Define “Better”
One of the things I have struggled most with in this field is how to define and measure progress or improvement. I am equally as fascinated as I am disgusted with how we define improvement. When I say we I mean RNs, social workers, therapists, supervisors, doctors, patients, and loved ones of patients. I cannot fully express the discontent I feel towards our poor standards and expectations of health in American culture.
One of the first things I ask patients when I meet them is “What do you want to get out of being here in the hospital?” I would venture to say that 5/10 times the patient will respond with “I want to get better.” For most people, that answer makes sense. Of course they want to get better-who wants to feel like crap all of the time? And by crap I mean anything from feeling depressed, anxious, using substances, drinking daily, experiencing hallucinations or delusions, not sleeping for 5 days straight, or not leaving their bedroom. However for me personally this answer isn’t going to work. Because your version of better will most certainly look different from my version of better. And also there’s zero way for me to measure that. And it sets the patient up for failure because when they are discharged after 72 hours-how do we know if they truly are better? Therefore if their response involves “getting better,” my next question is “What does that look like for you?” Most of those responses seem very simple and straightforward, but in reality they are extremely complicated and sometimes unattainable. Those answers are the ones I care about-do you want to sleep for 3 days, go to rehab, find a halfway house, stop talking to all of your family, start or stop medications, adjust current medications, get connected to a therapist, or did you just need a break from living on the streets? All actions have consequences. You might sleep for 3 days only to wake up finding that the medications you were prescribed come with all kinds of awful side effects. You might say you want to go to rehab now because you’re in withdrawal, but when the worst passes you might not think you need it anymore and relapse soon after you leave the hospital. You might pick a halfway house three hours away which isolates you from the only things familiar and constant in your life. You might decide to stop talking to your family only to find yourself being discharged to a homeless shelter because the “friends” you thought you had are nowhere to be found. Your doctor might adjust your medications 3-4 times in a 72 hour period causing your body to react accordingly. You might get connected to a therapist and find that the therapist enjoys talking about themselves more than listening to the infamous question of “What brought you in today?” You might get a break from being unhoused for 72 hours only to find that being discharged from a hospital to a homeless shelter where everything is “first come first serve” is a whole other level of feeling depressed, hopeless, and humiliated. I’ve seen all of these scenarios play out.
Patient Perception
There are no right or wrong answers, but defining goals and then attempting to measure those goals after 72 hours can be extremely challenging. I also am convinced that in the mental health field, we have forgotten entirely that patient perception is reality. If they think they are or are not improving, they are right.
I had a patient who was diagnosed with Major Depressive Disorder and Borderline Personality Disorder. I had been working on this unit for 6 months and she had been hospitalized 5 times since I started. She also “self-harms” (I use quotes because she defines it as self-harm) by lightly scratching her fingernails into her skin when upset. I’ve never seen them leave a mark, but she can. Her perception is reality.
During her most recent admission, in our daily “treatment team” meeting (psychiatrist, resident, medical student, RN, director of nursing, director of behavioral health, myself, and my supervisor) we were once again discussing whether or not this patient was appropriate to return to our outpatient program upon discharge. This patient participates in group therapy on the unit and she states that she feels as though these groups and the outpatient groups help her. Every single person-with the exception of myself-in the room began listing off reasons why she is not appropriate to return to this program because “she’s not getting better and it’s not helping.” I would love to say that this is when I spoke up and challenged the team of medical professionals with “How are we defining better?” However, I’ve been down that road before and the responses are even more laughable than the entire team saying that she’s not getting better. They continue to refuse to agree on one definition of ‘better’ in measurable terms. It’s nothing but opinions no doubt influenced by the fact that she’s been given a personality disorder diagnosis.
Some clinical research studies define improvement upon hospital discharge by how many re-hospitalizations that person has had in the year following discharge. Hospitals tend to measure “patient outcomes” by whether or not the patient followed up with another doctor within 7-30 days of hospital discharge. Some measure outcome by frequency of self-harm following discharge. Or whether or not the patient was “compliant” with medications after they left the hospital. Some measure it by using depression scales.
I don’t know that there’s one “right” way to measure patient outcomes, but I think the only thing that matters to me personally (it appears as though the field has completely strayed from person-centered approaches and now we only focus on the medical model) is “Does the patient believe they are doing better or worse than their baseline?” Patient perception is reality. Which makes me think of the placebo effect which is defined by WordNet as any effect that seems to be a consequence of administering a placebo; the change is usually beneficial and is assumed result from the person's faith in the treatment or preconceptions about what the experimental drug was supposed to do; pharmacologists were the first to talk about placebo effects but now the idea has been generalized to many situations having nothing to do with drugs. If a patient believes that their treatment-whatever that may look like to them-is effective or ineffective, their outcome will reflect this belief. Faith matters. In fact faith and belief matter so much that study after study have reflected this and connected belief in a higher power to a better quality of life. One such article states, “Most studies have shown that religious involvement and spirituality are associated with better health outcomes, including greater longevity, coping skills, and health-related quality of life (even during terminal illness) and less anxiety, depression, and suicide. Several studies have shown that addressing the spiritual needs of the patient may enhance recovery from illness.” Belief matters.
Going back to the patient I was describing previously, I forgot to add that she has been prescribed just about every antidepressant, antipsychotic, and mood stabilizer I’ve ever heard of. Each time this patient is hospitalized, I ask her what she’s doing for treatment. She’s done individual therapy (CBT, DBT, and art therapy) and group therapy (IOP and PHP.) Each time I ask her if therapy is helping anything, she responds that it is.
I bring up this extreme example of the lengths a patient will go to to “get better.” She genuinely believes that outpatient therapy and psychotropic medications help her. Despite the frequent hospitalizations. Despite the continued self-harm. Despite the recurring suicidal ideations with a plan to overdose on her psychiatric medications that are “helping” her. Despite the potential long-term side effects of taking psychotropic medications. She believes these things help her. She believes in her doctor’s clinical judgment when he prescribes medication. She believes the psychotropic medications work. She believes her outcome is greatly improved when she leaves our hospital.
I’d like for her to redefine her definition of “improvement,” but her definition matches our culture’s expectations of what mental “health” looks like. In America we have subscribed to the idea that mental illness is a “chemical imbalance” and that it will require medications to “fix.” For forever. Despite lack of evidence to support this theory, that’s the belief that has been embedded in our society since the 1970’s.
“That’s Just His Baseline”
Another unique example is one of my favorite patients I’ve ever had the pleasure of meeting. He is a highly intelligent and intellectual male with a Schizophrenia diagnosis. He has told me every time that I have met with him that medications are ineffective and that when he is discharged, he plans on discontinuing all of them. It is noteworthy that Schizophrenia is over and misdiagnosed among African Americans-which this patient was. Per an article about one study from Rutgers University “The study, which looked at 599 blacks and 1,058 non-Latino whites, found that clinicians failed to effectively weigh mood symptoms when diagnosing schizophrenia among African-Americans, suggesting that racial bias, whether conscious or subconscious, is one factor in the diagnosis of schizophrenia in this population.” If you’re given this diagnosis, the accepted course of treatment is to try at least two antipsychotics and if those are ineffective at managing your symptoms, it’s recommended that you’re prescribed Clozapine. This is a second-generation (newer) atypical antipsychotic with the most severe risks of this medication being myocarditis (swelling of your heart muscle,) cardiomyopathy (your heart swells to the point of not pumping blood as it should,) and metabolic syndrome (“a cluster of conditions that occur together, increasing your risk of heart disease, stroke and type 2 diabetes. These conditions include increased blood pressure, high blood sugar, excess body fat around the waist, and abnormal cholesterol levels.”) Clozapine was initially created in 1958 and a decade later was banned in countries in Europe due to the fact that it was killing people. Treatment of Schizophrenia is aggressive.
The general belief of my field appears to be that a Schizophrenia diagnosis has poor outcomes and should be treated with medications. Per Mayo Clinic, Schizophrenia requires lifelong treatment, even when symptoms have subsided. Even when there are no symptoms, we tell patients that they are required to continue treatment? Sometimes I think my job would be much easier if I subscribed to the widely held beliefs in my field. But I just don’t. And if outcomes are of interest to you, I suggest you research the medication-free hospital in Norway called Hurdalsjøen Recovery Center, the Soteria Paradigm, or look at the World Health Organization’s following studies: International Pilot Study of Schizophrenia (IPSS); the Determinants of Outcomes of Severe Mental Disorders (DOSMeD); and the International Study of Schizophrenia (ISoS).
There are a lot of different ways to view and treat mental illness-my experience is only that of the Western perspective.
Back to the patient. The Diagnostic & Statistical Manual of Mental Disorders’ criteria for Schizophrenia is: At least 2 of the following, each present for a significant portion of time during a 1-month period: (at least one of these must be delusions, hallucinations or disorganized speech) Delusions, Hallucinations, Disorganized speech (e.g., frequent derailment or incoherence,) Grossly disorganized or catatonic behavior, Negative symptoms (i.e., diminished emotional expression or avolition.)
This patient had a delusion that there was a government conspiracy targeting him. He has depression related to this delusion and believed that if he starves himself long enough, that somehow this would rid him of this government attack. In six months, he was admitted to our facility three times. He only ever exhibited delusions-no other indicators for Schizophrenia. Throughout his time at the hospital, he continued to refuse solid foods and only drank liquids and soup broth.
His thought processes were unchanged. His delusions did not falter. He continued to report that the medications don’t work and that he’ll discontinue them upon discharge. His belief that medications don’t work is certainly not the only possible reason that his thought processes have been unchanged, but I do think belief matters. Patient perception is reality.
I remember an unpleasant and brief conversation with another therapist regarding this patient:
Therapist: He seems like he’s doing a lot better.
Me: He thinks that the government has a conspiracy against him, is convinced he’s on a TV show, and he isn’t eating solid foods-how is that better?
Therapist: Well I mean I think that’s just his baseline.
Now, for those unfamiliar with the term, ‘baseline’ refers to what is typical for the patient. In the therapist’s defense, a lot of people have depressive or anxious symptoms, hallucinations, delusions, paranoia, suicidal or homicidal ideations, flashbacks, or panic attacks that they live with on a daily basis that never fully go away. I understand that. But to minimize the struggle and chaos that a patient must be experiencing due to these significant delusions and to do so because you think that’s what’s “normal” for that patient is repulsive to me.
I’d like for her to reconsider her definition of “better,” but-once again-her definition is congruent with our culture.
I wrote this piece not to criticize other people in this field-I just think it’s important to challenge the current approach to mental health as a whole. It doesn’t appear that people have better mental health outcomes today compared to outcomes prior to the creation of psychotropic medications. I just think these are two important examples that show what our definition of “doing better” actually looks like and how I don’t think it’s good enough.
References
https://www.mayoclinicproceedings.org/article/S0025-6196(11)62799-7/pdf
https://www.fda.gov/news-events/press-announcements/fda-approves-new-nasal-spray-medication-treatment-resistant-depression-available-only-certified
https://www.sciencedaily.com/releases/2019/03/190321130300.htm
https://www.mayoclinic.org/diseases-conditions/metabolic-syndrome/symptoms-causes/syc-20351916
https://www.bmj.com/content/363/bmj.k5421/rr-5
