[Editor's note: Please visit part 1 of Dr. Harpham's take on OpenNotes.]
Does the opportunity for patients to read their medical charts help or hurt patients’ ability to become Healthy Survivors?
Open notes can facilitate Healthy Survivorship for some patients.
Unfortunately, other patients may learn something about their condition that makes it more difficult to get good care or live as fully as possible. Or they may experience feelings that threaten the physician-patient bond. Patients take a risk when reading notes intended for a medical audience.
Wait! If open notes become the norm, physicians will adapt their notes to accommodate the possibility their patients will read what is in the chart.
We’ve seen this happen before. After insurance representatives and malpractice lawyers began using physicians’ chart notes, clinicians notes began including information intended for insurance representatives and malpractice lawyers. For example, “Discussed with patient the risks and benefits of each treatment option.”
Similarly, as open notes become standard, clinicians will change their style of recording their findings, prognosis, conclusions and plans. Willingly or reluctantly, clinicians will change the possessive adjective from “my” to “our” when talking about a patient’s medical chart.
Are charts intended for both clinicians and patients helpful or harmful to Healthy Survivors?
Is the transparency inherent in open charts conducive to Healthy Survivorship?
In most contexts, transparency is considered a virtue. But increasing transparency can have unintended negative consequences, too. With this in mind, let’s look at two challenges physicians face in the setting of open notes.
Medical jargon can have derogatory connotations in social settings. For example, clinicians today use the term “obese” as medical shorthand for “at least 20-30% above average weight for their height, age, and sex” (from Taber’s Cyclopedic Medical Dictionary). Patients reading their chart might be offended by the term “obese.” Others might conclude their physicians are making judgments about their character. Patients’ anger, shame or embarrassment could jeopardize the clinician-patient bond.
Detailed differential diagnoses serve clinicians, not patients. Physicians routinely record the many possible diagnoses for a problem, including serious problems that are highly unlikely. Patients reading their chart might freak out after learning about diseases that weren’t even on their radar. Patients’ distress can jeopardize the clinician-patient bond and create obstacles to Healthy Survivorship.
I believe clinicians can find ways to write their notes in ways that are less likely to cause problems for patients who read the notes, without jeopardizing the value of the notes to clinicians. It will take creativity and effort, but it can be done.
My bigger worry is the apparent conflict between sharing chart notes and delivering compassionate care.
For me, the crux of the problem is this: Do open notes conflict with the ideal of compassionate care?
When I was in practice I spent a great deal of time and effort tailoring what I said to each patient when reviewing my findings and presenting my recommendations. Which facts I shared and how I phrased them depended on:
- the patient’s preferences for information
- the patient’s communication style
- the patient’s level of medical knowledge
- the patient’s medical situation
- our relationship over time
I strived to communicate information in ways that promoted each patient’s Healthy Survivorship (even though back then I didn’t call it that!)
The act of breaking news – good or bad – and making recommendations were dynamic processes that occurred in real time. I constantly adjusted what I was saying, depending on the patient’s response to what was being said, as well as the patient’s questions or comments.
In contrast, physicians notes are stripped of what I’ll call “the filter of compassion” — words and actions that help patients hear and process medical information in healing ways.
I see now that my initial reservations reflect my knee-jerk reaction that open notes can’t possibly support compassionate care.
Here are some practical tips for overcoming some of the challenges Healthy Survivors may face.
Language: You may feel offended by an acronym, word or phrase. First find out the intended meaning before drawing conclusions. It likely means something different in medical settings than in social settings. For example, “SOB” stands for shortness of breath.
Prognosis: You may feel disheartened — or despairing — after reading your prognosis. Again, be sure you know what a word means before drawing conclusions.
Words such as poor, guarded, grim and grave can feel like stabs to the heart, even if simply reinforcing something you already know. That’s because seeing it in print can make it feel more real, even when nothing has changed from yesterday.
Words such as favorable, optimistic and good can trigger fear or disappointment in some patients, too. As above, seeing a prognosis in print can make the recent (or current) threat to your health and life feel more real. Before your diagnosis, you likely did not hear or see a prognosis for your life.
Always keep in mind that a prognosis is not a prediction. Nothing pleased me more than when one of my patients did unexpectedly well and proved my prognosis wrong.
It’s a waste of time to argue about whether giving patients access to their chart is a good or bad idea. Patients have had the right to review and amend their charts since passage of the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Information technology is here to stay. I believe it’s just a matter of time before electronic medical records are universal and patients read their charts more often than not.
The challenge for today’s clinicians is crafting chart notes that are (1) optimally useful by clinicians in the care of patients and (2) helpful — or, at least, not harmful — to patients who read their chart. This is no easy task and will require retraining on both sides of the stethoscope.
The challenge for today’s Healthy Survivors is learning how to read the chart and use the chart in healing ways. Until clinicians embrace the notion of patients reading their medical charts, patients may continue to face obstacles to obtaining the charts and using them in healing ways.
I now believe that both clinicians and patients will benefit when clinicians take advantage of the increased transparency of open notes to strengthen clinician-patient bonds. Chart notes that reflect effective and compassionate communication between patients and healthcare professionals can help pave the way for all patients to become Healthy Survivors.
Wendy S. Harpham is an internal medicine physician who blogs at Dr. Wendy Harpham on Health Survivorship and is the author of Only 10 Seconds to Care: Help and Hope for Busy Clinicians.
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