As hard as it may be to read the title of this article, it’s even harder to hear “withdraw care” uttered in the NICU on a regular basis. Should we retire and replace this phrase? Should we instead say, “redirect care as appropriate?”
The power of language
Alexander Wolf, a palliative care nurse practitioner, thinks we should, and he’s not the only provider who feels that way. His sentiments are backed by the American Nurses Association (ANA) and the American College of Critical Care Medicine (ACCCM).
The ANA supports the position that nurses have a duty to provide comprehensive and compassionate end-of-life care. So the phrase “withdraw care” is a misnomer. Moreover, part of our job as providers is to clearly and calmly guide patients and their family members through the care process. To Wolf, saying “withdraw care” sounds like we’re abandoning a dying patient in their final hours—the opposite of a dignified death and what we actually do.
The ACCCM points out the difference between withdrawing specific interventions and withdrawing care, saying, “the latter should never occur.” After all, proper medication management and nursing care are required to transition from life-sustaining care to comfort care when an infant is born at the limit of viability.
How language influences action
Wolf explains how one physician and linguistics scholar, Dr. Anna DeForest, goes a step further, saying that the words we use as providers influence the care we deliver. DeForest asserts that our words affect our cognitive processing and, ultimately, our actions. Thus, by informing our team and a patient’s family that we are withdrawing care, we may, consciously or unconsciously, provide patients with inadequate care.
By saying instead “redirect care as appropriate” or “initiate end-of-life care,” we are prompting our team and the patient’s family to accurately anticipate the next steps in the care of a dying patient. In this way, we can better ensure proper discontinuation of life-prolonging treatment and initiation of comfort measures only.
Differing perspectives within medicine and nursing
If it seems like physicians and nurse practitioners differ in more than just their choice of terminology when it comes to end-of-life care, that’s because they do. A study published in BMC Pediatrics notes how neonatal physicians and nurses, in particular, differ in their opinions about how end-of-life decisions should be made and who should make them.
Neonatal nurses were significantly more likely to find withholding of intensive care interventions such as antibiotics, total parenteral nutrition, nasogastric tube feedings, and respiratory support to be less acceptable than physicians.
They were also significantly more likely to report that they had insufficient time to make end-of-life decisions and that legal constraints and inconsistent unit policies got in the way of decision-making. Finally, neonatal nurses were more likely than neonatal physicians to favor the hospital ethics committee as the ultimate decision maker and to see NICU parents as being less equipped to make end-of-life decisions for their child.
Where do we go from here?
From the words we use to the decisions we make, it is important to acknowledge that as providers across neonatal disciplines, we may differ in how we approach end-of-life care. Acknowledgment of these differences is the first step in avoiding conflicts within the neonatal team and with the parents of our dying patients.
Moving forward, we must choose our words carefully when planning end-of-life care. Doing so can help ensure that we provide our patients and their families with clear, comprehensive, and compassionate care.
Do you think we should retire and replace the phrase “withdraw care” with “redirect care as appropriate?” Share your thoughts in the comments below.
