Probe reasons if asked to keep info from patients
Family wishes can't outweigh patient's best interest
Full disclosure of information to patients about their illnesses and treatment is considered the cornerstone of patient autonomy; patients capable of making their own health care decisions can only do so if they have enough information to weigh the risks and benefits of treatment. But what if the patient, or more commonly, the patient's family, wants that information withheld?
"That's a perennial question — I call it a 'job interview question,' because I was asked that a lot on job interviews," says Timothy F. Murphy, MD, assistant professor of medical education at the University of Illinois-Chicago. "It's a case where ethics and the law can collide, and it's possible to have multiple opinions on which way to go in these situations."
In the United States, the patient's role in the center of health care decision making is a relatively new idea. As recently as the early 1960s, surveys of physicians showed that the majority polled routinely withheld bad news from their patients, usually because they or the patients' families believed that the stress caused by a poor prognosis would be harmful.
By the time of the Patient Self-Determination Act in 1991, full disclosure and patient autonomy had replaced the notion of "protecting" patients from bad news. But whether rooted in cultural practices or family concerns, physicians still occasionally find themselves asked to be less than candid with patients.
While withholding medical information is the exception rather than the rule for U.S. doctors, their colleagues in Europe, most of Asia, and the Middle East still largely consider the withholding of negative health care information to be humane, particularly when the patient is facing a fatal illness. Therefore, natives of those countries now living in the United States might consider it a natural request to ask their family physician not to deliver complete health care information to a loved one.
"Our normal approach is that the patient gets to make an informed decision," says Murphy. "Sometimes families want to protect patients from information, and sometimes patients send signals that they want to opt out of knowing. So we have to figure out a resolution, and in some cases there are ways to finesse it."
Reasons for nondisclosure vary
When the issue of withholding information from patients arises for cultural reasons, there are strongly held beliefs behind the request.1 Some cultures view discussion of death and serious illness disrespectful or rude to the patient; others hold that to talk about terminal illness can cause depression and anxiety, or even eliminate the patient's hope (considered a powerful factor in healing). People of some cultures believe that to talk about an illness or impending death makes the illness or death inevitable.
It wasn't until the 1970s that surveys of physicians indicated a trend toward full disclosure of information to terminally ill cancer patients. Murphy recalls being a child and hearing his parents talk about a friend who had cancer, and his mother asking, "Does she know?"
"I remember just being amazed that someone could have cancer and I knew it but she didn't," he recalls.
In the United States, the patient is now at the center of health care decision making, and so a concerted effort should be directed toward finding out what the patient wants to know, and how he or she wants to receive information, Murphy points out.
"A patient may signal a willingness to receive some information, but not all, and you want to respect that, but it may not always be possible, depending on the medical management," Murphy continues. If a situation arises such as "an adult son standing in the doorway, blocking your path and insisting that his mother can't be told anything about her condition, it would be imperative to convey to the patient that you have information about their condition."
Sometimes, a protective family misjudges their loved one's ability to cope with difficult information, and the patient is not only capable, but anxious to receive the information.
"There are all sorts of discrepancies in life between what people expect and what is real," he points out. "If a doctor is asked by a son or daughter to withhold information because they think it would be harmful to the patient, I would ask for a high standard of proof to show that [disclosure] would hurt."
A stepwise approach, with the physician as intermediary, can sometimes lead protective family members to relent. Making the case that their loved one is in a very serious condition and that there is little chance that the information can be kept from him or her is sometimes persuasive, says Murphy.
"You have to test the waters," Murphy explains. "And keep in mind that usually you don't have to make all the decisions at once. Sometimes, conflict arises when physicians approach it as a 'once and for all' decision-making situation, and it doesn't necessarily have to be."
A family conference can provide an opportunity for the physician to explore why the family opposes disclosure of information to the patient, and perhaps help to find middle ground from which to proceed — though it does not always work out that way.
"Rather than directly going against a family's wishes, it makes sense to find out why people hold the views they do," Murphy says, adding, "But while you don't want to send people home from the hospital unhappy, bringing a patient into the decision making to the extent they want to be has to be your primary concern."
In pediatrics, child's age dictates
When the patient is a child, the rules about disclosure by necessity must be more flexible. In most states, children younger than 18 are not legally enabled to give consent; nonetheless, the prevailing thought in U.S. medicine is that maturing adolescents should be brought into the decision-making process when their own health is at issue.
"If a child is 3 or 4 [years old], probably protecting him or her from hurtful information is more justified than giving them information, especially when there is nothing the child can do to alter things because the child is not involved as a decision maker," says Murphy. "But the more mature the child is, and the more the child is the decision maker, the more reason you have to resist withholding information."
- Searight HR, Gafford J. Cultural diversity at the end of life: Issues and guidelines for family physicians. Am Fam Physician 2005; 71:515-522.