Should MDs ration what they say to patients?
Don’t give up role as an advisor, experts say
The department of maternal and fetal medicine at Vanderbilt University Medical Center (VUMC) in Nashville, TN, sees many patients referred in from rural parts of the state to receive specialized care not available in their own communities.
For example, it is common for women deemed at an increased risk of giving birth to a child with trisomy 13 (Down’s syndrome) to travel several miles to undergo genetic screening at the academic, urban medical campus, says Frank Boehm, MD, FACOG, VUMC’s director of maternal/fetal medi-cine and chair of the center’s ethics committee.
However, these patients rarely comprehend the true nature of their situation and what the genetic testing can hope to tell them, he notes.
Although a woman older than 35 is at a significantly higher risk for having a child with Down’s compared to a woman who is 20 years old, the risk for mothers age 35 and older is only one in 360 births — there is a 99.7% chance the baby will not be affected. But, because a clinician has told them "increased risk," most mothers assume it’s very likely their unborn child will have this condition.
"They don’t know this; there is really nothing they can do, but they come in shaking, they are so scared," says Boehm. "This was a great opportunity for the physician in an outlying community to have explained the situation — that it is a relative increased risk based on age, but it is still a very small risk."
With the multitude of screening and diagnostic tests available, and with newer ones developed each year, there now is a huge amount of information that can be presented to patients.
Physicians must be careful not to confuse quantity of information with quality, however. It’s still their job to help patients sift through information and put all of the bits into an appropriate context.
"There sometimes seems to be this backlash from the previous 20-30 years, when physicians didn’t give their patients as much information. They told them only what they felt they ought to know," says Clarence H. Braddock, MD, MPH, assistant professor of medicine and adjunct professor of history and medical ethics at the University of Washington in Seattle. "The current emphasis on patient-centered care and shared decision making sometimes seems to get interpreted almost like, OK, you want information, here’s information.’"
But, many patients have difficulty putting the complexities of the information they get into the proper context. As Boehm says, "They hear a phrase like increased risk’ and they think 100%."
And when there is nothing a patient can do with particular information, when they cannot alter their behavior in hopes of changing an outcome, they may decide they would rather not even know it, says Braddock.
So, should physicians ever withhold information from their patients? It’s a difficult question for some to answer.
In general, most clinicians believe it is unethical for caregivers to ever withhold information about a patient’s condition or treatment from the patients themselves, says Braddock.
Honesty is a key element in fostering trust between the physician and patient and in showing respect for the patient, he adds. Patients must place a great deal of trust in their physician and may feel that trust misplaced if they discover or perceive a lack of honesty and candor.
However, it’s important that information be conveyed in a sensitive and caring manner, particularly if it’s information that may be unexpected or unpleasant.
"This is one of the things that we hear from patients is that physicians sometimes confuse candor with bluntness," Braddock says. "It is one thing to be candid and deliver potentially bad news in a professional and caring manner. It is another thing to just dump really bad news without any support. There are, obviously, a lot of things in between."
And there are rare situations, when a physician may feel it necessary and ethically justifiable to withhold certain information from patients, Braddock says.
"One is a situation that is referred to as therapeutic privilege," he explains. "It refers to when the physician feels that the information they have, if divulged to the patient, would be so disturbing to their physical or emotional health that it would be a bad idea."
Therapeutic privilege
The acceptable limits of therapeutic privilege have gotten narrower over time, however, Brad-dock stresses. Where, at one time, a physician might have felt justified in withholding information he or she believed would be very upsetting to a patient, this is no longer considered appropriate.
"I think it used to be interpreted too broadly — I don’t want to tell the patient she has cancer because she might start crying,’" Braddock says. "I believe the current thinking is more along the lines of that hearing the news would cause some severe exacerbation of their symptoms and require hospitalization."
A common scenario where this is considered is the case of patients with a physician condition who also have a coexisting mental condition. Specifically, says Braddock, a depressed patient who is actively suicidal.
In that situation, there is a high likelihood that unpleasant information could exacerbate the person’s condition, and that they are not prepared to process the information in a way that would be helpful to their care.
"There has to be pretty compelling evidence that the information would cause demonstrable physical or psychological harm," Braddock notes. "It is a very narrow definition, and, as you might imagine, still subject to wide interpretation."
Another situation that frequently comes up is a patient’s makes a specific request not to be told certain information, he says.
For example, some patients ask that information about their condition to be discussed with other family members, but not with them.
"It is perfectly ethically justifiable if the patient says they do not want to be told the diagnosis or the results of the tests, to withhold that information so long as the results or lack of the patient knowing do not create potential harm for others," he says. "For example, a patient may not want to know the results of an HIV test. But, in that situation, he or she would need to know so that they could take action to protect others."
However, in some cases, Braddock says it is important for doctors to encourage patients not to abdicate their role in the decision-making process and be participants in their own health care, particularly if the information could affect the patient’s future actions or decisions.
"If the results of diagnostic tests or other information indicate that the patient needs to take some action in order to prevent a worsening of their condition or the occurrence of a bad outcome, then that would make a difference, I think, in how hard you should try to convince the person they should be a participant in their own decision making," he says.
Another situation that commonly occurs is that some patients, due to cultural or religious beliefs, ask that they not receive information about their condition, Braddock adds.
"There are some cultures and subcultures that have beliefs indicating you are not supposed to tell the patient things or involve them in the decision making," he says.
For example, a study of patients with traditional Navajo beliefs found that many did not want to hear information about the risks involved in recommended treatment because they believed that discussing such risks invited the potential events to occur.
The physician-patient dialogue should be sensitive to such beliefs, Braddock believes, but no clinician should assume that a person subscribes to such beliefs simply because of their inclusion in a particular racial or cultural group.
"It’s important to ask the patient about what beliefs and preferences they have," he says. "This actually comes up quite commonly. We sometimes have patients, and doctors tell me they will initiate discussions about treatment options with a patient, and the patient will ask them, Why are you discussing this with me? You need to talk to my son, or daughter, or spouse, etc.’"
Communicating effectively
Not all doctors are comfortable with the idea of holding something back.
Physicians should carefully examine any intention on their part to withhold information from patients, says Boehm.
In almost all cases, he says, it is inappropriate for physicians to have information about their patients that they don’t share with that person, even if they know the information to be difficult to understand or disturbing.
"Explaining difficult results or information is part of our job," Boehm emphasizes. "Patients who are denied explanations or options are getting inferior care."
However, he agrees that it important for physicians to know how to effectively communicate with patients and to ensure the patients actually hear and understand what they’re told.
"After I have given patients information, I usually stop and ask them to tell me what they’ve heard me say," he explains. "Studies have shown that patients, particularly if they are hearing bad news, don’t really hear what we tell them. They are too overwhelmed and can’t focus. So, I take the time to ask them to tell me what they’ve heard, so that I can know that I’ve communicated the information."
Boehm knows first hand how difficult it can be to process information about an unexpected diagnosis. A few years ago, during a routine coronary exam, his doctor found numerous calcifications in the cardiac arteries.
"I had just finished a class, teaching medical students about giving bad news to patients," he says. "I remember thinking, Isn’t this interesting. I’m going to see how he [the cardiologist] handles this.’ My second thought was, I’m going to be sure and listen carefully because I know patients often don’t hear what doctors say.’ The next thing I know, he’s asking me if I have any questions. The whole time he was talking to me, I hadn’t heard a word he said."
It is important for physicians to understand that they have an enhanced role, even though the physician and patient may share in the process of making decisions about care, say both Boehm and Braddock.
Doctors simply cannot provide information and leave it solely up to the patients to decide.
"You don’t want the physician merely sketching out the options and leaving it up to the patient to decide," says Braddock.
"Then, they are abdicating their role as a professional who should offer background, and context, and their professional opinion," he continues. "The physicians should also not maintain total control over the information, ignoring the patient’s values and preferences. It is a balancing act between providing enough information for the patient to feel OK about what they are deciding and committing to it, vs. giving them so much information they are overwhelmed, and dumping so much decision-making responsibility on them, that they feel they must decide all on their own."
Sources
- Frank Boehm, MD, FACOG, Director of Maternal/Fetal Medicine, Chairman of the Medical Center’s Ethics Committee, Vanderbilt University Hospital, B-1100 Medical Center North, Nashville, TN 37232-2519.
- Clarence H. Braddock, MD, MPH, Assistant Professor of Medicine and Adjunct Professor of History and Medical Ethics, University of Washington, 1959 N.E. Pacific St., Seattle, WA 98195.
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