Here’s how far we’ve come beyond the old stereotype of the inscrutable psychiatrist who refuses to do anything more than nod and hum. If you’re a patient in a pilot program just now getting under way at Boston’s Beth Israel Deaconess Medical Center, you’ll soon have a whole new window into your psychiatrist’s thoughts: the mental health notes in your own medical record.
Patient access to personal medical records is a growing trend, but the pilot takes it a pioneering next step, into mental health records that are often kept closed to patients. The program’s rationale — the expectation that the tactic will lead to better care — is laid out in “Let’s Show Patients Their Mental Health Records,” an article in this week’s Journal of the American Medical Association.
I spoke with its first author, Dr. Michael Kahn, a psychiatrist at Beth Israel Deaconess. Our conversation, lightly edited:
CG: Here’s my colleague’s response to the idea of patients reading their psychiatrists’ notes: ‘Omigod, that’s terrifying! Do you really want to know what they think of you, especially if you already have issues?’ How would you respond?
MK: My main response would be that ‘what they think of you’ might actually be a great relief. Many patients are quite frightened that the doctor ‘will think I’m crazy,’ and the meaning of that varies from patient to patient. Mostly, those patients are not out of touch with reality; they’re just overwhelmed, and they’re often very reluctant to ask their doctor about it because they’re afraid their doctor will say, ‘Yes, you are crazy.’
So when they read in the note that “The patient is struggling with anxiety or depression, and should get better with this treatment,” that’s often a great relief to them, because they often see they’re not as impaired or deficient or defective as they feared.
I imagine the response from many psychiatrists would also be, ‘Omigod, that’s terrifying.’ You write in JAMA that this ‘feels like entering a minefield, triggering clinicians’ worst fears about sharing notes with patients.’ And you mention specific fears — how will a patient with a personality disorder react upon learning of that diagnosis? What if patients are outraged by the terms used? How do you respond to doctors’ fears?
The first thing is to recognize that it’s a totally natural, understandable and honest fear. I think we all learn in our professional development to use these terms — you might call them jargon — that are often but not always accurate, and often but not always have more pejorative connotations.
I think clinicians know this and are concerned that if patients read, for example, that they have Borderline Personality Disorder, then they will feel insulted, shocked, demeaned. I think this is a totally understandable and reasonable anxiety on the clinician’s part, but I think for many patients — and I’ve seen this many times — if it’s introduced to them in a tactful way, they can get the message that “The reason your life is in such turmoil is not because you’re a bad person but because you have this thing we call Borderline Personality Disorder that has these features.” And patients often say, ‘Oh my God, that’s me!’ and that’s actually a relief; they feel less alone and stigmatized.
So overall, the expectation is that patients being able to see these notes would far more often be helpful than harmful?
That’s the expectation, which we plan to test. My colleagues Pamela Peck and Meghan Shanahan get the credit for organizing the pilot and carrying it out.
Pam Peck, who’s the clinical director for the hospital’s department of psychiatry, tells me that all the psychiatrists are participating and the initial aim is to open mental health records for a carefully selected 10 percent of all ambulatory patients. That began last month, and of course it’s very early, but can you say what you’re seeing?
It’s too early. It’s just getting going, just getting off the ground.
It sounds like part of this involves psychiatrists developing almost a new skill, in terms of writing notes that you know will be shared with patients, right?
I think there are two main skills that can be developed. One is the skill of accentuating the positive. As clinicians, we tend to focus on what doesn’t work and has to be fixed, as opposed to also indicating what’s working well and is a strength and helps people to cope. So one tool is to highlight people’s positive accomplishments and strengths, which also tends to be gratifying to the patient because they feel the clinician sees them more in totality, rather than as just a collection of problems.
Step number two might be summed up as describing rather than labeling behavior. So rather than saying a patient ‘is being hostile and difficult,’ you might say, for example, ‘The patient indicated clearly that she did not want to have a discussion with me at this time about topic X, and I told her that I’d like to continue this discussion in the future.’
But these notes are also for other fellow staffers. Isn’t something lost if the clinician needs to warn other staffers that this patient is hostile and difficult?
I would say no, actually, because again, I think one clinician saying ‘The patient is hostile’ is another clinician saying, ‘The patient was able to get something off of his or her chest.’ So I think by describing the behavior rather than labeling it, you get a more accurate picture.
Is a part of the motivation here that more and more, we’re thinking that it is a patient’s right to be able to read what’s written about them in the medical record?
Partly, it’s more of a right — and it improves patient care.
Right, you wrote that it’s important for patients to be able to correct errors.
Exactly, which is not an uncommon occurrence.
The patient could say, ‘You wrote in your note that I was on 20 milligrams of a drug, and you forgot that in our last meeting we reduced it to 10 milligrams.’
You also wrote that there can be a special power to seeing things in writing for some patients, in that it can help catalyze behavior…
Right — particularly for patients with addiction problems. Many of them are used to being told over and over again by those close to them and their doctors that they really need to stop drinking, it’s ruining their liver, if they keep it up they’ll be dead, and so on. Some patients just tune this out and feel, ‘I’ve heard that, why keep repeating it, it’s alienating to me.’
So the idea is, if a doctor were able to talk in a non-judgmental, compassionate way in the notes about the risks the patient is facing by continuing to drink, the patient could read it in private and perhaps be able to have a more contemplative approach to the problem. They could feel less like they were bring cross-examined. It’s not going to work for everybody, of course, but there may likely be a subset of people for whom that opportunity leads them to say, ‘Hmm, maybe the doctor does have a point after all,’ without feeling that he or she loses face by making that admission.
Is this pilot program a first?
We found out just before the JAMA paper was published that the VA has been doing something like this for a period of time, but it’s certainly a first for our hospital and it would be a first for most health systems. Most health systems do not do this.
Would access to the mental health notes be retroactive at all? Could you look back years?
No. Patients would only see notes written after Mar. 1.
At the end of your piece, you note that there can be a tendency on the part of health care staffs to use language that’s “potentially offensive to the uninitiated.” Can you speak to that, to lack of respect in medical language?
This is a topic that’s familiar to all people who are in medicine in general and all the helping professions, I think. Certain clinical terms get used as proxies for less flattering attributes of the patient.
So to say the patient, for example, is “a borderline” can be proxy for saying, ‘This patient is very tough to work with and makes me feel very frustrated and angry at times.” Or to call a patient ‘a narcissist,’ can mean, ‘This patient tends to only think of his own concerns, ignores me, doesn’t do what I want and it really annoys me.’ This is, I think, no secret to people. On the one hand, these terms — borderline and narcissistic — can be very useful, but I think can also be overused and misused in a way that I think isn’t helpful to patients or clinicians.
When you tell outside colleagues in psychiatry that you’re doing this, what is the reaction you tend to get?
I would say cautious skepticism.
A good friend of mine who’s a psychiatrist said, “What if I have a depressed patient who decides to read my note when she’s alone at night with her iPad in bed. How will she react?” It’s an interesting scenario, and I thought, “Well, I suppose it depends on what the note says. Maybe she’d read such a note and think, “Wow, this shows that Dr. So-and-so really understands me and is really trying to help me. Now I can get a good night’s sleep.”
On the other hand, she could see that she has major treatment-resistant depression and look it up on the Internet and see that her chances of remission are very low…
It does require the doctor to introduce a certain amount of non-euphemistic circumspection into the note. You’re not trying to sugar-coat or pussy-foot around but you have to be circumspect, and that just means being cautious while maintaining accuracy.
And you do note that it’s still possible for doctors to exclude some notes.
That’s right, for the relatively rare patient for whom the psychological risk of reading the note would outweigh the benefits, there still can be a barrier put up so they don’t automatically have access.
Readers, the most obvious question: If you could read your psychiatrist’s notes about you, would you want to?