Patients' Rights: Who should know what?

Should you reveal or withhold vital information about patients? Often, your conscience is the only guide.

By Gail Garfinkel Weiss
Senior Editor

If information is power, doctors are among the mightiest people on the planet. You know a patient is HIV-positive before his or her mate does. You have the goods on a senior citizen who shouldn't be driving. The test results on your desk show that a patient's malignancy has advanced beyond medicine's ability to cure.

With knowing, however, comes choices, not the least of which is: What do you do with this potentially devastating information? Occasionally, legal guidelines exist, but more often than not, the decision is yours.

To get an idea of how physicians respond in these situations, our 2002 Ethics Survey explored the dual issues of paternalism and patient privacy that comprise the patients' rights debate. First we asked, "Have you ever withheld information from a patient, such as a grim prognosis or genetic test results that reveal an unavoidable illness, because you felt the patient would be better off not knowing?" The vast majority of respondents—87 percent—said No. Male doctors are more likely than females to withhold information, and older doctors are more inclined to do so than their younger counterparts.

Seattle internist and medical ethicist Clarence H. Braddock III notes that in a study done in the early 1960s, 90 percent of physician respondents said they wouldn't tell a patient he had cancer. A decade later, a similar survey reached the opposite results: 97 percent would reveal a cancer diagnosis. Some of today's older physicians, Braddock says, might be sticking with the more paternalistic beliefs of an earlier time.

The same goes for male doctors, who are more likely than their female colleagues to be "old school" physicians.

Leonard Morse, an internist and chair of the AMA's Council on Ethical and Judicial Affairs (CEJA), agrees: "In the past, if we had an established doctor-patient relationship, it was considered compassionate to withhold bad news and instead to notify a close family member. Now, most doctors believe patients should have all the information needed to make decisions about themselves."

Indeed, the AMA's official position on so-called therapeutic privilege, as noted in the CEJA Code of Medical Ethics, indicates that, "Patients have a right to know their past and present medical status and to be free of any mistaken beliefs concerning their conditions."

A right not to know?

The doctors who sometimes bend that ethical rule say that certain patients are ill-equipped to handle disconcerting news. Torrance, CA, internist Caroline Vargas, for one, occasionally honors a family's request that a patient not be told he has metastatic cancer—especially if Vargas thinks a candid account will worsen the patient's physical or mental condition. Still, no matter what the family says, Vargas tells all if the patient insists on knowing.

Not only do doctors like Vargas have an ethical duty to tell the patient, it's unlikely the news will come as a surprise, says internist William E. Golden, chair of the American College of Physicians-American Society of Internal Medicine's Ethics and Human Rights Committee. He says it's the rare patient who doesn't see through attempts to shield him from a grim diagnosis. "The notion that the patient is unaware of the diagnosis is pretty much a fiction on everyone's part—including the patient's," he adds.

Still, there's room to put some spin on the message, some doctors maintain. The AMA's Leonard Morse thinks it's important "to embrace all medical information with hope, even if it may be a stretch." Likewise, internist James C. Maher of Marshall, MI, notes that he might shade a prognosis to take the edge off bad news. "If the prognosis is very poor, it's my responsibility to communicate that to the patient," Maher says. "However, if I can magnify a tiny ray of hope and allow the patient to live a little more in waiting to die, I believe I have done him or her a service."

Maher had a patient who had endured a succession of treatments for a brain malignancy. "When he was hospitalized during a third course of radiation," Maher recalls, "his radiation therapist told me he had a 5 percent chance of being alive in six months. It was very disturbing to me that no one had leveled with him, and I met with him and his family in an effort to inject some realism into his decision to continue to fight the disease.

"I told the patient that there was a less than a 20 percent chance of success with the treatment. He elected not to continue the radiation and to get hospice involved. I was present when he died in his own home. Would it have been better to tell him 5 percent? I doubt it. The higher number didn't alter his decision to stop treatment, but perhaps it made his life a little more positive for a while."

Being forthright with patients, of course, means dealing with their reactions. Maher saw a 35-year-old man with pulmonary fibrosis who came in for another opinion after jumping from doctor to doctor in pursuit of some relief. "After getting studies, I told him I couldn't cure or really improve his problem, but I could offer palliative care. A short while later I got a call from the police that he had shot himself."

Orthopedic surgeon John O. Cletcher of Hygiene, CO, also had a patient who committed suicide soon after hearing bad news. "I reluctantly gave the whole story to a man who had a debilitating back injury, and within three hours he was dead. That brings you up short and makes you wonder whether you did the right thing. My opinion wasn't the only one he'd heard, but it was the last one. You don't sleep as well that night as you did the night before."

Ethicist Braddock recommends that physicians be vigilant if a patient seems despondent. "Make an assessment if the person is a suicide risk," he says. "Arrange for some type of follow-up—a phone call later that day, for instance—to see how the patient is doing."

What it comes down to, according to Braddock, is honoring medicine's "First, do no harm" caveat. "I think invoking therapeutic privilege is justifiable if, say, your patient is prone to depression and you have reason to believe that bad news could trigger a relapse. Or if the patient is cognitively impaired and can't process the information. But there's a difference between withholding information because you think it's going to upset someone and withholding information because you think it's going to harm him. The starting point should always be that the patient has the right to know."

When others have a right to know

Although most physicians generally agree that a patient has a right to know about his own illness, they're less certain about whether others have a right to know about it. That goes to the very heart of doctor-patient confidentiality, and has legal as well as ethical implications.

For 28 percent of our survey respondents, the answer is Yes, in certain situations, others do have the right to know about a patient's illness. Family practitioners, GPs, and internists were most likely to reply affirmatively when we asked, "Have you ever revealed confidential information about a patient if his or her condition or behavior could affect others?"

That's not surprising, says Clarence Braddock. "Primary care doctors are more accessible to family members, who might ask them to, say, contact the motor vehicles bureau about an impaired driver. Specialists, on the other hand, usually refer such requests from family to the primary care physician."

In certain instances, doctors must violate confidentiality: Laws in every state require physicians to report suspected child abuse, for instance. And infectious diseases, such as tuberculosis and many STDs, must be reported to public health authorities.

But what about notifying the sexual partners of a patient who's HIV-positive, or notifying the department of motor vehicles that a patient with an uncontrolled seizure disorder refuses to stop driving? In the case of HIV, state laws, at most, call for reporting HIV-positive test results to the local health department so officials can track the epidemic. That department may, in turn, contact patients and ask them to name sexual partners, but the patient can refuse to comply. Is it permissible, then, for you to notify the partner of a seropositive patient?

"Most of the justifiable exceptions to confidentiality involve situations where there is a real as opposed to imagined, and sizable as opposed to minute, threat to the public," says Braddock. Internist David A. Asch of the Leonard Davis Institute of Health Economics at the University of Pennsylvania, agrees that a doctor "has to have a very strong reason for violating patient confidentiality," such as reporting a patient who has made a specific threat toward another person.

The CEJA Code of Medical Ethics says as much: "The obligation to safeguard patient confidences is subject to certain exceptions which are ethically and legally justified because of overriding social considerations. Where a patient threatens to inflict serious bodily harm to another person . . . the physician should take reasonable precautions for the protection of the intended victim, including notification of law enforcement authorities."

An HIV-positive person who continues to have unprotected sex might not be making a specific threat, but Asch and others agree that such behavior is potentially dangerous. Nonetheless, Asch points out, "I think a lot of physicians would say that we're under a strong obligation not to report HIV-positive patients to their sexual partners, because of the discrimination that comes from being labeled HIV-positive."

Braddock explains, "You could argue that to protect the health of the public we should require the same disclosure of HIV status as we do for other communicable and infectious diseases. But when the HIV epidemic began, people identified as HIV-positive lost their jobs and were ostracized, due to misinformation about how the virus was transmitted and prejudice against homosexuals and injectable drug users. Now that treatment is available—and AIDS patients are less easily categorized—perhaps we'll have less opposition to HIV reporting."

The temptation to report an HIV-positive patient is even more compelling when the spouse is your patient, too. "The physician certainly should try to convince the patient that the spouse has a right to know," Braddock says. "You can try to change the patient's mind, but if he refuses there's no legal mechanism to force him to reveal his HIV status to his spouse or to anyone else." Still, several of our respondents say they've informed a patient's spouse—or another health professional who would be treating the patient—that the person was HIV-positive.

A similar situation prevails when an impaired person continues to operate a motor vehicle. You can urge the patient to stop driving, for his benefit as well as society's, and you can ask family members to intervene, but you're generally under no obligation to do more. Many respondents to our ethics survey indicate that they are required by law to report seizure disorders to the DMV. Others go further and notify the agency of other patient disabilities, including compromised hearing, vision, motor function, or cognitive skills.

Michigan internist Jim Maher learned that a moderately demented patient in her late 80s was still driving. He asked her some basic questions, including: If you were driving and saw an eight-sided red sign with four white letters, what would they be? "She couldn't answer the question," Maher reports, "and her relatives acknowledged that she was frequently confused, but they didn't want to intervene. So I notified the secretary of state's office that she needed to be tested before her license could be renewed.

"While I concede this may be a breach of confidentiality, it seems my responsibility."

When genetics is destiny

A new and expanding frontier in the "to tell or not to tell" arena centers on genetic testing. Few doctors would argue that a patient who requests a genetic test should be shielded from the results. But if the patient tests positive for, say, a BRCA1 mutation or the gene that causes Huntington's chorea, are you or the patient obliged to tell family members who might be similarly affected?

Seattle internist and medical ethicist Clarence H. Braddock III doesn't advocate taking it upon yourself to sound the alarm, but he does recommend encouraging the patient to let other family members know. "In the case of Huntington's," he says, "some people might want to be tested so, if the test is positive, they can plan their lives around that knowledge. Others might prefer not to know that they're going to develop a deteriorating disease."

Orthopedic surgeon John O. Cletcher of Hygiene, CO, agrees that offering family members the option of testing is preferable to leaving them in the dark. He acknowledges, however, that the genetic testing milieu is fraught with land mines, because a person with certifiably "bad" genes might be denied health insurance or life insurance, or might be pressured to remain childless.

The bottom line, says internist William E. Golden, chair of the American College of Physicians-American Society of Internal Medicine's Ethics and Human Rights Committee, is to authorize genetic testing for patients who request it—but to counsel patients to be careful how the resulting information gets disseminated outside your office.

Gail Weiss. Patients' Rights: Who should know what?.

Medical Economics

2002;19:97.