Liz Morris loves exploring complex questions. Her professional experiences in project management, librarianship, and community development prepared her well for her favorite role as mom to Colson, who has been impacted by mitochondrial disease since birth and inspired Morris to face the complicated aspects of his life through writing and advocacy. Her essay “Seeking Clarity” appears in the Fall 2021 issue of the Intima.
A progressive, terminal disease is a natural disaster. Whether it strikes with the unexpected swiftness of an earthquake or gradually subsumes everything in its wake like a hurricane – destruction remains the inevitable outcome. Providers and patients swirl together around the edge of the end in a constant cyclone. Palliative care providers ease patients and families into the eye of the storm and help hold them steady as it passes. Julie Freedman captures this relational dynamic in “Vigil,” her non-fiction essay from the Spring 2021 Intima.
Vigil charts the slow decompensation of Eleanor, a patient living with amyotrophic lateral sclerosis (ALS), over the course of several months and three hospital admissions. Dr. Freedman, a hospitalist and palliative care physician, attends Eleanor at each admission. The author describes the difficult forecasting she does during Eleanor’s hospital stays, marked by pneumonia, respiratory distress, and increasing fragility. As she internally assesses the benefit or harm to Eleanor of interventions like intubation and morphine, Dr. Freedman must also anticipate the impact of these encounters on Eleanor’s family, and the subsequent story they will tell themselves of her death. The author notes of her experiences in these end-of-life encounters, “I am aware of the family’s eyes on my hands, of how my words might replay in their heads, that they will relive my patient’s last moments again and again. In this sense, the family becomes my patient too.”
Dr. Freedman’s awareness of the family experience during Eleanor’s death fills me with gratitude as a bereaved mother who has benefited from palliative care. In “Seeking Clarity” from the Fall 2021 issue of Intima, I describe my own bedside experience the day my son died in the Pediatric Intensive Care Unit. I articulate the clinical knowledge and advocacy skills I developed during Colson’s four years living with a severely debilitating form of mitochondrial disease. He, like Eleanor, presented to the hospital with pneumonia and respiratory distress. He had always been fragile. I note that, “…the day he died, when we had the option to put him on ECMO after attempts at mechanical ventilation failed, I knew it was not the answer.” What I do not say is that a palliative care physician sat with me and my husband and named death as the likely outcome of our decision to forego further intervention. She offered us permission to meet death head on. It’s a story we tell with conviction.
Liz Morris loves exploring complex questions. Her professional experiences in project management, librarianship, and community development prepared her well for her favorite role as mom to Colson, who has been impacted by mitochondrial disease since birth and inspired Morris to face the complicated aspects of his life through writing and advocacy. She serves as a family advisor at Seattle Children’s Hospital and is a volunteer ambassador for the United Mitochondrial Disease Foundation. Morris is committed to helping families find the information they need to help them live well in the face of life-limiting illness. She is a 2021 Blogger-in-Residence for Courageous Parents Network, whose mission is to empower, support, and equip families and providers caring for children with serious illnesses. Find Liz Morris on Instagram @mrsliz.morris.