Many Not Told Spouse Is Terminally Ill

If your spouse were dying of cancer, would you want to know? For the vast majority of people, the answer is a resounding yes. But a new Swedish study suggests that many people are never given that information at all.

Researchers at the Karolinska Institute in Stockholm surveyed nearly 700 Swedish men who lost their wives to breast, ovarian or colon cancer in 2000 or 2001. More than 40% of widowers surveyed said they were either never told their spouse's cancer was incurable, or weren't told until just before her death. About 85% of participants said they, or the next of kin, should be told immediately when a spouse's cancer is incurable, a proportion that includes 71% of the men who did not recall being told this information about their own wives. "Sweden is not unique in this lack of communication," says lead author Hanna Dahlstrand, an oncology resident at the Karolinska Institute. "It's likely the same in nearly all Western nations."

The findings, to be published in this week's Journal of Clinical Oncology, suggest doctors need to do a better job at communicating the exact nature of an illness. Physicians are, after all, largely responsible for informing families when their loved one is facing a fatal disease — of those widowers who were told that their wife's cancer was incurable, 79% received the news from the doctor. Still, patients and families do control at least some of the information flow, Dahlstrand says. "Sometimes a spouse can block out what the doctor is trying to tell them," she says. "So, the doctor must be as straightforward and unambiguous as possible."

At the same time, patients must be clear with their health providers about how much information they wish to have and with whom they wish to share it. Previous studies have shown that patients often have an easier time dealing with a terminal diagnosis when accompanied by their families, but doctors in the United States, for example, are prevented by medical privacy laws from revealing health information without a patient's consent. Plus, not all families want all the information: the Swedish study showed that 15% of participants did not wish to know that their wife was near death.

The new study is part of a larger inquiry into how people prepare for the nearing death of a spouse. Very little research has been done on how communication before death affects a widow or widower's physical and mental well-being after their spouse is gone. One study, published last spring in the journal Death Studies, found that knowing ahead of time that a spouse is fatally ill may give the surviving partner an opportunity for closure and may prevent extreme depression later on. The paper warns that while most mourners eventually recover from the loss of a loved one, about 20% will face chronic emotional difficulties. Having a chance to say goodbye can mitigate those future problems. "It was less about how much was said, as long as you had the chance to say what you wanted to say," says lead author Patricia Metzger, a graduate student in psychology at the University of Wyoming. "People want that time to remind their spouse how much they love them."