Rethinking the Role of Prognosis in Mental Health Care

He met my file before he met me.

As a pre-teen, I began my journey of living with mental health challenges. The years that followed marked some of the darkest of my life. I met several people who told me things about myself. Many after meeting me for the short periods that state insurance would cover for me to talk with a psychiatrist, or in this case, the yearly IEP meeting held at the therapeutic school I attended.

I advocated to return to mainstream school but had been told that if I returned to the traditional school I would begin in a self-contained classroom with other youth with disabilities. I had aspirations of college and graduate school. I remember the psychologist giving a metaphor of a person trying to run a marathon after a broken leg and needing time to train. That year was to be a senior year, however, and 'time to train' would have meant no possibility of being fully mainstreamed. I remained at the therapeutic school. Yet, the next year, at 17, I found success in a mainstream university. My IEP carried the words "cannot advocate for herself." In my 20s, I was giving talks on my recovery and advocating for others through my work. "Appears to have borderline intellectual functioning" (no IQ test just a psychiatrist's opinion after a less than fifteen minute chat with me) is scratched onto my adolescent hospital records. But somehow, I completed graduate school and wrote a book.

Those prognostic statements did not capture me. They were born in generalizations based on diagnosis. But those words still made an impact on what services I was offered and the trajectory I was encouraged toward.

Which has made me wonder: Is it time for us to rethink the role of professional opinion on prognosis in mental health care?

Assigning a prognosis in healthcare is often routine, yet, how do we determine prognosis when it comes to mental health? Mental health professionals often see people when they are struggling most. In a time of crisis, hospitalization, school failures, and other unstable periods tend to bring people to our doors. Is what we see in those snapshots in time representative of the person and all they are capable of?

A fear regarding mental health professionals voicing a prognosis, particularly early on, could be that it could become a self-fulfilling prophecy. A meta-analysis has suggested that across health conditions, expectations for one's recovery are closely associated with outcome (Monloch et al., 2001). Similarly, in a study of individuals with mental health conditions who were not working, the belief that one would return to work often predicted doing so (Heijbel et al., 2006).

Something remarkable about mental health is resilience. We adapt and even people living with the most serious mental health diagnoses like schizophrenia can recover. A meta-analysis of individuals experiencing a first episode of psychosis found that a pooled average of 58% met the criteria for remission after at least one year (Lally et al., 2017). Recover does not always mean being free of symptoms or need of services. Still, recovery often does mean a picture that is quite brighter than what is seen in the worst of the illness. It might mean living well and moving toward one's valued goals. Something that is quite individually defined.

The Utility of Prognosis

There are situations when a prognosis is necessary to gain access to support. For example, for someone in need of disability benefits an evaluation must be made to determine their ability to work. As much as prognosis can under-estimate a person's potential, we also run the risk of under-estimating a person's needs. Someone may appear to an evaluation with neat hair, and report what the evaluator views as common mental health symptoms. But that evaluator might not see that person on their worst days when getting up to shower feels impossible and making it through a workday out of the question. These determinations are difficult and subjective.

A common tool is scales meant to determine a person's level of functioning. These are typically quick scales completed by a clinician to determine what services a person should be offered. For example, a certain level of need might indicate someone ought to receive community support services in addition to psychotherapy. These are commonly required by public insurance. Still, accurately rating a person's level of functioning is a tricky task. What construct is more subjective? Yet, some evaluation is necessary to determine what needs a person has.

In my first introduction to these level of functioning type scales, I was taught that a client's level of insight could be predicted by how closely their ratings matched the clinician's. Insight that would be key to a person's independence. I felt exceptionally skeptical. The best expert on a person's recovery is themselves. When ratings aren't matching, it is the clinician who is out of touch with the most vital perspective in the room, even if this does not align with the consensus. To try to rate someone's functioning is not only pompous, but it might also be impossible.

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Psychological Testing

Psychological testing does hold a level of validity and many uses, such as the diagnosis of learning disability in an educational environment. Still, one tends to take these tests when feeling at their worst. Is an IQ test still valid for a depressed teen who is not up to giving their best efforts? Or for an anxious person who is overwhelmed to the point where they stop answering questions? Are these instruments reliable in terms of gauging prognosis?

Research has shown that intelligence testing does not predict adaptive functioning equally across groups. In particular, large gaps have been found between IQ and adaptive functioning in people with autism (McQuaid et al., 2021). As well, many have pointed out the pitfalls of standardized psychological testing's utility across different cultural groups. Many have suggested that these tests are biased against BIPOC individuals and others outside the white, neurotypical, middle-class norming groups that have historically been used with these instruments.

Psychological assessment is expensive. In my experience, very few people assigned with a major mental health diagnosis are granted access to rigorous psychological testing. Instead, a short psychiatric evaluation, sometimes no longer than 30 minutes, followed by a diagnosis is provided. Although the DSM is meant to be a standardized tool, diagnosis remains subjective. It is not uncommon for me to meet someone who has received 10 or more different diagnoses from different providers. There are statistical outcomes for these conditions, but how much of this relates to the condition itself versus the role of stigma and systemic oppression that can come about as a result?

The Perils of Prognosis

I find it troubling when providers tell individuals with a mental health disability what they are and are not capable of (or discuss it among each other or the client's family when the individual is not present). Who are we to say whether someone can work (if they want to)? Who are we to say whether someone will drive again (if they want to)? What I hope and enjoy watching is when dark forecasts are proven wrong.

What I fear and hate watching is when these prophecies and the power of their sources make themselves right (when, maybe, they didn't have to be). Or, when services necessary for a person to fulfill their potential are denied based on these judgments. A person might be able to accomplish quite a bit in the right environment with appropriate support such as specific accommodations at school or work.

But isn't, at least some of this prognosis business, our job? We can't just say "This is impossible, let's have it be a free-for-all," in terms of service provision. Right?

Alternatives

Mental health professionals are not fortune tellers. We don't have crystal balls. Due to the marked differences among humans, generalizations in psychology do not hold much weight. What can hold, however, is the potential of the person in front of us.

Each person is the best expert on how the world looks from behind their eyes. The more closely we can understand what an individual wishes for and needs, the better off we are to offer relevant support. Rarely will this line up perfectly with a clinician-drawn scale or assessment. Does it have to?

I hope that in time, we will move beyond an expert mentality in the mental health field toward a more collaborative and person-centered one where individuals' needs are assessed in a more casual and shared way, looking at what they hope for and what they need to achieve this. This might go further than when people are told what they are capable of from the view of a professional and what assistance those judgments entitle them to.