unless the doctor can envision some legitimate benefit to the patient involving watchful wait-ing, medication delay, or minimization, it is understandable that he or she either offer no such option or inform the patient and family that he cannot in good conscience sanction such a clinical approach. Some of the barriers to envisioning such a clinical pathway are conceptual, some prac­tical. Some of these hurdles may be summarized as follows:

• A high degree of faith in the efficacy of antipsychotic agents, both to decrease positive symptoms in the short term and to bend the clinical course toward better long-term outcomes

• A concomitant pessimism about the natural course of psychotic illness, conceptualizing schizophrenia as a progressive neurodevel­opmental disease with a grim outcome, without sustained antipsychotic use^7,8

• A belief that psychosis is inherently neurotoxic, akin to “kindling” in epilepsy, and that antipsychotic medications are neuroprotective^9,10

• A corollary belief that the greater the duration of untreated psychosis (DUP), the greater the damage and the harder it will be to accomplish remission¹¹

• A sense that many patients who are psychotic are ipso facto unable to engage in true shared decision making and that anosognosia blinds the patient to the true nature of the condition to be treated and to the dangers of nontreatment¹²

• A belief that it is too dangerous and/or impractical to delay treatment: trying to maintain a patient in the community who is acutely psychotic would be impossible for most office-based practitioners, and delaying treatment while the patient is hospitalized would not be supported by most insurers

Uncritical acceptance of these perspectives may cause psychiatrists to advocate for antipsychotics too zealously. Knowing that one of the greatest perceived obstacles to recovery is nonadherence, doctors may be less candid with patients at the beginning of their illness about the drawbacks and downsides of antipsychotic medications and not offer delaying or minimizing medications as a real option, for fear of reinforcing doubt and denial of illness.

Questioning our assumptions about antipsychotics

These are complex issues and defy brief exegesis. However, for pur-poses of framing the clinical problem of sharing decisions about the use of antipsychotic agents, the following ideas may be salient.

As helpful as antipsychotics can be for individual patients, there is no way to predict who will benefit or how much. Adherence to antipsychotic regimens does not guarantee recovery. While short-term use of antipsychotics poses little risk, long-term use poses significant risk of toxicity. These are powerful medications, with potential for great benefit and great harm. On the other hand, since there is no way to predict whom these medications will most benefit, the loss of opportunity for not trying them can be profound.

The natural clinical course of early episode psychosis and schizophrenia is not as grim or unitary as many clin­ical psychiatrists may believe. In part, this is because the diagnosis is so heterogeneous: it is possible to receive the diagnosis with or without cognitive decline, disorganization, mood changes, apathy, or even current psychosis. While psychiatrists tend to urge all patients with psychotic symptoms to take medication, patients with psychosis actually vary in pathology, prognosis, and treatment response. For those of us who work in clinical settings where we serve people with chronic, severe mental illness, the “clinician’s illusion” is particularly powerful: we may generalize from the worst outcomes.¹³

The few long-term studies that track such outcomes suggest that a substantial number of patients achieve a course of intermittent illness with periods of good functioning, and some achieve very substantial recovery. The findings require replication, but one long-term study suggests that the best outcomes may involve clinical paths away from ongoing treatment, including pharmacotherapy.^3,14 Some clinical programs, including Mosher’s Soteria House¹⁵ and, more currently, Open Dialogue in Finland,¹⁶ have shown promising outcomes for some psychotic patients while de-emphasizing or delaying the use of neuroleptics. This is not to say that the best path is not to take antipsychotic medications if one is psychotic; it is to say that the paths to recovery are various, as are the paths to chronicity. What is best for each patient is a matter of clinical art, personal choice, and negotiation.

Evidence that antipsychotics are neuroprotective is actually rather scant-and complex. On the contrary, some evidence suggests that progressive brain loss in schizophrenia correlates with medication exposure rather than with disease progression.¹⁷ While discontinuing antipsychotics almost uniformly results in relapse, it has been suggested that antipsychotics may predispose to relapse through dopamine hypersensitivity.^18,19 Early intervention programs-including preemptive treatment of patients at high risk for schizophrenia-have not materially shifted long-term outcomes.^20,21 Again, this is not to say that one should not opt for the use of antipsychotics very early in the clinical course; it is to say that reasonable people could disagree about whether to use antipsychotics in individual cases, depending on the values and preferences of the patient and family.

The issue of DUP is vexing. Certainly, it seems sensible that the earlier one intervenes in a psychotic illness, the better the outcome, and the literature does seem to support this conclusion.^22,23 However, these studies are confounded by the fact that people who come to early attention (and therefore have shorter DUPs) may be clinically distinct from people who come to attention later.²⁴ Balancing the urgency to decrease DUP in the question of immediate use of antipsychotics are the thoughtful studies of Bola and colleagues²⁵ that suggest that delays for up to 6 weeks are not harmful. These studies support the idea that “watchful waiting” and taking time for collaboration around medication use does not in itself prejudice the clinical course.

Impaired insight certainly complicates management and impacts shared decision making. We acknowledge that with some patients, meaningful shared decision making is all but impossible: for example, patients with dense denial of their difficulties or the difficulties their behavior causes others, particularly when combined with serious risk factors. With these patients, treating the person with dignity and respecting his rights and choices in so far as possible may be the best that can be hoped for while awaiting greater clarity to permit shared decision making.

However, psychotic symptoms do not preclude participation in a process of informed consent about treatment and other matters.²⁶ Artful and caring doctors know how to find and meet the person in the patient and to have collaborative discussions about all sorts of matters of critical importance, including whether to take medications.²⁷ Patients may opt for antipsychotic medications because they perceive them to be beneficial for reasons that have little to do with the doctor’s understanding or intent.²⁸ Similar decision making may apply to medication refusal.

There is no doubt that people with psychoses sometimes commit terrible acts of violence to themselves or others, and this understandably influences our decision to medicate. Clearly, in the presence of substantial risk factors such as command hallucinations with impulses to self-injury or violence toward others, safety becomes the paramount concern and trumps most other considerations. However, for patients who do not pose such risks, watchful waiting and shared decision making can be used if some of the following elements are in place:

• A supportive social network that partners with the psychiatrist and the patient during the time of decision making

• A 24-hour crisis team that can enact a previously designed collaborative crisis plan that anticipates difficulties, with the input and buy-in of the patient and his support system

• An ability to move quickly to higher (more intensive) levels of care if the situation deteriorates

Table

Pros and cons of immediate vs delayed antipsychotic medication

^a

With these tools and ideas in mind, psychiatrists-especially those who practice as part of an integrated team capable of offering wrap-around services to acutely psychotic patients-may be able to safely engage in a process of shared decision making with patients and families during a period of “watchful waiting,” using the tools developed by SAMHSA and others (Table).

With collaborative shared decision making from the very start, we may bend the clinical course at least away from the alienated and polarized position in which many patients find themselves and, hopefully, find pathways that involve patients as active and empowered partners in their treatment.

References:

References

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