Over a period of four years, I have collected accounts and transcripts from health-care providers, friends, and family members of the dying who generously shared what they had witnessed. Through the Final Words Project, its website, Facebook, and email, I have gathered data (with consent, of course) across the United States and Canada while also conducting interviews in person and by phone. I have now gathered almost two thousand English utterances, which range from single words to complete sentences, from those a few hours to a few weeks from dying.
While I considered the use of digital recorders at the bedsides of the dying to capture final utterances, the sacred and private nature of those last days made this both ethically and logistically untenable. So, I decided to turn to those who had been at the bedside — loved ones and health-care providers — and ask them to share transcriptions, interviews, and recollections. I also interviewed professionals in the fields of linguistics, psychology, palliative medicine, and neuroscience to gain greater insight into terminal illness and cognitive and psychological processes. Participants included the dying individuals I have heard or observed directly, family members and friends who share their transcriptions and accounts, and experts in the field who share their observations.
I organize the language samples and accounts by linguistic features and themes. I have been both guided and inspired by Raymond Moody's research into unintelligibility and his "typology of nonsense." Many of the patterns that emerge are also described in the observations of health-care professionals and experts I interview. As I learn of these patterns, I share them with families, friends, and hospice personnel with the aim of offering tools and insight that could guide their communications with the dying. I am not a medical expert — my training is in linguistics — so I approach the study of death and dying through the lens of language.
This inquiry was inspired by what I heard and saw in the three weeks my father spent dying from complications related to radiation therapy for prostate cancer. As I sat with him, it was as if a portal had opened — and I discovered a new language, one rich with metaphor and nonsense that spilled from my father’s lips. As I transcribed his words from between the worlds, I witnessed a remarkable transformation.