Six Awkward Concerns in My OpenNotes

I found out this past weekend that the VA will be making clinician progress notes available for patients to view on the MyHealtheVet portal. In other words, the VA is going OpenNotes. (Note: I was a primary care provider in geriatrics clinic at the San Francisco VA from 2006-2010.)

My first reaction was to be impressed by this bold progressive move.

My next reaction was to feel mildly relieved that I’m no longer a PCP there.

Now, it’s not because I’m against transparency in healthcare, or am suspicious of patient engagement, or feel that patients shouldn’t see their health information without the assistance/gatekeeping/interference of a clinician. Far from it.

It’s because in my own VA practice caring for WWII vets, I used to frequently document certain concerns that would’ve been a bit, shall we say, awkward for the patient to see. Reading about these concerns would’ve quite possibly infuriated the patient, or the caregivers, or both.

So whew, I find myself relieved that I don’t have to figure out how to document (or not document?) these concerns.

Instead, I’ll get to see how my friends at the VA handle these issues.

Wondering what they are? Ok, I will tell you but shh … don’t tell my elderly patients that I may be considering these topics as I care for them.

Six awkward concerns in geriatric primary care practice

· Possible dementia. As a geriatrician, I focus on an age group that has a high incidence of dementia. Which means that when someone starts to tell me odd stories (concerns related to poison are a popular theme, as well as reports that someone is stealing things repeatedly), I start wondering about possible dementia. Ditto if he or she starts floundering with the medications, or starts having other difficulties with IADLs.

Why it’s awkward: Patients and families really hate it when I bring up the possibility that there might be dementia. Many find the possibility of a disease such as Alzheimer’s truly terrifying, both because it’s perceived as a terrible disease, and because they worry about having to leave their homes or otherwise losing their independence. Note that if I’m considering the possibility of dementia, I usually let the patient know during the visit.

That being said, if in the visit they have a strong adverse reaction to the suggestion (and so many people do), I often don’t emphasize it to them. I do however order relevant labs, try to otherwise optimize them cognitively, and plan on following the cognitive status over the next several months. (Could the new brain scan for Alzheimer’s pathology help? See here.)

· Possible Elder Mistreatment. Elder mistreatment includes frank verbal or physical abuse, neglect, and financial abuse. (There’s also self-neglect, but I usually assume that’s possible cognitive impairment.) Like dementia, once one has started to worry about a patient, this problem can take a while to suss out.

Why it’s awkward: Older adults may be uncomfortable or angry when a caregiver falls under suspicion. They may also be afraid of losing the assistance of the caregiver. Caregivers themselves tend to be understandably upset by the insinuation that they may be mistreating someone.

· Possible abuse or diversion of prescription drugs. For many older adults the judicious use of controlled prescription drugs makes sense, especially as part of a comprehensive approach to treat pain. In most cases, I actually have quite a lot of difficulty persuading my older patients to take them (so many stoics among this generation!). But in a minority of cases, patients surprise me by taking many more pills than I expect. Or they lose them. Sometimes repeatedly. And I find myself starting to wonder if abuse or diversion is at hand.

Why it’s awkward: It just is.

· Possible substance abuse. Occasionally I have a patient who seems to be overly using a non-prescription substance, such as alcohol.

Why it’s awkward: Many people are defensive when they realize their clinician is concerned about their drinking. In the elderly there may also be concurrent early dementia, which can further increase paranoia and/or impair insight.

· Concerns about ability to manage safely at home or while driving. Some patients clearly seem to be struggling to manage ADLs or IADLs. Even patients who upon evaluation have pretty good cognition can sometimes be resistant to further exploration of how they are managing at home or on the road. It can take time to gently persuade a patient to accept a home evaluation, and some assistance.

Why it’s awkward: Suggesting that someone is no longer as independent and functional as before can be a delicate matter.

· Concerns voiced by family or caregivers. I’ve often been pulled aside in the hallway by family members, or even phoned by a concerned friend. HIPAA prevents me from disclosing protected health information without the patient’s permission, but doesn’t prevent me from hearing it. Often the concerns are related to cognition, safety, or ability to manage daily life. Occasionally they’re about substance use. These tips from family and friends are valuable and often help me in identify a potentially important health problem.

Why it’s awkward: Caregivers often ask me to not let the patient know the caregiver told me their concerns, because they don’t want the patient to be upset at them.

As you can see, these are topics of substantial importance to the health of an elderly adult. They are also topics that usually require collaboration with clinical colleagues, and varying levels of diplomacy during follow-up, in order to avoid alienating patients and families. (Please don’t stop coming to see us!)

Last but not least, these are tricky topics that have historically been under-recognized and under-addressed by clinicians. I can’t help wondering if the feeling that patients might read the notes will further impede clinicians from properly investigating the issues listed above.

I’m not sure what I’d do if I were told that tomorrow all my patients (and whichever caregivers the patients give access to) would be able to read everything I write about them. For the most part, it would be fine, but I’d certainly have to work out an approach for handling the awkward issues I describe above.

Of note, in the OpenNotes study which was published last fall, the average age of the patients who viewed their progress notes seems to have been around 50. I haven’t yet been able to find published research on what happens when much older (and perhaps medically complex) patients view their progress notes.

Fortunately, I don’t have to figure out how to adapt my progress notes right away. (Though I expect this kind of transparency will become standard of care very soon). For now, I can watch and learn from the VA’s very interesting, very bold step forward into increased transparency in healthcare.

In the meantime, if anyone wants to share ideas for how to document the concerns above in an age of OpenNotes, I’m looking for suggestions.

Leslie Kernisan, MD, MPH, has been practicing geriatrics since 2006, and is board-certified in Internal Medicine and in Geriatric Medicine. She blogs at GeriTech.