The Language Barrier of Do Not Resuscitate/Do Not Intubate
I’m nearing the end of my medical training, a period of life that has felt as though it lasted forever. I turned down a guaranteed medical school-admission position as a high school student and then spent the subsequent four years agonizing about whether or not I would ever become a doctor. No regrets though.
I certainly did not write as much as I thought I would through residency, but there are a few essays—primarily in the ASA Monitor—that I did manage to complete. Below is one of the unpublished ones.
*
A few months ago, I was completing my third rotation in the ICU—I See You, as my friend Jenny likes to dad-joke. I would wake up before dawn each morning and drag my body through the motions of clothing myself, making coffee, and driving to the hospital as the sky outside shifted in color from black to purple.
The days in the intensive care unit are as intense as the name implies. Generally if patients are “upgraded” from a regular unit in the hospital to the ICU, their prognosis has taken a turn for the worse. Either they are unable to breathe—“worsening respiratory status,” in medical jargon—or they are in danger of organ failure as blood ceases to circulate through their bodies. There are countless stories of individuals who made miraculous recoveries, but the reality is that if a patient does not recover within the initial few days in the ICU, the overall prognosis is very grave. Studies have shown that approximately 20% of total deaths annually occur in an ICU.
I grappled with this question almost daily then: how do you tell someone that he or she is likely going to die soon? Or worse still, how do you tell their loved ones? Many patients have an almost preternatural sense that they have reached the end of the road, so to speak, but more frequently the patients in the ICU are incapacitated to the point that their families are the ones making the decisions. And this is where the mess begins.
Mrs. Q was a 75 year-old former smoker with adenocarcinoma of the left lung, who initially came to the ICU after a stroke, thought to be caused by a dislodged clot from her leg that traveled up and passed through a hole in her heart, a patent foramen ovale. The hole in her heart had probably been present for her entire life. but the perfect storm of factors—cancer causing the fragile blood clot in her leg that broke apart and passed through and up to the brain—meant the dangers that the hole presented multiplied a thousand-fold.
Mrs. Q recovered from the first stroke, providing concrete evidence for a optimistic outcome. But in the hours after she was transferred from the ICU to a general medical floor to receive a filter to prevent further clots from travelling to her brain, she suffered a massive heart attack and needed to be resuscitated with CPR. And as glamorous as CPR appears on TV, its success rate hovers around 15% in real life. We ripped off her hospital gown as her family was ushered out of the room, beginning chest compressions as quickly as possible, time to CPR proving to be one of very few measures that improved mortality in patients with cardiac arrests.
Still, as fast as we were, we weren’t fast enough. Her family saw us begin to break her ribs in an effort to provide adequate compressions to provide blood circulation to the rest of her body. They saw us rush forward to place monitors on her as though she were not a human being, but yet another machine, like the ones surrounding her. Had they lingered by the door a few minutes longer, they would have seen us stick our fingers into the grooves of her cold-sweat covered groin in assessing her pulse.
What we do to patients in the ICU is often cruel. We do it in the name of saving their lives, but what kind of life does the patient lead after we “save” him or her? Sometimes they are permanently on a breathing machine, drifting in and out of consciousness with a tube stuck into an orifice in their body for feeding. Or they suffer from brain damage after they go several minutes without adequate blood circulation prior to CPR. In short, they are not the same as they were before they entered the hospital. Though they are “alive,” the lives they are living are not the kind of life that anyone would want for themselves. And this period can go on indefinitely without any improvement, thanks to modern technology.
It is because of this inevitable loss of quality of life that doctors push for “Do Not Resuscitate” and “Do Not Intubate” (DNR/DNI) status. Not everyone should be DNR/DNI, but the reality for certain debilitated patients is that it is unlikely that they would be able to recover after being attached to a breathing machine (DNI) or survive the brutality of CPR. Every patient is asked what his or her wishes are when they are admitted to the hospital, but in the ICU we hold meetings with the patient or families to clarify what the goals are, especially when we see someone deteriorating before our eyes.
Frequently it feels as though the suggestion of changing status to DNR, DNI, or DNR/DNI is perceived as a great betrayal on the part of health care providers. It is thought of as a death sentence or “giving up.” For Mrs. Q, who had survived a stroke and a heart attack in a span of hours, her children could not understand our concern that she would not survive another round of CPR. She was a fighter, they kept telling us, and she had already defeated unthinkable odds. Tones became a little sharp, and my whole team understood that it was time to stop pressing for a decision.
The reality is that I became a doctor to heal people, not to become the grim reaper. These conversations are hard for me. But the reality is that sometimes a person’s time has come, and extending the dying process is not healing. Expressing this to families, who are not willing to accept the eventual outcome, is where the language barrier arises. We both want the same thing—what is best for the patient—but the subjectivity of “best” leads to feelings of anger and betrayal.
Mrs. Q had another heart attack while in the ICU. Her body had enough of the torture of blood thinners and cancer clots and pain medication. Halfway through our third round of chest compressions, her daughter came forward and said this was not how she would have wanted to live. Quietly, her son, the healthcare proxy, agreed. We changed her code status to DNR/DNI, and she passed away within a few minutes.
How can doctors make DNR/DNI conversations better so that patients and families are more receptive to what we have to say? Ultimately, it comes down to timing. The first few hours or days are very emotionally intense, given that they are generally preceded by a sudden deterioration in health status. Expectations are high, as patients and families anticipate improvement in the section of the hospital that provides the highest level of care. And that hope is a powerful thing, as many patients do improve. However, this is also likely the time that it is most important to highlight the factors that brought the patient to the ICU and the seriousness of their condition.
With Mrs. Q, we missed this initial conversation. Her family probably felt ambushed when we brought up DNR/DNI after her condition began to deteriorate further. Still, this was a good learning experience for me early in my medical training. There is still an element of art to medicine, as much as we emphasize the science. It is this art that we must tap into if we ever hope to communicate more effectively.