In 2005, when her 60-year-old father refused experimental treatment for advanced non-Hodgkins lymphoma, journalist Ann Neumann thought she was prepared for his death. In a phone interview from her home in Brooklyn, N.Y., Neumann, currently a visiting scholar at the Center for Religion and Media at New York University, recalled, “I imagined that he would curl up in his bed and we would make him soup and we would hold hands and talk and then he would close his eyes and that would be it.”
What Neumann learned, she said: “That is not the dying process whatsoever.”
A lifetime of exposure to death scenes in movies and books had not readied Neumann for death’s visceral reality. “To be quite graphic,” Neumann said, “I’m talking about the puke and the feces and the dirty bedclothes and the bruising of the skin; that particular physical intimacy with someone you love, that proximity to imminent decline and death. Nothing had prepared me for that.”
Neumann’s experience inspired her to write “The Good Death: An Exploration of Dying in America,” published this week. In the immediate aftermath of her father’s death, however, she didn’t anticipate writing a book. She was simply grieving, and angry at both the medical profession and society in general for having equipped her so poorly to face the end of her father’s life.
To educate and comfort herself, Neumann became a hospice volunteer. She made deep emotional connections to her patients, several of whom she profiles in the book. She also grew more curious about the state of death in America. “I put my journalism hat on and started an investigation that, at first, was really for my own purposes,” she said.
Neumann spoke with bioethicists, activists, and others about the controversies she explores in “The Good Death”: withholding nutrition and water from the terminally ill; famous end-of-life cases such as those of Karen Ann Quinlan and Terri Schiavo; assisted suicide and its opponents in the pro-life and disability rights movements.
Doctors, Neumann believes, could better serve dying patients and their families if they were better informed about dying themselves. “If it were up to me I’d require every intern, every medical student to spend one semester as a hospice volunteer,” she said.
She also notes the contributions of recent books like Atul Gawande’s “Being Mortal,” Paul Kalanithi’s “When Breath Becomes Air,” and Meghan O’Rourke’s “The Long Goodbye” to broadening the public conversation about a traditionally taboo topic.
Though she is no longer a hospice worker, Neumann still visits the elderly widower of one of her late patients every Sunday. She hopes, one day, to advocate for people who lack resources for adequate end-of-life care. Dying, Neumann said, about which she once knew so little, is now “very much a part of who I am.”