By Joyce Lee
Incorporating long-term prognosis, or the estimated amount of time one is expected to live, into conversations between older adults and primary care physicians may be beneficial, a study in the Journal of the American Geriatrics Society recently reported.
Placing one’s life expectancy in the context of one’s own narrative is particularly important for older patients, the study found, and physicians might be able to help with this process.
In the past, physicians have often shied away from discussing long-term prognoses with patients, for reasons such as fear of negative reactions or fear of taking away hope. However, the study, which examined patients’ reactions to calculated life expectancies, actually found little evidence for sadness or anxiety in patients.
The study interviewed 35 older adults, ages 70 and older, living in the San Francisco Bay area. All were referred from geriatric clinics, and all required assistance in at least one “Activity of Daily Living,” which could include bathing, grooming, dressing, walking, eating, or going to the toilet.
This study, titled “Prognosis Communication in Late-Life Disability: A Mixed Methods Study,” was published in the Journal of the American Geriatrics Society on September 14, 2017. PMC co-director Jason Karlawish is one of the authors of this study.
“Here at Penn, much of our research examines how knowledge about the risk of Alzheimer’s disease dementia impacts a person,” Karlawish said. “This study with my colleagues at UCSF [University of California, San Francisco] is part of a broader interest to understand how talking about personalized risk, in this case the risk of death, impacts a person.”
Participants were first asked to estimate the amount of time they expected to live, on a scale of 0 to 30 years. Next, based on their age, sex, physical function, and chronic illness, their life expectancies were calculated through a research-validated index. Participants were then shown these calculated life expectancies and interviewed about their reactions, both immediately and two to four weeks later.
A comparison of estimated versus calculated life expectancies revealed that around half of participants were within two years of correctly estimating their life expectancies (“concordant”). Of the rest, a majority overestimated their life expectancies (“discordant”).
Those in the discordant group often had stronger reactions to the calculated life expectancies, which included rejecting the numbers outright, while those in the concordant group tended to have short, affirmative responses.
But regardless of concordant or discordant results, a major theme emerged across interviews with participants: the idea of “fitting life expectancy into one’s narrative.” This often appeared in concert with reflections of how in control participants felt with their lives, how they evaluated their own health, and how they viewed their remaining time left.
These perspectives on control, health, and outlook ranged from optimistic to pessimistic. On control, participants often referenced the will of God or their own behavior. One participant said, “I think there is probably a good deal of control that I still have over the lifespan depending on how I treat myself.” On health, some emphasized quality of life over quantity, with one participant saying, “I wanna live and I wanna have a full life and not [just] exist.” On outlook, many reconciled their present situation with the future possibility of death; as put by one of them: “The next one or two years I’m looking forward to, but I’m ready to go if God took me tonight.”
In general, though, there was little positive or negative emotional and behavioral impact in the participants. Only two individuals reported sadness or anxiety; however, of the two, one misunderstood the question, and the other had anxiety disorder brought on by unrelated events.
Given these results, physicians might not feel the need to hold in-depth discussions about prognoses. But given patients’ desires to assimilate this information into their own life narratives, physicians might do well to hold these conversations.
The study also reported that a majority of participants preferred having doctors communicate their prognosis rather than learning about it on their own. At the very least, then, it looks as if physicians – particularly those in primary care – should open conversations about prognoses, so that patients are able to receive the support they need. Just as previous studies have demonstrated that patients often look to physicians to lead clinical decision-making, this study demonstrates that patients are looking to physicians to lead conversations over clinical prognoses.