Older Adults’ Preferences for Discussing Long-Term Life Expectancy: Results From a National Survey

Nancy L. Schoenborn; Ellen M. Janssen; Cynthia Boyd; John F.P. Bridges; Antonio C. Wolff; Qian-Li Xue; Craig E. Pollack

doi:10.1370/afm.2309

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Author response Re:Context matters
Nancy L Schoenborn

Published on: 10 December 2018
Context matters
Ronald M. Epstein

Published on: 04 December 2018

Published on: (10 December 2018)
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Author response Re:Context matters
Nancy L Schoenborn, Assistant Professor of Medicine
Other Contributors:
We thank Drs. Epstein and Fiscella for their thoughtful and valuable comments.
Regarding the premise of prognostication, we agree that uncertainty exists anytime we apply population data to individuals. On the other hand, clinical practice guidelines, around cancer screening specifically, use life expectancy as a metric to guide screening.(1-3) The timeframe used in these guidelines is often life expectancy of 1...
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We thank Drs. Epstein and Fiscella for their thoughtful and valuable comments.
Regarding the premise of prognostication, we agree that uncertainty exists anytime we apply population data to individuals. On the other hand, clinical practice guidelines, around cancer screening specifically, use life expectancy as a metric to guide screening.(1-3) The timeframe used in these guidelines is often life expectancy of 10 years.(1-3) This disconnect between the guidelines and patients' perspectives - that the concept, timeframe, and language of life expectancy used in guidelines do not always resonate with patients - is exactly what we aimed to shed light on with this project.
We agree that context matters to a discussion of life expectancy. First, the timing matters as the letter writes point out, the benefit, relevance, and accuracy of prognostication may all improve as one is closer to end of life. We found in the study that patient willingness to discuss life expectancy increased steadily as predicted life expectancy decreased. Second, the clinical context also matters. In the study we asked the follow up question that if the doctor recommends stopping cancer screening due to limited life expectancy of the patient, whether the doctor should then discuss life expectancy, and more participants (419 versus 363) chose to discuss life expectancy in this scenario compared to the initial scenario not tied to a specific clinical decision. Important aspects of the context includes not only those mentioned by the letter writers, such as the type and severity of health conditions that patients have, but likely also a host of other factors. Some of these we described in this study sample (age, sex, health literacy, decision-making preferences, religiosity), and others that we did not but should be explored in future studies (neighborhood and geographic context, personality, health-related attitudes, value systems, social network influences, etc.). Better understanding how patient preferences around prognosis discussion varies across these nuanced variations of context is an area to be explored in future studies.
References
1.Oeffinger KC, Fontham ET, Etzioni R, et al. Breast cancer screening for women at average risk: 2015 guideline update from the American Cancer Society. JAMA. 2015;314(15):1599-614.
2.Qaseem A, Barry MJ, Denberg TD, et al, Clinical Guidelines Committee of the American College of Physicians. Screening for Prostate Cancer: A Guidance Statement From the Clinical Guidelines Committee of the American College of Physicians. Ann Intern Med. 2013;158(10):761-769
3.Qaseem A, Denberg TD, Hopkins RH, et al. Screening for Colorectal Cancer: A Guidance Statement From the American College of Physicians. Ann Intern Med. 2012;156(5):378-86.
Competing interests: None declared
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Competing Interests: None declared.
Published on: (4 December 2018)
Page navigation anchor for Context matters
Context matters
Ronald M. Epstein, Co-director, Center for Communication and Disparities Research
Other Contributors:
We appreciate the contributions of the study by Schoenborn et al but are concerned that the findings might be misinterpreted by casual readers (and the media) that "patients don't want to know." Here, context is essential.
We have doubts about the premise that "doctors can predict how long, on average, a person is expected to live." Patients prefer individualized messages to group averages.[1] For the individ...
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We appreciate the contributions of the study by Schoenborn et al but are concerned that the findings might be misinterpreted by casual readers (and the media) that "patients don't want to know." Here, context is essential.
We have doubts about the premise that "doctors can predict how long, on average, a person is expected to live." Patients prefer individualized messages to group averages.[1] For the individual, either one is alive or dead, not some fraction thereof. Our capacity for prediction on an individual basis, even for the most predictable illnesses, is modest, and for others it is poor; most survival curves have long tails. For less predictable illnesses physicians generally inflate survival estimates and further inflate those estimates when presenting them to patients.[2] A large percentage of patients with incurable disease believe that there is a chance that they can be cured.
At least in the cancer context, a recent study suggested that as few as 18% of patients base their own estimated survival on information received from medical personnel. The remainder base their estimates on their self-image, and information from other sources (internet, clergy, friends, etc.).[3]
Context matters. Patients would likely respond differently if they had an illness with few symptoms as opposed to those that have a higher symptom burden. They would likely respond differently if the illness was known to affect cognitive functioning and decisional capacity. They might also respond differently if the illness course were relatively predictable, such as cancer, as opposed to those which are less predictable (e.g. COPD).
We are not rational agents when it comes to contemplating our own deaths. Terror management theory suggests that mortality salience - how close death feels - affects behavior.[4] For those who are relatively healthy, increasing mortality salience can produce opposite reactions in order to preserve a sense of identity and manage anxiety - some seek further knowledge whereas others avoid thoughts and discussion. Moreover, people tend to affiliate with those who reinforce their own world-view. This may explain the failure of several studies designed to promote prognostic discussions to alter patients' prognostic awareness and their subsequent decisions.[5]
When death is more proximal and threatening, the initial anxiety about learning about prognosis is often followed by greater clarity, motivation toward quality of life, values-based decisions and stronger patient-physician relationships once the news has been assimilated.[6,7] However, far in advance of anticipated death, it is not clear what might be the psychological benefits from presenting actuarial data that is relevant to populations but minimally relevant to individuals.
We agree that some assessment of survival is essential in making screening decisions. However, many respondents reading the brief scenario would not appreciate that knowing prognostic statistics would have implications for medical decisions, including screening, and that screening decisions can have potential harms with little benefit.
Potentially, the indirect approaches to stopping screening previously tested by the authors seem reasonable.[8] As death approaches, prognostication improves as does patient willingness to discuss their life expectancy. Notably, half of participants in this study were willing to discuss life expectancy between 1 and 2 years with numbers exponentially increasing in the last year of life.
1. Walczak A, Butow PN, Davidson PM, et al. Patient perspectives regarding communication about prognosis and end-of-life issues: How can it be optimised? Patient Educ Couns 2013;90(3):307-14. doi: 10.1016/j.pec.2011.08.009 [published Online First: 2011/09/17]
2. Christakis NA. Death foretold: prophecy and prognosis in medical care. Chicago: University of Chicago Press 2001.
3. Trevino KM, Zhang B, Shen MJ, et al. Accuracy of advanced cancer patients' life expectancy estimates: The role of race and source of life expectancy information. Cancer 2016;122(12):1905-12.
4. Burke BL, Martens A, Faucher EH. Two decades of terror management theory: A meta-analysis of mortality salience research. Personality and Social Psychology Review 2010;14(2):155-95.
5. Epstein RM, Duberstein PR, Fenton JJ, et al. Effect of a Patient-Centered Communication Intervention on Oncologist-Patient Communication, Quality of Life, and Health Care Utilization in Advanced Cancer: The VOICE Randomized Clinical Trial. JAMA oncology 2017;3(1):92-100. doi: 10.1001/jamaoncol.2016.4373 [published Online First: 2016/09/10]
6. Fenton JJ, Duberstein PR, Kravitz RL, et al. Impact of Prognostic Discussions on the Patient-Physician Relationship: Prospective Cohort Study. J Clin Oncol 2018;36(3):225-30. doi: 10.1200/jco.2017.75.6288 [published Online First: 2017/11/18]
7. Tulsky JA, Beach MC, Butow PN, et al. A Research Agenda for Communication Between Health Care Professionals and Patients Living With Serious Illness. JAMA internal medicine 2017;177(9):1361-66. doi: 10.1001/jamainternmed.2017.2005 [published Online First: 2017/07/04]
8. Schoenborn NL, Lee K, Pollack CE, et al. Older adults' views and communication preferences about cancer screening cessation. JAMA internal medicine 2017;177(8):1121-28.
Competing interests: None declared
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Competing Interests: None declared.