This is the third in a series of live blogging posts from the 2015 CFHA Conference in Portland, Oregon. Check out the other posts here and here
"End of Life In Our Time"
CFHA 2015 Conference Plenary Session 2
Saturday October 17, 2015 – 12:00 p.m. to 1:00 p.m.
The Grand Junction Players
Summary: Matt Martin
The final plenary session opens with muted blue light and the voice of a woman piped from the speakers singing “You’re a sky full of stars”. Images of telescopic views of space and microscopic views of skin and flowers flash across dual projector screens. Various quotes from various thinkers like E.O. Wilson, Neil deGrasse Tyson, and Carl Sagan appear as the first presenter, Paul Simmons, reflects on our shared humanity including our molecular makeup, the intertwined relationship of life and death, and the gratitude for life we can feel in the face of unavoidable death.
The second presenter Sabrina Mitchell shares a personal story of visiting her father in the hospital in the midst of applying for medical school. She recalls seeing her father strapped to a hospital bed with a twisted gown and terse conversations with hospital personnel. Her father’s mental status deteriorates and she receives little compassion or understanding from the medical staff. No one outside her family acknowledges her suffering. What a poignant example of how medical professionals struggle to adequately witness death in a meaningful and supportive way.
Stephen Mitchell, the second presenter, shares the loss of his unborn son Bo which the medical community terms a “miscarriage”. How do you give birth to death? “I have never found the words to this abrupt ending.” He felt love for Bo and held all four inches, .7 ounces in his hands following the birth. He wonders aloud “Can I call this a death? Is there meaning and acknowledgement in the scientific realm? It feels like a death, still does.”
The fourth presenters, Amy Davis and Lucy Graham, walk onto the raised stage next. The first shares a story of treating a young Cora Indian with AIDS named Francisco. At first, he was engaged in treatment, dutifully attending all appointments. Later a case worker informed the presenter, a physician, that Francisco was deteriorating and that he was refusing treatment. During one home visit, she held his hand to understand his decision and asked what he was thinking. “The black gods have told me not to take anymore pills” he said through interpreters. He was choosing a preventable death, in other words a passive suicide. She wondered about his mental health and about his cultural and spiritual beliefs. What is my responsibility now, she wondered. The second presenter shares her reflection on this patient. She recalls how the patient changed her focus from problem-based to more of discovery. The first presenter returns and recalls consulting with the psychologist who encouraged her to be at peace with what Francisco was requesting. They tried to find family before he died but could not do so. He died two weeks after ending treatment.
Randall Reitz recalls early memories of his father including his death and funeral. The moral of my story is that death destroyed my family, death created my new family, and death forever affected my career. He shares the story of meeting his future stepdad who had lost his wife. Randall's mom and new stepdad married and raised a large family. This intimacy with illness and death focused his mind and prepared him for a career in health care.
Two presenters return to finish the presentation. The narratives they shared today have common themes: What is death? What role do others play in our deaths? What autonomy do we have? How do we reassert our humanity in the face of god-like technology? The 2015 CFHA Conference theme this year is a perfect match for a discussion on death. When a tree dies in the forest it dies a natural death, becoming part of the ecosystem. It continues to nourish the forest. When considering patients who recently have died, were they nourished in their last days? How did the forest sustain their needs? Some hospitals are using AND (Allow Natural Death) instead of DNR (Do Not Resuscitate) designations to allow patients respect of a natural death.
We need to come alive for the dying, focus our energy on allowing natural deaths. We can raise our voices to share stories of grief, anger, and hope of our patients and families. This is the greatest spiritual and moral imperative of our time.
Reflection: Barry J. Jacobs
During the third plenary of the CFHA conference, in the middle of listening to Dr. Sabrina Mitchell’s searing story of her father’s death, I was struggling to choke back tears. I heard others around me sniffling in the dark. It wasn’t just the description of her dying father, strapped to a hospital bed and in agonized delirium, or of the treating nurse’s irritated callousness toward the visiting family members that so stirred the emotions. It was the spectacle of a fellow healthcare professional on stage, sharing raw, personal pain, but also implicitly revealing the rationale for many of our careers: We are wounded healers committed in our bones to relieving others’ suffering.
Dr. Mitchell’s story was one of several told by the Grand Junction Players (Amy Davis, Lucy Graham, Stephen Mitchell, Paul Simmons, and CFHA board member and the production’s organizer, Randall Reitz) during the plenary entitled “End of Life in Our Time.” Each player’s story—about our transience as beings, a fetal demise, cultural and spiritual reasons for a patient’s refusal of care, and the creation of a new family following the deaths of two young parents—evoked grief and made the point that we need to restore humanity to our healthcare system’s overly technological approaches to life and death. Their stories were various--a reminder of the respect we must have while listening for the particularity of every person’s story. The whole—illustrated with family photographs and enhanced by strummed music--was overwhelming.
I left the conference ballroom at the plenary’s end, sad and exhilarated and suffused with thoughts: I remembered my father, dead at age 52 of brain cancer when I was 15. I thought about how his death put me on the path to becoming a psychologist working in medical settings. I reflected on how he sits on my shoulder—sometimes heavily, sometimes lightly—during my days of trying to bear sure witness to patients’ lives.
Matt Martin, PhD, LMFT, is director of behavioral science education at the Duke/SR-AHEC Family Medicine Residency Program in North Carolina. He is the current CFHA blog editor. Interested in writing? Send a message at email@example.com
Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the author of The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent (2006, Guilford)