Illustration by Gingermoth
A problem all too familiar to nurses.
How often have we nurses talked to friends, family members, or each other about the importance of making end-of-life decisions well before that decision becomes critical? We see so many deaths that come only after extended and often avoidable suffering, it’s all many of us can do to keep from grabbing a family member’s hand and whispering, “Let her go!” At home, our families are used to hearing us say again and again, “Do not let me die like that!”
If we work in a hospital, chances are that we are confronted over and over again with trying to help families make “11th hour” decisions that will affect how their loved ones die. How do we broach the subject, when time is so short?
Trust prepares the ground.
This month’s Reflections article, “Difficult Conversations,” isn’t a primer to walk us through these conversations, but it offers an example of how we can take our cue from events or changes in the patient’s condition to raise the topic of the inevitable. Author Vanessa Arroyo illustrates how, after we’ve developed a relationship with patient and family and earned their trust, it may become possible to ask the hard questions.
I asked how he was feeling, and he said he felt anxious. When I asked if he was scared that he might be put back on the ventilator, he answered adamantly, ‘No more ventilators!’
I looked over at his wife. ‘Did you hear that?’ I asked her.
‘I did,’ she said. . . . Then I asked if they had discussed whether he would like to be resuscitated with compressions and medications if his heart stopped. . .
Alertness and sensitivity.
This conversation proceeded as Arroyo probably hoped it would: patient, family, and nurse on the same page, quietly discussing what comes next. Things don’t always go this smoothly. But what I took away from this account was that I need to be alert, to watch for an opening…to be vigilant not only in my assessments, but in looking for a chance to start this Difficult Conversation in a way that is natural, sensitive, and compassionate.
If I’m not thinking about this at all, if I’ve already decided that it’s “too late” to discuss end-of-life care, then I haven’t done all I can for this patient.
I had occasion to do this recently right after reading this piece. The patient suffered severe irreversible anoxic brain damage several years ago and has been ventilated, tube fed, and comatose and unresponsive ever since. I asked, simply, “Tell me what X was like before all this happened,” and just waited. They told me about education, community involvement, delight in family gatherings, sports, artistic talent, music … I’m under no illusions that they will finally let X pass gently anytime soon, but it’s that seed that may grow into, “X would never have wanted to be like this” that might someday help them let go.