Caring for a man dying of cancer reminded me to always guide patients toward decisions that best align with their goals of care.
The paper-thin disposable contact isolation gown weighed heavily on my body. My breathing was labored under the tight mask. I looked over my shoulder at the other team members, who were frustrated and exhausted. Their eyes said they wanted to leave. We’d been in the room for over an hour. A family meeting was underway between a patient’s doctors and the patient, who deflected the conversation by calling his nurse for pain medicine. His siblings were an ocean away. Over the phone, a translator spoke to the wife. His wife, at the bedside, with so much anticipatory grief, intermittently cried as she expressed the fear of losing her husband.
We worked to build rapport and trust, acknowledge emotion, and gently share the message, “We’re so sorry, there’s nothing more we can do. You’re dying.” He understood. He knew he was dying. He shared what was important to him, which was faith—being with God. He prioritized being pain-free in the face of a tumor that was rapidly tearing through his muscles and organs. “Do you want resuscitation? Do you want to choose a hospice agency?” In response, he pulled away, asking his siblings over the phone, “What do you think?” There was silence, and then they replied, “We can’t make the decision for you and we’ll support whatever you decide.”
Days went by to give the family space and time to process, yet no decision was made, and the team was frustrated. It prompted me to think deeply about choice. Choice is both a privilege and a burden in a society of abundance. We can be overwhelmed with fear, yet privileged by having control. The patient was paralyzed in his uncertainty.
The next day, I asked him, “How do you usually make decisions in your life? How have you made hard decisions in the past? Who was there to help?” Then, I said, “You didn’t have a choice about cancer, but you can choose, if you want, a ventilator and the way you want your life to look now.” I thought about how determining code status is often the last choice one may have in one’s medical life. About how the last choice one often has to make is determining the way one wants to die. Yet, my patient still didn’t make a decision.
“Based on what you’ve shared is important to you and what you wrote in your advance directive a few months ago, we won’t offer resuscitation if your condition worsens.” He finally agreed to transition to comfort care.
I felt depleted cognitively, emotionally, and physically. He took my hand, squeezed it, and said, “Thank you.” It was the greatest gift to know that I had helped my patient and his wife reach a decision.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.