Ozier Muhammad/The New York TimesReynaldo Rodriguez of the Care Coordination program counseled a patient with H.I.V. on how to adhere to a drug regimen.
Doctors are very good at telling us what to do — but we are very poor at doing it. In fact, the health problems of millions of Americans are directly related to our failure to follow doctors’ orders.
Doctors tell us to take our pills, exercise, go get that C.T. scan, stop smoking, change our diets, cut out salt, quit drinking, monitor our blood sugar. We know we should do it, but we very often don’t. About three-quarters of patients do not keep appointments for follow-up care. In one study of diabetes patients, only 7 percent were compliant enough with their treatment plans to control the disease. Even people at grave and immediate risk do not always take their medicines: a quarter of kidney transplant patients in one study did not take their medicines correctly, putting them at risk for organ rejection. Among elderly patients with congestive heart failure, 15 percent of repeat hospitalizations were linked to failure to take prescribed medicines. And compliance with exercise and diet programs is even worse. Poor compliance is a major reason that sick people don’t get better, and that our health care costs are so high.
It is a reason that often gets ignored. Many doctors are uncomfortable wrestling with adherence. They may even believe that it is not their problem, that their job is done when they write the prescription or hand the patient a diet plan. But even concerned doctors would find themselves helpless in a 10-minute office visit. They are too removed from their patients, too much the authority figure to really get to the bottom of why a patient isn’t doing what he is supposed to.
Bad adherence doesn’t discriminate by social class. Tens of millions of Americans struggle with high cholesterol and blood pressure and yet can’t manage to stick to an exercise program. Far fewer — but far sicker and more expensive to the health care system — are the handful of emergency room frequent flyers: people with multiple serious conditions such as AIDS, diabetes, hypertension, depression, mental illness, social isolation, substance abuse or domestic violence. Such people have extraordinary problems sticking to their plans to get better, and need extraordinary help.
Joe McManus is a 56-year-old former heroin and crack addict who lives in a single-resident-occupancy apartment in Manhattan. He spent 15 years as an addict, about 10 of them homeless. In some ways, he’s far from the typical homeless person. He used to work on Wall Street and still retains some of his Wall Street friends. In 2005, one of those friends took him to the Super Bowl.
In other ways, he is absolutely typical of drug users who have hit bottom. McManus has AIDS, Hepatitis C and liver problems. “My doctors went three or four years with me not showing up,” he said in a recent interview in his apartment. “I had no relationship with her — except for her to put me in the hospital because I didn’t listen to what she had to say. I was still not addressing the fact that I was H.I.V.-positive. I was not taking my medicine and only going to the hospital when I had to be put in the hospital. I was still messing around with drugs.” McManus was hospitalized four times in the year before November, 2009. Then he got a visit from Reynaldo Rodriguez.
When Rodriguez first visited McManus, he had already quit drugs, on his own. But he was still living as if he were homeless. His apartment was covered with soot and grime, the bed had cigarette burns and the refrigerator held moldy food. McManus was treating his apartment like it was the street. “How the hell are you living like this?” Rodriguez blurted out.
It made a difference. McManus started taking his medicines. The medicines brought down his viral load — he was getting better, and that motivated him to take care of himself. McManus is thin and twitchy, but when I saw him was dressed in jeans and a nice zippered sweater, and the apartment was in reasonable condition. McManus is now 100 percent adherent to his medicines, and his hospital stays amounted to only a single night in the last 16 months. He said that part of it was a spiritual awakening, but it was clear that Rodriguez played a huge role. McManus now goes to all his doctor’s appointments on his own.
But that doesn’t mean he follows all of his doctor’s advice. He’s no longer doing crack, but he’s still drinking — several nights a week he goes to hang out in a friend’s bar. He loves the bar — it’s his entire social network.
But his Hepatitis C makes this dangerous behavior, and his doctor was stern: “You can not ever have a drink again. Not even on your birthday,” she told him. “I never have to tell you if I ever have one,” McManus thought to himself.
Rodriguez and McManus worked out a compromise: he could keep going to the bar, but he had to tell his friends about his health problems so they would put the brakes on. He had to try to drink less, and keep doing tests that monitored his liver.
“He’s been very honest with me,” Rodriguez said. Why more than with your doctor? I asked McManus.
“She’s a doctor,” he said.
The Care Coordination program, a city-wide initiative now in 28 sites in different hospitals around New York, was inspired and trained by a Boston-based program called PACT, for Prevention, Access to Care and Treatment. PACT is part of Partners in Health — a nongovernmental group famous for its work in Haiti, Rwanda and elsewhere. Part of Partners’ strategy is to use people from the community who are paid a stipend to visit patients, watch them take their pills and support them. Since 1995, PACT has been using these ideas in tough neighborhoods of Boston, first with H.I.V. patients and now with people with chronic diseases such as diabetes. The PACT project trains people from the community, some of whom have the same diseases and similar problems as their patients, to be community health workers.
The new health reform law encourages pilot programs to try different forms of medical homes, and the better care and cost savings that come from improving adherence with peers or lay people like Rodriguez are attractive. The New Yorker magazine writer Atul Gawande recently profiled two clinics that use this model, in Atlantic City and Camden, N.J.
There are successful programs that use nurses for outreach. The Nurse-Family Partnership sends nurses to visit low-income first-time mothers, beginning in pregnancy and continuing until the child is two. The program now operates in 32 states and has proven to greatly improve the life of both child and mother. The Camden program that Gawande wrote about also uses nurses and nurse practitioners to make home visits.
But nurses are expensive home visitors, and they may not even be the best people for the job. “Given the rising cost of health care, we have found having peer-based health promoters providing care management is an equally effective way to provide high-quality care at a low cost,” said Ayesha Cammaerts, the director of operations at PACT. “Especially with patients who suffer from substance abuse and mental health issues, they need someone they feel comfortable letting into their environment. Sometimes patients don’t feel they can connect to clinicians from outside their community,” she said.
PACT’s methods work. A study of AIDS patients found that the patients’ use of appropriate medicines rose — they were becoming adherent. At the same time, spending on hospitalization dropped by nearly two-thirds. Overall, patient costs dropped by 36 percent. Even taking into account the $6,000-per-patient cost of PACT, patient costs dropped 16 percent. And in a group of people who would likely have died if they had not been in the program, 70 showed clinical improvement.
The PACT method is likely to be an important part of the future of American medicine. Many of the deficiencies of American health care require not more technology, but the human touch. It’s certainly true for high-risk, high-cost patients, but it can help nearly everyone get better health for less money. In Saturday’s column, I’ll write about how.