On giving pearls rather than notes…

Shell-shocked. It is the only word I can use to describe the feeling I have coming off a 13 hour ED shift on a Monday in the critical care section, where the sickest patients are triaged. A 90-year-old woman in acute renal failure with laboratory values all out of whack, two possible aortic dissections, a woman in acute liver failure after a Tylenol ingestion several days ago – and this is only a drop in the bucket of all the ICU admissions who passed through my hands today.

Mondays are always sick days in the emergency department – after enjoying the weekend, people finally decide to come in to get checked out. And by that time they are usually much sicker. The truth is, they don’t come sicker than this. If they do, they’re dead.

An article published in The Wall Street Journal today, What the Doctor Is Really Thinking, discusses whether or not doctors’ notes should be available to patients. Although I believe that communication is an important part of medical care, I do not necessarily believe that there are benefits to distributing patient records to non-health care personnel.

A physician’s note is a compilation of evidence which leads to hypotheses, or a differential diagnosis. The “evidence” includes details of a patient’s chief complaint, medical history, and social history. It also includes more objective data such as vital signs, the physical exam, and laboratory values. The end of the note, the assessment and plan, is a  conclusion based on all of the data, and a plan which includes objectives for both treatment and diagnosis.

The affects of these notes on patients will more likely be negative rather than positive, especially for people who do not work in a healthcare profession. I list the reasons for this below.

(1) The idea of a “differential diagnosis” would frighten some patients: the entire purpose of this exercise is to consider all the different feasible diagnoses, so as not to leave one out – but many of the fatal diagnoses that appear in this list would cause patients unnecessary anguish.

(2) Abnormal laboratory values or test results might also frighten patients unnecessarily. Only in the context of looking at hundreds of thousands of laboratory values and test results does a physician realize which findings are concerning and which are simply incidental. Patients do not have the experience to distinguish between the two and would be unnecessarily worried by any “abnormal” findings.

(3) The social history, which is often a very important part of a patient’s story, should be kept in the strictest confidence. People who are depressed, who use drugs, who have crossed the boundaries of the law, or who have other personal matters that affect their health are already reluctant to tell physicians the truth about these things – if they were provided with a written document openly stating such things, they may be less inclined to have intimate conversations with physicians. The act of sharing the document makes these things seem more “official,” and may give the impression to patients that their secrets are not safe.

(4) Although patient notes are the wrong form of communication, it is still important that we communicate with patients. They should be given their CT scan results or their laboratory values, and they should also be given these values in context so that they can be correctly interpreted. They should be given their diagnoses, or even their possible diagnoses, but again – only the most probable diagnoses should be discussed, rather than the laundry list with which the physician starts.

(5) There is an incorrect impression that the note is the be-all end-all of a physician-patient encounter that contains all the answers about a patient’s health. This is far from the truth. A physician note does not address any of the patient’s questions or concerns. It usually does not address prognosis, nor does it address the psychological or social aspects of illness. It does not address all of the “what ifs” which will be encountered along the way, depending on how the diagnostic or treatment plans play out. It does not address the side affects of medications, or how the patient will feel; nor does it address the benefits and risks of procedures or imaging studies.

I think there is a great risk that doctors’ notes will be erroneously viewed as the “final word” in a patient’s health care. They will be viewed as the answer to patients’ questions, when, on the contrary, they are exactly the place you do not want to look for answers to the most important questions.

I also believe that doctors should write candidly, without fear of retribution or misinterpretation, about their patients. A physician’s thought process, just like any other human thought process, is biased, flawed, and specific to the individual. Doctors should not spend time being careful of what they write in the charts for fear they will be misunderstood by patients. Instead, they should spend time communicating – both verbally and in writing – to the patient in the right way, after all of the data has been collected and analyzed. They should then focus on tailoring their words to each patient,depending on their level of interest.

Patient notes provide an illusion of transparency and communication, but in reality they serve as a very poor form of communication between patients and physicians. However, because they are “official” documents, patients would most likely take them far more seriously than they should. Just like the laboratory, each patient is an individual diagnostic “experiment” who must be examined thoroughly before any answers can be obtained – and the doctor’s note is simply the rough draft of a final, polished diagnosis and plan. It is a record of the process rather than the result – and this process is more a reflection of a physician’s own thinking than it is a reflection of a patient’s condition.

Words are powerful, and they should not be taken lightly. The language of physicians in their notes is stilted, enigmatic, and often difficult to interpret. Physician notes lend themselves quite well to misinterpretation. A good physician can use these notes as a thinking process, come to a diagnosis, and translate the final results for their patients. This is our job: to sift through a container of salt and distill out the crystals, so that our patients can focus on the most important aspects of their illness in a world of chaotic and overwhelming medical information.

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7 Responses to On giving pearls rather than notes…

  1.  says:

    Could I just say what a relief to discover anyone who actually knows exactly what they’re discussing on the internet. You certainly find out how to take a problem to light and allow it to important. More people require to learn this particular and understand this section of the story. I cant believe you’re not more popular because you really have the gift.

  2. Pingback: Open Source Medical Records | Go HealthReform

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  4. Michelle W says:

    I came here from Grand Rounds, and found it it interesting that I wrote on the very subject of patient led health this morning. I haven’t seen anyone voice this opinion as specifically as here. I can sympathize with emmy, in that I have extremely low blood pressure that people often think is a mistake in their readings (I once had a doctor ask if I was dead). Also, my mother always insisted on knowing as much as possible about her children’s health, including access to records. She was able to spot errors and provide guidance to our doctors.

    But I can understand the concerns of the Medical Resident and others, especially in the unnamed phantom lurking behind the scenes: litigation. My main question for open record advocates is how will this access affect malpractice suits? What are the responsibilities patients acquire once this privilege is accepted?

  5. Pingback: Grand Rounds – July 27, 2010 (Vol. 6, No. 44) | InsideSurgery Medical Information Blog

  6. emmy says:

    I have been enjoying your blog. But I’m not sure that I agree 100% with this one. The idea that patients shouldn’t receive information because it might be upsetting is a bit patronizing. The kind of patients who would know those notes exist and would ask for them are more likely to be people who are veterans of the medical care system. And believe me, we are told to keep a complete set of our medical records (not that it’s possible). Saying to me “The idea of a “differential diagnosis” would frighten some patients” and “Abnormal laboratory values or test results might also frighten patients unnecessarily. ” holds all the weight of the idea that women younger than 50 don’t need mammograms because it causes too much anxiety. I was 46 when I was diagnosed with stage 3 breast cancer. On the contrary, if you tell me the abnormal result, I might be able to enlighten you, as in “No, I have hyperaldosteronism. My potassium level is never going to be 8. I will be doing well to have 3.5. The sample must have been contaminated.” or “You will see inverted T waves in leads 4 thru 6. It is always that way. I am not having a heart attack.” I guess you can tell by now that I’ve been around the medical block a few times. I know a lot about my lack of health. When a doctor wants to pat me on the head and say “just sit back and let us take care of this” it causes me to not trust them. I makes me wonder what is is they are trying to hide. I would say, don’t volunteer the notes, but if someone asks for them, give it to them.

    • I appreciate your feedback – and I agree that one of the most important things about the physician-patient relationship is adjusting the amount of relevant information depending on what the patient wants. Some patients, for example, prefer not to know about the specific details of laboratory values; others ask specifically to get printed reports of their health records. If patients would like more information, they should have access to it – by all means. As a patient, the more informed you are, the better – and there should be no difficulty getting access to medical records for this purpose.

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