When Ann Neumann’s father was diagnosed with non-Hodgkin’s lymphoma, she left her job and moved back to her hometown of Lancaster, Pennsylvania. She became his full-time caregiver—cooking, cleaning, and administering medications. When her father died, she was undone by the experience, by grief and the visceral quality of dying. Neumann struggled to put her life back in order and found herself haunted by a question: Was her father’s death a good death?
The way we talk about dying and the way we actually die are two very different things, she discovered, and many of us are shielded from what death actually looks like. To gain a better understanding, Neumann became a hospice volunteer and set out to discover what a good death is today. She attended conferences, academic lectures, and grief sessions in church basements. She went to Montana to talk with the attorney who successfully argued for the legalization of aid in dying, and to Scranton, Pennsylvania, to listen to “pro-life” groups who believe the removal of feeding tubes from some patients is tantamount to murder. Above all, she listened to the stories of those who were close to death.
What Neumann found is that death in contemporary America is much more complicated than we think. Medical technologies and increased life expectancies have changed the very definition of medical death. And although death is our common fate, it is also a divisive issue that we all experience differently. What constitutes a good death is unique to each of us, depending on our age, race, economic status, culture, and beliefs. What’s more, differing concepts of choice, autonomy, and consent make death a contested landscape, governed by social, medical, legal, and religious systems.
Ann Neumann is a visiting scholar at the Center for Religion and Media at New York University, where she is a contributing editor to the Revealer. Her articles have appeared in the New York Times, Bookforum, the Nation, and Guernica.