Last summer, my 88-year-old mother was diagnosed with late-stage colon cancer and opted for in-home hospice. She died three months later.
Talking about death can be difficult. It can bring up feelings of fear, anxiety, and sorrow. It can also feel awkward as it requires acknowledging one’s own (or a loved one’s) mortality. In some cultures, death is openly accepted and celebrated (think of Mexico’s lively, colorful, loving Day of the Dead ceremonies, which include costumes, parades, and feasts), but in others the topic is ignored and avoided.
However, there are many benefits of having an open and honest discussion about our eventual death with those who love and care for us. It can offer solace to grieving families to know what a family member most desires. When a person is nearing the end of life, family may be under enormous stress. Letting those who love and care for you know about end-of-life decisions ensures your wishes are known and respected, eases the burden on loved ones, and helps prevent the kinds of in-fighting that sometimes surface. Additionally, to talk openly about such things can be a profoundly intimate act.
I was lucky that my parents spoke openly about death. Years before my mother’s diagnosis, she asked me to be her healthcare proxy. After signing paperwork to that effect, we met with her primary care doctor, working through our questions and concerns together.
Around the same time, when Mom was still perfectly well, she showed me what she called her death file, which contained paperwork she felt I’d need later, including information about the family tomb in New Orleans, people she wanted notified upon her death, insurance information, and more. Over the years, we added papers that we thought might be helpful (a copy of her birth certificate, a notarized letter reiterating her wish to donate her organs, etc.).
Because we had been so open with one another, when Mom chose hospice at the end of her life, I asked her a question that some might find unusual. “Mom,” I said, “would you like to help me write your obituary?” She very much wanted to. I wrote a rough draft, which she marked up in pencil from her bed. We worked until she felt it was right; then she chose the photo she wanted to accompany it. Reviewing her life and legacy together in this way is one of my most cherished memories.
One afternoon just a few days before she died, she asked the hospice nurse, “Why is it so painful for me to swallow?” The nurse told her something perfectly reasonable, but for some reason, Mom asked again. I leaned over where she lay in her hospital bed and said, “Mom, you’re having difficulty swallowing because you’re dying.” The hospice nurse looked shocked at my directness, but Mom clutched my hand and said, “Oh, honey, that’s very reassuring.” Because I had listened to her over the years, I knew that she did not want to be spoken to like a child, and that she longed for direct, open talk.
If I were to offer advice about how to begin such conversations, I would suggest listening with a nonjudgmental heart. If a loved one brings up the subject of their own aging or death, try to just listen. Ask about their wishes and thoughts rather than immediately offering opinions. Being a good, loving listener without judgment allows the people we love to explore and develop their own personal philosophy around end-of-life issues.
Our culture has many taboos around illness, aging, and death, and we are directed in may ways to never speak about it. As my mother demonstrated, though, death can be approached with kindness and pragmatism. Like the proverbial “monster under the bed,” avoiding the topic altogether only increases people’s anxiety.
I’ve taught Death Studies classes, and while every family and situation is unique, my college students almost uniformly wished they could talk about such things more openly with their families, but they didn’t know how to bring up the subject. The Conversation Project — a nonprofit dedicated to helping people talk about their wishes for end-of-life care — created a free guide to help get the conversation started (theconversationproject.org/get-started). And there are many other resources available — books, videos, and podcasts — that can be a huge help.
I have found enduring comfort from the certainty that I was able to help my mother have the death she wanted, at home, pain-free, watching the birds from her bedroom window. It was a gift from her to leave me with no lingering regrets. I suspect it will comfort me for the rest of my life, and I wish for this level of intimacy and comfort for all families.
N. West Moss is the author of several books, including Flesh & Blood: Reflections on Infertility, Family, and Creating a Bountiful Life. Her work has appeared in The New York Times, Salon, McSweeney’s, and elsewhere. She is a graduate of Columbia University’s Narrative Medicine Program and has taught Death Studies classes at the university level.
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