Have you ever asked a friend or anyone in your family how they want to die? Have you thought about your own death and how you would prefer it happen? Few people want to talk about their own death or that of a loved one, but having such a conversation can help avoid a stressful situation when the time comes. Most of us would probably like to die at home peacefully in our own bed surrounded by loved ones. This rarely happens anymore. People at the end of life are usually in a hospital, often attached to a variety of machines to help sustain life and eliminate as much pain as possible. A family member may want to keep you alive--that is keep your heart beating and your lungs breathing--as long as possible but this may not be the ideal way to go. I would rather be alert and able to communicate with my family, even if it meant dying sooner.
There is also a good deal of misconception and failed communication about end-of-life care, which is politically controversial because it is so expensive. Nearly 30 percent of all Medicare spending occurs during the last six months of a patient’s life. At a time when our health care system is in flux, it is especially important to think about and plan how we want to die. The medical community has something called an Advance Directive, a legalese sounding term for a document that you sign to let your family and physicians now that at the end of your life you don’t want to be kept alive indefinitely if there is no treatment that actually can cure your disease. The directives vary according to state, but generally gives the terminally ill patient the power to decide about the end of life.
In our avoidance of talking about death, many people may not have heard the term. However, there is one town in Wisconsin, where 96 percent of residents—compared to only 30 percent nationwide--have signed an advance directive and indeed, it is often a topic of conversation in the community. “Have you done yours yet?” This phenomenon occurred in the 1990s when Bud Hammes, a medical ethicist at the local hospital called Gundersen Health System, was often called to the bedside of patients who were in a coma, or were terminally ill. When Hammes sat down with the family to help them figure out what to do next, the discussions were excruciating for the suffering families. He began training nurses to ask patients ahead of time if they would you like to fill out an advance directive. “If you reach a point where treatments will extend your life by a few months with serious side effects, would you want doctors to stop or continue life support. Stopping won out.”
There is also something called The Conversation Project, which offers starter kits in several languages to help people start talking about end of life and chose health care proxies. Talking about death may be gaining some new respect with so called Death Cafes popping up around the world. These are informal gatherings of people of all ages, who talk about how they would like to die while socializing over coffee and cake. The talk may range from philosophical to practical. The concept began in Britain at the beginning of this century and there are now more than 4,000 Death Cafes in 42 countries of the world. Most recently, I learned of one at Green-Wood Cemetery in Brooklyn, a national historic landmark, which, through a dynamic educational program, often presents programs about their “residents,” many of whom are world famous. Death Café meets monthly in the modern crematory chapel. These groups are not led by professionals, and are not meant to provide any kind of therapy. Participants respect each other’s confidentiality and there is no purpose of leading people to any conclusion. It just presents an opportunity to talk about something most of us have avoided.
And while I have mentioned before the importance of all members of the health care team being involved in providing spiritual comfort, this is not universal yet. Trained health care chaplains are often the ones in hospitals who approach the subject. Sean Jeung, a chaplain in Colorado, has been a hospice chaplain for seven years and initiates conversations with the dying as well as those left behind. “It’s okay to talk about this. I’m all about opening the door,” said Jeung, who also gives public talks on this subject. She believes we need to do more in this country about death with dignity.