Moving beyond 'more is better'

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 her 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.

Her parents, Tom and Lisa Kimlinger of Fridley, are among the fortunate few parents of very sick children who have been getting expert help 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, 11, 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.

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 underway 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:

That can-do culture

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. Today, "we can prolong the dying process for a very long time. And we do that."

Doctors are trained to treat. They are trained to believe that death is the enemy, said Dr. Penny Wheeler, chief clinical officer for Allina Hospitals & Clinics. Years ago as a medical resident, she had to advocate chemotherapy for patients clearly at the end of their lives. "It was a horrible thing to do," she said. "I would be pushing chemo realizing that no one had talked to them about when to say when."

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 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.

Even those who know better can find it hard to break free from that medical culture.

In late December, Ann Rushfeldt's 82-year-old mother, a diabetic who had a previous bout with breast cancer, went to the doctor with leg pain. By the end of the day, she had been diagnosed with cancer in multiple sites and was in the hospital for brain surgery.

But her parents, who were not at an Allina hospital, were not offered those choices. Doctors told them that with aggressive treatment "people can live a long time," she said. Her mother had surgery, cardiac intensive care, a gastric tube, CT scans, MRIs and rehabilitation. For weeks her father took her mother out in the bitter cold for daily radiation treatments. Finally, at Rushfeldt's urging, the oncologist told her mother that all that aggressive treatment was not going to cure her.

"After he left, she said, 'Do you think I'm going to die?' I said, 'Mother, God is in charge. But it doesn't sound like they can cure you.'"

Her mother died on Feb. 20. Rushfeldt said her mother had not had a single good day after she entered the hospital.

Putting on the brakes

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 at Fairview Health Services.

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 the patient and the family, and their life goals. "We design medical care around those goals," said Dr. Eric Anderson, medical director of Allina's palliative care program. "Patients and families love it."

Dorothy Derr, 66, buried her husband late last year, then came to Columbia Heights for Christmas with her son's family. She had been fighting what two Oklahoma doctors told her was a urinary tract infection. Her daughter-in-law took her to the Fairview clinic in Columbia Heights, where pancreatic cancer was diagnosed.

"You don't recover from that," Derr said. But with a lot of chemotherapy and other medical care she could live for quite a while. "And I haven't decided yet whether I'm giving up," she said.

Fairview now sends a palliative care nurse to visit Derr in her son's home once a week and she has been "a good shoulder to cry on," Derr said. "You can't do that to your family."

More important, a social worker helped Derr think through ramifications of treatment. "The goal is to buy me time to get my estate settled," she said. "Then we will decide whether to buy time for time's sake, or whether to enjoy the time I have left."

Giving patients the power to make those decisions on average reduces hospital costs by $300 and $500 per day per patient, said Lyn Ceronsky, director of Fairview's palliative care program. But those choices can also reduce revenue.

Amber Kimlinger's story is a case in point.

She 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.

"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 she could die on a ventilator in the hospital.

With a palliative care team from Children's, they decided on hospice care and backing away from medical interventions to extend her 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, one of the few pediatric hospitals to offer palliative care, loses money twice on patients such 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 only pay 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.