Medical training prepares us to react to acute illness. We learn to use technology to do something, expecting to cure, snatch people from the jaws of death, and restore their health. This has made many people think we’re superheroes. Sometimes we find ourselves buying into that adulation, then we wait for the next acute episode, poised to use more technology, but most of us are at a loss when our capes become tangled in the cycle of chronic conditions. Today, the challenge of American health care is chronic illness, for which there is no known cure. The goal of chronic disease management is to keep people as independent and as comfortable as possible. We strive to avoid acute flares, and the hospitalizations that often follow, because technology isn’t the always the answer. When chronic illness takes its inevitable path to the end of life, the goal is a comfortable, dignified
Life can be seen as a series of contrasts. Everywhere, the rhythms of the natural world are evident, from our breaths (in-out), to our heartbeats, to the waves of the ocean. The light, and dark, the changing seasons, joys and sorrows – it seems we come to know each experience most intensely by also knowing its opposite. Could one even exist without the other? Would light have any meaning with no darkness? It’s ridiculous to think of breathing in, forever, never letting a breath back out again. But somehow, that’s often our mindset when it comes to life and death. We are enjoying the in-breath of life so much, we forget that the out-breath of death is required to make the experience complete. We forget that our lives have a start and an end point. Life seems to stretch out, on and on, and touch infinity – doesn’t it? We
Some say the best way to avoid a difficult conversation (like end-of-life care planning) is to ignore it until it goes away (my mother was brilliant at this strategy). My personal experience has taught me that if we ignore the end-of-life conversation long enough, it will indeed go away, and with little help from us. After a lifetime of observation, I feel fairly confident in saying that many of us expend a great deal of energy trying to avoid the topic of death, and the preparation required for the final act of our lives. It’s not an easy conversation for most of us to have, not even for those of us who work, study and write about it. We occupy our minds with everything but that which needs to come to us more naturally, more easily. We push hard conversations and challenging thoughts to the remotest corners of our minds,
Every family has at least one poet. My great-grandmother, Inez Lea Hannah, was our family’s poet. Between the ages of 12 and 13, she began writing poetry focused on the rural landscapes of the Ozarks. By the time she was eighteen, her poems were being picked up by the local papers. Unfortunately, very few of her writings remain. Mostly stuffed into drawers, old shoeboxes and now fragile books through the years, I still managed to slowly piece together a small collection of her work. This is the part of her legacy I know she would want our family to enjoy, and enjoy I do. My great-grandmother was great admirer of Robert Frost, and I often imagine her as a young girl longing to write in his rural, New England voice, though her tradition was distinctly rural, Midwestern. A book of Frost’s poetry sat next to her Bible on the old
What we don’t learn at home about the logistics and benefits of self-empowerment through end-of-life care planning, we are even less likely to learn at school, in the workplace or in our house of worship. When it comes to writing the final script of our lives, clearly one of our most important, we are more often than not simply left to our own solitary devices. But how can this be when we are learning how to write almost every other kind of script, for every other stage in our lives? How does this make sense? Why does one of the most important narratives of our mortal lives receive such neglect by our society? I think we can all agree that our fierce stubbornness to avoid the end-of-life conversation at all costs is not that unusual, but it is certainly not a very helpful strategy for a successful plan of action.
One of my most vivid memories of early childhood is that of my ancient great-grandfather. For months on end the wraith-like minister would sit in the same upholstered chair holding onto a battered cane while staring off into a space in the house as empty as my pockets. Great-grandfather finally decided to finish dying when I was almost five years old, but not before he announced to all within earshot that no one can truly know what awaits us beyond our mortal lives. This is where my grandmother (his daughter) stepped in to assure everyone that he was no longer lucid. The mystery of his parting words will forever remain locked away from those of us who were left behind. It snowed the day of the funeral, the only beautiful thing to happen that day that I can recall. Much to my chagrin, I was left at home with a