What Scares Me

Here’s the gist of a conversation I just had with a longtime friend. Patty’s practiced a couple of medical subspecialties, as well as completed a rigorous fellowship in medical ethics. A ton of experience caring for patients, along with her intelligence and compassion, has made her pretty wise. This is a doctor who gets both the intellectual and the emotional pieces of being a physician and a healer.The conversation naturally turned to one of our favorite subjects, the poor medical care that results way too often when doctors don’t listen to patients. She told me about a demented old woman she’d just been asked to see. Four days prior, this unfortunate patient had landed in the intensive care unit after suffering a disastrous medical event. By the time Patty saw her in the ICU, the woman had a tube in her mouth with one end in her trachea and the other attached to a respirator that breathed for her; an IV poking out of her neck that delivered fluids to the central veins in her chest, and another line that reached into her heart all the way from an artery in her wrist. No doubt there was a catheter in her bladder too.It was my friend’s job, as the ethicist attached to the intensive care unit, to talk to the family about how they wanted to proceed. Even among professionals who encounter death and dying all the time, many are surprisingly uncomfortable with talking to patients and their loved ones about resuscitation status. Death is a scary subject. Years on the front lines as a hospice physician and ethicist have made Patty comfortable with, even eager to ask these difficult questions because, almost always, it’s a great relief for people near the end of life to be asked directly what they want and be given the opportunity to respond with clear, honest answers.This old woman’s family, upon being posed the dreaded question of code status, answered, immediately and definitively, that their mother, wife, grandmother, did not wish to be resuscitated; that, in fact, she never even would have wanted to be intubated. So the ethicist/physician informed the staff, who immediately turned off the respirator and removed the endotracheal tube. She died peacefully a few minutes later. In the meantime, Patty went to the computer, called up the patient’s electronic medical record (EMR), and checked the boxes for “Do Not Resuscitate” and “Do Not Intubate.”It was that simple. When I was in medical school, long before there were EMRs, we used to say, “When all else fails, talk to the patient.” If the people taking care of that old woman had just bothered to ask her family what she wanted before they placed her on the slippery slope of intervention that comes with a bed in the ICU, huge amounts of suffering and expense could have been avoided. This is an example of how a simple EMR checklist, by reminding providers to ask a question and document the answer, could have been a tremendous boon to the quality of care. If only the professionals had used it.Unfortunately, the electronic medical record, with its endless checklists and cut-and-pasted gobbledygook, too often gets in the way of asking the sorts of questions and documenting the answers that are crucial to caring for a patient. Ethics consults are not a billable medical service. Patty can afford to ask open-ended questions because nobody in the business office cares how many boxes she checks in the EMR when she records a patient encounter. In general, the more items a provider can document they inquired about or examined, the more the billing office can charge. If a doctor clicks to indicate they have asked about urinary burning and poked the belly of the patient, that counts as one system queried and one examined. On the other hand, there is not an box to check that indicates a bone marrow transplant patient is so concerned about his 8-year-old daughter who has missed a week of school because of a cold, compounded by worry about her father and conflict with the grandmother who’s caring for her, that he’s threatening to leave the hospital and return home immediately, in spite of the increased risk of acquiring a fatal infection on the outside.My friend can type such a story into the EMR or even dictate it and have an automated transcription system turn it into pretty good prose. She tells me nurses and doctors often go to her notes, written in English, to learn so much more about how their patients are doing than vital signs, laboratory results, imaging reports and lists of checkmarks from the clinical encounter can tell them. When she needs to know something about her patient beyond the homogenized data that appear in the EMR, Patty actually talks to the patient’s doctor or, even better, to their nurse.Certainly, we cannot practice medicine without real data. But if we don’t have the real stories too, we’re being mechanics, not doctors. People are people, not machines. What makes us tick cannot be reduced to blueprints.How to do justice to both data and story is the crux issue for the EMR. So far I have not seen a good solution on the horizon. Before too long, I hope, artificial intelligence will get good enough at turning narrative prose into usable data that we can have our story cake and eat the data too.Beyond the crucial pieces of information that are left out now when we care for people, what scares me most is the way that cramming the process of care into what fits into the schema implicit in an EMR (no matter how detailed the blueprint) transforms how we think about caring for people. It’s always been hard to get medical students to ask open-ended questions. I worry that today’s trainees are so comfortable with their eyes on a screen and their fingers on a keypad that it’s harder than ever for them to learn the value of looking a patient in the eye, taking their hand, and asking, “What scares you?” then sitting back and listening for the answer; not to mention documenting that information in a way that is of use to the person working the next shift in the ICU.

Digital Healing: People Information, Healthcare

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