Primum Non Nocere
Is Treating Someone’s Delusions Ever the Wrong Thing to do?
by J P Sutherland
Gabriela Sabatini was not only one of the top-tier tennis players of the 1990s, but she was blessed with a natural beauty that drew cameras to her like butterflies to wild bergamot. So, it was no surprise that her fame spread far beyond the tennis court to make her for a while one of the most recognized women in the world.
What was more surprising was hearing that she had secretly married one of my patients, a young man called Jacob, who suffered from schizophrenia. Since my informant was Jacob himself, I had the opportunity to comment.
“Surely not?” was my initial, and understandable, reaction.
“Yep,” he smiled. “Gabriela Sabatini.”
“The tennis star?”
“Yep. Want to see a picture?”
“Sure.” I answered, grateful for a moment to gather my thoughts, rather than trailing behind him in the unexpected direction that this interview was taking.
When Freud wrote about wish-fulfillment he was initially talking about dreams, but since he elsewhere noted the many similarities between dreams and psychosis, I have no difficulty in picturing him nodding wisely at Jacob’s choice of delusion.
As he reached for his wallet, I took a fresh look at him. Tall and thin, Jacob had the characteristic poor grooming of someone afflicted with severe mental illness. His hair hadn’t seen a comb in some time, and his shirt could have used an iron, and probably a wash as well. I first met him when he turned eighteen, and a child psychiatrist colleague of mine had handed him over into my care. Jacob’s schizophrenia had begun to manifest itself while he was still in high school, starting its slow and relentless erosion of the path he had wanted to take in life. Since I had known him, things had only worsened, as one treatment after another had failed to help. Now, at just twenty-three, he had already endured enough hospitalizations to add up to a couple of years of his short life spent within the limiting confines of a psychiatry ward.
Jacob’s usual expression was puzzled and serious, as is normal for people who are struggling to understand their extraordinary experiences of delusions. But now it changed. As he brought out a magazine picture of Gabriela to show me he beamed, and I was struck by the thought that he looked even happier than she did.
“There,” he said, pushing the photograph towards me. “Gabriela Sabatini. I told you.”
“You certainly did. How did you two connect?”
He frowned.
“It’s complicated.”
“Did you go abroad to meet her, or did she come here?”
“It’s not like that, but we are married.”
Now he reverted to the Jacob I knew better, perplexed and unhappy at his inability to fully understand his reality and how it didn’t align with anyone else’s understanding of the world. He told me that he and Gabriela hadn’t met, at least not according to the normal meaning of the word, and nor did he hear her talking to him, as I thought he would in a hallucinatory fashion. But he knew, and knew with the fixed certainty of a delusion, that she was with him, and he felt great comfort from that.
I decided that I didn’t need to challenge his belief any further, since the diagnosis was already clear. We never advise anyone to endorse a psychotic patient’s delusions, and so I ended our session with a comment that I hoped was sufficiently empathetic without actually agreeing with him.
“Gabriela Sabatini,” I smiled, “who would have thought it?”
“I know.” He smiled back. “I’m married!”
Delusions come in various forms, and if people think about psychosis at all, then they likely imagine someone with either a paranoid delusion, believing that they are being followed and threatened, or having a grandiose delusion such as believing that they are a reincarnation of a famous historical figure. But delusions are uninvited guests that wear many other coats – nihilistic, somatic, jealous, and in Jacob’s case erotomanic.
An erotomanic delusion is defined as the belief that one is loved by someone who is distant and who has shown no interest in the individual, if they are even aware of them. It’s not unusual for famous people to be the object of erotomanic attraction, meaning that Jacob’s choice of Gabriela as his bride wasn’t really so surprising. It also fitted and offset the sad reality of his disabled life. Schizophrenia had deprived him of his ability to work, or to live alone. But he was still a young man, with all the usual longings and desires, though there was now little likelihood of him ever achieving a normal relationship. So, if he was going to be delusionally married, then why should it not be to the most beautiful woman of the moment? When Freud wrote about wish-fulfillment he was initially talking about dreams, but since he elsewhere noted the many similarities between dreams and psychosis, I have no difficulty in picturing him nodding wisely at Jacob’s choice of delusion.
“Jacob, we should talk about a treatment called clozapine.”
“I’ve heard of that,” he said, “isn’t it dangerous?”
“That’s what I wanted to talk about. For someone like you, who has had such bad luck with treatments so far, it represents the best chance of recovering from your delusions, and it helps about one person in three who takes it.”
“What delusions?” he asked.
“Things like owning that plane that you used to talk about, or being someone else called Timothy,” I said, deliberately referencing his older symptoms rather than further challenging him about Gabriela.
“That plane thing was just a misunderstanding, but I really am Timothy Grenville.”
“We disagree about some of these things, Jacob, and that’s OK,” I added, bravely avoiding an argument. “But schizophrenia is not only giving you delusions, it is getting you hospitalized repeatedly. If we can find a treatment that works for you, then you might be able to stay out of psychiatry wards in future.”
“I’d like that. But what’s the danger?”
“Right. Clozapine was first introduced years ago. It was found to be effective when nothing else had worked, but in about one percent of people taking it there was a serious problem with the white blood cells.”
“How serious?”
“Serious enough that some people died.”
“I don’t think I want that.”
“Me neither. The drug was taken off the market, and it’s only been allowed back again if everyone taking clozapine gets a weekly blood test. This picks up the white cell problem before it causes any harm. Then clozapine would have to be stopped, but the bone marrow would recover, and the blood count would return to normal. No-one has died since they brought in this new system, and a third of people recover from their delusions.”
“I don’t know.”
“Fair enough. Let me get you some pamphlets about clozapine, and then we can talk again tomorrow. And if you ask around on the unit you may find some other patients who know the drug and have benefitted from it.”
It took a while, but he finally gave consent. His parents were strongly in favor of anything that might finally release him from his psychosis, and pressured him to agree. But that made little difference to Jacob, who couldn’t see why anyone should worry about his name or his marriage. However, the thought of finding a treatment that would let him step off the carousel of repeated hospitalizations was a major factor in his final decision. And the support of people on the unit helped persuade him that the dangers were controllable. At that time there were a couple of other inpatients who had benefitted from this complicated treatment of last resort. And although my advice to take clozapine was sound, it carried little weight compared to the recommendation from those who had walked in Jacob’s shoes, carrying their own burden of illness, to which he could instinctively relate. I thanked them for their help, set up the treatment protocol, and guided Jacob successfully through the startup period. Then, before we would expect clozapine to yield any positive results, my annual holiday arrived.
“Have a good trip,” said Jacob, looking like he was forcing out the polite words, after I had explained my forthcoming absence. “What’s the doctor like, who is taking over?”
“Dr Wong? Oh, she’s nice, and she’s just going to proceed in the way we’ve already agreed. By the time I get back we will be able to see how the clozapine is doing.”
“OK. But I’d prefer if you stayed.”
Then I somewhat guiltily swapped the stark, closed sights of the inpatient unit for the sunlit alpine meadows of the mountains. Restored by the long views and fresh air, I only occasionally thought of work, but when I did I found myself worrying about Jacob. Clozapine represented his last best opportunity for even the most limited recovery, and yet he was statistically more likely to fail this treatment trial than he was to actually improve. Then, after a while spent lamenting the blind unfairness of all medical suffering, I shouldered my pack again and headed off up the trail.
My first day back at work started with a long case conference before I got to see any of my patients. As we got closer to discussing Jacob, I felt myself tensing.
“He’s done well,” said Gladys Wong. “We had no problems titrating the dose to four hundred milligrams, and his delusions are definitely fading.”
“That’s great news.”
“Yes, but you better see him before you get too pleased. I think he’s depressed.”
I would not have thought that someone could wail quietly and slowly, yet that’s what I heard.
As soon as the meeting was over, I headed out to look for him. Jacob had usually sat in the open area of the ward, ready to talk to anyone who passed, though people often stayed only briefly because he tired listeners with his delusional conversation. But today he was nowhere to be seen.
I found him in his room, lying motionless on his bed, and staring at the ceiling.
“Hi Jacob. I’m back. How are you doing?”
Silence followed, with not even a look in my direction.
“I’ve been told that clozapine has been helpful, but I want to hear all about it from you.”
Still he lay, immobile and mute, consistent with Dr Wong’s worries about depression. And then he finally stirred, sluggishly but so painfully. I would not have thought that someone could wail quietly and slowly, yet that’s what I heard.
“I want Gabriela!”
I sat down.
“Tell me what’s up.”
“She’s gone!”
“Well yes,” I replied clumsily, “she was a delusion, Jacob.”
“No! She was my wife!”
Realizing my error in assuming his insight, I backtracked as fast as I could.
“I’m sorry. I remember how she made you so happy. Tell me what’s changed.”
“I always knew she was there. I know she never talked, but she guided my thinking, and helped me decide things. I wasn’t alone with her.”
“And now?”
“Nothing. It’s just like it was before she came.”
I sat longer, hearing more of his despair, while also quietly counting up enough symptoms of depression to make the diagnosis. He agreed to start an antidepressant, but while I knew that should likely help him, I was troubled that his low mood was so obviously a reaction to the loss of his delusional marriage that mere pharmacotherapy wouldn’t be enough.
“Is treating someone’s delusions ever the wrong thing to do?” I asked our morning meeting. “I’m thinking about Jacob.”
“Of course it’s not wrong,” replied Gladys. “You’ve spent years trying to help him, and now we’re finally getting somewhere with clozapine.”
“But he seems bereft after we removed his wife, even if she was a delusion.”
“He’s just depressed. That’s not so uncommon in the aftermath of psychosis. It will get better with treatment.”
“But will it? He’s already been unresponsive to all sorts of drugs. And anyway, if the cause of his depression is more psychosocial than biological, who says it will respond to medication?”
Gladys answered by referencing the studies that had shown antidepressants helping even in depressions that were an obvious reaction to external stresses. Small and determined, I knew her to be an excellent psychiatrist, but she possessed a certainty about our profession that I knew I would never share. I had read the research findings that she mentioned, but I had nonetheless never thought that altering brain chemistry could be a full response to life’s misfortunes, even if it did make some difference. Psychotherapy would be my treatment of choice for individuals dealing with a relationship breakdown, even if I wasn’t sure quite how to proceed with that if the absent partner wasn’t real.
“Anyway,” added George, our most senior and pragmatic colleague, “if he consents to the treatment then that’s all the answer you need. If he’s determined to have his wife back, then he’ll stop his medication at the first opportunity.”
Although this completely avoided my question, I knew that he was probably right, but I was still young enough in my career to be shaken by the discovery of unwanted consequences to well-intentioned acts. There was no doubt in the short term that we should continue his treatment, with the added antidepressant, and allow time and therapy to help him adjust to his new reality. But knowing how to proceed didn’t free me from my concern that Jacob might not respond, and withdrawing Gabriela from his internal life might yet prove to be more wrong than right.
A full treatment of someone’s schizophrenia often involves a period of rehabilitation after psychotic symptoms have remitted. This is especially true in someone whose illness began in their teens, such as Jacob. Adolescence is a time of great development for social skills, and the practical management of life’s daily requirements, so that if a patient spends their formative years fighting against severe illness, then they often emerge with a very limited ability to resume a normal life and engage with the world. Rehab programs address this, and the centers are often residential, and located outside major cities. We had booked a place at one such center for Jacob when his clozapine trial began. Now that a spot had become available there was some debate about whether he was still appropriate since he was depressed, but eventually the rehab team accepted him. His delusions had continued to diminish, but there was no letup in his mood, or his grieving for Gabriela. I tried to encourage him with positive expectations for the benefits that this next treatment step would bring, but nothing appeared to touch him, and he left the unit with his head bowed low and without making eye contact.
Then I didn’t see Jacob again for many months, because rehabilitation in psychiatry is such a slow and gradual process. The alpine meadows were now inaccessibly cloaked in snow, and so I took my brief respites from the city on quiet ski trails in isolated valleys. On my summer visit to the mountains I had worried about whether Jacob would respond to clozapine, but now I was second-guessing myself about whether we should have even tried, and whether it would have been better to leave him in psychosis, with the solace of his delusional wife.
Seeing a recovery such as Jacob’s is pure balm for psychiatrists
When we next met, as another spring unfolded and he returned to the city, I had to look twice. Jacob jumped up quickly from his chair in the waiting room and shook my hand, smiling with apparent pleasure at the reunion. Once in my office I stood back and looked anew. Gone were the crumpled clothes of last year, that managed to look dirty even when just laundered. He was dressed casually, in jeans and flannel shirt, but looked tidy and groomed. All too often schizophrenia announces itself in someone’s appearance even when viewed from afar, but no one would now think that this young man carried such a severe diagnosis. He noted my inspection of him.
“Looking good, eh?”
“Jacob, you really are.”
“And I feel good too.”
“Have a seat and tell me all about it.”
“I have a job.”
“That’s wonderful.”
“It’s with ‘Placido the Plantman’. We look after office plants. Do you know that a cactus only needs water once a month?”
I was so pleased, since I knew the company that he was describing, and how they welcomed people with disabilities. They only offered minimum wage positions, but the pay cheque that would leave him just above the poverty line also came with the priceless benefits of a sense of purpose and belonging, things that his schizophrenia had looked set to deny him. Seeing a recovery such as Jacob’s is pure balm for psychiatrists, and keeps us all going through the day-to-day difficulties of others’ treatments, and his improvement was all the more remarkable for having come after so many treatment failures. He told me how he no longer believed in a second identity for himself, and he appeared to have recovered more than I had ever allowed myself to hope for him.
And there I should have left it. But, prompted by his wellness in so many domains of life, I foolishly asked about relationships. His face fell, and he shook his head. And as he spoke, suddenly holding back tears, all my ethical doubts about his treatment resurfaced.
“I can’t believe Gabriela is dating someone else.”
“Donald Trump, isn’t it?”
“Yes. I miss her so much. Why did she leave me?”
All names and other identifying details have been changed to protect patient confidentiality.
This story was first published in the journal Ars Medica.
JP Sutherland 