A rather surprising story has come out of Sweden, regarding family members (particularly spouses) who remain uninformed of their loved one's terminal illness. Many were simply not told by doctors that their spouse's illness was terminal until right before the spouse died.
In fact, "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.""
In America, increased privacy laws mean doctors need the patient's permission to discuss their medical information with loved ones, so both doctors and patients need to be conscientious about their communication.
But interestingly, not everyone wants to know that their loved one is going to die. 15% of people in this Swedish study said that they did not want to know that their loved one was near death.
How much information we have about our dying spouse, however, may directly impact our recovery and coping skills after they die. According to this story, "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.""
Source: http://www.time.com/time/health/article/0,8599,1821296,00.html
Tell Us
Are you like the 15% of participants who would not wish to know their spouse was about to die? Or would you prefer to remain fully informed of your loved one's progression towards death? How do you think each decision would affect your coping skills once your loved one was gone?
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I can't believe some doctors would willingly and knowingly withhold information from loved ones and caregivers...seems unethical (especially if the patient gave permission for the doctor to discuss their health condition with their spouse...how can they talk about the health condition without mentioning health status and prognosis?). Are the loved ones mentioned in this study not remembering what the doctors said, as I would assume denial would be a HUGE part of this. Are the doctors lying, as I also assume one of the primary questions the caregiver/loved one would ask is, "what are the chances of treatment working or cure or survival". Lastly, does the patient know they are near death, and also not telling the spouse?
I would definitely want to know my spouse's health status, chances of recovery, chances of surviving...the entire prognosis. It would be difficult to hear that they are near death, but there is always hope. It is important to be able to have those last moments, as well as prepare for the process of death. Our society treats death very differently than others; I've always been interested in the Hispanic culture with their celebrations of death. Do they have less depression after the death of a spouse then cultures who do not celebrate, or otherwise effectively cope with, death?
July 20, 2008 - 11:32amThis Comment