Seeing what life might one day be like can be powerful, study says,,
FRIDAY, May 29 (HealthDay News) -- Seeing a video of someone with advanced dementia can help people facing the same fate make more informed decisions about the type of care they want at the end of their life, a new study suggests.
"Medicine is involving patients in a shared decision-making process about their medical care at the end of life," said the study's lead researcher, Dr. Angelo Volandes, from the Department of Medicine at Massachusetts General Hospital in Boston. "But there are challenges to helping patients imagine what some of the diseases and the medical interventions involved are."
Making such decisions can be difficult and confusing when people have limited knowledge of their condition and the treatment options available, the researchers noted, and sometimes talking alone does not paint the full picture of the course of the disease and care options.
"We have to think of creative and informative ways of improving patients' understanding of these diseases and interventions," Volandes said. Using videos can help, he added.
For the study, published in the May 28 online edition of BMJ, Volandes and his research colleagues randomly assigned 200 healthy people 65 and older to listen to an oral presentation on dementia and to watch a video on advanced dementia or to just listen to the oral presentation.
The participants were then interviewed about their knowledge of advanced dementia, the goals for their care and, for those who watched the video, their comfort with its contents. They were allowed three options for care goals: care that would prolong life by all available means, limited care to maintain physical functioning or care intended to maximize comfort and relieve pain.
Among those who only heard the narrative, 64 percent chose comfort care, 19 percent chose limited care, 14 percent chose life-prolonging care, and 3 percent were uncertain which to choose. For people who saw the video, 86 percent chose comfort care, 9 percent chose limited care, 4 percent chose life-prolonging care, and 1 percent couldn't decide, the researchers found.
People choosing comfort care were more likely to be white, a college graduate, in good health and be more health literate, the study noted.
Six weeks later, the researchers asked the participants whether their choices had changed. Among those who had not seen the video, 29 percent changed their choice, compared with just 6 percent of those who'd seen the video.
"There is a lot of perception in the medical community that we need to protect our patients from what these diseases are like," Volandes said. But, he pointed out, "the patients were very comfortable watching the video."
Volandes thinks videos could be used with other terminal conditions such as heart failure, advanced cancer and chronic obstructive pulmonary disease.
"Videos offer information that verbal descriptions often cannot," he said. "In this case, the adage 'a picture is worth a thousand words' is true, because, after the video, we know that when patients use the words 'advanced dementia' and when the doctor uses the words 'advanced dementia,' we are both on the same page."
"Videos make these diseases real," he said.
However, Elizabeth Gould, director of quality care programs at the Alzheimer's Association, is not convinced that's the route to take.
"There are so many things that come up at the end of life that present a lot of moral dilemmas for families," Gould said. "We want to urge that people are planning and doing what they can to plan for the future." Planning end-of-life care, she said, should start as soon as possible after a degenerative fatal disease such as Alzheimer's is diagnosed.
People should be informed about what they will encounter and what treatments are available, Gould said. "At this point, we don't know enough about video to see how effective that would be, but the main point is that people are getting education and planning for the future," she said.
Whether a video presentation is fair and objective also should be considered, said Kenneth J. Doka, a professor of gerontology at the College of New Rochelle in New York, a senior consultant to the Hospice Foundation of America and a Lutheran minister.
"The power of video is the fact that it is very powerful," Doka said. "It's a great tool for information, but it's also a great tool for manipulation."
As long as the video is accurate and objective, "then I think it would be an extraordinarily effective educational tool," he said.
The Journal of the American Medical Association has more on end-of-life care.
SOURCES: Angelo Volandes, M.D., Department of Medicine, Massachusetts General Hospital, Boston; Elizabeth Gould, M.S.W., director of quality care programs, Alzheimer's Association; Kenneth J. Doka, Ph.D., professor of gerontology, College of New Rochelle, N.Y., senior consultant, Hospice Foundation of America, and Lutheran minister; May 28, 2009, BMJ, online
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