How do you navigate chronic delusions to provide effective medical care?

Ms. Wren, an 80-year-old woman with heart failure and diabetes, was recently hospitalized for a heart failure exacerbation. She has been on your panel for a year, but you have not met her. The inpatient notes describe her as having chronic fixed paranoid delusions of a man who follows her and occasionally threatens to kill her. She has no family or friends. She declined psychotropic medications throughout the hospitalization, even when framed as medications to help anxiety or fear. She declined admission to a skilled nursing facility (SNF) after hospitalization, because she thought this man would follow her there. She also declined home support, as she didn’t trust anyone new in her home. She was evaluated by psychiatry, diagnosed with delusional disorder, and deemed to have the capacity to refuse follow-up medical care.

You were able to connect with Ms. Wren multiple times by zoom after her hospitalization. A home health nurse helped her connect to your video appointments and checked her vital signs. Your visits were brief. Ms. Wren talked mainly about feeling scared, and you encouraged her to take her medications and tried to arrange specialty care. Unfortunately, the home health agency discharged her, and then you lost contact. Efforts to involve Adult Protective Services (APS) were unsuccessful. A few months later, you received a phone call from the coroner’s office to sign Ms. Wren’s death certificate. She had died of cardiac arrest.

It can be incredibly painful to sit with a patient who is declining medical care due to a delusion, particularly when the medical treatment is highly effective. We start to visualize the patient’s death. It seems preventable, if only they understood. People with severe alcohol use disorder elicit the same feelings in me – we visualize the eventual death, either suddenly from accidental trauma or slowly from cirrhosis, and think, if only they could stop drinking.  

An approach to navigating chronic delusions when providing medical care

Chronic delusions are symptoms of multiple disorders, including schizophrenia and schizoaffective disorder. Ms. Wren had delusional disorder, which affects 0.2% of the population and commonly presents in middle age. Delusional disorder is defined by having one or more delusions that persist for at least a month. People with delusional disorder are not disorganized. If they have hallucinations, they are not prominent and are related to the content of the delusion. People with delusional disorder often hold jobs and function normally when they aren’t discussing or acting on the delusion. Unfortunately, chronic delusions can become life threatening when they prevent necessary medical care.

Sometimes the truth sounds delusional – When meeting a new patient, it’s prudent to confirm that there isn’t actually a man following them, or a landlord doing creepy, illegal things. If doubts arise, I ask for the patient’s permission to chat briefly with someone who knows them well.

Keep showing up – The therapeutic alliance underpins all medical care. It takes much longer to build a therapeutic alliance when a patient is suspicious or distrusting. Listen empathically to a patient’s experience, including the detailed account of the man who is following them. Early in the relationship, focus on solving tangible problems that the patient identifies, like arranging transportation to medical appointments or addressing food insecurity. Through consistent visits over months to years, a robust therapeutic alliance can gradually develop that allows a patient to accept medical suggestions from you. Transitions to other providers are likely to be particularly challenging for patients with chronic delusions.

Understand more about the delusion – Many patients will talk about their delusion in a first meeting. It’s ok to be curious about the experience.

  • Do you remember the first time [you felt like he was following you]? Can you tell me about that time?
  • How do you feel when [you get the sense that he is following you]?
  • What do you do when [you get the sense that he is following you]?
  • What percentage of the day do you spend thinking about this experience?

The last question is useful in gauging a response to treatment. When people are doing better, the time they spend thinking about the delusion decreases, say from 80% to 30%.

Don’t challenge a delusion with full conviction – How much a person believes a particular belief is called their conviction. A delusion held with full conviction is perceived as indisputably true by the individual. Delusions with full conviction are resistant to persuasion and attempts to prove otherwise are likely to alienate the patient. When people with chronic delusions improve with medications, therapy, or time, they rarely stop believing the delusion. Instead, the belief becomes less important, creating space in their lives for other things.

When a patient asks directly, “Do you believe me?’ respond truthfully without challenging the delusion.  Don’t tell the patient you believe them if you don’t. I usually validate the emotions associated with the delusions, which are true for both of us.

  • If Ms. Wren asked, “Do you believe me?” I might say, “I can see how terrified you are, always on the move to try to get away from him. You must be exhausted.”
  • If asked by another patient, “Do you believe me that he did that?” I might say, “I wasn’t there, but it is clear that you were hurt very badly by the experience.”

What do you do when your patient is refusing essential medical treatment because of their delusions? You continually switch back and forth between treating the psychiatric disorder and the medical disorder, even though both may seem impossible to treat.

How do we treat delusional disorder?

Antipsychotic medications can be effective in treating delusional disorder or delusions associated with schizophrenia or schizoaffective disorder. The response rate is lower in delusional disorder than in schizophrenia, with only one-third of patients having a significant response to antipsychotic medications (González-Rodríguez, 2022). If an antipsychotic medication is tried and doesn’t help the delusion, be sure to stop it. If a medication is effective, it should reduce the time a patient spends thinking about or acting on the delusion, or decrease the patient’s conviction about the belief. Progress can also be observed in clinic visits when patients spend less time talking about the delusion, bring it up later in the visit, or can more easily switch to other topics in conversation.

There are no published randomized controlled trials that address the question of which antipsychotic medication is best for delusional disorder. A recent cohort study of more than 9000 people with delusional disorder in Sweden found that treatment with antipsychotic medications improved functional outcomes. Overall, antipsychotic treatment for people with delusional disorder was associated with a reduced risk of work disability (Hazard Ratio (HR) 0.71, 95% Confidence Intervals (CIs) 0.57-0.90) and rehospitalization (HR 0.54, 95% CIs 0.38-0.77). Among the antipsychotic medications studied, clozapine and long-acting injectable formulations were the most effective medications, followed by aripiprazole and olanzapine, and then risperidone (Lähteenvuo 20221). I would generally start with a low-dose of either aripiprazole, risperidone, or olanzapine, beginning with the one the patient is willing to take.

The biggest challenge in treating delusional disorder with an antipsychotic medication is getting the patient to take the medication. Here’s the approach that I use.

I don’t ask a patient with delusional disorder to take medication for a delusion because then I become another person who doesn’t believe them. The patient and I agree that they are scared, depressed, anxious, agitated, or can’t sleep. We review what they’ve done so far – talked with lawyers, complained to the landlord, even moved apartments twice. I acknowledge that I don’t have any control over their situation (what their neighbors do, how the police respond, etc), but as a clinician, perhaps I can help with their anxiety or trouble sleeping, regardless of the cause. I can’t promise the medication will work, but it might be worth a try.

If they are amenable, I offer a low-dose of an antipsychotic medication with close follow-up. I tell them that the medication is in the antipsychotic class of medications. Several antipsychotics have been found to be effective for other issues, including mood (FDA approved), anxiety (off-label), and insomnia (off-label). I’m hopeful this medication will help their sleep (or anxiety), and they’ll have to let me know how it goes at our next appointment. 

Some patients, like Ms. Wren, will still say no. The problem is not her anxiety, the problem is the man stalking her.  But some people are amenable.

One small randomized controlled trial for cognitive behavioral therapy vs placebo in people with delusional disorder showed positive results (O’Connor, 2007). I encourage anyone with chronic delusions to connect with a therapist if they are willing and able.

How do we treat medical problems differently in someone with chronic delusions that are interfering?

  • Involve social supports earlier – If your patient is willing, invite a family member, friend, or support person to your appointments. Harness the trust that a patient has in that relationship to further medical care and encourage the family member to suggest ways to tailor medical interventions specifically for your patient. 
  • Be creative – On occasion, you may be able to work alongside the delusion. For example, if a patient’s delusion is that someone is poisoning their medication, you can tentatively offer bubble packing by the pharmacist as something that could prevent untoward tampering.   
  • Know the thresholds for involuntary medical care – If a patient with delusional disorder refuses medical care for an acute life-threatening illness due to the delusion, there may be a role for evaluating a patient’s capacity to refuse medical care. 

A note on documentation In the era of open notes, it’s too easy to accidentally destroy a tenuous therapeutic alliance by clicking delusional disorder, 99214, signed. This is the question “Do you believe me?” answered “NO” when the patient reads the chart. I document what the patient tells me in the chart, assuming that the patient will read it.  I use co-morbid diagnoses like insomnia, anxiety, and mood disorder as my billing codes and communicate directly with other physicians about the diagnostic impression of delusional disorder.


Key Points

  1. It takes much longer to build a therapeutic alliance when a patient is suspicious or distrusting, and it can seem impossible to improve the medical care of a patient with chronic delusions. Focus on empathic listening and solving tangible problems early in the relationship.
  2. For people with delusional disorder, an empirical trial of aripiprazole, risperidone, or olanzapine can be offered for a co-morbid condition like anxiety (aripiprazole, risperidone, and olanzapine) or insomnia (olanzapine, risperidone). Monitor the effect on both the co-morbid condition and the chronic delusion. Therapy can also be helpful.
  3. Be mindful of unintended consequences of routine medical documentation and provider transitions for people with chronic delusions.

Related PsychSnaps:
When a young adult is hearing voices and psychiatry is unavailable for months, how can you help? (parts 1 & 2) Emma Samelson-Jones, Aug 2023


References:

González-Rodríguez, Alexandre, et al. “Seventy years of treating delusional disorder with antipsychotics: A historical perspective.” Biomedicines 10.12 (2022): 3281.

Lähteenvuo, Markku, et al. “Effectiveness of pharmacotherapies for delusional disorder in a Swedish national cohort of 9076 patients.” Schizophrenia Research 228 (2021): 367-372.

O’Connor, Kieron, et al. “Treating delusional disorder: a comparison of cognitive-behavioural therapy and attention placebo control.” The Canadian Journal of Psychiatry 52.3 (2007): 182-190.


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