Understanding Loss and Exploring the “Good Death”
When I speak with hospice volunteers, I strive to fully understand what it means to be human, exploring end of life experiences, often revealed through patients’ unveiled windows within. These discoveries are beautiful, profound and generally appear in the foreground when peering through the window. However, when I talked with Ann Neumann, her expansive observations unveiled elusive layers of foreground, middle ground and background, all residing in the expansive landscape, similar to features within an artistic masterpiece, such as Leonardo da Vinci’s portrait, the Mona Lisa.
At first glance, one notices the beautiful and mysterious face in the famous portrait, a reaction that is similar to the immediate sense of gratitude hospice volunteers feel for the privilege of serving a dying patient. Ann described the universal experience of people becoming “essentialized” near death, a state of being that can alter or readjust their long held priorities and needs. Love is, by far, in the foreground of Ann’s hospice experiences, but it’s not the sentimental love that is so often projected onto the dying.
“I’ve loved and lost beautiful people from every possible walk of life, to a host of diseases. Every one was different and this has been incredibly enriching-just knowing these people who I otherwise wouldn’t. To me, that’s probably the best thing about being a hospice volunteer,” she says.
The word loved is effortlessly integrated within her well-expressed sentiments. For Ann, learning how to love unconditionally is equally present in the foreground of her experiences at hospice.
“In many ways, I learned how to love, how to love unconditionally,” she notes.
Unconditional love for Ann simply means being present–for the moments of listening to a patient’s life reflections, of sitting together in silence, of responding for help when pain levels increase and of participating in family celebrations.
However, beyond these heart-warming experiences with hospice patients, Ann noted other aspects, often appearing in the middle ground and sometimes easily overlooked. Ann talked about her own father’s illness and the months leading up to his death. Unlike the Hallmark version of death (often portrayed in the movies), Ann found herself face to face with the stark reality of administering 24/7 sleep-deprived care, hindered with continuous cycles of cleaning, administration and modifications of medications, changing of soiled sheets and preparations of meals. Soon, a sense of helplessness, infused with anger, emerged for Ann as she observed the subtle changes taking place from day to day while realizing that she was greatly unprepared for his death. Ann remembered feeling as if society had let her down, shielded her from learning how to cope with this most basic and universal of human experiences.
“The actuality of death is not an idealized experience…when you acknowledge that someone is going, that they will not be here in weeks or days, that permanence is a kind of knowledge you cannot get any other way. The permanence of death,” she said.
After struggling for a year with the circumstances around her father’s death, Ann embarked on an eight year quest for knowledge and understanding, fully immersing herself into hospice volunteer work and scholarly research, exploring religious, cultural and medical aspects related to the end of life. Her journey culminated with the recent release of her critically acclaimed book, The Good Death: An Exploration of Dying in America. While she fully acknowledges the variations within end of life experiences in her book, it is the examination of the overall context, the ethical and moral issues that shape the state of dying in the US today, that are engaged in The Good Death.
“Most important to me, and you will hear it again and again in my writing, is the disparity that exists around end of life care,” Ann said.
These disparities are visible to all who stop to observe: the underpaid and undocumented caretakers; the variations in care quality relative to monetary means, and the limited access to medical services and/or basic health insurance for thousands of people in America. The following profound message remains close to Ann’s heart:
“The way we treat our fellow human being in this country—and who we treat poorly—is an absolute tragedy. I’ve seen it again and again at the end of life. In my book, there are beautiful stories of lovely deaths and lovely people who I’ve known but that’s not everyone-that’s a very small privileged group. When we are talking about end of life care, we should be talking about every one of us.”
Ann’s hope is that we all begin to see the complete picture, observing the subtle layers of foreground, middle ground and background, a death with dignity and respect for all.
As we continue to serve the dying, may Ann’s observations heighten our own awareness and move us to act and influence social change.
Ann Neumann is a hospice volunteer in New York City and the author of The Good Death: An Exploration of Dying in America (Beacon, 2016) and a visiting scholar at The Center for Religion and Media at New York University. Her work has appeared at The New York Times, The Washington Post, The Baffler, BookForum, New York Law Review, Guernica magazine (where she is a contributing editor) and other publications.
- Notice disparities and promote equality
- Understand the realities of death, not the Hollywood version
- Envision death with respect and dignity for all