As noted in earlier posts here and here — as well as in connection with the final years of Dr. Michael DeBakey — one of the thorniest issues facing reformers of the U.S. health care and health care finance systems is the extraordinary allocation of health care resources to end-of-life care.
This recent Marilynn Marchione/AP article frames the issues well:
Americans increasingly are treated to death, spending more time in hospitals in their final days, trying last-ditch treatments that often buy only weeks of time, and racking up bills that have made medical care a leading cause of bankruptcies.
More than 80 percent of people who die in the United States have a long, progressive illness such as cancer, heart failure or Alzheimer’s disease.
More than 80 percent of such patients say they want to avoid hospitalization and intensive care when they are dying, according to the Dartmouth Atlas Project, which tracks health care trends.
Yet the numbers show that’s not what is happening:
— The average time spent in hospice and palliative care, which stresses comfort and quality of life once an illness is incurable, is falling because people are starting it too late. In 2008, one-third of people who received hospice care had it for a week or less, says the National Hospice and Palliative Care Organization.
— Hospitalizations during the last six months of life are rising: from 1,302 per 1,000 Medicare recipients in 1996 to 1,441 in 2005, Dartmouth reports. Treating chronic illness in the last two years of life gobbles up nearly one-third of all Medicare dollars.
–People are actually now sicker as they die, and some find that treatments become a greater burden than the illness was, said Dr. Ira Byock, director of palliative care at Dartmouth-Hitchcock Medical Center. “Families may push for treatment, but there are worse things than having someone you love die,” he said.
But if your family is facing the prospect of caring for elderly parents in their waning years, don’t miss this extraordinary Katy Butler/NY Times Magazine article on the negative impact that an effective pacemaker had on the quality of her father’s life in the final years of his life:
Until 2001, my two brothers and I — all living in California — assumed that our parents would enjoy long, robust old ages capped by some brief, undefined final illness. Thanks to their own healthful habits and a panoply of medical advances — vaccines, antibiotics, airport defibrillators, 911 networks and the like — they weren’t likely to die prematurely of the pneumonias, influenzas and heart attacks that decimated previous generations. They walked every day. My mother practiced yoga. My father was writing a history of his birthplace, a small South African town.
In short, they were seemingly among the lucky ones for whom the American medical system, despite its fragmentation, inequity and waste, works quite well. Medicare and supplemental insurance paid for their specialists and their trusted Middletown internist, the lean, bespectacled Robert Fales, who, like them, was skeptical of medical overdoing. “I bonded with your parents, and you don’t bond with everybody,” he once told me. “It’s easier to understand someone if they just tell it like it is from their heart and their soul.”
They were also stoics and religious agnostics. They signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.
My family and I have experienced both a sudden death of a still-vibrant parent and a slow one under the painful grip of dementia. There is no question that my mother, a former nurse, did not want to die in the manner that she did. But she did not have that choice.
And that lack of choice is at the root of this vexing problem facing us all.
i have done this every day for the last 30 years and have no incentive to keep folks alive when they do not want it. this IS a problem and is accurately articulated in your postings–i call it the problem of the “frail elderly”.
in the 1980’s, our problems, as a society, were the inability to say, “do not resuscitate” and inability to “pull the plug” in hopeless situations.
over time, we have grappled with THAT, matured, and “solved” the problem.
the frail elderly problem is more costly, more complex and may take longer to “solve”. the CHIEF barrier is patients and families are not effective in articulating a willingness to “go” with a minimum of fuss nor are they “willing” to spring for the time, effort, energy and emotion needed to provide the “benign neglect” needed for months or even years.
hospice or palliative care at taxpayer expense helps but doesn’t cover the hard work and expense of daily care and it is patients and their families that do not step up and pay the piper. instead, they languish along, best they can, often figuring it should be someone else who will help–no one does so, when finally sick enough, it falls to hospitals and doctors.
though some perverse incentives ARE in place, families and patients, more often, EXPECT the surgeries, devices etc–is it guilt?–it was guilt in the 1980’s that kept patients hopelessly on ventilators.
this will be a long time in solving.
One of the reasons I so strongly oppose Obamacare is that I don’t want my personal choices concerning my end of life care to be overridden by bureaucratic morons whose interests are not the same as mine. In the past five years both my grandmother and stepmother died of long term progressive illnesses. Both died in hospices and both died with dignity. It is way my family deals with such realities. Thankfully, we did not need to consult with any government decision maker to allow us to fulfill the wishes of our loved ones.