More ill people choosing care that comforts, doesn't cure
By Josephine Marcotty
Minneapolis Star Tribune
Tucson, Arizona | Published: 03.23.2008
MINNEAPOLIS — As she does all day, every day, Amber lies on her mattress in front of the television watching "Sesame Street."
Once in a while, the voices distract the 11-year-old girl from her beloved Elmo. She rolls her eyes to look at the ring of faces above.
Two nurses, a social worker and a doctor have come to visit.
Amber's parents, Tom and Lisa Kimlinger of Fridley, a Minneapolis suburb, are among the fortunate few parents of very sick children who have been getting expert help in navigating the labyrinth of medical care available to their daughter.
They've learned, often the hard way, that less can be better.
So the days of constant visits to doctors in hospitals for ever-more-complex medical procedures are over, said Lisa Kimlinger, 46. "It's not worth the quality of life. I want her to be happy in the days she has left."
Amber was born with an exceptionally rare genetic bone disease. She is 30 inches long and has never walked. Now, as she labors to breathe on the floor at their feet, they don't talk about what will help her live longer. They talk only about the kind of medicine that, like Elmo, will make her feel better today.
This is the emerging specialty of palliative care, which is revolutionizing how chronically ill patients are treated, and focusing scrutiny on whether doctors and hospitals should be paid differently.
American health care has been driven by a culture of "more is better." More tests. More treatments. More technology.
This has created a medical system that succeeds brilliantly at paying doctors and hospitals to do myriad procedures to cure illness and prolong life at any cost.
But it often fails to improve the quality of life and ease pain for the sickest and most expensive patients of all.
America is now facing a health care tsunami of its own creation: an aging population that will die very slowly from astronomically expensive chronic illnesses.
The prospect of that financial disaster coincides with a growing realization that doing more is not always in the patient's best interest. Sometimes the way to improve care and reduce often futile medical treatments is to educate patients and their families about their choices and let them choose. Often they choose less.
Experts estimate if that kind of patient-driven medicine were practiced across the spectrum, it could reduce the nation's $2 trillion health care bill by about a third.
Those specialists from Children's Hospital and Clinics of Minnesota arrayed around Amber recently in her home are harbingers of a cultural shift under way in medicine.
They have helped the Kimlingers walk through crucial decisions usually made by doctors. They do it by posing hard questions that the legions of doctors who have cared for Amber rarely asked:
How do you want her to live? How do you want her to die?
American health care has become an arena of specialists using a sophisticated arsenal of medical technology to battle diseases. Cardiologists for heart disease. Nephrologists for kidneys. Oncologists for cancer.
"It has substantially improved our ability to prolong life in the context of what used to be fatal illnesses," said Dr. Diane Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine in New York. "We've turned them into chronic diseases."
The medical culture is driven by a typically American faith that with enough technology and research, any problem can be solved. "There is this childlike belief that death itself can be defeated," Meier said. Now-adays, "we can prolong the dying process for a very long time. And we do that."
The health-care payment system has evolved in lock step. Health plans pay doctors piecemeal rates to do procedures and conduct tests. Hospitals are paid to do surgeries, and to provide beds and life support for critically ill patients.
But general practitioners, geriatricians and psychiatrists — doctors most likely to talk to patients and manage their care — are paid the least of all.
Meier said that her employer receives about $90 when she spends an hour and a half guiding an emotionally fraught family through the options for a loved one in intensive care.
In the same time period, her husband, a cardiologist, could earn $4,000 by putting in heart stents to open clogged arteries.
Not surprisingly, say researchers at Dartmouth Medical School in New Hampshire, this has fostered an over-supply of specialists and hospitals. As a result, a third of all Medicare money is spent on people with chronic illnesses in the last two years of their lives.
Somewhere along the line, "we lost the human side of medicine with our searches for cures," said Dr. Sandy Gordon-Kolb, a palliative-care physician.
Palliative care emerged in the mid-1990s as a way to bring that back. The growth has been explosive. Last year, the American Medical Association declared it a specialty. It is now offered by about 70 percent of large hospitals.
Though often confused with end-of-life or hospice care, in which all curative treatment is withdrawn, palliative care is more about how to live with chronic disease.
The focus is on the patient and the family — and their life goals. "We design medical care around those goals," said Dr. Eric Anderson, medical director of the palliative-care program for Allina Hospitals & Clinics in Minneapolis. "Patients and families love it."
Amber was born with Lenz-Majewski hyperostosis syndrome, a genetic disorder causing abnormal bone growth, dwarfism and other severe medical problems.
"The doctor told us she would be a vegetable. She would never recognize us as parents. There is no hope for her. She needs to be in an institution," said Lisa Kimlinger.
That turned out to be wrong. With her mother caring for her, Amber has lived at home and does know her family. But her medical issues are immense.
"We've had to make a lot of decisions," said her father, Tom Kimlinger, 47.
Most recently, it was whether to surgically reduce her tongue, which her growing jawbones were forcing into her airway.
"Her doctor kept saying, 'As a doctor, I'm supposed to fix this and make her better,' " Lisa Kimlinger said. "But every time we try to fix something, it makes it worse." They knew the odds were high that after a terrifying surgery, Amber could die on a ventilator in the hospital.
With a palliative-care team, they decided on hospice care and backing away from medical interventions to extend Amber's life. She gets help breathing from medication and oxygen through a tube that lies on her pillow. They know that when she dies, she will be peaceful, at home with her family — and Elmo.
But Children's Hospital and Clinics of Minnesota, one of the few pediatric hospitals to offer palliative care, loses money twice on such patients as Amber. It lost out because her parents decided not to do the surgery, which would have brought in revenue between $6,000 and $10,000. It also loses about $750,000 a year providing palliative care because health plans do not fully reimburse for it.
A palliative-care nurse costs the hospital about $150 per hour; health plans pay only between $65 and $140 per visit.
They don't pay anything for the time of social workers or chaplains, said Dr. Phil Kibort, vice president of medical affairs.
That is starting to change. Medicare and most Minnesota health plans are paying more palliative-care benefits.
HealthPartners started in January and in the first year expects to save between $200,000 and $700,000 from $2 billion in medical expenditures, said George Isham, chief medical officer.
Meier looks forward to the day patient-driven care is seamless, not an add-on for the sickest patients.
It will evolve faster, she said, if patients and their families ask for it and if the federal government and health plans see the wisdom in changing the health-care payment system — before the baby-boom tsunami hits.
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