September 19, 2002
Toward a more peaceful death
By GINNY MERRIAM of the Missoulian
Americans aren't passing on where they'd like, study shows
Most Americans - 70 percent - say they want to die at home, surrounded by family and friends and free of pain.
But most Americans - more than 75 percent - die in a medical setting, hooked to machines, isolated and in pain, according to the first comprehensive, state-by-state look at how we die, released Monday.
"Only 24.9 percent of people do die at home," Judith Perez of the Last Acts coalition said from Washington, D.C., in a Monday morning national teleconference for the press. "That tells us people are not getting the care they want."
The study should generate momentum for change, said Perez, who is deputy director of Last Acts and who led the team that wrote "Means to a Better End: A Report on Dying in America Today."
"This report is groundbreaking in terms of a wake-up call that end-of-life care is not what it should be," she said.
"Americans have at best only a fair chance of finding good care at the end of life. People are dying in pain and in ways against their wishes."
The report gives each state a report card in eight areas that can measure the quality of death and of care at the end of life, using existing data from years from 1997 through 2001:
- Do state policies support good advance care planning?
- What proportion of the state's deaths occur at home?
- Is hospice care widely used in the state?
- Do hospitals in the state offer pain and palliative care services?
- How many elderly people spend a week of more in intensive care units during the last six months of life, meaning that they may have received overaggressive care?
- How well do the state's nursing homes manage their residents' pain?
- Do state policies encourage good pain control?
- Does the state have enough physicians and nurses who are trained and certified in palliative care?
No state earned an outstanding report card.
"Even the best of states are in the middle to low C's in their report cards," said Ira Byock, a Missoula physician who is co-founder and principal investigator of Life's End Institute: Missoula Demonstration Project and director of Promoting Excellence in End-of-Life Care, a national grant and technical assistance program of the Robert Wood Johnson Foundation. "As a society and, frankly, as a generation, we're just beginning to engage this issue."
Among the areas that states fare poorly is the use of hospice. Hospice care was introduced in the United States in 1975, but such care is coming too late and too little, the report says. Specialists agree that hospice care should be provided for at least 60 days to give the patient full benefit, but the average length of stay has dropped over the years from 70 days in 1983 to 25.3 days in this study. In 1998, 28 percent of hospice patients were enrolled for one week or less before dying.
No state received an A in this area.
"What that really tells us is that people are not benefiting from hospice services," said Perez. "These short, heroic, brinksmanship stays are not going to give benefit."
Montana did well in its percentage of people over 65 who spent a week or more in intensive care units during the last six months of life, receiving a grade of B for a 6.7 percent.
Montana's A grades were in the percentage of nurses and physicians who are trained and certified in palliative care, which treats the whole patient at the end of life. A total of 0.97 percent of doctors and 0.89 percent of nurses meet that definition The mean percentage nationally is 0.33 percent.
"This is obviously an area for growth," Perez said.
Montana fared the worst in its percentage of residents who died at home, 27.7 percent, which earned a grade of D; its use of hospice and length of hospice stays; its percentage of hospitals with pain management and hospice programs and its percentage of nursing home patients in persistent pain, 48.4 percent by a 1999 measure.
Jim Towey, the Bush administration's director of the White House Office of Faith-Based and Community Initiatives who was for 12 years legal counsel to Mother Theresa, said the nation needs to ask, "Does dying in America have to be this miserable?"
"It takes a lot of courage to come out with a report like this," he said during the national press conference. "It's a report that's documenting a lot of failure."
"Taken as a whole, this paints a pretty bleak picture," he said. "If my kids came home with a report card like this, they'd be grounded."
In a national survey accompanying the report, Americans, too, were critical of end-of-life care. Fifty-nine percent gave our current system a rating of only fair or lower, while one-quarter rated it poor.
Missoula is a bit ahead in its programs, said Lilly Tuholske, acting director of Life's End Institute: Missoula Demonstration Project, partly because the project has brought end-of-life issues to the forefront since its founding in 1996. Both Missoula hospitals have pain management programs, and one has begun a palliative care program. About one-quarter of Missoula adults have signed an advance directive for health care, and Missoula has an electronic depository for the directives so that health care professionals can access the patients' wishes in emergencies.
The report is actually cause for optimism, said Byock, who talked by cell phone from the Phoenix airport after the press conference. The report clearly defines "domains of quality" that Americans can use evaluating health care and in expressing their wishes. It's the first time that has been done, he said.
"It signifies a new era in which we have tools on which, as consumers, we can base our actions and our choices," he said. "I think this report represents a new era."
Americans avoid talking about death, he said, and that trait has not served us well.
"Frankly, it gets down to our deeply rooted aversion to talking about or accepting the fact that we're all going to get frail and die," he said. "We even isolate those who remind us of frailty and dying. We pay those who work in nursing homes an astonishingly low wage. All of that is our desire to not think about this issue. In my thinking, it's time to grow the rest of the way up."
Last Acts is made up of more than 1,000 organizations, including the American Medical Association and the American Hospital Association. It is funded by the Robert Wood Johnson Foundation. Former first lady Rosalynn Carter is its honorary chairwoman.
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