In 2003, just as my mother celebrated her 80th birthday, and after 25 years of living with a rare degenerative nerve disease, we faced a tough proposition. That year her health declined further and she suffered from congestive heart failure, which had her in and out of the emergency room and intensive care for three months. At one point, the doctor finally advised: “Your mother needs a feeding tube.”
I dug down deep within myself and found the strength to say, “No feeding tube.” He looked puzzled. I explained: “My mother has advance directives.”
The doctor’s face and response are emblazoned in my memory: “You’re murdering your mother!”
Although years have passed since that day, I remain distressed by being accused of “murdering my mother.” At the same time, I benefited at that moment from, and continue to find solace today in, the confidence my mother gave me to make decisions on her behalf through her advance care planning. But what about those — the majority of Americans — who face these difficult, terrifying, and confusing decisions about end-of-life medical care without the benefit of advance care plans? Why is it that such plans are not more common? And how can we better conceive of the role of clinicians and their communication with patients and their loved ones, not just at the end of life but throughout, to prevent experiences like mine?
In the coming decades, a growing aging population in combination with rapidly advancing medical technologies will force an unparalleled number of people and their loved ones to make unprecedented decisions about life and death. Against this backdrop, concerns about how we want to live at the end of our days become more and more crucial. But we can prepare ourselves by having the courage to convene conversations about dying, death, and loss within our families and communities and with our health care practitioners. Equally important is raising awareness of death and caring for the dying as a universal human experience.
Advance Care Planning: Communicating About Matters of Life and Death is intended to help facilitate meaningful communication and effective decision-making about medical care at end of life. At its heart, this book aims to provide a path to dying without regret.
Dr. Leah Rogne and I enlisted scholars, practitioners, and researchers who share a passion for improving care until and through death, and who use multidisciplinary, relationship-based models to think about this issue. The volume’s contributors explore the barriers to advance care planning, with an eye toward changing how American society deals with dying, death, and end-of-life care. The authors — ranging from physicians, nurses, social workers, and psychologists to medical ethicists and legal scholars — also share helpful strategies for facilitating meaningful conversations between patients, families, and healthcare providers to promote better outcomes and smoother transitions at the end of life.
Contributors encourage advance care planning as an ongoing process of communication, not a one-time event of filling out forms. Their case studies illustrate the importance of, challenges with, and prospects for advance directives and advance care planning. Many contributors share their personal stories, poignantly speaking to personal and clinical realities of communicating about advance care planning.
Susana Lauraine McCune, MA, CT, is a doctoral student of clinical psychology at Antioch University Seattle. Susana’s doctoral studies include concentrations in health psychology and art therapy. Susana began learning about death early in life. Her brother died in her arms when she was not quite five years old. Thus began her journey, and her quest, of understanding the relationship between living and life, dying and death. Her academic work includes applying existential phenomenology to living, dying, and grief. Her dissertation work is on formulating an interdisciplinary relational model of care (IRMOC) and applying this model to communicating about advance care planning.
Susana has served as a hospice volunteer and employee. She is a member of the Washington State Psychological Association End-of-Life Special Interest Group. She brings an interdisciplinary perspective to education, research, and support for professional caregivers as they facilitate advance care planning and provide end-of-life care. Her published works include Living Beyond the Other, and Engaging A/r/tography to Reveal Countertransference: Enhancing Self-Awareness in Caregiving Professionals. Susana has a BA from the University of Washington and an MA from Antioch University Seattle.