Shared Decision Making in the Treatment of Psychosis: Page 3 of 3
Shared Decision Making in the Treatment of Psychosis: Page 3 of 3
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
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.
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