Mark Porter, The Bellingham Herald

Keith Robinson doesn't sugarcoat his cost to America's health care system.

The no-nonsense ex-Marine with chronic ailments, including diabetes and a congenital heart defect, remembers seeing a physician bill after his five-month stay at the University of Washington Medical Center four years ago.

The tab: $500,000 - and that didn't include the cost of his hospital stay. He's never seen the bill for room and board and shudders to think how much that cost his insurer, which ultimately reaches into John Q. Public's pocketbook through higher premiums.

Heart failure

Nearly five million Americans suffer from heart failure, a blanket term that means the heart isn't pumping as well as it should. An estimated 2,000 Whatcom County residents have heart failure. Usually, the heart has been weakened over time by an underlying problem, such as clogged arteries, high blood pressure, a defect in the heart walls or valves, or some other medical condition, according to American Heart Association. People with heart failure don't get enough oxygen, so they feel weak, fatigued or short of breath. More than 500,000 new cases are diagnosed each year in the United States, including children and young adults, but most commonly older people.

"People with chronic illnesses end up using more quantities of health care than other people," said Robinson, 54, a lifelong county resident. "And there's more than one person in the same fix I'm in."

Robinson is one of about 60 chronically ill county residents taking part in a community project aimed at helping people with heart failure and diabetes to improve their health, and ultimately save money for themselves and others. Pursuing Perfection, a $1.9 million grant from the Robert Wood Johnson Foundation, is an attempt to spread the gospel of patient-centered care with a three-pronged focus:

• Patients get to help make decisions about their own care.

• Coordinators help patients through the maze-like health-care system.

• Patients gain greater access to health information sharing through the Internet.

Robinson sees himself as a living example of the need for a new approach that could help him stay out of the hospital, lead a longer and healthier life, and avoid overtaxing the health-care system.

It's easy to second-guess the current system, but Robinson wonders if he could have avoided the five-month hospital stay if he had been a Pursuing Perfection patient back in 1999.

"If you ignore these chronically ill people, one day you have a hospital filled with chronically ill people who need help," he said. "If we follow those people more closely, maybe we can keep them from getting so sick."

History of ailments

Robinson was born with a heart defect that was discovered during an eighth-grade school physical. As a 12-year-old, doctors repaired his aorta, the artery that feeds blood from the heart to every part of the body except the lungs. His aorta should have been the size of a quarter, but was the size of the head of a safety pin, he said.

That didn't stop him from having a life. He wrestled for Bellingham High School, reaching the state tournament. He then spent four years in the U.S. Marine Corps, where doctors discovered a heart problem during an insurance physical, he said.

Diabetes

Seventeen million Americans - including an estimated 6,713 Whatcom County residents - have diabetes, a shortage of insulin that allows fats to increase in the blood, eventually damaging vital organs. Diabetes kills more than 200,000 Americans a year, and can cause heart disease, stroke, blindness, kidney failure, leg and foot amputations, pregnancy complications and death related to flu and pneumonia. The economic impact of diabetes totals nearly $100 billion a year, according the federal Centers for Disease Control and Prevention.

That led him to a cardiologist who decided he was just fine, and he went on to train on flight director radar for aircraft. But looking back, he said, he ignored subtle warning signs, such as shortness of breath.

He returned to the Bellingham area after the service and worked several jobs until he became sick in 1979. An infection from an abscessed tooth spread to his previously repaired aortic valve. The result: surgeons gave him an artificial valve.

"I felt pretty good for quite a few years," Robinson said.

But the area by the valve began leaking blood. He lost energy. Even mowing the lawn became a monumental task.

Robinson became sick again in January 1999, spending three days at St. Joseph Hospital, then off to the University of Washington Medical Center for five months, in part, waiting for a new heart.

Doctors then decided to replace the valve again, in May 1999, and later implanted a defibrillator to kick-start his heart if it beats irregularly.

A postal worker at the time, Robinson retired in June 2000 because of his chronic health condition, which is considered a disability. Along with his heart problems and adult-onset diabetes, he also suffers from restless leg syndrome, which causes an irresistible urge to move the legs. The urge worsens at night, causing sleeplessness. Robinson also suffers from sleep apnea, meaning he repeatedly stops breathing for short periods while asleep.

Getting help

Before becoming part of Pursuing Perfection, Robinson got help through Family Care Network, a group of family-care physicians. Family Care employee Nancy Stothart, who now works for St. Joseph, helped Robinson negotiate the tangled medical system, and continues to do so now with Pursuing Perfection.

Before, Robinson said nobody helped him keep track of his condition and symptoms - such as his blood-sugar level, weight gain and energy level - that might portend problems. Now, Stothart calls him every other week.

Just managing his 14 daily medications is a chore. Stothart helps him make sure than none of the medications conflict with another one or with new ones he might need.

"If I have concerns, I can just call her up; she can get the doctor's ear faster than I can," Robinson said. "She's pretty easy to work with, and she seems concerned."

Like many people battling chronic illness, Robinson gets help from family. In his case it's his wife, Debbie, whom he started going out with 1983 and married in 1990. She spent the entire time he was in Seattle at his bedside, reading and playing gin rummy to battle the boredom and uncertainty.

"We call her Nurse Debbie because she watched and learned everything," Robinson said.

Robinson still carries a special beeper so he can rush to Seattle if he is called for a heart transplant. He doesn't expect to be high on the list, because he's stable now.

That's fine with him. Modern medicine is the reason he's alive, with or without Pursuing Perfection. He works in his yard and around the house. He's refinishing antiques and cabinets.

"In five to 10 years I will need a transplant or another valve," he said. "But from how sick I was in '99, then 10 years down the road is quite a life extension."

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POWER TO THE PATIENT

(Photo not available at this time)

MAKING PROGRAM WORK: Nancy Stothart (left) and Connie Golas work for the Pursuing Perfection Project in Bellingham. MAME BURNS HERALD PHOTO

Local trial program gives sick people more responsibility for their treatment

Mark Porter, The Bellingham Herald

Ask any average Joe about a Whatcom County effort to make medical care more cost-effective and patient-centered. Odds are, he'll roll his eyes in disbelief.

Pursuing perfection?

The Pursuing Perfection project is funded by the Robert Wood Johnson Foundation, a philanthropy which works to improve health care. Whatcom County is one of seven areas across the nation that are giving the program a practical test. Health-care providers involved in the local trial are: Family Care Network, Sea Mar Community Health Center, North Cascade Cardiology, and St. Joseph Hospital with the Center for Senior Health, which is part of the hospital. Participating health-care payers are Group Health Cooperative and Regence Blue Shield. The $1.9 million local grant expires in March. Local advocates hope to continue with new grants.

After all, America is the land of disjointed health care - with government, doctors, insurance companies and hospitals all fighting for a share of the trillion-dollar health-care industry.

That longtime approach is exactly what the Whatcom Community Health Improvement Consortium is trying to change.

The community group was one of seven across the nation last year to receive part of a $20.9 million grant from Robert Wood Johnson Foundation and the Institute for Healthcare Improvement.

The program is called Pursuing Perfection: Raising the Bar for Health Care Performance.

The idea is simple to understand but tough to carry out: Reduce the need for expensive hospital visits by helping people do more to manage their own health care.

The result, organizers hope, is a more-efficient and less-expensive approach to health care that will spread throughout the medical world.

"Whatcom County is the focus of the nation," said Nancy Stothart, a registered nurse and clinical care coordinator for the local Pursuing Perfection project. "How can we transform health care within a community, and not just an organization?" A Rand Corp. study published Thursday highlights the lack of coordination in the health care system. According to the study in the New England Journal of Medicine, doctors fail to take nearly half of the recommended steps for treating such common illnesses as diabetes and high blood pressure. Further, patients in the study did not receive a third of the standard medicines for heart disease or half of the recommended care for diabetes.

Patient's diary

Patient's diary The Pursuing Perfection effort includes a high-tech and low-tech version of a "shared-care plan" available on paper and the Internet. It's a booklet that chronically ill patients can share with their doctors. The booklet includes a personal profile, goals, and a list of caregivers, allergies, medications and diagnoses. The goal is to have information on hand so there's no confusion about the patient's condition and medications.

"Health care now is very disjointed," said Marc Pierson, a St. Joseph Hospital vice president and a leader of the Pursuing Perfection project in Whatcom County.

"Without question, the model of an integrated plan ... is a model that makes sense," he said. "The question is, 'Can we get it to work?'"

Giving guidance

Leaders at Robert Wood Johnson Foundation, a health-care philanthropy in Princeton, N.J., want to see statistically provable improvement in patients' access to care, patients' self-management and satisfaction, and a decrease in medical errors. Such measurable improvements could have a huge effect if applied nationwide.

Caring for chronically ill people consumes up 70 percent of the nation's health-care dollars.

Fifteen million of the 77 million baby boomers are expected to develop congestive heart failure in the coming years, and diabetes cases in the United States doubled from six million to 12 million over the past 20 years.

In 2000, St. Joseph Hospital had almost 700 admissions related to diabetes and almost 900 related to congestive heart failure.

To bring those numbers down, Stothart and Connie Golas are coordinating the care of about 60 chronically ill county residents participating in the Pursuing Perfection project. They're using computers, the Internet and the plain old telephone to track the residents' health and guide them through the medical maze of doctors, hospitals and insurers.

"The person who is managing chronic illness is the person with chronic illness," Stothart said. "We've expected them to do it without support or self-management."Before Pursuing Perfection, there was no standard way to get information to and from such patients. With the project, patients are at the center of the equation, and they like it.

"They don't feel like they are going to the principal's office," Pierson said. "They feel like they are partners."

Golas said she and Stothart are supposed to be interim helpers. The Pursuing Perfection model calls for training workers in medical offices to become more aware of the needs of chronically ill patients.

"We don't want to displace the cardiologists or primary-care doctors, but to help the person self-manage," Stothart said. "I do a fair amount of checking in on the phone, more frequently with heart failure, just doing some monitoring.

"I can't think of anyone who hasn't said, 'My life has been better since this started,'" she said. "Sometimes I can tell, just by phone and how they are talking, how they are doing. We are having relationships with people."

The fact that Stothart and Golas operate independently of insurance companies and health-care providers is a plus, Pierson said, because they can follow the patient even if he or she changes insurers.

Calculating benefits

Preliminary results from the project are encouraging, said Mary Minniti, a St. Joseph employee and program manager of the project.

Diabetes patients in the program have shown marked improvement in their blood-sugar control, she said. While many haven't reached their long-term targets of near-normal levels, they are moving closer to a target that some had thought was out of reach, she said.

In an inefficient care system, patients must repeat medical stories and medical information, then wait for helpful treatment or information, she said. That can eat up work time for patients and their employers, she said.

To get a handle on the benefit of Pursuing Perfection, the local consortium asked experts to figure the cost and the savings from a proactive approach to caring for diabetes and heart failure patients.

Their conclusion: It would cost $9.8 million to run a local Pursuing Perfection program for the next five years, but would save an estimated $26 million in worker disability expenses.

Even with such savings, there still must be insurance reforms if Pursuing Perfection is to succeed, said Mark Donaldson, Group Health Cooperative administrator and a member of the local project's leadership board.

There aren't any natural rewards for changes in the current payment system, he said. For example: It's known that group visits and e-mail exchanges help patients, but insurers and the government don't currently cover those, he said.

"What is attractive to Group Health about this is we aren't talking about a vertical (company) integration," he said. "We are getting separate business entities trying to get together to benefit the entire community."

Doctors say that if Pursuing Perfection works, they will have more time to spend with people who need traditional office visits, and people won't have to wait as long for appointments.

The foundation grant runs out in November, but groups in the consortium are committed to funding the effort until spring, and hope more grants follow, Pierson said.

The automobile industry improved after learning from Toyota's teamwork and flexible approach to manufacturing, said Andrea Kabcenell, deputy director of the Pursuing Perfection program for the Institute for Healthcare Improvement, in Boston. While health care is not a pure product line, "we can learn from those industries," she said.

"The average Joe should care because Pursuing Perfection is an attempt to know what one hand is doing with the other," she said. "That doesn't happen very often in care in the U.S.

"If it doesn't work," she said, "health care is in a lot more trouble than we thought."Reach Mark Porter at mark.porter@bellinghamherald.com or call 715-2263.

Reach Mark Porter at mark.porter@ bellingham herald.com or call 715-2263.