The second scenario had similarities to the first. Carla also had an advanced cancer, but in this case a complication meant a trip to the OR for revision of an open wound.
After surgery Carla went to ICU for observation where her code status changed back to her pre-op DNR. Except that didn’t make sense to one of her caregivers who encouraged the family to reinstate full code status. The rationale was that since she was full code during surgery and that the surgery itself indicated a shift in outlook, that making her DNR was incongruent.
Or so it was argued to the family. Later the family reported being deeply disturbed by the push back from the nurse. They had struggled to make a decision about surgery and had carefully explored the options.
Now they wondered if they had made the wrong decision by resuming DNR. Had they made the wrong decision when choosing surgery?
On the surface these two cases share similarities; both feature complicated patients with advanced cancer and both resulted in questions related to their care. Interestingly in one there were questions about continuing care while in the other it was a question about when to stop.
In Mary Jane’s case the patient and family had a clear understanding of the risk of intubation and the chances of her recovering from pneumonia. In Carla’s case the family had deliberated over surgery before making the decision.
There was another significant similarity between the two. Extensive conversations about goals of care had taken place and those conversations were documented in the electronic medical record. In Mary Jane’s case there was a perception that the family was torturing her.
This misperception persisted as it was transmitted from one caregiver to the next without truly asking the family or Mary Jane what their goal was. Because she was intubated it was difficult to communicate with her, however she was able to confirm that she felt her remaining time was of value to her and she accepted her suffering as a way of sharing her faith.
Her desire was for the end of her life to be a witness to others. She was peaceful and calm. Everyone wanted what was best for her. Mary Jane died not long after. She did not recover from pneumonia but she and her family were satisfied that they made the effort.
Advocacy is about ensuring the patients voice is heard, it isn’t about imposing upon them what we think is appropriate.
Carla was discharged home with hospice. Her wound did heal but she was not a candidate for further chemo treatment. A POLST was filled out and she and her family were satisfied with the choices they made during her hospitalization.
The willingness of nurses and other caregivers to advocate for Mary Jane and Carla was exemplary, yet it was incongruent with what they or their families expressed as their wishes. Instead it was congruent with what some of the staff felt was appropriate. One assumption centered on the futility of the care provided. Surely the patient and family must not have understood or they would have made other choices.
Advocacy is an important part of nursing care. Often we are the voice for the patient, it is our responsibility to explain and help to make sense of what is happening to our patients. In the case of Mary Jane and Carla, advocacy without inquiry first was misguided. We must lear to ask first and then listen before acting. Even when there is no doubt it is important to clarify, reaffirm, and inquire. And listen.
Ann Brady is the symptom management care coordinator at the Cancer Center, Huntington Hospital, Pasadena, California.
1. Thompson MP. The skills of inquiry and advocacy: Why managers need both. Management Communication Quarterly. 1993;7(1):95-106. doi: 10.1177/0893318993007001005.