Prognosis is the term for the most likely outcome of a medical condition. When it comes to health care, talking about your prognosis can be difficult for you, your family/friends, and even your healthcare providers. However, many of us prefer to talk to our healthcare providers about the expected course of an illness and about our life expectancy when living with a chronic or terminal illness. This is according to new research on advanced care planning (the technical term for having early conversations with our healthcare providers about our care needs, preferences, and expectations).
In a new study published in the Journal of the American Geriatrics Society, researchers examined how older adults with disabilities later in life might react to learning their prognosis, and how they evaluated their own prognosis compared to “official” estimates.
The study participants were 35 adults 70-years-old and older from four geriatrics clinics in the San Francisco Bay area. All the participants required help with daily activities, and they all participated in a 45-minute interview as part of the study.
The researchers asked older adults questions about how they would want to receive information about their life expectancy. For example, did they prefer hearing or reading news about their prognosis? Would they prefer receiving information about their prognosis while at home by themselves?
Additionally, participants circled the shortest, longest, and most likely number of years they thought they might live on a scale from zero to 30 years. Researchers then offered to give the participants an estimate of life expectancy with a visual presentation using an estimate system created for people older than age 50. Next, participants were given the option to see their prognosis. If they chose to see it, they discussed their reactions with the researchers. Afterward, researchers asked the participants 10 questions about their feelings based on hearing about estimated life expectancy. The researchers called the participants two to four weeks later to check on their reactions as a follow-up.
Over the course of the study, the researchers learned that:
- 16 participants (46 percent) had life expectancy estimates that were within two years of the “most likely” estimate from a healthcare professional.
- 15 participants (43 percent) over-estimated their own life expectancy by more than two years compared to the “most likely” estimate.
- 4 participants (11 percent) under-estimated their own life expectancy by more than two years compared to the “most likely” estimate.
- Overall, 30 participants (86 percent) estimated their life expectancy in a way that at least overlapped with the “official” estimated calculation.
The researchers concluded that most older adults wanted a health care practitioner to be present when discussing life expectancy. People in the study did not react with sadness or anxiety when they learned about life expectancies, though several disputed the calculated results.
“Health care practitioners may offer to discuss life expectancy with their older, disabled patients and expect the patients to tie the information into their own life narratives,” said the researchers.
According to other research, key reasons for a healthcare professional’s reluctance to have these discussions with their older adults may include:
- Fear of taking away hope
- Concern for a negative reaction
- Time restraints
- Poor training
- Worry about giving someone a mistaken prognosis, leading to incorrect information about a person’s future
Addressing these and other important concerns remains key to advance care planning, which has been shown to improve the quality of care we receive as we age.
This summary is from “Prognosis Communication in Late-Life Disability: A Mixed Methods Study.” It appears online ahead of print in the Journal of the American Geriatrics Society. The study authors are: Theresa W. Wong, MD, MPH; Sean Lang-Brown, BS; Rafael D. Romo, PhD, RN, PHN; Alvin Au-Yeung, MPH; Sei J. Lee, MD, MAS; Patricia J. Moran, PhD; Jason Karlawish, MD; Rebecca Sudore, MD; Josephine Clayton, MBBS, PhD; and Alexander K. Smith, MD, MS, MPH.