Personal Health : Helping to Relieve the Stiffness of Arthritic Medical Care
Henry Cruz went from dancing nearly every night to being unable to straighten one of his legs at all.
The Riverside resident was referred to a specialist, run through a battery of tests showing he had rheumatoid arthritis, given drugs and sent to physical therapy to enable him to walk with a crutch. By his own account, he got the best medical care around.
What he didn’t get, though, was much help in figuring how to live day to day with a disease that will cause him pain, and, possibly, disability for the rest of his life. The former auto body repairman had to find that out for himself.
“What happens is they don’t spend enough time with you. You get processed through a mill,” said Cruz, 65, his voice more philosophical than bitter. “All doctors are that way--they only give you so much time and that’s it. If they can’t cure it with a prescription, then that’s the end of that.”
Yet Cruz has an incurable disease, one that health care experts see as offering a prototype for how the U.S. medical system must change in the next two decades as 77 million baby boomers acquire the chronic illnesses of middle and old age.
Medicine must shift from an emphasis on hospitalization and high-tech diagnostics to services that keep the chronically ill at home and functioning as close to normally as possible, they say.
“Chronic illness is going to be much more dominant in the future precisely because people are being kept alive longer,” said Daniel Callahan, director of the Hastings Center, a New York think tank on medical issues. “The key to dealing with chronic illness is learning to provide care, comfort and adequate social services, not high-technology medicine--but our system is geared toward high-tech medicine.”
Of the 37 million people with arthritis in the United States, nearly 25 million have the three types that increase with aging:
* Osteoarthritis, cartilage degeneration at joints that causes bones to rub together painfully, afflicts 16 million people.
* Rheumatoid arthritis, an immune system disorder that inflames joints all over the body, afflicts 7 million people.
* Gout, a painful accumulation of uric acid crystals in joints, afflicts 1.8 million people.
Next year, when the leading edge of the baby boom generation turns 45--the age when these arthritic conditions become more likely--the incidence of the crippling condition is expected to increase, said Sue Manfred, vice president for public education of Arthritis Foundation. No one has projected how much, she said.
How would a health care system ready for that increase respond? In addition to needed tests and drugs, it would take an active role in providing patients with support services and education that look more social than medical in nature.
A team consisting of physician, physical therapists, occupational therapists and perhaps a psychologist or social worker would instead evaluate a patient’s daily life skills, prescribe home exercises and monitor his progress:
Can he walk to the bus stop? How hard is it for him to get dressed every morning? Can he do the activities that made his life before arthritis a full one--like square dancing, clogging and waltzing? What physical barriers in his home need to be altered? How much does he know about managing his condition?
Unless such questions are dealt with, a patient in pain and with limited movement is considered more likely to enter a downward spiral of inactivity, less joint flexibility, weakened muscles and worse health overall.
Health professionals recognize this in Los Angeles and around the country, but the health care system isn’t responding very well, experts say. This is because health insurance and its reimbursement philosophy were developed under an acute care model of health care, said Dr. Paul R. Torrens, professor of health services administration in the UCLA School of Public Health.
Classic Illness of ‘20s
“Our health care system was really designed in the period from 1900 to 1950, to deal with the health problems that existed at that time,” Torrens said. “The classic illness of the 1920s and 1930s was acute pneumonia. It had a clear-cut beginning, a middle and an end. And so the system that developed in those times was developed around that model of illness.”
Although antibiotics and other developments have lessened the importance of such acute diseases, the old health care system based on them lives on.
Consequently, an insurer or Medicare favors expensive “cures” for arthritis like total joint replacement operations, Torrens said.
“A person can go into the hospital and have it done, and that will be paid for,” he said. “But if you’re just mildly arthritic and need support services, or you need medication, then insurance doesn’t pay for that very well.”
Callahan agreed: “Much of the role of the doctor (in chronic disease) may simply be talking, and providing psychological counseling and minor medication--but doctors are reimbursed very poorly for that. We have to turn the priority system upside down, and that’s very hard to do because we have such a recent heavy commitment to curative medicine, and that’s where the big money is.”
Occupational Therapy
Medicare, for instance, will give unlimited occupational therapy to teach patients how to live better at home only if the patient has needed intermittent skilled nursing care and is completely homebound. Outpatient occupational therapy is limited to $500 a year unless it is provided at a hospital.
Yet--whether the problem is arthritis or heart disease or stroke--a rehabilitative approach to chronic illness saves money in the long run as well as making patients’ lives better, many believe.
The reason? A patient who is kept more active is a person whom doctors, hospitals and nursing homes won’t see as often, saving money for a burdened health care system, studies indicate.
For instance, a Stanford University study of patients in an arthritis self-management course taught there found that people who had been through the course had fewer doctor visits, amounting to a savings of $120 to $343 over four years, said Kate Lorig, a senior research associate at Stanford Medical Center.
Speaking at a U.S. Centers for Disease Control conference on chronic diseases held in San Diego last month, Lorig said that if a similar decrease could be accomplished among only 1% of the nation’s arthritics, the savings would amount to $17 million.
Decreasing the Pain
From the patients’ point of view, the course had the advantage of decreasing their pain as much as drugs did, by 19%, Lorig noted. The effect seemed to come chiefly from the fact that the courses gave people a greater sense of control over their condition, she said.
Dr. Halstead R. Holman, director of the Arthritis Center at Stanford Medical Center, said even more money would be saved in treating chronic diseases if both doctors and patients changed their approach to treating arthritis.
* Physicians need to stop trying to resolve the basic uncertainty of an incurable disease such as arthritis by using expensive test after test on patients, he said.
* Doctors must recognize that the patient’s own perceptions are the best gauge of how the disease is progressing, and must learn to rely on them.
* Patients need to educate themselves and adopt self-care regimens--such as are taught in Lorig’s course and others sponsored by the Arthritis Foundation--so they know how to alleviate symptoms through adjusting medication, exercise and adaptive devices.
But for now, an arthritic looking for that kind of knowledge or for help with learning how to do day-to-day living tasks cannot count on the conventional medical care system to provide it, experts agree.
Self-Help Classes
Like Cruz, they often must learn about the disease and their role in making it better from books and through seeking out self-help classes. (A patient without the supportive family and iron will that Cruz credits for his own recovery would be likely to give up, Cruz says.)
Or, like the people UC San Diego occupational therapist Kathy Miyoshi sometimes sees, their hands might become needlessly gnarled because they never received an evaluation for preventive nighttime splints.
At UCLA Medical Center, neurologist Dr. Bruce Dobkin is setting up a new rehabilitation program that he hopes will provide a national model of a way to avoid such problems through a comprehensive approach to treating chronic diseases.
Teams in several different rehabilitation specialties, including neurology, geriatrics and arthritis, will involve everyone from basic research scientists to clinical physicians to psychiatrists and psychologists, he said.
The teams not only will use emerging research results to guide treatment but also will be looking for data on the approach’s medical and economic effectiveness, so public policies on reimbursement can be changed, Dobkin said.
“If it turns out that it doesn’t make any difference, then it shouldn’t be done,” Dobkin said. “But just in our first view with our neuro-rehab services, it’s pretty clear that you can help a lot of people in small ways that may not show up in saving resources and keeping people healthier, but the people are happier. And then there’s another group in which clearly you are helping them stay functional so that they don’t end up in nursing homes.”
OSTEOARTHRITIS
In osteoarthritis, the type of arthritis most associated with aging, the cartilage cushion at the ends of adjoining bones begins breaking down. As the cartilage frays, bits of it can float around in the lubricating sinovial fluid and cause pain. In extreme cases, the cartilage is completely worn away, leaving a painful bone-on-bone joint. An estimated 16 million people in the United States have osteoarthritis.
