When I started practicing as a nurse in an intensive care unit (ICU), everything I saw and heard seemed so unfamiliar. Like on a long immersion in a foreign country, I was unwittingly learning a new language—a diverse lexicon of technical terms, acronyms, and slang.
“He’s on AC 14, 350, 40%, and 5.”
“Neuro-wise, she’s A and O, super sweet, totally walkie-talkie, should be going to the floor soon.”
“Sorry he is a hot mess.”
“She’s circling the drain and the family wants everything done.”
The ICU nurse dialect was never explicitly defined or translated for me as a new nurse. But like a toddler learning to talk, I learned to process, contextualize, and apply. In a matter of months, I was still a novice nurse, but I was becoming fluent in this new language. However, one phrase made less sense to me the more I heard it, despite hearing it with unnerving regularity: “withdrawal of care”. And now, I want that phrase to go away forever.
Like many ICU nurses, I regularly found myself caring for patients who were nearing the end of life. One night shift, I was caring for an elderly patient with lung disease who had been on a ventilator for nearly 2 weeks without improvement. After a conference call with the attending physician, the patient’s children made the difficult decision to have his breathing tube removed the following morning, once they arrived from out of town and had a chance to see their father. The patient was unlikely to live more than several hours once the tube was removed, but I had learned that attentive nursing care and proper medication to manage his symptoms would ensure that his death was peaceful and dignified.
I was suctioning my patient’s breathing tube when one of my nurse colleagues inquired loudly from the door, “what time are we withdrawing care?”
“Not until day shift,” I replied casually, continuing my routine task, face-to-face with the patient.
I had heard and said that phrase “withdraw care” before, but something did not feel right about it this time. I was in the room with the patient, and he was neither brain-dead nor in a permanently unconscious state. He had simply been on a breathing machine too long and it was unlikely he would survive without one. His family knew that he would never want to be sustained in this manner, and that he previously expressed a desire for a comfortable and peaceful final chapter of his long life.
My patient might have been sleepy or delirious, but it was entirely possible that in that moment, he heard us talking about “withdrawing care”. What could that have possibly meant to him? What if there had been a family member in the room? To the uninitiated, the phrase sounds like we might just turn off the machines and the lights on our way out the door, never to return. The more I said and heard the phrase “withdraw care”, the more it sounded like we were abandoning a dying patient. I had a problem with that, and I still do.
Because it’s merely a colloquial phrase, “withdrawal of care” has no standardized definition. Broadly speaking, “withdrawal of care” is used by healthcare personnel to refer to the discontinuation of life-prolonging treatments, such as a ventilator, dialysis, vasopressor medications, extracorporeal bypass, artificial nutrition, and others.
So what exactly is the problem with saying “withdrawal of care”? For one thing, the phrase is simply not accurate. The American Nurses Association has long held the position that nurses are morally obligated to provide “comprehensive and compassionate” end-of-life care. The term “withdrawal of care” subverts this moral obligation, and eschews the medical and nursing interventions that should be used to promote comfort and alleviate distressing symptoms for dying patients and their families.
I’m not the first person to have pointed out the flaws of this phrasing. In their 2008 consensus statement, the American College of Critical Care Medicine issued recommendations for end-of-life care in the ICU. The authors clearly distinguished the withdrawal of specific interventions (for instance, a ventilator) from the withdrawal of care. “While the former is common,” the authors say, “the latter should never occur”. Bioethicist Trevor Bibler also posited that “withdrawal of care” is misleading, and further contended that similar ambiguous phrases, such as “withdrawal of life-sustaining treatment”, are too euphemistic, passive, and stilted to be used at the bedside. In fact, for this reason, the term “withdraw” appears to be falling out of favor in other countries as well, as noted by Connolly and colleagues.
The flaws of the phrase “withdrawal of care” are not just in the words themselves. The phrase may also have a deleterious effect on the actual care (or lack thereof) that patients receive. It’s important to remember that “withdrawal of care” is an informal phrase with no formal definition; therefore, its meaning is prone to individual interpretation. While a more experienced clinician may understand that care should never be wholly withdrawn, the phrase may very well be taken literally by less-experienced clinicians, and they may incorrectly surmise that dying patients and their families do not need expert care, or that they are less of a priority.
In an article in the New England Journal of Medicine, physician and linguistics scholar Anna DeForest told a powerful story of the neglect that resulted from “withdrawing care” on a dying patient, and she used linguistics theory to reinforce that the words we use shape our cognitive processing, and ultimately influence our actions. “Each carefully planned intervention requires an equally thoughtful retreat,” Dr. DeForest wrote. She argued that to say we are withdrawing care “confuses families and potentially prolongs the use of futile measures, but may also lead physicians—consciously or not—to provide inadequate care to their patients at the very end of their life”.
So what are we supposed to say instead when we are talking about discontinuing life support treatments? Although there is no single agreed-upon best phrasing, there are many alternatives. Whatever phrasing is chosen, there are two key considerations. First, it’s crucial to be specific about what treatments are being discontinued, and when; for instance, “We are going to extubate and stop dialysis tomorrow”. Second, it’s not enough to declare the treatments that are being discontinued, it’s pivotal to express what will be provided. I often find the phrase “transition to comfort measures” to be a helpful add-on, because it reflects a shift—not a cessation—of the scope of treatment and care. For brevity, some clinicians use the acronym CMO for “comfort measures only”. “End-of-life care” is another commonly used phrase to address death and dying directly. Other similar terms that are often used include “intensive comfort treatments” and “strictly comfort care”.
The point has been made: “Withdrawal of care” is ambiguous, inaccurate, and may negatively affect how we care for dying patients and their families. So why am I writing this?
Ten years after beginning my nursing career in the ICU, I’m now a palliative care nurse practitioner. In every hospital I have spent time in across the country, “withdrawal of care”, remains ever-present. I see it written in patients’ charts. I get text pages and calls from staff, sometimes with that same unsettling question: “What time are we withdrawing care?” I hear that gut-wrenching phrase almost daily, and perhaps hardest of all, I hear it most often from other nurses.
Every time I hear someone talking about “withdrawing care”, I can feel my muscles tense and my heart rate increase, almost as if my conscience itself is seizing. I have tried to redirect the language others use, to little avail. And it makes me wonder if the endurance of this terrible phrase is not an accident. Perhaps some people are indeed withdrawing care—not in a malevolent way, but because it’s simply too difficult to bear witness to death and grief.
Perhaps. But as a nurse, I refuse to accept that.
My plea to my fellow nurses is to remember our moral obligation to provide excellent end-of-life care to our patients. To do this, we must choose our words carefully and lead by example. We must also be mindful and not allow ourselves to become angered or self-righteous when others use problematic language. “Change practice by modeling your language in conversations…and others will imitate you,” says Barbara Reville, nursing director of adult palliative care at Dana-Farber Cancer Institute in Boston. The example we set is crucial for novice nurses and students who are still not fluent in this unique language. If we model the right language and behavior, we can equip the next generation of nurses and other clinicians to communicate clearly and compassionately.
In the midst of the COVID-19 pandemic that has claimed the lives of many, nurses are being called upon more than ever to simultaneously save lives and bring comfort to those who are dying and grieving. The words we use matter, and we can do better. It’s time to abandon “withdrawal of care” forever. Care is a part of the core identity of nursing, and it should never be withdrawn.
Alexander Wolf is a palliative care nurse practitioner in Cincinnati, Ohio.
References
American Nurses Association. Nurses’ roles and responsibilities in providing care and support at the end of life. Position statement. 2016. nursingworld.org/~4af078/globalassets/docs/ana/ethics/endoflife-positionstatement.pdf
Bibler TM. Why I no longer say “withdrawal of care” or “life-sustaining technology”. J Palliat Med. 2013;16(9):1146-47.
Connolly C, Miskolci O, Phelan D, et al. End-of-life in the ICU: Moving from ‘withdrawal of care’ to a palliative care, patient-centered approach. Brit J Anaesth. 2016;117(2):143-45.
DeForest A. Better words for better deaths. N Engl J Med. 2019;380(3):211-13.
Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine. Crit Care Med. 2008;36(3):953-63. aarc.org/wp-content/uploads/2014/08/recommendations-for-eol-in-icu-accm.pdf
