Living longer often makes dying more difficult.
Jessie Eaton had a slow death. There was a heart attack in 1985. A stroke three years later left her homebound with blurry vision. She moved into a nursing home in 1993. Finally, on Oct. 5, 1997, more than a decade after her health began spiraling downward and long after her skin had started decaying from bedsores, this 93-year-old woman whose weight had dwindled to less than 100 pounds died in her sleep.
Like Eaton, more Americans are living into their 90s or even past 100. Those extra years are full of life for many. But there is mounting evidence that suggests these gains, achieved through advances in science and medicine, have a dark side. The end is harder and longer for many.
Living longer has radically changed how Americans die, experts say. The infectious diseases that ravaged this country 75 years ago no longer take so many of us quickly. Instead, degenerative diseases that stalk the old–like cancer, stroke and heart disease–sap our energy and spirit for a decade or more before the end arrives.
“Fifty years ago people didn’t die this way,” said Joann Lynn, co-founder of Americans for Better Care of the Dying, a national activist group. “A major triumph of this age is that we grow to live old, but that means we will probably die of a degenerative disease.”
The World Health Organization is warning that this increase in degenerative diseases will result in “a huge increase in human suffering and disability.” In the U.S. about 27 percent of people have a heart attack during their lifetime, 32 percent have cancer and more than 20 percent suffer from a stroke.
Managing the frequently grim consequences of this change is a challenge for growing numbers of older Americans, for their families and for a medical system well equipped to fight disease but ill-prepared to manage death.
The costs of our struggle with death almost leap off the pages of a comprehensive national study on the circumstances of death, produced recently by the National Center for Health Statistics.
About half of those who died had a functional limitation during the last year of life — ranging from 59 percent who reported they couldn’t walk a quarter of a mile, to 24 percent who couldn’t use the telephone, the 1993 survey shows.
Christine Cassel, head of the Department of Geriatrics and Adult Development at Mt. Sinai Medical Center in New York, said giving up control over everyday routines of life, such as eating, which 34 percent couldn’t do by themselves, and bathing, which eluded 52 percent, can be devastating to patients and their families.
“It’s a real blow to the sense of self-respect and ego for many people to say, `I can’t go to the bathroom by myself,’ ” Cassel said. The mortality study found that 43.5 percent couldn’t use the toilet alone sometime during the last year of their life.
Often times, depression and loneliness set in soon after the physical disabilities, as it did with Eaton.
This formerly bubbly woman became a sort of recluse in the last few years of her life, convinced that someone was always out to get her. In fact, Sid Eaton said his mother insisted on leaving her first nursing home, considered to be one of the finest in the Portland, Ore., area, because she felt the nurses were trying to poison her.
Where we die also has changed. More than three-fourths of all deaths occur in some type of medical institution–56 percent in a hospital or clinic and 19 percent in a nursing home, the mortality survey found. In 1937, only 37 percent of people died in a medical institution.
Money, or the lack of it, also is an issue for the dying. Of the more than 2.2 million people who died in 1993, 63,000 couldn’t afford the health care they needed.
Nearly half the families said Medicare covered most medical expenses, but 10 percent of those who died used their own money or their family’s to pay for care.
No one asked Justin Dart Jr. what was important to him. His doctors just assumed he would stay in the hospital after his fight with massive congestive heart failure in December. This strong-minded 67-year-old told them what he thought anyway.
After it became clear that his heart would never beat a normal rhythm again, he checked himself out of the hospital– against doctor’s orders.
“In the hospital, I felt like a laboratory rat in a cage,” said Dart, who is considered to be the architect of the Americans With Disabilities Act. “I just felt that I was considered to be a bunch of numbers–the blood pressure, the pulse. I wasn’t really treated as a human being that had a perception of quality of life.”
Whenever his last breath comes, Dart won’t be taking it as Eaton did. He’ll be doing it at home.
