Swedish Study Shows Many are Not Told Spouse is Dying

From TIME Magazine, a Swedish study of nearly 700 men whose wives died from breast, ovarian, or colon cancer in 2000 or 2001 showed 40% were not told their wife's cancer was incurable, or were only told just before death. Eighty-five percent of study participants thought spouses should be told immediately. The research was conducted at the Karolinska Institute in Stockholm and appears in this month's Journal of Clinical Oncology.

The findings . . .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."