“The sobering fact is that there are worse things than having someone you love die. Most basic, there is having the person you love die badly, suffering as he or she dies. Worse still is realizing later on that much of his or her suffering was unnecessary.” So writes Dr. Ira Byock, a professor at Dartmouth Medical School, in his thoughtful and deeply felt book The Best Care Possible, published last year.
I’ve written before about Byock’s pioneering efforts to help us think more clearly about death and dying. In his new book, he asserts that we make dying a lot harder than it has to be and, as a result, we are “scared to death of dying.”
According to this physician and researcher, a large majority of Americans die in hospitals or nursing homes, suffering from poorly controlled pain and other physical miseries, and often enduring their final days feeling embarrassed, humiliated, lonely, confused, and a burden to others. Prolonged serious and chronic illness, physical dependence, extreme frailty, and mental confusion are now common facts of late life. It is not easy to die well.
Byock reports that hospitals remain the site of more than 50 percent of deaths in most parts of the nation; nearly 40 percent of people who die in a hospital spend their last days in an intensive care unit, where they will likely be sedated or have their arms tied down so they will not pull out breathing tubes, intravenous lines, or catheters. While acknowledging that dying is hard, the author asks if it needs to be this hard.
Too many people suffer needlessly at the end of their lives, he says. Indeed, Byock says that the way many Americans die is a “national disgrace.”
My wife and I had dinner recently with good friends, a lively couple who are in their sixties. Toward the end of a delightful evening, I brought up the topic of how they were planning for the time in their lives when they became frail and ill from old age. Our friends plaintively responded, “It’s so depressing” and didn’t want to talk about it.
They’re right of course. The topic can be depressing. It’s natural to want to avoid serious conversations about the end of life. Who wants to think about annihilation, pain, loss of autonomy, despair, vulnerability, physical dependence, and the excessive cost? A dying person’s identity, relationships, work projects, aspirations, hopes, and plans are pretty much doomed.
But we must think about the end of our life, plan for it, and talk to loved ones about it, especially while we are physically healthy.
Byock suggests that fresh approaches to discussing death and the decisions associated with it actually create a way to honor and celebrate our dying loved ones, as well as ease their pain and suffering. Writes the good doctor, “We can provide excellent lifesaving treatments, while respecting people’s right to determine when enough is enough, always ensuring that their pain is treated expertly, that they and their families are treated tenderly.” The 1997 book by Mitch Albom, Tuesdays with Morrie, is worth reading on this point.
Offering the best care possible in this way also means offering practical help and emotional support to the loved ones of a dying person.
Byock notes that not only patients and potential patients (all of us) are reluctant and afraid to talk about dying. Doctors themselves have “an aversion to talking about dying and death.” They dread it. Medical schools could change that reluctance by giving medical students more training in palliative care. Doctors need to know if elderly patients want to die gently and how to give them that option.
The Dartmouth professor justifiably grouses, “Most medical schools do not require hospice or palliative care rotations, many do not even offer them as electives. Medical schools generally provide a lecture or two on pain management and discuss the ethics of end-of-life decisions and palliative and end-of-life topics within other courses. The total course content of these topics probably amounts to fifteen to twenty-five hours over the four years of medical school curriculum.”
Byock emphasizes that there is no universally right way for a person to die. What constitutes dying well for one person might be entirely wrong for another. The key question is: How do we make full use of lifesaving medical science and technology while ensuring that people are comfortable and allowed to die gently when their time comes?
The big question is when does one acknowledge the inevitability of death? At some point in the course of illness and decrepit old age, more treatment will not equal better care. When you are dying, do you want to be gently released in order to relieve your suffering? If so, how will you make sure that happens when the doctors treating you may have a different goal?