By Steven Syre
Centenarians’ end-of-life sentiments and plans are often misunderstood by those closest to them, according to a new study from the LTSS Center.
Very old adults often count on family members and others close to them for help on important decisions. But those relatives and primary social contacts are often unaware or do not understand the very old adult’s thoughts about important end-of-life issues.
New research by fellows at the LeadingAge LTSS Center @UMass Boston found that primary social contacts misunderstood the end-of-life thoughts of very old people in nearly half of the cases studied.
In some cases, primary contacts were unaware of a centenarian’s thoughts about the end of life. In other instances, the contacts incorrectly presumed that the very old adults had thoughts and plans about the end of their lives. Overall, some kind of misunderstanding was found in 44% of the cases.
“Given the age of very old adults, one might have expected more and better communication with their family about end-of-life issues,” said researcher Kathrin Boerner, an LTSS Center fellow and professor of gerontology at UMass Boston. “Health care professionals should be aware that even among very old adults who are approaching the end of their lives, discussion about this topic may need to be actively encouraged and supported.”
The results of the study, published in the Journal of the American Geriatrics Society were based on in-person interviews with 87 centenarians and their primary contacts in Heidelberg, Germany.
Boerner said comparable data for U.S. centenarians is not available, but evidence from other American studies shows end-of-life issues are often not communicated or insufficiently discussed with family members, even in cases of advanced age and poor health.
“We think it’s likely that similar findings would emerge in a U.S. context,” she said.
MISUNDERSTANDING END-OF-LIFE SENTIMENTS
The new study uncovered evidence of misunderstandings between very old adults and their primary family or social contact about specific end-of-life sentiments. For example, among study participants:
- Just 1.5% of centenarians perceived the end of their lives as a threatening subject, while 10.6% of primary contacts believed the centenarian found the subject threatening.
- Nearly 1 in 4 centenarians reported longing for death, while only 10.6% of primary contacts perceived such a sentiment.
- Half of the centenarians said they believed in an afterlife, while 58.9% of primary contacts thought the centenarian held such a belief.
“Critical mental health care needs may go unrecognized when close family or friends underestimate centenarians’ longing for death,” said Kyungmin Kim, an LTSS Center fellow, assistant professor of gerontology at UMass Boston, and study co-author. “Overestimating perceptions of end-of-life as a threatening subject could lead family and close friends to avoid it in conversation while the centenarian may want to talk about it. In both cases, urgent end-of-life care needs could go unaddressed.”
MISUNDERSTANDING END-OF-LIFE PLANS
Researchers also found a large difference in responses from centenarians and their close contacts on questions about end-of-life planning. For example:
- 3% of centenarians reported having a living will, while 43.3% of close contacts said such a document existed.
- Only 38.3% of very old adults said they had a health care surrogate, while 55% of close relatives or friends said such an arrangement was in place.
Lower responses from centenarians may have occurred because their end-of-life plans had been made long ago and were no longer on their minds, said the researchers.
“Considering these findings, it seems important for very old adults to revisit existing plans together with their family,” said Boerner. “Health care professionals need to be alert to this issue among the oldest-old as well, particularly because family and close friends may not always be good judges of their elders’ preferences.”
Boerner and Kim co-wrote the article with Daniela S. Jopp, associate professor at the University of Lausanne, Switzerland; Christoph Rott, senior research scientist and lecturer at Heidelberg University’s Institute of Gerontology; and Yijung Kim, a PhD candidate in Gerontology at UMass Boston.