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Insider Notes
Over the decades of my career in the trenches of mental health, whether as a mobile crisis first responder, as a trauma therapist for an inner city health agency working with marginalized populations, or having a seat at the in-patient table with psychiatrists reviewing cases, the unsaid stories whispered in my confidence from hundreds of people who passed through my charge were repeatedly in dismay with the public portrayal of psychiatry as having the answers to treat major mental health disorders, successful with medications. Consumers are told that all they need to get back on their feet is to see their doctor and start taking medications. What many discover is a great disappointment. Not only is the efficacy of medicines marginally effective, but when emerging from the inner sanctum of a psychiatrist provider office, many folks walk away gravely disappointed under their breath with the speed of a diagnosis and prescription handed out, when the depth of grief from having a mental illness is not given its due consideration. For them, this is the great mismatch affecting their treatment confidence and their recovery psyche. Here are some of the major themes encountered from within depicting the limitations of medications.

From the Other Side
The following are insider snapshots from an acute care hospital mental health division, which I was an integral part of as a Peer Navigator for several years, depicting when medications fail.

I have witnessed the agony and tears of too many people to count who face the limits of drug prescribing after a multitude of medication failures. The significant number of suicide attempts, resigning to life on government assistance or limping along in life with work and family, has been sold as the new normal, or “baseline,” as psychiatrists like to say, knowing the unspoken inherent limitations of medications used.  This has been gut-wrenching for me to watch and witness. I know firsthand. My youngest brother lived with schizophrenia, repeated hospitalizations, countless medications, and repeated police calls until the day my youngest brother died with police at his side in my parent’s home because of his deteriorated psychiatric condition. I recall him many a time saying,” I don’t take my medications as it numbs me and makes me feel less human. He has also said, “I prefer to be tormented by my voice than take medications.

At another time, I was speaking to the head of psychiatry for a hospital. In response to our conversation, he declared that we (psychiatrists) are also human. He mentioned there have been many sleepless nights worrying over patients who are not responding to the medications and, in their eyes, are pleading for him to work his magic. In truth, he indicated his medicine bag is empty of tricks many times. I recall him saying, in his experience, “About one-third of treatment with medications helps patients, but the remaining two-thirds come from what they do in their lives.” He indicated how it pains him to know he has nothing else to offer except more medication. Yet, he declared, he has a professional duty to keep up appearances to keep his patient’s hopes alive, “I have a public trust to preserve.” This is false hope perpetuated.

This next event occurs frequently within the inpatient unit. A person is admitted, and after a week or two into the stay, their day is still primarily spent in bed, with no involvement in patient groups, while eating very little. With the current medication regimen, there has been no reported improvement in symptoms and functioning. It is common to hear the assigned psychiatrist during conference rounds say to the nursing staff that medications won’t work if all the person does is rest all day or if the person is not eating. I recall one psychiatrist stating, “…people come here thinking medications are all they need, but they won’t work well without participation in groups or interacting with others.” The insider message is that treatment success begins with participation in life.

One common occurrence is seeing patients admitted to a day hospital, which offers programs five days per week for 4-6 weeks duration. It is not uncommon to see the patients pass through this department 2-3 times over a one-to-two-year period. Typically, these consumers state to me that they are back in the day hospital program because the medications are not working effectively. They are waiting for the right medication combinations so they can move forward with their lives. Very little value by them was given to day hospital therapeutic programming, as they focus on medications as the only treatment that counts. This form of thinking can lead to the revolving door being experienced. In essence, people in this position are putting a hold on recovering until their psychiatrist finds the correct medication fit. However, it is common for the second or third time through day hospital before their thinking changes. Many clients realize they can’t continue to wait for effective medications to start their lives. Instead, participating in the programming and practicing the tools learned ends up being the key to beginning recovery, i.e., living their lives. When graduating from the day hospital program after this change of thinking, many express gratitude and wonder why it took them this long to get this message that being an active participant in their care is critical to recovering.

The conference room with allied professionals and psychiatrists is where patient rounds occur to assess, evaluate, and determine the next steps in treatment. Many times, on the inpatient floor, patients can spend upwards of three months in this acute care hospital. I have witnessed psychiatrists saying, “…is what we are seeing this patient baseline?” after tinkering with their medication for this amount of time. This question is posed as the person is still unwell but stabilized psychiatrically, but not as severe as they were at home, which led to the admission in the first place. When there is a judgment of reaching the “baseline,” the still unwell patient is discharged, usually with the family asking in horror as they can see their loved one is still unfit to return home, a very unnerving and upsetting experience for them. The inherent message for the patient and their family is clear: “They don’t care.”

As well, for far too long, many people have reported to me, in so many words, that their family doctor or psychiatrist tends to dismiss the gravity of what they are going through. In other words, “How can 20-30 minutes with the psychiatric providers, leaving with a prescription in hand, measure up to the overwhelming weight the psychiatric issue felt?” They point out that no time is available with a psychiatric provider in the meeting room to get across this gravity. After some time, I have seen a quiet resignation and reluctant acceptance from the folks I serve, who adjust their expectations that this is the best medication psychiatry can offer and face the real possibility of never being in a position to recover their lives.

I recalled a hallway conversation with a portfolio director overseeing the restructuring of the day hospital department for the mental health department. In a series of conversations, she told me she had become aware that the parameters of mental health are not like physical health. This was her first foray away from overseeing physical medicine departments like surgery, emergency, or senior services. What struck her the most was the discovery that with mental health treatment, you can’t count the measured time to discharge knowing expected outcomes from specific interventions; you can’t pinpoint the “bacteria” connected to the disease and say, “This is the illness you have; here is the course of treatment; and here is what to expect.” She indicated that she was arriving at a realization that one can’t approach mental health like a broken bone. After several weeks in a cast, the limb is ready to resume normal functioning. She intimated that mental health is a different animal altogether. This was disconcerting to her from a cost-benefit analysis. How do we measure treatment progress you can’t touch since medication predictions are unpredictable? The director is discovering what psychiatrists already know that they work within unknown parameters of medications being a “shot in the dark.” i.e., their best guess. For consumers, this means undergoing many drug trials before landing on the best drug or combination, and even on those occasions, the medicative response for many can be marginal, leaving people still limping along in their lives.

During rounds by MD residents who are moving on to become psychiatrists, I have presented an overview of recovery orientation and its implications as an aspect of their learning from allied disciplines. I am always surprised by comments such as “How come I have never heard of this before?” and a sigh of relief knowing recovery involves a collaborative partnership where both parties are accountable for treatment success and not just the physician’s responsibility. They are also pleasantly surprised that the patient is not a passive care recipient but actively involved in their recovery. The residents would clarify the idea of being seen as “God” by the public is daunting and overwhelming, especially when they don’t have all the answers (medication). From what they gather, recovery offers another pathway where it takes “two” and not “one” to drive treatment forward.

“We are all in this together.”

-The Recovery Specialist

Terms of Use:  This program is for consumers with medication failure. No fees are required to access the material on this platform. Permission is granted to print materials from this site without prior consent from the site administrator. The consumer can port this protocol and introduce it to their non-clinical or clinical provider. The objective is to put into play this protocol to kick start a recovery since medications are offering poor treatment returns, which is impacting a person’s quality of life from a recovery perspective.

Disclaimer:  The information provided on this site does not constitute medical advice or treatment. The information acts only as a guide to consider the elements for making recovery possible and how to institute such a program of practice within the Meeting Room space of one’s service provider.