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Communicating Care at the End of Life


Carey Candrian

While health care at the end of life is changing, the language for talking about treatment options and patient preferences around the end of life is taking longer to change. This book carefully details the way language shapes decisions around end-of-life care. Using ethnographic research from two sites that offer emergency care and end-of-life care – a hospice and an emergency department – the author illustrates common themes around language use that serve as microcosms of the larger healthcare system in the United States. The sites have different purposes for providing care, yet the themes from both serve as guidance and reflection for other areas of caregiving.
The language used to talk about death holds consequences and opportunities for understanding and making decisions about care practices. This book uses personal stories and perspectives from patients, family members, and medical workers to paint a picture of some of the issues and tensions individuals and caregivers face. With an aging population – one that represents a major public health challenge in the twenty-first century – Carey Candrian argues that examining the care we provide for individuals, especially aging individuals, is fundamental to creating a developed, ethical, and engaged society.
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Chapter 2. The Cost of Understanding


At the beginning, I thought the ED would be more difficult for me to experience as a researcher, a student, and a 27-year-old daughter, granddaughter, and sister. I was disgusted at times with what I saw and what I heard. But I have also been astonished with the care, courage, intelligence, compassion, and strength of patients, families, and providers in the ED. Hospice was going to be a saving grace in the messiness of death. Or so I thought. It was going to be a place of comfort, people enjoying their last moments living without needles, cords, and machines. For some reason, the loud noises and bright lights were comforting in the ED. At hospice, the silence rattled my soul up and down. I couldn’t escape patients’ bodies, swollen, bandaged, wrinkled, white, green, bald, blind, deaf, cold, smelly, motionless, and crippled. At hospice, I saw how illness and age literally take over bodies, skin, and minds every week.

By year one of my immersion with these sites I was breaking down. My experience of breaking down tells us much about living and language. The past few months have been spent getting even closer with my data while still remaining in the field on Friday afternoons. I’ve primarily been reading through fieldnotes and re-reading interview transcriptions. Writing notes from the ED came naturally: I saw, listened, and reported. But I am not sure if I ever really let myself feel what was happening when I was there. At the...

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