Journal of Pain and Symptom Management

Numeric Prognostic Disclosure
Improves Understanding

But What About Hope?

Despite the fact that most patients want to know their prognosis, studies continue to show a high prevalence of inaccurate prognostic perceptions among patients.¹ This is important as suboptimal prognostic communication may lead to treatment decisions a patient would not have made if fully aware or informed, late adoption of palliative care, and lower quality of life.² In  a recent paper, Dr. van der Velden and colleagues describe evidenced-based guidance for communicating prognosis as “scarce.”³

Their study, now published in the Journal of Pain and Symptom Management, serves to fill that gap. They showed videos of various consultation enactments for advanced terminal diseases to analogue patients, and then they surveyed the analogue patients about their perception of the prognosis. They studied three general types of disclosure: disclosure, communication of unpredictability, and non-disclosure. They additionally studied three types of disclosure: numerical disclosure such as communicating a mean survival time in months, non-numerical estimates such as “months to a few years,” and framing which involved comparing three sets of best-case to worst-case scenarios for the same patient. All patients were informed that their condition was incurable.

Of the various forms of prognostic disclosure, numeric prognostic disclosure best prepared patients to correctly report the likelihood of dying in one year, with and without treatment. Non-numeric prognostic disclosure led to an increased preference for life-extending, non-curative chemotherapy, but numeric prognostic disclosure did not. Compared to communicating unpredictability and non-disclosure, prognostic disclosure led to higher patient confidence in their treatment decisions. Interestingly, the outcomes of prognostic disclosure methods were not affected by the measured patient characteristics including: education, uncertainty tolerance, and attitudes toward striving for length of life.

Dr. van der Velden and colleagues rightly noted the study limitation that these were analogue patients. While the study can provide evidence about the effectiveness of different techniques in creating understanding, it does not address the common question of hope. The concern about hope refers to emotional distress and protecting quality of life at the end of life.

However, these issues have been addressed in two studies published in the Journal of the American Medical Association and the Journal of Clinical Oncology, respectively. Who received end-of-life discussions seemed to depend on which facility delivered their care more than on any patient-specific variable such as cancer type, religion, sociodemographic characteristics, etc. End-of-life discussions were not directly related to patient reports of feeling “depressed,” “sad,” “terrified,” or “worried.” Likewise, these discussions were not associated with meeting any DSM-IV criteria for a mental disorder. In short, end-of-life discussions had no direct effect, positive or negative, on the patient’s emotions. On the other hand, end-of-life discussions had very positive, indirect effects on patient quality of life.

Patients who report receiving the end-of-life discussion prove much less likely to elect “aggressive” treatments and much more likely to enroll in hospice for longer than one week. Patient quality of life decreased with increasing numbers of aggressive medical therapies. For instance, on the 36-item Medical Outcome Study Short-Form Health Survey, patients who received no aggressive care had a mean quality of life score 39% higher than patients who had three or more aggressive therapies. Patient quality of life increased with longer enrollment in hospice. Patients who received hospice care for two months or more had a health-related quality of life that was 23% higher than patients who did not receive hospice or who received hospice for a week or less. Furthermore, multiple caregiver bereavement outcomes showed a direct and important relationship with the patient’s quality of life scores. Patient-reported end-of-life discussions show an indirect but strongly positive effect on patient quality of life and caregiver bereavement outcomes by influencing the patient’s ability to choose the best care options for him or her.

For physicians, the takeaway is clear: honest prognostic disclosure, especially numeric when appropriate, can improve understanding without diminishing hope, and it can help patients make choices that protect quality of life. Avatar Home Health & Hospice supports this kind of care coordination by responding quickly to referrals, guiding patients and families through goals-of-care conversations, and helping eligible patients transition smoothly into hospice when comfort becomes the priority. If you have a patient who may benefit from home health, palliative support, or hospice, Avatar is ready to partner with your team and provide compassionate, timely care throughout the Greater Houston Metro.

Avatar – Big Enough to Serve, Small Enough to Care

With nearly two decades of hospice and home health service to the Houston Metro, this locally owned healthcare agency has grown to be more than 150 caring professionals strong. Yet, every patient still has direct access to the agency owner. Now, just as in our first month of operation, every patient is made to feel welcome, included, heard, and valued. Please remember Avatar for your home health and hospice referrals.

References

1. Butow PN, Clayton JM, Epstein RM. Prognostic awareness in adult oncology and palliative care. Journal of Clinical Oncology. 2020 Mar 20;38(9):877-84.
2. 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):3809-16.
3. 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.
4. 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):3809-16.
5. 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.