Incorporate laughter and joy where you can, giving yourself, your patients, and their families, moments of respite.
I greeted Eva as I entered the room. Her 2-year-old son was in the hospital bed with mottled, dusky skin. He’d been dying very slowly since we withdrew his life-sustaining therapies three weeks ago. We’d talked through his body’s decline, our recommendation to take away treatments that were no longer helpful, and the profound discomfort of wondering when he would die. When I asked what was on Eva’s mind that day, she replied, “I need names for my new chickens.”
Eva, proceeding with a divorce from her child’s father after he became overwhelmed by the sadness of their son’s condition, had bought eight chicks for her farm as a way to divert her attention and focus her energy. I sat by Eva and agreed to help her name the chicks. She sighed and said, “I just need to talk about chickens today.”
I returned later in the day with a list, created with the help of my team. Her favorites included Chicki Minaj, Feather Locklear, Chris Hensworth, Pluck Norris, and Charles Bockley.
When I saw Eva a couple days later, she took a deep breath as I walked into the room and said, “Ok, I’m ready to talk about hospice now.” We transferred her son to an inpatient hospice, where he died peacefully a few days later.
Working in pediatric palliative care, the conversations I have with families are often the hardest ones they will ever have. I watch their faces crumple as they hear themselves say their worst fears out loud for the first time. We help people make decisions no one should ever have to make, ones they will live with forever.
As Eva taught me, some days we need a break, a day to name chickens, so that we have the emotional energy to discuss the impossible.
Here are 3 things I’ve learned along the way:
1. Build your marble jar.
Researcher Dr. Brené Brown uses the allegory of the marble jar to demonstrate building trust. For every kind, trustworthy act someone performs, you add a marble to the jar. Ideally, a jar should have lots of marbles in it before talking about big topics like suffering, comfort, and death.
2. Show up when things are going well.
Families can start to dread seeing a particular team if they only come by when things get bad. Stop by for a few minutes just to see how the day is going, or when there are things to celebrate.
3. Embrace levity.
Meeting with families in crisis takes a toll, even when we try our best to create boundaries. Incorporate laughter and joy where you can, giving yourself and your families moments of respite.
I encourage you to try some of these strategies . . . unless, of course, you’re chicken.