Adapted from the blog Mortal Matters on Boston.com.
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 fom her nursing facility was that she was “full code,” although during a recent hospitalization here she and her physicians 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, and they transferred her to our medical intensive care unit on full life support.
This kind of problem happens repeatedly in emergency departments across the United States — 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.
We don’t tolerate this for other basic information that we need to take care of someone properly. Any medication allergies are prominently displayed on the first page of the patient’s electronic medical record, as is insurance information.
Doctors later tracked down the woman’s son, who confirmed he was her health care proxy and said he knew with certainty she would not have wanted the care she was getting. The respirator was disconnected. She died peacefully a few hours later.
In most US medical centers today, missing or incomplete or conflicting information about a patient’s goals of care, or about a patient’s preferred proxy and/or 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.