Why We Need to Talk Openly About Death

It happens to everyone, yet we rarely discuss it. Even before we experience it ourselves, relatives and close friends will. Gender, race, religion, sexual orientation, political preferences, profession, income are irrelevant. Bottom line: we all die. And yet, we have a hard time talking about death and dying. And when we do, there is discomfort and difficulty speaking about this topic. We are a death-denying culture and by not being open about death and dying, we leave ourselves unprepared to face other deaths and, ultimately, our own.

"How are you," well-intentioned friends, colleagues and neighbors asked after my father died. We all ask this question each day in interactions, fully expecting people to respond "fine," "OK." But I wasn't fine. My father had just died of leukemia. I was with him throughout the dying process and his actual death. Part of me had just died, too, no longer able to converse with my dad or see him again.

Just as we teach children to say "please" and "thank you," we should teach words of comfort to acknowledge death. Simply recognizing that a death has occurred and saying the words "my condolences" or "I'm sorry or sad about your loss," would be a start. For me, just hearing these simple words felt comforting and supportive. In my work as a genetic counselor, I'm accustomed to using these words when speaking not only about deaths, but other losses, as well, including miscarriages, stillbirths and loss of physical abilities. Someone who has experienced a loss will not be "fine" for a while, and it's important to repeat these comforting words over time. We should recognize that grief does not end, but begins, with the funeral or memorial service.

While schools teach students about the beginning of life, health and reproduction, there is no instruction about death and dying. I'm not talking philosophical or different religious beliefs about death, but simply teaching what happens physically to the human body at the end of life. Daily, we are exposed to death over and over again on television shows, an unrealistic portrayal where when someone is ill, the dying process is serene, the death abrupt and the body removed before the commercial break. Not having knowledge in advance about what to expect physically with dying leaves one unprepared and makes the experience more stressful than it need be.

As my dad was dying, the home-hospice nurses became my teachers. In the days leading up to my father's death, he stopped reading the newspaper and watching television, phone calls were shorter and he had less patience for viewing pictures and engaging in discussion—all part of the normal withdrawal from daily life that is part of the dying process. I learned that loss of appetite and decreased fluid intake are early steps in the dying process. Though we have a natural tendency to want someone to eat and drink, I had to learn to give my dad just sips of water; as dying set in further, to just moisten with a swab the inside of his mouth and put Chapstick on his lips. My father began to sleep more, his sleep interrupted by congestion and restlessness, which necessitated changing his position on a regular basis. A washcloth on his forehead provided some comfort as body temperature fluctuated from hot to cold. Blankets were put on and taken off in succession, depending on need.

It is said that hearing is one of the last senses to go when someone dies, so I shared memories and spoke about things I had learned from him that I would carry forward in my life. I put on classical music. A day or so before my dad died, his eyes had a fixed, glassy gaze, but I still positioned myself in his line of sight. I stroked his arm and held his hand. As death neared, there were changes in skin color, with extremities becoming purplish and blotchy as circulation ceased. Ultimately, my dad's breathing took more effort and became shallow, with irregular pauses between breaths, until he breathed no more.

As I reflect on this experience, I keep thinking that with some small changes in how we as a society approach death and dying, we could make this a better experience for everyone. In school, we should teach not just about health but about the changes to the body that accompany death and dying. Give students words of comfort and acknowledgment. They will surely have opportunities to use these words with friends and family members, even in childhood.

As adults we have the ultimate homework assignment, one that we must complete before an unwavering deadline (emphasis on "dead"). Our assignment is to talk openly about death and put together a folder with our wishes in terms of health care at the end of life, who to notify after death, instructions for what should happen with our body, bibliographical information for the obituary, desired charities, finances, where important information can be found, and thoughts on a memorial service or funeral.

This information is a gift you can give to the people who will have to grieve and cope with loss while sorting through complicated logistical details in a short time frame. Often, after a death, there's no one to ask for key pieces of information, leaving relatives to search through files or old address books. Having frank discussions about both the physical process of dying, and the logistical arrangements will make death more a natural part of life. Becoming a death-acknowledging culture, rather than remaining a death-denying culture, may make that ultimate life lesson less difficult.