There was a time, you may remember, when I was off caffeine. It was horrible. Those times are past, and lately, I've been favoring espresso over American coffee. I usually pop out of bed about seven, hop in the shower, get dressed, and wake up PalKid. She's been a delight lately---I wake her up out of a sound sleep, and yet she's cheerful, cuddly, and ready to start her day.
Most of which she does without me.
I set her up with breakfast, and I'm out the door. Depending on traffic patterns, I stop at one of two coffee shops, both of them chains, unfortunately, but good chains. I order a doppio in a real cup, stand at the bar and enjoy it briefly, and I'm on my way.
From there, I fight traffic to my office, stamp out disease, and then head over to my hospital's resident clinic to stamp out more disease. One of the great things about working at a teaching institution is the ability to bounce ideas off each other. We share clinical conundrums, and often enough, ethical ones.
I love ethics discussions. I always imagine them taking place over coffee, with my brilliant colleagues explaining to me how in this case my definition of beneficence is not congruent with my patient's. That's not always the way it goes.
Many ethical discussions involve problems that are very real, and that are temporally constrained. A patient laying in the ICU may need the care team and doctors to come up with a solution immediately. And the various parties are emotionally tied to their firmly held opinions. Consequently, ethical discussions are sometimes a bit of a, well, you can imagine, I think. This is where tools like ethics committees can be very helpful.
In medicine, ethics discussions are very real. They deal with real people in need if real guidance. Let me share a (somewhat constructed) case with you. But first, a favor. Pour yourself a cup of your favorite beverage, place yourself in the position of both parties, and give me some feedback.
A young woman comes to see you in the office. She has been having some depression and anxiety. She also has some pain on urination and a change in her normal vaginal secretions. As a good doctor, you take a thorough history, paying special attention to the patient's chief complaints, trying to tease out connections to other problems and thinking of possible causes . In the standard format of a medical chart note, you complete the HPI (history of present illness). You move on to past medical history, family history, allergies, medications, and social history. Social is a catch-all category for living situation, employment, habits, etc. She is married with a teenage son. She works full time. The patient tells you that she smokes cigarettes on the weekend when he goes to the bar, and that last week at the bar she met a man with whom he had unprotected sex.
As you continue the exam, you are thinking about her chief complaints. Is she anxious because of the sexual encounter? Was the encounter consensual? Is she worried about being pregnant or having an STD? Is this a simple urinary tract infection? The sexual encounter is the piece of the history that ties everything together.
The patient stops. She says, "Doctor, look, I need you to not write that down---the stuff about the guy. You know my husband and I have been having problems, and we're working on it. I can't risk him finding out. You can't write it down."
Well, yes, I can. The medical record is my record of observations, formulations, and plans. I own it. I need it to be complete in order to make intelligent decisions. In some states, patients may addend their medical record to get in "their side", but from a practical standpoint, the chart is a tool the doctor uses to care for a patient and to fulfill certain legal requirements regarding documentation.
I need to use the information about her sexual encounter. She may very well have an STI, and without the complete sexual history, the visit doesn't make sense. But must I include this information? What are my obligations to myself, the patient, the law, and my profession?
When something like this happens, it's important to set down the pen or the keyboard and focus on the patient. Can she tell me more about why she wants this left out of the chart? Is she afraid her husband may get access to it? Or is it more of a personal privacy concern?
Medical records are a type of information known as PHI (protected health information). The law (specifically HIPAA) protects PHI from inappropriate disclosure. But this information can be legally shared with the insurance company and can be shared for other medical uses, usually if needed to benefit the patient. In this case, the husband may be the actual holder of the insurance policy, and the bills and EOBs (explanation of benefit forms) may come right to him. In addition, any lab bills may list the labs I ordered and the diagnosis justifying the lab. I have no idea how likely this actually is, and that's part of the problem---I cannot reassure my patient of her privacy.
I cannot lie in the chart. I can, I suppose, choose not to include everything I know, and I can word things carefully, but I cannot lie. If the patient tells me she has had three sexual partners in the last year, I cannot write, "the patient has been sexually active only with her husband in the last year." I can fail to explicitly write the sexual history, but any other doctor (or lawyer) reading the chart would wonder why I left out a sexual history when someone clearly has a suspected STD. If I fail to mention the sexual encounter, and a test for chlamydia comes back positive, someone may assume that the husband was sleeping around and gave the patient chlamydia---which may or may not be true, but the implication is quite different than if a proper history had been noted.
I should not add the information to the chart without telling her. Transparency encourages trust, deception destroys it. And if she cannot trust me to include her in decisions about her data, she is less likely to share important data with me in the future. On the other hand, I may be less likely to trust a patient who asks me to treat her without proper documentation. Poor documentation leaves me open to potential liability.
Quality of care
I see many, many patients. I cannot remember everything about every patient. What is written in their charts strongly influences my decision-making. If I fail to note this fact, I (or another physician) may fail to include important diagnoses in our future thinking.
Putting some of this into the language of medical ethics, how can I balance beneficence, non-maleficence, autonomy, and privacy/dignity?
Some ethical problems (most, really) do not have a clean answer. I want to properly diagnose this patient's problem while maintaining her trust. I want to avoid harming her by potentially exposing her private information. And I want her to feel she has some control over herself and her information.
But as always, it's a balance. I would tell her directly that I understand her concerns, and share some of them, but that failing to document properly may lead to other problems. She engaged in a perfectly legal behavior that she wishes to remain private, but that may have led to a serious medical problem. I can't change that, and she is left with no perfect choices. I don't want her to avoid treatment in order to avoid having her problem documented, but I have to decide as a clinician whether I'm willing to leave out that information (a very tough call. Also, no cheats here. We are assuming there is no way for her to obtain confidential/unidentified testing and treatment elsewhere).
So, go refill your cup, sit down, and tell me what you think.
(Dr. FreeRide is an invaluable resource for me when I'm confused about how to approach ethical problems. She rocks.)