Editor’s note: This commentary is by Joe Sherman, who writes columns for COVE, the Community of Vermont Elders, about Medicare fraud and about aging well. This commentary is taken from a column. His books include “Fast Lane on a Dirt Road: A Contemporary History of Vermont” and “In the Rings of Saturn,” which was nominated for a Pulitzer Prize in nonfiction.
I am guilty. I do not have an advance directive. In a snap of the fingers, I could have an aneurism, a stroke. Leave my family and loved ones with no instructions, no legal muscle, as I’m intubated (a tube is inserted in a body passage) and rushed to a hospital where machines keep me alive. There’s a feeding tube, a respirator, a heart monitor. Beside the bed is my wife. Across from her is a physician.
“Does he have an advance directive?” he asks.
My wife shakes her head no. “We didn’t expect something like this so soon.”
A smile flickers on the doctor’s face as he checks my chart. “He’s 103.”
Okay, a bad joke to open a serious topic. But not far from the truth about how the average Vermonter faces old age. Talking about death with a sexagenarian physician at Dartmouth Medical Center, a man I have known since before he went to medical school, he said, “Many people aren’t prepared because they can’t accept aging. Some doctors sugarcoat the situation.” The doctor recalled a patient “dying to be gone. But he got resuscitated. Again. Without a directive it‘s easy to make bad decisions. End of life care demands proactive decisiveness.” He paused. “Quality of life can get terrible otherwise.”
Last November I attended a Veterans Administration workshop on planning an advance directive. It was led by Yale Cohn who has an advanced degree in social work and gerontology. Yale handed out sample forms to eight of us. The forms included the Vermont Advance Directive for Health Care, the VA Advanced Directive, Durable Power of Attorney for Health Care and Living Will, and a sobering fact sheet entitled Information for Patients: Common Life-Sustaining Treatments. The sobering facts described four life-sustaining treatments for the heart, lungs, kidneys and nutrition that one might encounter in the hospital. Cohn asked if any of us had personal experience with an advance directive.
Franklin Sibley, a vet, 70, raised his hand. Sibley described having been a proxy for his mother who initiated an AD at the age of 85. “It was my first proxy,” he told me later. “She and her doctor made it very doable. My mother had non-tremor Parkinson’s.” As for understanding exactly how an AD worked, he said, “I was new at it. In the vertical portion of the learning curve.” She died seven years later in a nursing home. “God’s Waiting Room,” Sibley called it. Subsequently, he became the proxy for his brother, moving him from a hospital to a nursing home after a case of skin cancer metastasized. A third AD involved Sibley’s girlfriend. Taken down by ovarian cancer, she relied on palliative care, then shifted to hospice care.
Describing each situation — mother, brother, and girlfriend — Sibley displayed what most of us would desire in like circumstances, controlled concern, affection, a personal link to and understanding of the patient. He came on board when minds were sound, helped with the legal documentation for each person’s AD, stayed the course.
Pleased to have a person in the workshop with experience, Cohn told us that the basic goal of an AD was “to appoint someone to speak for you, establishing authority for action.” Do it early, while lucid and thoughtful, she advised. Involve family members, your doctor, possibly an attorney, in the discussions. “Age is not a good criteria for triggering an advance directive.”
An AD can be accompanied by a living will for the disbursement of personal property, Cohn said. Without a legally-binding document, in Vermont, if you die intestate, the state will distribute your assets to your heirs as per Vermont statute. Once in the hospital, Cohn warned, if life-saving protocols have been initiated, “it is hard to stop the process. Make certain your AD is brought to the caregivers attention from the get go.” At home put it on the refrigerator. At the hospital, a proxy should insure that your caretakers, from emergency room personnel to nurses to doctors, whose medical and ethical duty is to keep you alive, are made aware of the patient’s wishes. Family and the hospital staff may suddenly be burdened with life-and-death decisions if there is no plan or simply because the AD has been misplaced or never registered.
My takeaway from the workshop was clear: I had no life team for a good death. An incapacitating emergency would reveal my irresponsibility and put my wife and daughter in a panic. Still, reviewing the AD forms, I felt the same old, immature repulsion of death. How un-American it seemed to die. Yet friends, associates, neighbors of mine were dying quite regularly. Fill out the AD, get it done, I told myself. Involve your wife and primary care physician. Procrastinating, I called Franklin Sibley and asked if he had an AD.
“No,” he said, surprisingly. “Now one is in process. The workshop motivated me.”
I repeated something Cohn had told us: Two-thirds of Americans do not have ADs. “Why do so many of us drag our feet about this?”
“People are scared,” Sibley said. “They don’t understand the directive process. The thought of life ending feels like an overwhelming tsunami.” Speaking from his experience and its deep truths, he added, “People need the directive concept broken down into bite-size bits.”
Bits we can swallow, without gagging, I thought, making a resolution for the New Year of 2020: you will complete your AD. In a nation of eternal adolescents everybody still dies. Everybody needs a life team. A team of more than one.
