Prognostic Awareness Reported as Low as 16% Among Cancer Patients

As patients approach end of life, treatment tradeoffs make high-quality communication increasingly important. Unfortunately, effectively communicating a survival prognosis is much more than clearly stating the data. Multiple studies describe pervasive prognostic discordance between doctors and patients.^1-8 The challenging nature of this communication is well-documented. For instance, Kutner and colleagues found that 100% of patients wanted their clinicians to be honest with them, while 91% of the same patients wanted their clinicians to be optimistic.⁹ Terri Fried, MD and colleagues reported that nearly half of patients did not recall a prognostic conversation despite that conversation being documented in the patient record.⁷

Is it important that patients have an accurate understanding of their survival prognosis? Research suggests yes. Seventy percent of patients prefer to have increasing support for quality of life near the end of life — a decision that would require a realistic prognostic understanding.² Surveys show that prognostic disclosure does not negatively affect the doctor-patient relationship or the patient’s emotional well-being. On the contrary, prognostic disclosure correlates indirectly with higher quality of life for patients and better emotional status for family, largely through improved hospice utilization.¹⁰

Unfortunately, despite the importance of prognostic awareness, concordance rates between doctors and their patients appear quite low. In Europe, Loučka et al. conducted three interviews over nine months with each of 134 cancer patients with a prognosis of one year.¹ These patients were seen by a total of 21 oncologists. While 58% of patients were partially aware of their prognosis, only 16% reported accurate prognostic awareness. Separately, Gramling and his fellow researchers surveyed 236 patients and their 38 doctors from different academic and community treatment centers in California and New York.² All patients had stage IV nonhematologic cancer or stage III cancer and an oncologist who “would not be surprised” if the patient died in 12 months. They found that 61% of these patients had an unintentional prognostic discrepancy with doctors. Overall, 68% of these patients believed in a prognosis different from the doctor’s opinion, but 11% of them knowingly differed from the doctor. As is common in prognostic discordance, patients were more optimistic than their doctors in 96% of discrepancies.

Further complicating the issue of prognostic awareness has been the consistent inability to detect causal or even correlative factors in prognostic discordance. None of these shows a correlation: income, education, gender, spirituality, concordance of family caregiver beliefs, confidence with patient-physician communication, recalled extent of prognosis communication (by doctor or patient), the doctor’s perceived end-of-life communication skills, or study site.

Knowing that prognostic awareness is important and likely lacking, how can clinicians overcome prognostic discordance? The Ask-Tell-Ask method of prognostic disclosure is commonly endorsed.¹¹ With this approach, doctors ask a patient about their prognostic belief, ask their information preferences, tell the patient what they want to know, and then ask the patient their current understanding. Separately, new research found numeric disclosure to be more effective than non-numerical estimates (for example: “months to years”) and communication about unpredictability. ¹² An example of numeric disclosure would be sharing the mean survival time in months. A third enhancement with a long history of discussion is sitting by a patient’s bedside to discuss rather than standing.¹³ In addition to very strong patient trust benefits, research recently found patients 9% more likely to correctly identify their reason for hospitalization when the doctor sat. This has not been tested in a hospice setting.

Frankly, the scientific literature has underscored the importance of prognostic awareness and documented its scarcity, yet offered no definitive solutions. While approaches such as Ask-Tell-Ask, clear numeric disclosure, and creating a more comfortable setting show promise, none stand as proven remedies. At present, recognizing the pervasiveness of prognostic discordance and applying individualized strategies — with repeated opportunities to revisit the discussion — appear to be the most practical path toward improving prognostic awareness.

Avatar Home Health and Hospice – The Buck Stops Here

At Avatar, we understand that communication challenges at end of life don’t stop with prognosis — they continue through care transitions. When physicians refer patients to hospice, our clinicians see themselves as extensions of the referring provider’s communication and care plan. We reinforce key messages about goals of care, ensuring patients and families maintain realistic expectations and emotional support consistent with the physician’s intent.

Referring doctors and their staff have direct access to the local owners of Avatar, with no corporate layers and no delays. Independent and locally owned since 2006, Avatar Home Health and Hospice prioritizes continuity, responsiveness, and clinical excellence rooted in our community. Our goal is simple: to deliver outstanding home health and hospice care in full concordance with the orders, philosophy, and expectations of our referring physicians and case managers.

When you encounter patients who could benefit from repeated nursing, rehab at home, or quality-focused hospice support, please remember Avatar Home Health and Hospice.

References

1. Loučka M, Vlčková K, Tučková A, Poláková K, Houska A, Matějů M, Donátová Z. Prognostic awareness in advanced cancer patients and their caregivers: a longitudinal cohort study. Psycho‐Oncology. 2021 Sep;30(9):1449-56.
2. Gramling R, Fiscella K, Xing G, Hoerger M, Duberstein P, Plumb S, Mohile S, Fenton JJ, Tancredi DJ, Kravitz RL, Epstein RM. Determinants of patient-oncologist prognostic discordance in advanced cancer. JAMA Oncology. 2016 Nov 1;2(11):1421-6.
3. Enzinger AC, Zhang B, Schrag D, Prigerson HG. Outcomes of prognostic disclosure: associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. Journal of Clinical Oncology. 2015 Nov 10;33(32):3809.
4. Liu PH, Landrum MB, Weeks JC, Huskamp HA, Kahn KL, He Y, Mack JW, Keating NL. Physicians’ propensity to discuss prognosis is associated with patients’ awareness of prognosis for metastatic cancers. Journal of Palliative Medicine. 2014 Jun 1;17(6):673-82.
5. Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL, Schrag D. Patients’ expectations about effects of chemotherapy for advanced cancer. New England Journal of Medicine. 2012 Oct 25;367(17):1616-25.
6. Temel JS, Greer JA, Admane S, Gallagher ER, Jackson VA, Lynch TJ, Lennes IT, Dahlin CM, Pirl WF. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non–small-cell lung cancer: Results of a randomized study of early palliative care. Journal of Clinical Oncology. 2011 May 9;29(17):2319-26.
7. Fried T, Bradley E, O’Leary J. Prognosis communication in serious illness: Perceptions of older patients, caregivers, and clinicians. Journal of the American Geriatric Society. 2003; 51 (10): 1398-1403.
8. Weeks JC, Cook EF, O’Day SJ, Peterson LM, Wenger N, Reding D, Harrell FE, Kussin P, Dawson NV, Connors Jr AF, Lynn J. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA. 1998 Jun 3;279(21):1709-14.
9. Kutner J, Steiner J, Corbett K, et al. Information needs in terminal illness. Soc Sci Med; 1999: 48: 1341-1352.
10. Wright A, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008; 300 (14): 1665-73.
11. Isaac M, Curtis Improving quality of life for patients with terminal respiratory disease. Expert Review of Respiratory Medicine. 2009; 3 (6): 597-605.
12. van der Velden NC, Smets EM, van Vliet LM, Brom L, van Laarhoven HW, Henselmans I. Effects of prognostic communication strategies on prognostic perceptions, treatment decisions and end-of-life anticipation in advanced cancer: An experimental study among analogue patients. Journal of Pain and Symptom Management. 2024 Jun 1;67(6):478-89.
13. Iyer R, Park D, Kim J, Newman C, Young A, Sumarsono A. Effect of chair placement on physicians’ behavior and patients’ satisfaction: randomized deception trial. BMJ. 2023 Dec 15;383.