The awkwardness of open notes

Do patients really need to know what the doctor is thinking? The potential awkwardness of sharing the doctor’s notes, especially with older patients, was explored this week at The Health Care Blog, where it generated some interesting discussion about the pros and cons of how much information patients should be allowed to have.

It’s not that she’s against transparency or believes patients shouldn’t be engaged and have open access to their medical record, Dr. Leslie Kernisan writes. “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.”

She lists the sensitive areas: Possible cognitive impairment. Possible substance abuse, especially alcohol. Possible prescription misuse or diversion. Possible elder mistreatment. Concerns about ability to live safely at home or safely drive. Concerns voiced by family or caregivers.

Many of these can be issues regardless of the patient’s age. But they’re of particular importance in caring for geriatric patients, and they have a history of being under-recognized and under-addressed in the clinic setting, Dr. Kernisan writes.

It’s delicate to talk to a patient and family about the possibility of Alzheimer’s disease, or to suggest that an elderly person might no longer be able to manage independently at home or drive a car, she writes. It can get even more complicated when caregivers and family members are involved. Do the doctor’s private observations and speculations about what’s happening with the patient belong in an open medical record?

Dr. Kernisan wonders: “I’m not sure what I’d do if I were told tomorrow that 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.”

Complete open access to the medical record – including the doctor’s notes – is still fairly new, and there’s considerable learning yet to be done on how doctors adapt to it, how patients react to it and whether it has an effect, positive or negative, on the doctor-patient relationship.

OpenNotes, the largest project to date that has implemented and studied open access to the doctor’s notes, may have eased some of the early concerns about sharing more of the doctor’s thought processes with patients. According to the results so far, it hasn’t been more time-consuming for doctors or upsetting for patients to incorporate open notes in patient care. Most of the participants in fact have given it glowing reviews, and it seems to be fostering more patient engagement.

As Dr. Kernisan points out, however, the patient population in the OpenNotes study is middle-aged on average; what about elderly patients who may be dealing with dementia, vulnerability, loss of independence and other difficult issues unique to their stage of life?

The responses to Dr. Kernisan’s blog have been rather revealing in terms of who’s saying what.

A physician commenter felt it could be too anxiety-inducing for patients to read the entire contents of their medical record, doctor’s notes and all. “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,” she wrote.

There may be benefits to “limited access,” she wrote, “but only if the doctor is available and compensated for making sense of it to their patients.”

A biomedical and computer scientist with a Ph.D. suggested that sensitive notes be kept ┬áin a “vest pocket” section of the record, inaccessible to patients.

Not surprisingly, laypeople saw it differently. One person wrote:

If you’re my doctor, I want you to discuss your concerns with me. If you’re wondering about cognitive impairment, it’s very likely that I already worry about that. Writing it in your notes without telling me seems… Well, you’d have to explain your rationale.

The reaction from someone else: “Sensitivity is not secrecy – it is learning to say the whole truth with tact and with a compassionate understanding of how the knowledge will be applied.”

Although it was left unsaid, the entire debate raises the question: If sharing the doctor’s notes can lead to moments of awkwardness, for whom is it most awkward – the doctor or the patient?

Here’s another question: Should there be different standards of openness depending on the patient’s age?

Many people want to be able to exercise more preference over how much information they receive. Some may only want limited information and would probably make little use of open notes if they were available. But others want more and are willing to accept the anxiety, the uncertainty and whatever other negative emotions might arise as a result of reading their medical record.

As the ongoing open-notes debate shows, however, doctors have reservations about whether this is always best for the patient. Is there any way these two perspectives can be brought closer together?

Update, Jan. 28: Two of the pioneers in the OpenNotes initiative respond on The Health Care Blog with some observations on their own experiences with open notes and on the conversations they’ve had with other providers.

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