'Open Notes': Too Much Transparency With Patients?

Many oncologists—and I suspect other specialists as well—have faced a patient with a terminal or otherwise serious illness whose family implores them to dance around or flatly avoid speaking of the diagnosis with the patient directly. Because of legal and institutional policies, I have reflexively explained to these family members that this is inappropriate and unfeasible. But along with the easy answer that this decision is "out of my hands," I haven't struggled with my perspective that such a paternalistic approach has no place in modern medicine.

That changed recently after watching The Farewell, a remarkable movie about the range of cultural responses a family experiences when their elderly Chinese matriarch develops lung cancer. The family ultimately decides to withhold this information from her, arranging a manufactured family wedding in China as the pretense to bring everyone together to say goodbye.

Featuring a terrific portrayal by Awkwafina of a Chinese immigrant who moved to the United States in childhood and is now struggling to navigate between conflicting cultural identities, the movie is impressive in its thoughtful, even artful, discussion of both sides of a complex issue. The traditional Chinese family members articulate a sincere wish to assume and carry the psychological burden of the illness as a selfless service for a beloved family member.

Though I was not left with the feeling that my standard forthright discussion with patients is misguided, I came away less haughty about the inherent moral superiority of our presumed "enlightened" approach to communication between physician and patient.

The Open Notes Approach

Mere days later, I attended a meeting at my institution discussing the rollout of a new "open notes" policy, an extension of an initiative piloted by the Robert Wood Johnson Foundation at a few centers starting in 2010. This effort represents essentially the opposite extreme: complete transparency by making all clinic notes freely available to patients through a patient portal.

Although this approach is often met with trepidation by clinicians who fear having their documentation misinterpreted or second-guessed by patients, the experience with open notes by clinicians has been consistently favorable. Not only have patients overwhelmingly availed themselves of the opportunity to participate more in their care—in an initial study, 82% accessed at least one note in the first year of the program and 99% wanted it to continue^[1]—clinicians have also found that it improved medication adherence and productivity during visits.^[2] As patients have expressed the desire to have this option available to them,^[3] more and more healthcare systems are adopting it as a growing standard.

Whether you are receptive to or wary about it, if you don't already have it, the open notes concept may well be coming a healthcare system near you.

Gaps in Patient Communication

I'll admit to having some qualms about my notes being reviewed far more easily by my patients. Although I pride myself on being direct and honest with my patients, my self-consciousness about having my notes reviewed stems more from the discomfort of having my work heavily judged and scrutinized—an unease that I should accept as misguided for someone who comments so readily in public settings.

At the same time, I hope that increased transparency helps ensure that my comments shared verbally in a clinic visit can be reviewed by the patient later. I know that what a patient hears may be different from what I said, or at least what I meant to convey.

In the years before Epic, I remember visiting a patient in the hospital who asked me how long she had to live. I gave a thorough explanation of our uncertainty and the range of possibilities, only to leave and, while writing a note in the chart outside her room, overhear her tell a family member over the phone, "My oncologist says I have 4 months to live!" No, that's not what I said!

An open notes policy holds the promise of reducing these gaps in our communication, and perhaps even raising the level of understanding between us and our patients.

However, the implications are less clear when you consider the evidence indicating a large gap in what patients understand of their prognosis.^[4] It is further complicated by research suggesting that patients with metastatic cancer have the least accurate understanding of their true prognosis and the least realistic estimate of the efficacy of their treatment—yet they also tended to rate their oncologists as the most effective communicators and reported higher satisfaction.^[5]

Even if not done to the extreme of withholding a terminal diagnosis, as portrayed in The Farewell, is there some truth to the concept that ignorance is bliss?

What's Your Experience?

I would love for you to comment with your personal perspective on these issues:

Do you see the question of withholding a diagnosis as nuanced and debatable, at least on an ethical level, or is it anachronistic and misguided?
For those who have adopted open notes, has your real-world experience echoed the predominantly favorable experience published in the literature, or have you or your colleagues encountered frustrating situations with patients?
For those working in places where open notes have not become the standard, do you see them as a logical and reasonable point of progress or as another milestone on the road toward physicians having less control over their work environment?

Thanks for reading and hopefully participating in what I hope will be a productive discussion in the comments section of this article.

H. Jack West, MD, associate clinical professor and executive director of employer services at City of Hope Comprehensive Cancer Center in Duarte, California, regularly comments on lung cancer for Medscape. Dr West serves as web editor for JAMA Oncology, edits and writes several sections on lung cancer for UpToDate, and leads a wide range of continuing education programs and other educational programs, including hosting the audio podcast West Wind.

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