A doctor I knew -- call him Futerman -- had to be hospitalized. As the days went by, he found himself getting more and more irritated, so he picked up the phone in his room and rang the nurse's station.
"How is Dr. Futerman?" he asked.
"His condition is satisfactory," a nurse answered.
"How the hell would you know?" he said. "You haven't been in here for three days!"
My friend Futerman was exercising one of the inalienable rights of hospital patients: the right to assert himself, to speak up, to express concern about his own care.
There are other rights. There are responsibilities, too, if a patient wants a successful stay.
Being assertive is both a right and a responsibility.
It sometimes can be crucial. And sometimes someone else has to do it for an incapacitated or hesitant patient.
A Bethesda man had a mild stroke and was hospitalized. A few days passed, and surgery was scheduled. Meanwhile, his wife was sitting in his room with him on a sleepy weekend when he turned to her and said, "I can't lift my arm."
A few minutes later one of his doctors -- a neurologist -- came into the room and said, "How are you?" The patient, normally a strong-minded executive, answered, "Fine."
"No, he's not," his wife said. "He just told me he can't lift his arm."
The doctor looked at the wife, nodded coldly and departed.
The wife spent an hour trying to convince nurses and residents there was a problem. She finally phoned a relative who was a doctor, who phoned the hospital, where the staff at last looked in to find that the patient had indeed suffered a second stroke.
He ultimately recovered -- as it happened.
Many things make it hard for you to assert yourself when you're hospitalized. First of all, you are sick. The hospital may have furnished you a list of your "rights," but you're in no shape to battle for them.
There is also an odd feeling many of us may have when we're sick: we feel guilty or apologetic -- or fearful -- and deny any problem. Dr. Eric Cassell, in "The Healer's Art" (Lippincott, 1976), writes: "The patients, no matter how weak and sick, almost always answer the telephone the same way: 'Better, thanks -- doing pretty well.' It is their duty to protect the rest of the world."
You may be cowed by the hospital atmosphere, one that controls you and can make the most aggressive person -- the Bethesda executive -- passive and weak.
Hospitals are intricate places that demand conformity of staff and patients. "Passivity is wanted," Cassell says. "That patient succeeds best who merely lies down and does what he or she is told."
You may not know who is doing what for you, who all these people are and why they are poking and testing you. And no one tells you in words you can absorb.
For all these reasons and more, you may often find a set of "patients' rights" in a hospital pamphlet, and denials of these rights in the same hospital.
There was a strong patients' rights movement in the early 1970s, culminating in the adoption of a Patients' Bill of Rights by the American Hospital Association. After a while the movement receded. It has picked up some steam again, as hospitals themselves, troubled by empty beds, are making new efforts to please patients.
Yet a patient writes: "I need help. During the past year, I spent several months in the hospital. During my stay, I never was told any of my rights. . . . Never did a hospital representative come to see me to tell me just what rights, if any, I had."
Your rights as a hospital patient can be summed up by saying you have a right to: Good care. Dignity, courtesy, privacy and respect. Information. The ability to make your own decisions about your fate.
Of all these, the right to understandable information is among the most important. You are asked to consent to tests, treatments and operations. You must sign consent forms. But the givers of the information you need -- doctors, nurses, others -- are often harried and hurried.
This may not be their fault. But you still have a right to say, "Slow down. I don't understand. Why do you want to do this? What will it do for me? What are the chances it will work? How much risk will there be? Can it hurt or kill me? What if I don't do it? What are my alternatives?"
You are handed a pill you don't recognize. Ask about it. You are wheeled to a test you didn't know was scheduled. Ask. The pill, the test may be intended for someone else.
You may feel any further treatment is hopeless, and sometimes you may be right. A Harvard medical professor tells of "a friend's mother who was getting endless therapy for cancer, and got the feeling no one was honestly telling her the situation was hopeless. She finally said, 'I'm not going down for my treatment today. I don't believe it's doing any good, and I don't think you believe it either. Why don't you just give me some medication and send me home?' That turned out to be the best thing to do for her, at that stage."
Everyone who knows anything about hospitals advises: "Ask questions. Ask questions of everybody who comes in. Keep asking." "People who work in hospitals are working there basically because they care about people and want to help them. Most of them will try to listen," says Dr. Heather Palmer of the Harvard School of Public Health.
"The biggest improvement in health care in the last 15 years has not been technological advances," says Dr. Sidney Wolfe, head of Washington's Health Research Group. "It has been patients asking questions. The more questions, the fewer mistakes, and the more patients are able to cooperate in good care."
You also, it should be added, have a right to say, "I don't want to know everything. I don't want any more information. Do what you think is best."
A nurse says: "When I was a student nurse, we were not permitted to tell patients anything, even their blood pressure or temperature. We were taught not to use the word 'tumor,' let alone 'malignancy' or 'cancer.' But now everyone has decided we have to tell patients the truth.
"In part, it's the ethics movement; in part, the malpractice thing. So what you're going to get from the doctors these days is the most fatalistic possible outcome. They don't want you to say, 'The doctor didn't tell me.' But not all patients want to participate in the decisions."
If you don't want to, say so.
If you do, say so.
Assertiveness -- speaking up -- remains the key to either course.
There are various ways to engage in it. Dr. Palmer advises saying "polite, persistent things," because "people who get loud and pushy may get something stitched together just to shut them up."
Nurse Barbara Huttman (in "The Patients' Advocate," Penguin, 1981) writes: "Whether you call it assertive, aggressive, nasty, demanding, antsy or picky, that's what you have to be in a hospital. Remember, 'the squeaky wheel gets the grease.' . . . There are times when assertive behavior is the only way to reduce a needlessly long wait."
If you call for a nurse and no one appears, keep calling. Try to allow at least 20 minutes between calls, Huttman says, then call again. And again. If you're in terrible pain or other trouble, say so.
If you still can't get help, phone the hospital's patient representative -- some hospitals now have a 24-hour hotline for patient complaints. Or phone your doctor. Or the doctor's answering service.
Whether you should be polite and persistent or aggressive and demanding may depend on the situation. In any case, you are not obliged to be an ideal patient to have a right to good care. You may have a right to be angry or cranky.
"Be honest about how you feel," says Georgiana White, a Harvard teacher of patient advocacy. "If you're afraid, if you don't understand, if you're being told things that make you nervous, say so. You're not supposed to perform -- you need something done for you. Say so if you think you're not getting it."
From her own experience as a pediatrician, mother and patient, Dr. Palmer says: "You have to be very strong to survive in a hospital."
"My father-in-law, who's 83, was in the hospital with a broken hip," she recalls. "He was suffering and in pain. They put him in a room with a young man hurt in a motorcycle accident. The room was always full of noisy young men in leather jackets.
"He complained. It didn't do any good.
"Finally at 10 o'clock one night he got out of bed and made his way to a chair by the nursing station. The nurses said, 'What are you doing here? Hadn't you better go back to bed?'
"He said, 'I can't stand it there anymore.' They said, 'Please go back.' He wouldn't. He sat there until finally somebody called his doctor. Then they finally moved the motorcycle fellow to another room."