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.

20 replies »

  1. I do understand that there are times – more than any of us would like – when revealing something like dementia or suspected abuse would create more drama than the actual DX itself. Geriatricians are particularly at risk of winding up in Drama Camp, because even Tolstoy’s famously all-happy-in-the-same-way families can turn uniquely unhappy with one poor DX for mom.

    You’re leading the way for your peers, and for all of us, by bringing up this almost-taboo topic and talking about it in public. Thank you!

  2. Great piece. I agree with some of the other comments – while bringing up issues like alcohol dependence, dementia, etc are delicate matters, it’s not our place in medicine to say when the patient hears about it and when they don’t (yes, I would argue even at the expense of their mental/emotional wellness or that of their families). Medicine is a service endeavor, not an all-purpose welfare institution.

  3. hi Casey,
    Completely agree with you. When it comes to dementia, I always strive to get the family involved and informed ASAP; usually the family is worried, and their involvement is critical in helping to keep the older person safe and as functional as possible.

    The hitch that sometimes occurs is that the patient is sometimes reluctant to involve family, but it’s much much better for all when a person’s family and support circle can be kept informed. I do think OpenNotes will make this easier overall, and will improve the care of people with cognitive impairment.

  4. I can see this developing into a minefield.

    Having experienced the geriatric journey by managing my parents’ care in the last couple years of their lives, I can tell you that I would have preferred to be able to track their clinicians’ notes in real time, rather than having a phone book slammed down in front of me at a family meeting demanded by Kaiser.

    This was in late ’00, I’m sure things have changed there since, but I found myself wondering why much of what we were hearing about our parents’ conditions was now being revealed, in spite of our trying to get communication channels open w/the Kaiser folks caring for our folks. And our parents had given the OK for Kaiser to talk to us at least two years before.

    OpenNotes would have been a gift, as uncomfortable as it is to see something like dementia on notes. BTW, that’s exactly what happened with the Kaiser Phone Book incident – dementia was in my mom’s chart, FOR TWO YEARS, before anyone informed the family. We weren’t surprised or distressed to see it, but we were angry it had taken two years for Kaiser to spill the DX beans.

    I’m on the side of sunshine and full disclosure. If you won’t say it directly to me, why are you putting it into my chart? I start there.

  5. I find this concept interesting, yes to begin with seeing a flag beside an isolated lab result, usually means nothing.. but that doesnt mean the patient cant learn to interpret that. Surely a pamphlet explaining such a thing would be available out in the waiting room.
    I spend my time explaining to my PCP what operation I have had and whether the flow of blood now goes to my fingers or back to my heart. So why should he be getting my operation notes when he doesnt understand, what to me is a normal operation. [35yrs as scrub nurse] he cant interpret my lab results and as I found out doesnt even read them when we had an arugument about needing one to be repeated he said it wasnt available in this country…… yes I bluntly pointed out I had been tested every 6mths for the past 5yrs the request coming from the hospital, and yes he had a copy.. I spend my time explaining to the vascular team what the general surgeons did to my intestines, and what an episode of SOD is, and then to the IR team what is wrong with my CVAD and AVg.. and being ignored that turning me onto my right side to see the drainage of the Roux en Y loop means I need to be lying on the left.. so they report either not seen or NAD.. YET you would consider them OK to get the information… sorry time for a re think, its mutual in the knowledge stakes.

  6. We’ve opened up all of our clinical notes except mental health notes to our patients through our portal and not had a problem with this yet. Surprisingly it hasn’t improved our documentation and those physicians who dictated bad notes and using the computer to write bad notes. Converse is also true.

    The latest privacy policies from CMS have me concerned as they seem to indicate the patient will have the right to redact or prevent 3rd party payers and other agents from specific portions of notes, medications, etc. Am still working my way through the regs but it seems like each paragraph suggests or requires a technology that I’m not certain either exists or is really practical in this day and age of open access.

    In short, I’m not certain whether we’ll be able to be compliant with patient’s wishes and outside agencies perception of patient wishes. Looks like a looming field day for litigation specialists.

    Maybe we should just punt and have the patient choose a web based medical records system and do their own documentation and sharing … that would get us out of the HIPAA regulations as we’d have no input. Oh, yeah we wouldn’t get paid then would we?

  7. You’re right, Leslie; there were all kinds of complications in the communication about my father’s condition. He did have significant dementia, but we children couldn’t tell as we had patterns of communicating with him that made it less apparent. I think it would have helped us plan for end of life care more effectively – we could have helped him more with navigating the system.

  8. hi Robert,
    I’ll assume you mean clinician when you say “caregiver.” Interesting to frame it in terms of our need to thoughtfully speculate, but yes, I find myself speculating at times and do want my colleagues to do know about it. Will be interesting to see what options the VA provides for this type of clinician effort…I don’t even know yet how much option there is to block occasional notes (seems this was an option in the OpenNotes study published last fall).

  9. It strikes me that caregivers will be much less likely to speculate in the OpenNotes environment? Thoughtful speculation helps prompt a caregiver to revisit concerns in subsequent encounters – particularly when engaging a large practice panel and you otherwise simply forget to follow-up on previous concerns. Speculation can also help other caregivers to know your thinking as they craft their own. Perhaps caregivers can use an EMR alert system that is private to themselves as a partial solution, keeping the concerns out of the main record? Otherwise, OpenNotes may just move the caregivers to a measurement based documentation model based on questionnaires and diagnostic tools. As always is the case, something will be gained, perhaps in accuracy, but much may be lost as well, perhaps in the solving of complex problems.

  10. You’re not alone with this problem. A study last year in the UK established that more than 30% of medical records contain incorrect information. That’s one very strong reason why patients should have access to their complete notes.

    Most of us would be appalled at how much misinformation is in our records. Eg., I hurt my left ankle. My PCP wrote it was my right ankle on the form referring me to an orthopedist. An orthopedic surgeon who did an MRI, got the correct ankle but wrote I had a history of asthma — which I’ve never had. Another orthopedic surgeon who operated on my left ankle wrote in her operative report that she operated on my right ankle! So much for accuracy!

    There’s a simple solution to this problem. Store all your records from all your providers on MedKaz® (medkaz.com). You can read actual notes and create addenda, correcting the erroneous information, that attach permanently to the notes.

    Full disclosure: I am Founder and CEO of Health Record Corporation, creator of MedKaz.

  11. Kay, you are quite right that there is way too much incorrect information in the medical record. I agree that we should give people some way to help correct it.

    As I said, I’m not against OpenNotes, I’m just trying to figure out how I will eventually need to document the concerns above.

  12. Flip the coin…….My medical records contain absolutely incorrect information. Example:one cardiologist was sinking into severe illness, nobody realizing as he did so that he added material “from memory,” incorrect material. Example: one endocrinologist refused to believe a lab test, done with different values than those used by most labs, was “within normal limits” as stated by the lab and reported them abnormal. Example: cardiologist has just written into hospital records for my husband a discussion he had with our “two sons,” of which we have none…..How are we to be given opportunity to correct what physicians mistakenly put in our records?

  13. Renato, the three way sharing system is an interesting idea. I’ll be curious to find out what optiions the VA providers have for keeping their private musings, or little notes to colleagues.

    Shirie, I recommend you read the article on peer-reviewed study of OpenNotes that I link to above. Many physicians had similar concerns at the beginning of the study, but found that things went better than they had expected. I do agree that if we doctors find ourselves having to spend a lot of extra time explaining things to patients, then someone should compensate us for that time (or give us enough time to do this, if we’re in a salaried position).

  14. I have always had concerns about the opennotes proposal. It’s not so much that I put things in patients notes that I don’t want them to see. It’s that some of the things they see they don’t have the knowledge to interpret. Medical notes are filled with abreviations and techno-speak that, if misinterpreted, can lead to patient anxiety. Lab results are automatically labeled “abnormal” by labs if they exceed certain thresholds, when taken in context would not be abnormal. Increasing requirements for documentation from accreditation groups force doctors to include things in the record that may not even be relevant for a particular patient. I can see the benefits of limited access to medical records by patients, but only if the doctor is available and compensated for making sense of it to their patients.

  15. Sorry for the mispellings in my previous message…. not yet used to a brand new iPad’s “keyboard”. Leslie, these private notes are a physician’s right. If not allowed to use a reserved space for his/her private notes about a patient, he/she will use Evernote, whatever. The disadvantage is that the private notes become disconnected from the electronic record. Expanding the idea, the EHR could have (and many have): 1) shared info with patients and all providers 2) shared info with other providers only; 3) private notes. I have developed a simple problem oriented medical record where every S, O, A and P have these three optional sharing schemes. Regardind how much goes into each of the three slots, well. providers must use their common sense. And, in case a legal issue arises, ALL the notes will be available for inspection. That’s is a good Damocles sword as good as any other!

  16. Thanks all for these comments.

    Sandra, agree with you that usually the problem is that docs write things and don’t tell patients and family.

    Dementia is tricky though; maybe YOU are mad that no one told you, but maybe your father doesn’t want you to know about it. (Many of my patients have conflicted relationships with their adult children, esp when those caregivers are concerned about the older person’s abilities.)

    Also, I’ve had quite a lot of patients get mad when I tell them I’m worried about their memory and thinking (although others are sort-of ok with the bad news). This is not to say we shouldn’t go OpenNotes; just to say we may need to have longer visit time and other accommodations to facilitate the communication of difficult topics such as this one.

    Renato, the vest pocket idea is interesting, but what to do when we are musing over something and WANT our colleagues to be aware of it, and maybe help us figure it out? And what if too much important information (things the e-patients and the e-caregivers want to know) ends up in the vest?

  17. There’s a rather simple solution to it. Every EHR plaaned to go OpenNotes should have what is called a “vest pocket” section, i.e., a notes section exlusively for the physician musings, speculations, unproved hypothesis and such. These belong to the physician as a convenient spot to store these individual thoughts, unaccessible to the patient, other physicians, auditors and managers. In Brazi, the Federal Council of Medicine has mandated the existence of this section in order to certify EHRs or EMRs!

  18. There’s no question that the VA Blue Button initiative is a big step forward but it remains an incomplete record.

    It does not include copies of medical records, progress notes, operative reports, etc. from care received before the warrior was treated by the VA or records from civilian providers who treat them while under VA care.

    Also, if the warrior or his/her dependents have other providers who make their patient records available via portals, a care provider treating them must access multiple portals to get a complete picture of his/her patient — something that docs don’t have time to do.

    FYI, Blue Button has recently been extended to Medicare records and is being trumpeted by ONC as a major first step towards interoperability. Unfortunately, its output is little more than a listing of encounters and billing information — typical third-party insurer data that is incomprehensible to patients and of little value to providers.

  19. I understand your concerns, and I also hear them voiced by other clinicians. My thought, however, is “would you like that kind of information discussed with you or hidden from you?” I would HATE to have “suspected dementia” in my chart without my knowing about it, even if it was true. If someone thinks I have dementia, please tell me. My father had “Alzheimers” on his list of diagnoses at one point, and I was furious that no family member had had that issue discussed with him. I’d rather know and figure out how to deal with it. If an idea is not fully vetted, it isn’t much good. Perhaps these issues come up because there isn’t enough time for physicians to have complete conversations with patients or family members – more communication would solve much of these issues.

  20. Well done. Good concerns, GREAT fodder for discussion.

    In my experience in other industries, this is what happens anytime a vault of dusty information is opened. Part of the process is for all involved to get their expectations straight and start working on what needs to be worked on.