By Dinah Miller, M.D.
Shelly walked slowly into my office, her husband by her side. She did everything slowly; in fact she barely moved, as if she was padded down by invisible weights. Shelly answered my questions — slowly — with as few words as possible. Her sister stayed in the waiting room with the couple’s newborn daughter.
Tom did most of the talking. His wife, he told me, had become depressed soon after she and the baby came home from the hospital. They didn’t know where to turn for help, so they went to the emergency department, where Shelly was admitted to a psychiatric hospital. At this reference, she began to weep. It had been awful to be away from her new baby, and she was still focused on her guilt for leaving her infant. She’d stayed in the hospital for a week; the doctors at the facility started her on an antidepressant — paroxetine, an SSRI (selective serotonin reuptake inhibitor) similar to Prozac — and two anti-psychotic medications. She was not paranoid or dangerous, but she had been hearing things that other people were not hearing: honking horns, thunder, and bells. Shelly was terribly ill, and even after being treated in the hospital, she was in no condition to take care of herself, much less meet the many needs of a new baby.
At first, our sessions were short because Shelly didn’t talk very much. She was able to drive herself to the sessions, and her family helped with childcare. But as time went by, Shelly got better. I stopped one antipsychotic, and then the other, but she continued to take paroxetine, and within a few months she was back to her old self. She came to appointments and talked about her life, her family and friends, and her concerns about raising a healthy and happy baby. She returned to work and to the normal routines of a young mother. You would never have guessed that Shelly had ever been so ill. Post-partum depression can be devastating, and this episode certainly was, so everyone was relieved when Shelly made a fun recovery.
At this point in her recovery, I faced a difficult decision. It’s a decision psychiatrists face constantly: When should I stop prescribing medication to my patient? A lot of noise is made about over-medication in our larger culture, and I certainly am sensitive to these concerns. But deciding when to stop a psychiatric prescription is a complicated question with a range of factors to consider.
No one likes to take pills. We worry about side effects, the unknown long-term consequences, and they serve as a reminder that we are not fully well. And as doctors, we want our patients to take the lowest possible effective dosage of the fewest possible medicines, especially as they get older and become more vulnerable to side effects. But knowing the exact right amount of medicine is not as easy as it may seem.
Patients come to see me for one of two reasons: they are either in an acute state of distress and looking for relief, or they have had to change doctors for a logistical reason and are looking to maintain ongoing care. Because I am a psychiatrist and can prescribe medications, most — but not all — of the people who come through my door are interested in treatment with medications.
Let me walk you through my thinking for a patient who comes in distress.
When a psychiatrist first sees a patient, we typically ask a lot of questions. This evaluation is meant to determine if the patient has a psychiatric disorder, to form a differential diagnosis, and to consider what treatments might be helpful. At times, a patient’s psychic pain is so intense as to feel tangible to me across the room. I sometimes say they are in so much pain that “the room hurts,” as it did in Shelly’s case, and it may take all they have to get to the appointment, much less to work or to the gym. Others are able to maintain their normal activities despite their inner turmoil, but their illness may still leave them with anguish and a wish to have it all end.
The choice to prescribe a medication is influenced by many things, including the severity of the symptoms, the desire of the patient, and the urgency to relieve symptoms. Sometimes, I prescribe medications that will immediately relieve some symptoms (such as agitation or insomnia), while also prescribing medications that may take longer to work. I may also recommend that a patient address lifestyle issues such as diet, exercise, substance use, and social support. But when a person is suffering, it often does not make sense to suggest they try these measures before medication. The rush to get better often does not give us the luxury of time for trial and error, and concerns safety are always present.
When a patient starts medication, we hope for the best. Ideally, the first medication works, the patient gets better, and they don’t suffer any side effects. Sometimes the medication does not work and we have to try another, or the medication has intolerable side effects. It can take weeks to months (or longer) to come up with a medication regimen that is both effective and tolerable, and during that time the patient can engage in psychotherapy, as well as other activities to support both recovery and personal growth.
The decision to stop a medication — to “deprescribe” — is often difficult as well. For a first episode of major depression, we like to wait until the patient has felt well for 9–12 months, then start to taper off the medications. The patient may not want to do this. Some patients, especially those taking effective medications without side effects, will say, “I never want to feel that way again.” If there is no obvious long-term risk to the medication, this should be the patient’s decision. Unfortunately, “pill shaming,” where people are hearing that psychiatric medications are unnecessary or even dangerous, is now a factor in our current environment.
For those patients who have serious episodes of psychiatric distress — severe enough to require hospitalization, to prevent them from working for an extended period, or that entailed a suicide attempt — continuing medication indefinitely may make sense, because the risk of relapse comes at too high a cost. For those who have repeatedly stopped medications only to relapse each time, we may also recommend lifelong treatment. Often, longitudinal studies can help inform our decisions.
For example, we know that if a patient has already had a psychotic episode due to a psychiatric disorder such as schizophrenia, they have a 90% chance of experiencing another episode without continued medication. We also know these episodes of psychosis are not benign. During these episodes, people may do things that cause injury to their careers and their relationships, the episodes may take a long time to resolve, and some people never return to their baseline. Instructing a patient to stop an antipsychotic may be a little like playing Russian roulette with their lives.
When Shelly began talking about another pregnancy, I had a lot to consider. She’d only had one episode of mental illness, but it was a severe episode, and it was in the post-partum period. If Shelly had wanted to stay on medication, I would have switched her to another SSRI with a better safety profile than paroxetine. Instead, I decided to see if we could stop Shelly’s medication while she and her husband tried to conceive and for the duration of the subsequent pregnancy, with the idea that I would have a very low threshold for starting another medication if Shelly started having symptoms of depression.
Shelly’s pregnancy went smoothly, and the next decision point came when Shelly was getting ready to deliver. The risk of recurrent post-partum depression is 50%, an extremely high risk for what can potentially be an extremely dangerous condition. I should mention again that during Shelly’s initial episode of post-partum depression, she had heard sounds that other people were not hearing, and since she experienced hallucinations and a profound inability to function, she was diagnosed with post-partum depression with psychosis. When I broached the topic with Shelly, she was quite clear she wanted to go back on the medication. a coin-toss risk of another post-partum depression was not worth risking, I didn’t want to gamble with the life that Shelly had worked so hard to rebuild.
Shelly and her children thrived, and I wondered if Shelly needed to be on an anti-depressant anymore after the post-partum period ended. She did not want any more children, and so there were no more post-partum episodes to consider. I talked with her about going off the medication, and she agreed; she did not feel like she needed it anymore.
A week later, Shelly called me — she was not feeling well, she had cold symptoms and an odd sense that her equilibrium was off. It could have just been a virus, but I told her there was a chance she was having withdrawal symptoms from stopping the medication. I instructed her to take one of the pills. Soon after she was feeling better, and we had now defined that we had stopped the medication too quickly. A slower taper was more successful – Shelly got off of paroxetine and seemed to do well.
Here’s where things get tricky, and where the pill shamers might pass judgment. At some point, Shelly asked to go back on paroxetine. She didn’t have the symptoms of depression, or any other psychiatric disorder for that matter. She simply said that she had felt better on it. When I pressed her, she said she felt calmer while taking the medication and that without it she felt a bit anxious. She was not having trouble functioning, she wasn’t miserable; she just felt more resilient on a low dose of the medicine, especially during some of life's harder patches.
Psychiatrists want people to meet criteria for a psychiatric disorder if we’re going to prescribe a medicine — we don’t give pills to everyone who feels a little sad or anxious. So whose choice is this? This might have been a time to suggest more exercise, cutting out processed foods, and improving socialization. Is this what a working mother of young children wants to be told, one who is already slim, active, and very conscious of keeping a healthy lifestyle, not just for herself but for her whole family?
Stopping medications is about risk. No psychiatrist wants people to take medications they don’t need, but we don’t have crystal balls. Often, the only way we can know if someone “needs” a medication is to stop it and see if they get sick. The results can be catastrophic, so sometimes we play it safe and decide that if someone is doing well on medication, then it’s not worth the risk of trying to fix what isn’t broken. The result may be that some people remain on medications they may not need.
I wrote the prescription then, and I continue to write it now. Shelly got through menopause without getting depressed, and both she and her family continue to thrive. The children are doing well in college, while she and Tom negotiate life as empty-nesters.
If one day she decides she does not want to take the medication anymore, I will be fully supportive. Psychiatrists, if we are lucky, have the benefit of watching real people over decades, for better or for worse. All such stories are not happy ones, but this one is.
Dinah Miller is a psychiatrist and writer in Baltimore, Maryland. She is on faculty at Johns Hopkins School of Medicine and is the co-author of Committed: The Battle Over Involuntary Psychiatric Care (Johns Hopkins University Press).
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