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Treating an Illness is One Thing What About a Patient with Many?
By Siri Carpenter, The New York Times
March 30, 2009
Mazie Piccolo has so many health problems it’s hard to keep track. Congestive heart failure makes her short of breath and causes her legs to swell. An abnormal heart rhythm raises her risk for stroke. Arthritis in her knees makes it hard for her to get around, and she can no longer drive.
Mrs. Piccolo, 84, of Rosedale, Md., also has osteoporosis, and she has fallen several times in the past few years, once breaking her pelvis. On top of all these medical ailments and others — high cholesterol, high blood pressure, gastric reflux — she has a history of depression, and it is sometimes hard for her to care for her husband, who is even frailer than she is.
Strictly by the book, Mrs. Piccolo should be taking 13 different medications — an expensive, confusing cocktail that has proved too much for her to manage. Other medications that might be advisable cause intolerable side effects, and the more drugs she takes, the greater the risk of dangerous drug interactions.
What is striking about her predicament is not how rare it is, but how common. Two-thirds of people over age 65, and almost three-quarters of people over 80, have multiple chronic health conditions, and 68 percent of Medicare spending goes to people who have five or more chronic diseases.
As a group, patients like Mrs. Piccolo fare poorly by any measure. They linger in hospitals longer, experience more serious preventable health complications and die younger than patients with less complex medical profiles.
Yet people with multiple health problems — a condition known as multimorbidity — are largely overlooked both in medical research and in the nation’s clinics and hospitals. The default position is to treat complicated patients as collections of malfunctioning body parts rather than as whole human beings.
“Very often, there is nobody looking at the big picture or recognizing that what is best for the disease may not be best for the patient,” said Dr. Mary E. Tinetti, a geriatrician at the Yale School of Medicine.
And treating one disease in isolation, she added, can make another disease worse. In controlling diabetes, for example, doctors often seek to reduce levels of a blood-sugar marker called hemoglobin A1C. “But we know that for some people with complicated diseases, that’s not always the best move,” Dr. Tinetti said.
Mrs. Piccolo is being treated by Dr. Cynthia M. Boyd, a Johns Hopkins University geriatrician whose research focuses on patients with multiple chronic conditions.
“Doing right by patients like this is tremendously challenging,” Dr. Boyd said. “Would she get the most benefit from lowering her blood pressure or cholesterol level, or from being treated for her osteoporosis, or from taking warfarin for stroke prevention? Or is it more important to treat her depression so she can manage her overall health better, or to try to improve her ability to physically get around?”
The medical file for Fred Powledge, 74, is four inches thick, with more than a dozen current diagnoses, including diabetes, gout, chronic obstructive pulmonary disease, compressed vertebrae, three replacement joints, two replacement eye lenses and arthritis.
Mr. Powledge, a Maryland writer, takes almost a dozen pills a day, as ordered by six physicians.
“Good luck and a lot of sleuthing on my part have given me doctors whom I trust and who are mostly aware of interactions among the drugs they prescribe,” he said in an e-mail message. “But what’s missing is someone who can look at the big picture and see my health as a whole.
“That falls to me alone, with the help of my very wise wife and frequent visits to reliable Web sites,” he continued. “As our population ages, we need some kind of overseer to juggle all the diagnoses and prescriptions and look for conflicts and duplications. This would also help to counteract the notion in many people’s minds that the doctor knows best — because often the doctor doesn’t.”
In a medical system geared toward individual organs and diseases, there is no champion for patients with multiple illnesses — no National Institute on Multimorbidity, no charity Race for the Multimorbidity Cure, no celebrity pressuring Capitol Hill for more research.
And because studies involving uncomplicated populations are cheapest and easiest to interpret, patients with multiple diseases are routinely shut out of drug trials. A 2007 study found that 81 percent of the randomized trials published in the most prestigious medical journals excluded patients because of coexisting medical problems.
“We often don’t know what the real safety or efficacy is for patients with multiple illnesses,” said Dr. W. Douglas Weaver, president of the American College of Cardiology.
Pharmaceutical companies are required to study how well particular drugs and medical devices work in the real world, after they’ve gotten government approval. In theory, such post-marketing studies should shed light on how best to treat patients who have complex medical problems. But the studies tend to include only a small fraction of patients receiving treatment, Dr. Weaver said.
Comprehensive data registries that track all patients at a given hospital or clinic are more promising, he said. But he added that unless the federal government stepped in to support such registries and pay doctors for participating, they might not be sustainable.
Because so little research includes complicated patients, physicians have little scientific evidence on which to base their care. In a 2005 study, Dr. Boyd and colleagues analyzed influential, evidence-based clinical practice guidelines used to treat nine of the most common chronic diseases, among them osteoporosis, arthritis, Type 2 diabetes and high cholesterol.
Fewer than half the guidelines specifically addressed patients with multiple illnesses, and most were limited to patients with only one coexisting disease or a small number of closely related diseases. “We’re so far away from having perfect evidence about how to help patients with complex health problems,” Dr. Boyd said.
Lacking solid guidance, doctors make their best guesses about whether a particular guideline is applicable to the patient, said Gerard F. Anderson, a professor of health policy and management at the Bloomberg School of Public Health at Johns Hopkins. And “their best guesses,” he went on, “vary all over the map.”
Time pressures intensify the doctors’ predicament. A typical 15-minute appointment leaves too little time to weigh the risks and benefits of a complex treatment plan, much less to fully consider the patient’s preferences and priorities.
“We don’t actually know how to weigh evidence across diseases,” said Dr. Boyd, of Johns Hopkins, “and we also don’t know the best ways of communicating to patients what we do and don’t know.”
Quality-improvement measures, which tie doctors’ compensation to how closely they follow evidence-based practice guidelines, further complicate matters, and some worry that they provide a financial incentive for physicians to sacrifice individualized decision-making.
“Doctors know that it’s not right for someone to be on 15, 18, 20 medications,” said Dr. Tinetti, the Yale geriatrician. “But they’re being told that that’s what’s necessary in order to treat each of the diseases that the patients in front of them have.”
Changing that will require a major investment in research, guidelines and quality measures that include the kinds of complicated cases doctors see every day.
“I think everyone realizes that we need to figure out how to integrate care for our elderly patients with multiple chronic conditions,” said Dr. Ardis D. Hoven, an internist in Lexington, Ky., who is a trustee of the American Medical Association. “But we’ve got a long way to go. We’re just now beginning to verbalize this.”
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