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November 2018

Ambiguity in End-of-Life Care Terminology—What Do We Mean by “Comfort Care?”

Author Affiliations
  • 1Section of Palliative Care, MedStar Washington Hospital Center, Washington, DC
  • 2University of Maryland School of Pharmacy, Baltimore
  • 3Department of Medicine, Georgetown University Medical Center, Washington, DC
JAMA Intern Med. 2018;178(11):1442-1443. doi:10.1001/jamainternmed.2018.4291

“Don’t you think he looks comfortable right now?”

We stand quietly at the foot of the bed and watch. The patient lies semisupine in the mechanical bed, intermittently breathing slowly and deeply before longer apneic pauses. Despite the soft groan of the bilevel positive airway pressure machine and the occasional chirps from 4 continuous intravenous drips, he seems settled, arms open, hands unfolded to the fluorescent overhead lighting. Even in this state of unconsciousness, he seems to be preparing to die.

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    2 Comments for this article
    All care should focus on comfort
    Jan Bakker, MD, PhD | NYU Langone, New York
    A very nice paper by Anne Kelemen on the confusion about the use of comfort care in the US healthcare system. I think this problem relates to another problem, briefly touched by Anne: In the US we don't talk about dying. So a system of communication is developed to keep avoiding the real problem. Comfort Care is one of them and the term Comfort Measures Only doesn't improve this. The quote from the resident says it all. Instead of offering a more quiet peaceful room outside of the ICU to be with their dying father it was offered because the patient was receiving comfort care.

    By avoiding the real thing, we doctors are creating a problem that doesn't need to be. Comfort should be the aim of every treatment even if it is by definition uncomfortable. We have means to make every uncomfortable situation comfortable; that’s not the challenge. The challenge is to adequately walk with the patient and his or her loved ones to the end and not to distract them from the fact that he/she will not be anymore. I have seen a lot of valuable time wasted by distracting patients/families from what's really important by talking around dying. I think the general care of a patient is aimed at recovery and in that process the patients should be comfortable. It's not an easy road to walk with your patient but it's a core value of being a doctor as even in this phase you can assist in 'healing'.

    Suggested Terminology for End-of-Life Care
    Ponon Kumar, MD, FACP. | East Michigan Hospitalists, Port Huron, Michigan
    Keleman and Groninger describe a very real problem at the end-of-life care. Most difficulties arise from the lack of consistent semantics and standardization. DNR (do not resuscitate), partial DNR and comfort care carry diverse meanings across the US. I am proposing the terminology to reduce confusion.
    Only 3 terms should be used to indicate the level and intensity of care - Full code, No code, and Comfort care/Hospice. This will avoid the need for complicated explanations and make it simple for the patient and family to understand. This also will reduce the time taken to explain the treatment plan. />Full code, the first box, indicates a full course of treatment with all options as in any regular patient. No code, the second box, indicates that a code blue i.e., cardio pulmonary resuscitation (CPR) and endotracheal intubation will not be pursued because they are considered futile or the family or the patient do not wish to be “resuscitated”. Family and patient should be told that in this case (No code), all other interventions including ICU transfer, vasopressors, blood transfusions and other medications will be pursued. “No code” does not mean “no treatment”.
    The third box is termed comfort care/hospice. Hospice is included in this terminology because comfort care and hospice are interchangeable. In many cases the family or the patient might not wish hospice to be involved or death might happen quicker before the hospice referral process is activated. When you talk about comfort care, make it implicit to the family immediately that this is not synonymous with making the patient comfortable. We make every patient comfortable. The difference is that in comfort care, comfort of the patient is the top and most important priority. I will not use the term DNR deliberately. This is a much maligned term with different connotations in different hospitals.
    Intuitively, any treatment option offered to a dying patient is either useless or ultimately will prolong the life of the patient unnecessarily. This may not be backed by randomized controlled trials, but it is just the humane thing to do.
    I do not agree with the authors’ approach of giving a la carte treatment options to the family and the patient in end-of-life situations. Family members are mostly not medical experts and there is hardly any solid evidence regarding the pros and cons of different management options. We are actually doing a disservice to patients and families in this highly distressed times by digressing into an endless discussion of the merits of different options. In general, all treatment options excluding CPR and intubation are available at the “No code” box. Once the patient moves to the Comfort care (third) box, all those options disappear and the remaining treatment options are solely directed to provide maximum comfort to the patient and ease any pain or discomfort during death. This fact should be actively communicated to the family. They could also be taught how to detect discomfort easily in dying patients by simply observing facial grimaces, thrashing movements or other cues, erring on the side of caution.
    The authors’ case demonstrates the current lack of unanimity in using the semantics at the end-of-life care. This was probably exacerbated by a lack of communication among care team members and the offer of an array of bewildering choices to the family. A compassionate discussion about the 3 boxes mentioned above with a clear decision taken before extubation might have alleviated the confusion in the case.