Patients Who Make Themselves Sick

By Mary Jo Layton

Staff Writer

The cardiac patient checked himself out of The Valley Hospital a day after his heart attack, outraged that he was forbidden to smoke.

The diabetic treated at St. Joseph's Hospital and Medical Center refused to monitor her dangerously high blood-sugar level.

Shocked? How about the Englewood patient who hijacked his IV line and sneaked a smoke outside. The man, under treatment for breathing difficulties and chronic lung disease, was caught by his doctor.

"He filed a complaint against me, saying I violated his rights," said Dr. Robert Malovany, the patient's physician. "Is that too much?"

Many physicians and researchers say patients routinely fail to follow doctors' orders. They don't take medication -- even lifesaving drugs such as antiviral therapies used to treat HIV infection. They refuse to lose weight or quit smoking, even after repeated health scares.

Dr. Cary Hirsch, a cardiologist at The Valley Hospital in Ridgewood acknowledges that many patients reach critical condition before they clean up their lifestyles. Some never reform.

"It can get very frustrating," he said. "I've had patients in their 40s with two bypass surgeries. When I see them in follow-up visits, I can smell smoke on them."

Malovany, chief of pulmonary medicine at Englewood Hospital and Medical Center, has waged the same battles with patients -- and has had to urge some of those who wouldn't listen to find another doctor.

"The patient-doctor relationship is a two-way street," Malovany said. "Just as a patient can go to any doctor, we are not obligated to take all comers. I've told people that cigarette smoking is the direct cause of your disease. If you continue to smoke, we're not going to get anywhere."

A growing body of research documents this nagging health threat. One study found that up to 50 percent of patients fail to take the medications their doctors prescribe. Another found that almost half of all patients stopped taking their cholesterol-lowering drugs, even though they have been shown to cut death rates from heart disease by a third.

The problem is so rampant that an estimated $37 billion spent on hospitalizations could be avoided if people followed doctors' orders, according to research released in November, 2000 by the American Heart Association.

"It's a real problem," said Dr. Ira S. Ockene, a national expert on compliance.

"Taking medications properly is extremely important," said Ockene, a Massachusetts professor and cardiologist who works with the American Heart Association. "Yet study after study indicates this is not happening. If you have a heart attack and quit smoking, the difference is enormous. If you take cholesterol-lowering drugs, you lower the death rate."

A study published in 1998 by researchers at Harvard Medical School found that only 52 percent of patients taking cholesterol-lowering medication were still filling their prescriptions five years after the study began.

Even when the consequences can be profound, patients don't always follow orders. Researchers in Philadelphia found that only 35 percent of the 549 pregnant women in their study infected with HIV took the required medications that could help prevent them from passing the virus on to their fetuses and newborns. Mothers also put themselves at risk of developing life-threatening infections.

Experts say the reasons people don't follow doctors' orders are varied. Some are in denial about their illness. Others stop taking medications because they feel better, as is often the case with antibiotics. Some patients, especially organ-transplant recipients, skip vital medication because of side effects that can make them nauseous.

"I don't think patients want to accept the fact that they have a disease," said Dr. Adam S. Kelman, an endocrinologist at St. Joseph's Hospital and Medical Center in Paterson.

"Compliance is a big part of the problem with diabetes," he said. Avoiding obesity, exercising regularly, and monitoring blood sugar are the responsibility of the patient. Failure to comply can be disastrous.

Many diabetics become rebellious in their teen years and fail to follow doctors' orders. Kelman has had patients lose their sight, a kidney, or a foot as early as age 20. "That's the power of their refusal to comply," he said.

Another impediment to successful treatment: the cost of prescriptions. One-third of the 39 million Medicare beneficiaries have no insurance to pay for drugs their doctors prescribe.

Dr. William Lee, chief of cardiology at The Valley Hospital, has confronted patients about not taking medications when he saw their condition worsen unexpectedly, and he has discovered that some are embarrassed to admit they cannot afford the drugs he prescribes. The medications -- a blood thinner, beta blocker, cholesterol-lowering medication -- can cost up to $200 a month, he said.

"We have excellent medications, but they don't work if people won't take them," Lee said. "We try to help people find a generic or offer samples whenever possible," he said.

Patients, however, aren't always to blame when treatment fails. Many Americans don't follow directions because they do not understand them, the American Medical Association concluded in its "health literacy" campaign.

Among the AMA's findings: 42 percent of patients did not understand instructions to take medication on an empty stomach, and 40 percent of Americans with chronic illnesses are functionally illiterate. Sixty percent could not understand a standard consent form.

"We never knew that so many people have had this much difficulty," said said Dr. Joanne Schwartzberg, an AMA official. "We've planned this whole healthcare system that is difficult to understand. Then we say you're non-compliant. That has to change."

In addition to medication, most chronic diseases require lifestyle changes, particularly diet and exercise. Doctors know that launching a fitness program can intimidate patients. Trading in cheeseburgers for a veggie burger is an act of sacrifice beyond most mortals. Cardiologists can sympathize with patients suffering from powerful nicotine addictions. To a point.

Arthur Schepps underwent four angioplasties, a triple bypass in 1996, and surgery to implant a pacemaker. Still, he could not stop smoking two packs of cigarettes daily.

"You never think you're going to end up dead from this," said Schepps, a Rockland County retiree. "It will always be the next guy. Ten weeks after the bypass, I felt good enough again to smoke.

"Finally, Dr. Hirsch told me he's not going to keep trying to save my life and have me kill myself with the cigarettes," he said. Hypnosis helped him quit this year.

At St. Barnabas Hospital in Livingston, staff frustrated by patients who continue to smoke have a new weapon. The hospital's tobacco treatment program, the first of its kind in New Jersey, was launched in March with a grant from the state's share of the national tobacco settlement.

Roland Romano, a respiratory therapist, counseled 27 patients in March and April. When patients are admitted, Romano seeks out those who use tobacco. He offers counseling, videos, and information. He talks with the patient's physician about prescribing nicotine replacement devices or medications commonly used to ease withdrawal symptoms if someone expresses interest in quitting.

"Nurses are extremely overworked. Doctors are very busy. This is where our program comes in," he said.

His job is a challenge. He sees cardiac or cancer patients smoking outside the hospital in designated areas. People tell him they quit smoking, unaware that Romano has already spotted the cigarettes in their pocket.

Some, like Ida Williams, quit only to start again. Romano had counseled the 83-year-old cardiac patient when she was admitted in April. The East Orange woman stopped smoking. However, she was readmitted late last month after suffering a heart attack. She told Romano she would try again to stop smoking.

"That's what we're up against," Romano said.

The success stories, though, motivate him. There's the lung cancer patient who quit after decades of smoking. There was the woman who opened her purse and pulled out the nicotine replacement device she had carried around for a year.

"She said, 'I'm ready. You're like my guardian angel, Roland.'"

Copyright © 2001 North Jersey Media Group Inc.

This article posted September 20, 2001.