1. Bennett, Carrie A. MS, CNS-BC


Families have a right to know the true meaning of 'survival.'


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I haven't seen her yet, but my husband has been updating me on her condition. He doesn't understand medical terminology, and his updates have lost some detail in translation, but I'm able to piece together a story that sounds logical: my mother-in-law's condition is grave. The chemotherapies used to put her leukemia into remission have savaged her body, and she doesn't have the reserve to fight this new respiratory infection. I don't know how to tell him this, so I just hold him and say that we should go and be with her. I'm a nurse, but I'm also his wife.


When I do see her, she looks just as I'd envisioned. She is sedated and intubated. The monitor above her bed shows a blood pressure of 68/46, a heart rate of 174. I expect to hear a critical alarm, but the monitor has been silenced. Her face is flushed, and her extremities are cool. She is on vasopressors and antiarrhythmics. She is on antibiotics, antifungals, and antivirals. A continuous renal replacement therapy machine sits beside her bed, waiting to dialyze her, but her pressures are too low. She is third spacing. I subtly pull the white sheet up to hide the fluid weeping from her extremities-something her children don't need to see.

Figure. Illustration... - Click to enlarge in new windowFigure. Illustration by Barbara Hranilovich.

Physicians say she has a chance of surviving with continued aggressive treatment. She is a "full code." Family gathers around her, holding onto the chance, misinterpreting survival as recovery. I don't know how to tell them the difference, so I stand aside. I'm a nurse, but I'm also their in-law.


A family meeting is called and I'm invited to attend. Physicians tell the family that her lungs are damaged, her liver is damaged, her kidneys are damaged, and her heart is damaged. They don't know how her brain is doing, but think it may be damaged as well. They reiterate the chance of survival and answer the one question I'd posed to them earlier: would a palliative care consultation be appropriate at this point? "No," they tell us, "she can still survive." Her family agrees to pursue aggressive care. She would want to survive, they reason. But survival continues to be mistaken for recovery, and no health care provider has explained otherwise. The physicians excuse themselves to insert a line in her femoral artery. I sit with the family. I'm their in-law, but I'm also a nurse.


I'm a nurse with years of experience in palliative care. Years of encountering similar situations: families caught up in a reality created by a misunderstanding of the medical world and its language. I carefully open up discussion and hold the palliative care consultation the family so desperately needs. We talk about the implications of her damaged organ systems-chronic ventilator support, dialysis, artificial nutrition-the likelihood of brain damage. We talk about her definition of quality of life-traveling the country with her beloved husband, hosting grand holiday gatherings, and reading to her dear, sweet grandbabies. And in our discussion it becomes apparent that she wouldn't be satisfied with simply surviving. She would want to recover-an unlikely feat at this point in her illness.


The physicians are updated and her code status is changed. Family gathers around her bedside and she dies a short while later. They're sad but appear at peace with their decision to let her die with dignity. The physicians gather around her bedside too, offering condolences. Their demeanor is professional, but they appear defeated-an ICU patient they couldn't save. I'm sad for all of them, including the physicians.


The finality of death is a concept so difficult to grasp. And, somehow, the medical culture has come to equate the finality of death with the ultimate failure-a detrimental view that precludes acceptance of palliative care services into most intensive care settings. My mother-in-law's death was not a failure, but rather an outcome of our attempt to respect her wish to live, not merely survive. Failure would have been to keep her alive, chronically dependent on a ventilator and dialysis and fed through a tube.