By Nicholas Perkins
For the third time, the palliative care team physician, two nurses, and I met with the patient’s family members on a Zoom call. The first two meetings had ended abruptly when we attempted to address their loved one’s prognosis.
“We know and understand this is a sad situation,” the nurse began. “But we need to discuss Bill’s condition, and his goals of care.”
There was a pause. Finally, the daughter said, “We appreciate that … but why is my dad’s fever continuing? When will another neurologist see him? Why does it take so long for a nurse to answer the phone when we call? When will he be transferred to another hospital for a second opinion?”
“Those are important concerns,” the physician answered. “But right now, they are not the essential concerns. Your father has suffered a significant brain injury. We understand that you want to transfer him. But wherever he goes, the prognosis will likely be the same.” He paused, gently assessing the faces on the computer screen. “Bill is not recovering like we want him to,” he continued. “I think we need to discuss placement in long-term care.”
The three family members began to cry, quietly. All of us on the team acknowledged their need for silence. We were being transparent about Bill’s condition, while respecting their questions about second opinions. We were standing in the middle ground with them.
The middle ground avoids binary, all-or-nothing thinking and words like always or never. It challenges me to expand my thoughts and vocabulary so I can be open to different alternatives, ideas, and perspectives. These help me understand why some families choose to pursue aggressive treatment for loved ones with a terminal prognosis. The ability to stand in the middle ground with families means I support them with presence, education, and advocacy, even when they make decisions I may disagree with.
When a family is angry, the choice to stand in the middle is as much a competency as it is an art form. I think of the crucifixion when I confront another person’s anger and my own. Anger, like the crucifixion, can be heavy and rough, while the person who experiences it may feel exposed, naked, wounded, and vulnerable. When and if anger surfaces in a family meeting, it is important for me to be mindful. Sometimes I imagine that I am breathing under water and remaining comfortable in the uncomfortable.
I am learning that successful family meetings depend on my ability to suspend judgment, and the willingness to stand in the breach or the middle ground. When I stand in the breach with another person as a chaplain, I advocate for the individual. A sense of appropriate duty compels me to speak for the person who may not have a voice, and to see for the one whose vision may be obscured by frightening realities.
Brittle, fragile, vulnerable, and worried describe some of the feelings when families meet with palliative care teams. It is even more complicated now because of the isolation and separation that the pandemic has forced upon patients and their loved ones.
The word dignity is central to my chaplaincy; in fact, I mention it when I pray with patients because the stories that some share often depict a lack of dignity. When someone listens to you, how does it feel? What do you sense in your body and spirit? I hope those moments are free of advice or instruction, humorous anecdotes and glib remarks. Standing with anyone – not just in the middle ground – means I acknowledge their dignity. I do not want to be the chaplain who follows up every comment with a comeback, the one who responds to every opinion or story with a rebuttal. It is more important to accompany a person and to listen.
When I was 24, I was on the other side of a family meeting, the night an incredibly kind physician told me that my father had died of an aortic aneurysm. Also, years later, an equally compassionate doctor informed my family that any further treatment for my brother’s liver cancer would only prolong his suffering.
On one hand, those memories are painful, but on the other they are redeemable, since having them allows me to consider another person’s perspective. This means I listen when someone shares how it feels to be alone, or when family members request some time to absorb information. I needed that same time the night my father died. I understand the need for time when bad news makes it seem like time has stopped.
I doubt I will ever discover the middle ground in politics or global events. I do, however, believe that when I stand in it with an angry or frightened family, I give them the very things that an emergency room physician gave me the night my dad died. He put his warm, tender hand on my shoulder. He did not say everything would be okay or tell me my father was in a better place. He stood in the middle ground and offered silence beneath the bright lights of a cold emergency room. I pray I do the same.
Nicholas Perkins, BCC, is a palliative care chaplain at Franciscan Health Dyer in Dyer, IN.
