In a culture where articles and statistics about the quality end-of-life have begun to infiltrate magazines and articles and studies, the underlying message has yet to be a common part of family discussions. We are still a culture that denies talking about death and has courts a fear that if you speak about it, it will happen. Of course, it will happen—death happens to all of us at some point or another and we know that but when it’s you that’s in the spotlight, it’s a completely different story.
We’ve all heard of and many of us practice the adages, that to live a long and healthy life, eat properly, get enough nutrients, exercise daily and keep your mind and body active. No one can stave off death, but the magazine ads and studies will tell you that you can by following these few simple rules. But what happens if you have a stroke or a terminal illness diagnosis that points you directly on the expressway to declining health and an immediate invitation to meet your fears, desires, questions about your own death and thoughts about how you want to spend your remaining time.
Is your choice medication? Going through expensive and sometimes painful treatments that won’t cure you but might prolong your life by a few years—or one? Or is your choice to live the rest of your life as fully as possible untethered to procedures and hospitals?
When asked which should be more important when it comes to health care at the end of people’s lives, seven in ten Americans (71 percent) choose “helping people die without pain, discomfort, and stress,” while one in five (19 percent) choose “preventing death and extending life as long as possible” according to a 2017 Kaiser Foundation study on Views and Experiences with End-of-Life Medical Care in the U.S.
Seven in ten U.S. residents say they know at least a little about hospice care, while a third say they know “a lot.” Though 71 percent of Americans say that given the choice, they would prefer to die at home, with few saying they would choose a hospital, hospice, or nursing home in that order, but about four in ten think they are most likely to die at home, while about a quarter expect to die in a hospital, 6 percent expect to die in a hospice, 4 percent expect to die in a nursing home, and 17 percent say they aren’t sure.
With nearly half of dying Americans suffering from uncontrolled pain and more than a quarter of Medicare members experiencing pain sometime in their final month, can peaceful end of life be an actual option? Yes.
Katy Butler, the author of The Art of Dying Well and the critically acclaimed book, Knocking on Heaven’s Door, recommends having a vision. “Imagine what it would take you to die in peace and work back from there. Whom do you need to thank or forgive? Do you want to have someone reading to you from poetry or the Bible, or massaging your hands with oil, or simply holding them in silence? Talk about this with people you love,” she advises.
Once you have a clear idea of what you want (and just as importantly what you don’t want), feel free to expand your vision to include something you would like to experience as you face death. An example Butler uses is of a former forester, suffering from multiple sclerosis, who was gurneyed into the woods in Washington state by volunteer firefighters for the last glimpse of his beloved trees. There are several wish-granting charities for adults that provide terminally ill patients and seniors the chance to focus on something positive in their life. The desired products, trips, or experiences given by these charities provide either comfort in a person’s last days or the chance to give their family members one last happy memory together.
Drawing on interviews with nationally recognized experts in family medicine, palliative care, geriatrics, oncology, hospice, and other medical specialties Butler provides several suggestions on how to prepare for a good end of life:
- Stay in charge. If your doctor isn’t curious about what matters to you or won’t tell you what’s going on in plain English, you should fire that doctor. Most doctors focus only on the length of life.
- Know the trajectory of your illness. If you face a frightening diagnosis, ask your doctor to outline and track how you might feel and function during your illness and its treatments. It can yield far more helpful information than asking exactly how much time you have left.
- When the time comes, consider shifting your focus from cure to comfort. Consider exploring hospice sooner rather than later. It won’t make you die sooner, it’s covered by insurance, and you are more likely to die well, with your family supported and your pain under control.
- Arrange caregivers. Hospices provide home visits from nurses and other professionals, but your friends, relatives, and hired aides will be the ones to provide hands-on care.
- Don’t wait until your last breaths to explore your passion and deepen your relationships.
- Take command of your space. No matter where death occurs, you can bring calm and meaning to the room. Don’t be afraid to rearrange the physical environment. Weddings have been held in ICUs so that a dying mother could witness the ceremony. In a hospital or nursing home, ask for a private room, get televisions and telemetry turned off, and stop the taking of vital signs.
- Do not underestimate the power of expressing your true feelings about someone or something. There are five emotional tasks for the end of life: thank you, I love you, please forgive me, I forgive you, and goodbye. Even a small exchange of honest expression can clear up a lifetime of misunderstanding.
- Think of death as a rite of passage. Our ancestors were guided by customs that supported dying as a spiritual ordeal rather than a medical event. Without abandoning the best of what modern medicine has to offer, return to that spirit.
Butler shares her number one take-away from her years of experience: “Those who contemplate their aging, vulnerability, and mortality often live better lives and experience better deaths than those who don’t. They enroll in hospice earlier, and often feel and function better—and sometimes even live longer—than those who pursue maximum treatment.
“We influence our lives, but we don’t control them, and the same goes for how they end. No matter how bravely you adapt to loss and how cannily you navigate our fragmented health system, dying will still represent the ultimate loss of control.”