by Jill Holm-Denoma, Ph.D.
A few years ago, I experienced a nagging pain in my right hip. I was an active athlete who did not want to be slowed down by an injury, and therefore went to my physician to get checked out. After examining me, the physician said he was unable to determine what was causing my pain or give me a firm diagnosis, but that he suspected rest and ibuprofen would be helpful. I left his office feeling a bit frustrated that I did not have a good explanation about my hip pain and worried that I might not get well soon. Several weeks later, I ended up in an orthopedic’s office, and this time, after conducting a thorough assessment, the physician told me that I had Trochanteric Bursitis (a common problem that causes inflammation of the bursa over the outside of the hip joint) that could be treated with a specific type of physical therapy. I felt relieved to have an explanation for my pain and hopeful knowing that an effective treatment was available for my problem.
Around the same period of time, I began to think about the experiences that psychiatric patients might have when seeking diagnosis and treatment from a mental health provider. From working at various community sites, I knew that psychologists did not always give their patients candid diagnostic feedback. There are many well-intentioned reasons that mental health care providers have for not providing their patients with diagnostic information (discussed below), but I wondered if this felt frustrating, unsatisfactory, and/or confusing to the patients. If a psychologist failed to share his/her diagnostic conceptualization with a patient, would that patient feel like I did after seeing the first physician about my hip pain (i.e., frustrated, confused, worried, and a bit hopeless)?
It occurred to me and one of my labmates (Dr. Kathryn Gordon, who is now an assistant professor of psychology at North Dakota State University and co-author of the May 2009 Psychotherapy Brown Bag featured article) that this was an empirical question. That is, we could design a study to determine whether giving patients diagnostic feedback was useful or was harmful. Before conducting the study, we spent time familiarizing ourselves with published literature on the topic. I was shocked to learn about the low rate at which clinicians provide their patients with diagnostic feedback! For instance, in a study examining hypothetical diagnoses of fake patients, American clinicians stated they would disclose diagnostic information if the client met criteria for a mood or anxiety disorder 80% of the time, schizophrenia about 70% of the time, and borderline personality disorder about 55% of the time (McDonald-Scott, Machiwaza, & Satoh, 1992). When working with actual patients, fewer than half of psychiatrists reported that they routinely disclose dementia or personality disorders diagnoses (Clafferty, McCabe, & Brown, 2001; Pinner & Bouman, 2002), and almost 40% of psychiatrists said that they would not disclose diagnostic information for certain disorders to clients even if the client asked for it!
Why would clinicians withhold this type of information, I wondered? I believe that there are many well-intentioned reasons it happens. For instance, David Rosenhan, a psychologist, conducted a fascinating study entitled “On Being Sane in Insane Places” (1973). The results of this study led him to believe that diagnostic labels are not reliably applied in clinical settings and that client knowledge of their diagnosis leads to feelings of misunderstanding, powerlessness, and inadequacy. Clinicians may also withhold information about diagnoses because they are worried that providing a diagnosis may cause social stigma and labeling effects (Langer, & Abelson, 1974, Scheff, 1999; Sushinsky & Wener, 1975), fear that giving such feedback may diminish a patient’s morale and further compromise their mental health (Hassan & Hassan, 1998), and/or worry that diagnostic feedback provision may cause an uncomfortable therapeutic interaction.
Although I could understand the reasons that providing diagnostic feedback caused feelings of hesitation in some clinicians, I could not help but think that at least some patients actually feel worse when they are not told what is going on with them. Said differently, Dr. Gordon and I hypothesized that some patients would rather hear “bad” news from their mental health care provider (i.e., that they meet criteria for a mental illness) than hear no news (i.e., not be told what was going on with them).
Dr. Gordon and I therefore conducted a study at a community outpatient clinic in which we empirically evaluated whether patients perceived receiving clear, detailed diagnostic feedback as a positive or negative experience. We recruited 53 adult outpatients for the study, and asked them to report on how they were feeling during multiple points of the assessment process. Specifically, we assessed their mood with a brief self-report instrument (a visual analog scale) that consisted of alternating Positive (hope, optimism, validation, relief) and Negative (shame, fear, distress, discouragement) descriptors. Each descriptor was presented on a rating scale that let participants rate their level of agreement (e.g., “not validated at all,” “not very validated,” “somewhat validated,” “very validated”). By asking participants to fill out this instrument at many times during the assessment and diagnostic feedback process, we were able to determine what type of emotional experience patients have before, during, and after receiving diagnostic information about their mental health. In this study, less than half of the participants met criteria for a single psychiatric diagnosis. That is, most patients actually met criteria for >1 mental illness, which meant that they would perhaps be more likely to feel negative and/or upset by receiving diagnostic feedback than patients who only met criteria for 1 disorder.
The results of the study indicated that clients reported no change in negative emotions (such as shame and fear) and significant increases in positive emotions (such as hope and validation) following diagnostic feedback provision. Furthermore, this result held even when it was examined specifically in people who received multiple psychiatric diagnoses. Therefore, the results suggested that diagnostic feedback, when provided in a careful and constructive manner, tended to increase clients’ positive emotions and potentially their hope for treatment. The results clearly did not support the notion that provision of diagnostic feedback would lead to an increase in clients’ negative emotions. Based upon these results, we concluded that mental health care providers should give their patients clear diagnostic feedback in an empathic manner. But how does one go about doing that? In our study, we created a script that therapists used when providing feedback that seemed to be helpful:
1) Introduce your agenda of providing diagnostic feedback
2) Verbally reflect the main symptoms the patient has reported
3) Tell client the name for their disorder and provide information about it
4) Assure client that a lot is known about treatment for the disorder
5) Advise client to guard against misinformation regarding the diagnosis
6) Answer any diagnostic questions that the client has
1) Now that I have a sense of what has brought you here for treatment, I want to discuss your diagnosis. 2) You told me that recently you’ve been experiencing these symptoms ____ and that you’ve been feeling ____. These symptoms and feelings cluster together into a syndrome. 3) There’s a name for the syndrome that you’ve described, and it’s called _____. This syndrome typically consists of symptoms like ___. People with this disorder typically feel like _____ [use the DSM for support during step 3]. We know a lot about this syndrome, both scientifically and clinically. 4) We also know a lot about how to treat this disorder effectively. 5) There is a lot of information available about this disorder. However, I’d like to caution you that much of the information you will find about this disorder (online, from a friend, or in a bookstore) may be incorrect. However, at this clinic, we know a lot about your syndrome, and I will be happy to give you as much information as you desire and help you to find good sources of information about the disorder. 6) Do you have any questions about your diagnosis?
It is my hope that clinicians will feel more comfortable providing diagnostic feedback to patients now that they have a) empirical results to show that diagnostic feedback is received positively by patients, and b) a framework with which to provide such feedback. It is also my hope that informed patients will be assertive in asking their providers for information about the diagnosis and its treatment implications.
Jill Holm-Denoma is an assistant professor in the department of psychology at the University of Denver and maintains a private practice providing assessment services and empirically supported treatments for mental illness in the Denver area.