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Posted by Dr. Lachlan Forrow September 3, 2013 04:33 PM
Looking at how a health care system identifies and tracks information about patients is one way of telling what information that system considers important. And despite all of today's rhetoric about the importance of "patient-centered care", the way our systems actually work tells a different, and often disturbing, story.
And sometimes that story hits very close to home.
Earlier this year an elderly woman with advanced cancer arrived in our Emergency Department from a nursing facility where she had developed a fever and respiratory distress. She was critically ill, and unable to express her own wishes about what we should do. The information we had from her nursing facility was that she was "full code", although during a recent hospitalization here her physicians and she had agreed on a "DNAR" (Do Not Attempt Resuscitation) order. And even though she had been our patient in the past, staff in the ED had no documentation of her having a health care proxy, so they had no one they could clearly turn to to ask what she would want us to do.
So the ED staff did the right thing, given the incomplete and conflicting information they had. The patient was intubated and started on a mechanical ventilator. ED staff placed both a central venous line (for medications and blood tests) and a nasogastric tube (for fluids, nutrition, and medications), and they transferred her to our Medical Intensive Care Unit on full life support.
ED staff weren't sure what she would have wanted, so they correctly erred on the side of life. But why was the information about her wishes so incomplete and conflicting, especially when she had so recently been our own patient?
This kind of problem happens repeatedly in emergency departments across the US -- patients arrive with a major, life-threatening condition, unable to speak for themselves, and immediate, life-and-death decisions need to be made. But ED staff often don't have the information they need to know how to care for each patient the way she or he would want, even when that patient has been under the care of physicians in the very same health system.
We don't tolerate this for other basic information that we need to take care of someone properly.
If a patient who has been under our care arrives in the ED with a fever, ED staff know immediately whether the patient has any medication allergies. No medical history is considered complete without this information, and any medication allergies are prominently displayed on the first page of the patient's electronic medical record. And yes, this patient had two known medication allergies, first identified and recorded a year earlier, then verified again the last time she was hospitalized, and immediately-visible to ED staff the minute she arrived. Other information our health system considers crucial was also there for ED staff to see immediately, including insurance information -- at a glance they could see that this patient had Medicare Parts A and B, and two different supplemental forms of insurance, each listed with the relevant insurance numbers.
But ED staff had conflicting information about her "code status" ("full code" from the nursing facility, and "DNAR" from our own records). And there was no immediately-available information at all about her goals of care -- how important, if at all, was living longer to her? And no immediately-available information about her preferred health care proxy or spokesperson.
As soon as they had time, the doctors in the MICU searched through other parts of her record. They found notes from her oncologist, both during her last hospitalization here and also during an outpatient visit afterwards. These notes described in detail the patient's decision not to proceed with chemotherapy, and her understanding that that meant her cancer would inevitably progress and be fatal. They spoke with the oncologist by phone, who said it was completely clear that the patient would not have wanted the aggressive life support she was currently receiving, and who was surprised and upset that the previous "DNAR" order had somehow not been communicated clearly to the nursing facility. They found a note in our own records from a month before, documenting that the patient had told one of our nurses that she wanted her son to be her health care proxy, but that note had no contact information for him. They tracked down her son, who confirmed that he was her health care proxy, and who said that he knew with certainty that she would not have wanted the care she was getting, and that she would want the respirator discontinued.
On Day 3 of her hospitalization the respirator was disconnected. Any signs of respiratory or other discomfort were treated with morphine, successfully ensuring comfort, as her son said she would want. She died peacefully a few hours later.
Suppose that when she arrived in our ED, the "allergy field" on the front page of her electronic medical record had been blank. Suppose ED staff had given her penicillin and she had had an anaphylactic reaction. Suppose further review of her records here showed that her penicillin allergy was known, but somehow not documented in a way that was promptly available to the ED staff.
Such a serious medical error would, in most U.S. medical centers today, be considered a "never event", and would immediately trigger a "root cause analysis" to ensure that whatever failure(s) led to the error would never happen again.
But in most U.S. medical centers today, missing or incomplete or conflicting information about a patient's goals of care, or about a patient's preferred proxy/spokesperson, is the norm. At Beth Israel Deaconess Medical Center, a major effort is underway to change this, and this patient's care reminded us of how important and urgent it is to succeed.
While having "The Conversation" with our doctor about our preferred goals of care is a necessary step toward ensuring we will receive appropriate "patient-centered care", it is not sufficient. Our health care systems need to be "Conversation Ready" -- including having systems that ensure that whenever we have clearly expressed our preferences, those preferences will be clearly documented, promptly available at any predictable future point of care, and respected.
This is at least as important to our care as systems that document our allergies, and our insurance status.
The author is solely responsible for the content.
About the authorLachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »
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