Helping Sonoma County's chronically ill stay at home until the end
Published: Saturday, August 3, 2013 at 11:00 p.m.
Last Modified: Saturday, August 3, 2013 at 3:18 p.m.
John Haller, 91, yearns to resume the chores around his longtime Santa Rosa home: cutting grass, tidying the yard and tending his tomato plants.
“I have a better appetite and I sleep better” when working around the house, said Haller, a thin man who wears glasses and a hearing aid.
A sign by the front door of his single-story home for half a century says “Isten hozta,” or “welcome” in Haller's native Hungarian tongue.
A massive oak towers over the house on a little-traveled road across the grassy plain that affords wide-open rural views southwest of the city.
Haller, a retired builder who was diagnosed with bone marrow cancer early last year and hurt his back in a fall in June, is fortunate to be at home, with a nurse, physical therapist and social worker bringing care to his doorstep.
He's one of 200 patients enrolled in Sutter Health's Advanced Illness Management program, called AIM, established locally in 2012 to keep chronically ill patients out of hospitals and rein in runaway costs that threaten to cripple Medicare, the nation's health care system for 49.4 million elderly and disabled Americans.
“It's breaking the bank,” said Dr. Brad Stuart, chief medical officer of Sutter Care at Home, which includes AIM.
Medicare spends about $77.5 billion on chronically ill people in their last two years of life, with more than half of it ($40.3 billion) in the last six months, when the cost of hospital care skyrockets.
In Sonoma County, Medicare payments for a chronically ill patient in the last two years of life averaged $72,407 in 2010, including $37,575, or 52 percent, in the last six months, according to the Dartmouth Atlas Project, which tracks Medicare's end-of-life spending.
Overall, Medicare payments to people in the last year of their lives accounted for one-fourth of the program's expenditures for the elderly, a rate that changed little between 1978 and 2006, according to a report in 2010.
That report by the journal Health Services Research noted that the “existing patterns of care do not meet the needs and preferences of terminally ill patients.”
Experts say there is a profound disconnect between how the health care system works and concern over its costs.
Modern medicine, at least in the public's perception, offers the prospect of working miracles through pharmaceuticals and high-tech interventions to prolong life.
And in a culture that generally fears death and avoids talking frankly about it, many people — and their physicians — opt for aggressive, high-cost treatment until the end.
Suggestions of rationing or curtailing care in the world's richest nation can prompt talk of “death panels” sentencing elderly loved ones to an early demise.
But there's a problem, said Stuart, who has worked in private practice, hospitals, emergency rooms and hospice, with pouring billions of dollars into treating seriously ill patients who have a prognosis of a year or less.
“It doesn't keep people alive,” he said.
Nor is death in a sterile, impersonal hospital intensive care unit, connected to life-support devices, what many people want.
Two-thirds of Californians said they preferred a “natural death” should they become seriously ill, and only 7 percent said they would like “all possible care to prolong life,” according to a survey reported last year by the California Healthcare Foundation.
But 29 percent of seriously ill Californians died in a hospital in 2010, with 22 percent spending time under intensive care, according to the Dartmouth project.
Sutter's AIM program is part of a nascent national movement to allow people to die under circumstances of their own choice, most likely at home with family, an approach that evidence shows saves money, as well.
Sutter Health of Northern California secured a $13 million Medicare grant and earmarked $21.6 million of its own money to implement AIM throughout its network of 24 hospitals and 5,000 affiliated physicians.
Mike Purvis, chief administrative officer at Sutter Medical Center in Santa Rosa, said the $34.6 million investment is part of a “major strategic shift” toward an integrated system that recognizes home and hospice care as viable alternatives to hospital care.
When the shift is complete, he said, hospitals will be “another piece in the continuum” and no longer the “primary economic engine that drives” health care.
For a patient with serious chronic irreversible conditions to die in a hospital “is really a system breakdown,” Purvis said.
Recalling his mother's death last year at her Washington home, Purvis said, “It's unimaginable to me that she would have died in a hospital rather than at home with family.”
Stuart contends that aggressive and expensive treatment of chronic disease, considered standard care by many physicians, can amount to “cruel and unusual punishment.” It is also the “default setting” for most physicians who are trained to use every curative tool at their disposal.
Sutter Medical Center, which participated in a precursor to AIM in 1999, is a state and national leader in metrics that measure the revolution in end-of-life care.
The AIM team includes six nurses and two social workers who make home visits, and an additional nurse making telephone calls to patients, whose average age is 75.
Sutter Medical Center reduced the number of days seriously ill patients spent in the hospital in their last six months of life from 10.4 days in 2007 to 6.4 days in 2010, according to the Dartmouth Atlas. That 38.3 percent decline was the largest among 197 California hospitals and four times better than the national decline of 9.5 percent.
In the same period, Sutter reduced the percentage of deaths in the hospital from 32.7 percent to 17.3 percent — a 47.2 percent drop — and cut days in intensive care in the last six months of life from 2.0 to 1.1, a decline of 44.3 percent. Both reduction rates were the second-highest in California.
Nationwide, deaths in hospitals dropped 11 percent and intensive-care days increased by 0.2 percent.
“We move the focus of care out of the hospital and into people's homes and the community,” Stuart said. Patients “get what they want,” he said, and Sutter has documented monthly savings of more than $2,000 per patient.
Dr. Andrew Wagner, co-director of Santa Rosa Memorial Hospital's palliative care program, said the key is simply asking people — before they are critically ill — what level of care they want.
“If we don't ask people what they want, we tend to do too much,” he said. “That's our reflex position in western medicine as it is practiced today.”
As a result, hospital intensive-care units typically include people receiving care “they may or may not be benefiting from,” Wagner said.
Some are caught in a “revolving door” of repeated trips from a nursing home to the emergency room and back, each time more debilitated than before, he said.
Palliative care offers an opportunity to engage patients and families in a conversation about goals of care, with an option to choose a treatment plan that focuses on comfort and symptom management instead of temporary curative care.
“We allow them to leave this world on a comfort care treatment plan that often includes simple measures like morphine and oxygen,” Wagner said.
When a loved one is dying, he said, the question is “how do I want that to unfold: in an intensive-care unit with life support that is failing or in a quiet and sacred environment with family at the bedside?”
Memorial reduced its percentage of deaths in the hospital by 11.8 percent from 2007 to 2010, a bit better than the national average.
Hospital days per patient in the last six months of life dropped 7.9 percent at Memorial, while intensive-care days increased 5.9 percent.
“Misalignment between patient preferences and actual treatment can have serious consequences for patients' quality of life,” said a California Healthcare Foundation report titled “End-of-Life Care in California: You Don't Always Get What You Want.”
Hospital patients are “at risk for infection, pain and time away from loved ones in their final weeks and days,” it said.
The trend toward more natural end-of-life experiences is slow, “kind of like an iceberg breaking up,” said Kate O'Malley, a registered nurse with the healthcare foundation.
A New England Journal of Medicine study published in 2010 found that patients newly diagnosed with lung cancer had a “better quality of life” with early palliative care than compared with standard care.
Fewer patients in the palliative care group received aggressive end-of-life care, but they typically survived 2.7 months longer than those with standard care for lung cancer, the leading cause of cancer death worldwide, the study said.
AIM's approach, which includes palliative care and coordinates with hospice, is the “opposite of death panels,” Stuart said. AIM does not advise anyone to stop treatment, nor does it ration care.
The program was designed to overcome the limitations of Medicare-reimbursed hospice, which requires critically ill patients to declare themselves “terminal,” meaning they have six months or less to live, and to give up curative treatment, such as chemotherapy, in most cases.
With just the first wave of 78 million baby boomers reaching Medicare age, the cost of continuing to treat late-stage chronic disease the conventional way threatens to explode, experts say.
But there's also hope, the two local physicians and Purvis said, that health care-savvy boomers, aided by social media, will mount a grass-roots demand for death on the terms they favor.
“We have to engage in an honest conversation about how we're going to wisely use our dollars,” Wagner said.
John Haller, the nonagenarian, and his wife, Christine, are getting meals delivered by the Ceres Project, a Sebastopol nonprofit that serves cancer patients, and John Haller said last week that an in-home massage made his ailing back feel a lot better.
If he continues to improve, Haller said he would resume going go up the ladder he left leaning against their house.
“I'd rather he didn't,” his wife said.
You can reach Staff Writer Guy Kovner at 521-5457 or email@example.com.
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