I’m knee-deep in writing my memoir. I have 350 pages of the first draft written and I haven’t even begun the narrative of my work with my former psychiatrist, Dr. Lev. That’s an additional 11 years of therapy. My writing instructor says the first draft is basically “word vomit,” and then you go back and edit, edit, edit. As the saying goes, every writer needs to “kill her darlings.”
In preparation for writing about that time with Dr. Lev, whom I first saw in September 2005 and then was hospitalized six times in the subsequent 18 months for intense suicidality, I obtained my hospital records for those admissions — just the admission notes, but those were revealing enough.
Copies of records have always been available to clients by law but obtaining them has been a cumbersome process to navigate. At one of my former jobs, I oversaw medical records, so I was familiar with the process. Today, electronic records make access much easier.
This practice is known as Open Notes. “The original open notes study involving clients at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Harborview Medical Center in Seattle found that 80% of clients offered open notes read at least one note over the year-long study period. At the end of the study, 99% wanted the practice to continue, whether or not they chose to read their notes. Survey data from Kaiser Permanente (NW) and the Department of Veteran’s Affairs (VA), the first system to adopt open notes across all specialties, have shown similar results, as have many others.”
Regardless of the ease of access, there remains the concern of content and how the client will interpret what he or she reads. One study reports, “Clinicians, especially those working in psychiatric settings, remain concerned that clients could become anxious, confused, or offended by what they read, and that sharing notes will create an extra work burden for mental health professionals.”
Here is an admission note from one of my hospitalizations dated 11/3/2005:
This 44yo SCF with a long psychiatric hx and 15 previous inpt admissions, last 9/22-10/11/05 at NYPH-WD, referred herself with the help of her therapist at the Renfrew Center in NYC, in response to a recurrence of depression and psychotic symptoms in the past 2 wks. Pt reports hearing a Bishop in a church urging her to search the media for ways to kill herself. The voices also tell her its not over-referring to her illness. Pt reports medication compliance and Renfrew Center increased her risperidone from 8 mg daily to 10 mg daily with no improvement. Pt said she was evaluated at Beth Israel 10/26/05 at the recommendation of Renfrew, but she refused admission as she had on one to feed her cats and she is worried that her job as a therapist would be in jeopardy. However, the voices have become more compelling. Pt denies SI or a plan but stated that she has enough meds in her apt to OD on. She did contract for safety. Pt feels depressed, anadonic, has poor concentration and is isolating. She has a hx of ED, restricting but states it is currently under control.
Until I read this I’d forgotten about my delusion with the Bishop. It was an ongoing delusion that originated because I had a friend I met through treatment whose father was a bishop in the Catholic church. I met him once and I got the idea he disapproved of my friendship with his daughter because I was Jewish. I couldn’t get that idea out of his mind and it slowly morphed into this delusion he wanted me dead, so I needed to kill myself.
This note was distressing to read. It wasn’t even so much that I had been psychotic. I was aware of that. It was the chronicity of my illness. This was my sixteenth hospital admission. I was at this point, a professional patient. What hope was there for me except to be cycling out of psychiatric hospitals for the rest of my life?
My experience demonstrates one of the dangers of clients accessing their medical records. It saddens me to think that was the trajectory on which I was headed and if not for being referred to Dr. Lev and her expertise in TFP (transference-focused psychotherapy), I might have continued down that path. Fortunately, I did not have access to these records in real time, but only after I had improved considerably and had enough time out of the hospital to combat the label of myself as a professional patient.
Another study found that 55% of healthcare providers (HCPs) reported having clients who “experienced significant distress after reading their records, while 29% and 21% of HCPs reported experiences of clients terminating treatment after accessing their records or reporting having engaged in ‘negative and/or self-destructive behavior toward themselves or others,’ respectively.”
Psychiatry Essential Reads
Should open notes be treated differently when considering mental health notes and mental health clients? One study looked at potential objective and subjective changes in clinical documentation in mental health care following the implementation of open notes. The researchers reported, “The implementation of open notes seems to result in both objective and subjective changes in clinical documentation and documentation practices. Quantitative and qualitative findings from our study suggest that HCPs generally strove to create more patient-friendly notes. In practice, this may benefit both clients and the therapeutic relationship.”
As an LCSW, the way I have and continue to write notes is to objectively document what the client has said in our session, i.e., the client stated that she felt sad upon the loss of her cat. I will document an observation if warranted, i.e., tearful, pressured speech, tangential thought process, etc. I will never assume to know what the client was thinking or feeling, i.e., the client was feeling anxious because she had a physics final the next day.
Another study looked at how open notes is changing the power dynamic between clinicians and clients, finding, “At the heart of these changes is a shifting power distribution within the patient-clinician relationship. Some clinicians view OpenNotes as an opportunity to better partner with clients, whereas others feel that it has the potential to undo the therapeutic relationship. Many clinicians are uncomfortable with OpenNotes but acknowledge that this discomfort could both improve and diminish care and documentation practices. Specifically, we found that (1) OpenNotes is empowering clients, (2) OpenNotes is affecting how clinicians build and maintain the therapeutic relationship, and (3) mental health clinicians are adjusting their practices to protect clients and themselves from adverse consequences of OpenNotes.”
Like it or not, open notes are here. As both a clinician and a client, I appreciate the benefits for both groups, as well as the risks. Let’s use this access judiciously.
