“Do you want to know what will happen as your body starts shutting down?”
My mother and I sat across from the hospice nurse in my parents’ Colorado home. It was 2005, and my mother had reached the end of treatments for metastatic breast cancer. A month or two earlier, she’d been able to take the dog for daily walks in the mountains and travel to Australia with my father. Now she was weak, exhausted from the disease and chemotherapy and pain medication.
My mother had been the one to decide, with her doctor’s blessing, to stop pursuing the dwindling chemo options, and she had been the one to ask her doctor to call the hospice. Still, we weren’t prepared for the nurse’s question. My mother and I exchanged glances, a little shocked. But what we felt most was a sense of relief.
During six and a half years of treatment, although my mother saw two general practitioners, six oncologists, a cardiologist, several radiation technicians, nurses at two chemotherapy facilities, and surgeons at three different clinics—not once, to my knowledge, had anyone talked to her about what would happen as she died.
There’s good reason. “Roughly from the last two weeks until the last breath, somewhere in that interval, people become too sick, or too drowsy, or too unconscious, to tell us what they’re experiencing,” says Margaret Campbell, a professor of nursing at Wayne State University who has worked in palliative care for decades. The way death is talked about tends to be based on what family, friends, and medical professionals see, rather than accounts of what dying actually feels like.