How do we respond to families when the wished-for outcome is unlikely yet, at the same time, we want to preserve their hope? For those of us taking care of this patient, the clinical picture was obvious and dire. But any explanation was met with the same response: If he can just get stronger he can get more chemo. We could easily characterize the family’s response as an obvious example of denial, but doing so only slaps a label on it. That label is like the label on a bottle, it only describes what is inside. Often, we focus on the label of denial, feeling it must represent a lack of information. The solution then becomes to give more information, which often backs families into a corner of resistance. They feel we do not hear them and we feel they do not listen to us. The patient’s family was determined to hold on to the possibility of him showing clinical improvement, even when it was explained as unlikely.
In the ICU setting, the noise and pressure of ongoing adjustments to a patient’s condition can sometimes overpower the softer side of communication. So much is critical and time sensitive. Yet many times a softer approach accomplishes more. Instead of the goal being to break down loved ones’ denial, perhaps acknowledging it and revealing that there is in fact more than one outlook is better. This is where www can be helpful.
Wish One place to start is to acknowledge the current circumstances. “I wish he wasn’t here in the ICU. I wish he’d been able to tolerate the chemo.” The wish statement recognized the difficulty of the situation without tearing it down. It allowed for loved ones to see that their hopes and concerns had been heard and in turn that we were not plotting against them.
Worry “We are all hopeful that he can overcome this latest hurdle but I worry that he may not be able to. Have you had a conversation about what to do if he isn’t able to get better?” From a clinical standpoint, we knew the patient would not get better, probability outweighed possibility. Too much had already gone wrong, the trip back to better would be impossible regardless of the fight within him. But rather than going straight to the logic of explaining that, it was okay to acknowledge the hope. Too often the barrier of denial prevents us from finding a way around it. Admitting to being worried about his condition helped the family see our concern was more than just clinical.
Wonder Another approach is to ask, “I wonder what you see as happening next.” This question allows for both outcomes — getting better or continuing to deteriorate — and is more likely to be considered if I have allowed for the thread of hope families are clinging to. It is okay to direct it toward hope for wondering what is next. The question can nudge them further without the feeling of being pushed in one direction. It allows families to tell us what they envision and that allows for a direction we can follow. “I wonder what you imagine things will look like if what you hope for does not happen.” This does not take hope away, it allows for room to think about the unthinkable.
Of course, there are times when no communication strategy is able to break through the grief and denial. Wish, worry, and wonder may be rebuffed. Our best efforts to connect with the family and help them see the reality of the situation did not materialize. In this case, the patient could not be weaned off the ventilator. In spite of being supported by the ventilator and 3 pressors, his blood pressure could not be maintained and he passed away in the ICU with family at his bedside.
As hard as it is to be in a situation where we feel we can help, we have to accept that, unfortunately, patients may die in a way that we had hoped to avoid. Then www can be a way to reason and communicate to ourselves: I wish it had gone differently, I worry about the family, and I wonder if I would do things differently next time.
Ann Brady is the symptom management care coordinator at the Cancer Center, Huntington Hospital, Pasadena California.
1. Byock I, Gonzalez M. Advanced Communication Training Workshop (ACT). Oral presentation at: Palliative Care, Pain Management and Whole Person Care Symposium; September 21-22, 2017; Fullerton, CA.