A portion of my previous job was taking care of hospitalized Oncology patients. They got their routine care at a major Cancer Center at a referral hospital. When they ran into a need for emergency care, they often came to the suburban hospital. I ended up taking care of them during that admission. A majority of them had stage 4 Cancer, and had had multiple rounds of treatments. A number of them appeared to be terminally ill, and I would start a conversation about End of Life issues. I asked them what they understood their prognosis to be, and what they had been told about it. They looked at me as if I had two heads, and said they had no idea that we may not be able to fight their disease much longer. I was very discouraged at the level of communication about life expectancy, which to me is a critical component of treatment decisions.
This study published in the October 2015 issue of the Journal of Clinical Oncology validates my concerns. Certainly, patients do not remember everything that we tell them, and there is a mismatch between the percentage of patients and physicians who recall having this conversation. But both numbers are abysmally low. Since critical decisions are made depending on the patient’s understanding of life expectancy, it behooves us to ensure adequate communication on this issue. They can then make truly informed consent to the next line of therapy. These conversations may not be comfortable, but they are our duty as oncologists. And, according to this study, having this conversation did not worsen the anxiety or sadness levels or worsen the physician-patient relationship.
Outcomes of Prognostic Disclosure: Associations With Prognostic Understanding, Distress, and Relationship With Physician Among Patients With Advanced Cancer by Andrea C. Enzinger, Baohui Zhang, Deborah Schrag and Holly G. Prigerson⇑
Presented in part at the 49th Annual Meeting of the American Society of Clinical Oncology, Chicago, IL, May 31-June 4, 2013.
“Results Among this cohort of 590 patients with advanced cancer (median survival, 5.4 months), 71% wanted to be told their LE, but only 17.6% recalled a prognostic disclosure by their physician. Among the 299 (51%) of 590 patients willing to estimate their LE, those who recalled prognostic disclosure offered more realistic estimates as compared with patients who did not (median, 12 months; interquartile range, 6 to 36 months v 48 months; interquartile range, 12 to 180 months; P < .001), and their estimates were less likely to differ from their actual survival by > 2 (30.2% v 49.2%; odds ratio [OR], 0.45; 95% CI, 0.14 to 0.82) or 5 years (9.5% v 35.5%; OR, 0.19; 95% CI, 0.08 to 0.47). In adjusted analyses, recall of prognostic disclosure was associated with a 17.2-month decrease (95% CI, 6.2 to 28.2 months) in patients' LE self-estimates. Longer LE self-estimates were associated with lower likelihood of do-not-resuscitate order (adjusted OR, 0.439; 95% CI, 0.296 to 0.630 per 12-month increase in estimate) and preference for life-prolonging over comfort-oriented care (adjusted OR, 1.493; 95% CI, 1.091 to 1.939). Prognostic disclosure was not associated with worse patient-physician relationship ratings, sadness, or anxiety in adjusted analyses. “
Conclusion Prognostic disclosures are associated with more realistic patient expectations of LE, without decrements to their emotional well-being or the patient-physician relationship.