A prospective cohort study of patients with terminal illness showed that when faced with the decision of either continuing potentially curative or life-prolonging treatment or of initiating end-of-life hospice care, patients may experience better satisfaction with their care and treatment choices if they use a regret-based decision model to clarify their preferences.
“The decision process in [these] situations is heavily affected by emotions, chief among them is regret,” the researchers, led by Benjamin Djulbegovic, MD, PhD, from the Departments of Hematology and Health Outcomes & Behavior at the H. Lee Moffitt Cancer Center & Research Institute in Tampa, Florida, said, explaining the choice to focus on regret in their decision model. “Modern cognitive science increasingly accepts a dual-processing approach to human cognition that takes into account both emotion-based and analytical-based cognitive processing. Because regret is a human emotion that involves counterfactual deliberations, we propose that it can activate both cognitive domains by serving as a link between [emotion- and analytical-based] processes.”
Dr. Djulbegovic and authors assessed 178 adult patients with a terminal disease seen at the Tampa General Hospital and the Moffitt Cancer Center between March 2013 and December 2015 to determine if a decision model based on regret would help patients clarify their end-of-life preferences and facilitate decisions about hospice.
The study had four parts:
- The patient’s probability of survival at six months was calculated, then communicated to patients in three forms (as a percentage, in a pictorial model, and as life expectancy in days).
- Patient preferences for continuing treatment versus accepting hospice care were elicited.
- Researchers determined the threshold at which each patient was likely to be indifferent to either choice. This threshold was then contrasted against the previously estimated survival probability to suggest a patient-specific management plan, which was later compared with the patient’s actual choice.
- Each patient was asked a series of qualitative questions to evaluate the usefulness of the regret-based decision model in the hospice referral process.
The majority of patients reported that the information provided by the model in step 2 was helpful (96%; n=171/178) and stated that it would influence their care decision (90%; n=160/178).
The model was also “descriptively and predictively valid,” the researchers wrote. Most patients (85%; n=151/178) agreed with the model’s recommendations (provided in step 3) to either accept hospice care or continue with current treatment (p<0.000001), and the regret-based model predicted the actual choices for 72 percent of patients (n=128/178; p<0.00001).
Patients’ initial inclination to choose hospice referral and the decision model’s recommendation of hospice (rather than continuing treatment) were the two factors with the strongest predictive probability (~98%) of patients choosing end-of-life hospice care. Other factors (including age, gender, race, education status, and pain level) had no effect on patients’ actual treatment choices.
“We found that people suffering from a terminal disease who are initially inclined to choose hospice and do not regret such a choice will select hospice care with a high level of certainty,” Dr. Djulbegovic said.
Djulbegovic B, Tsalatsanis A, Mhaskar R, et al. Improving hospice referral: application of regret-based decision modeling at end-of-life care. Abstract #535. Presented at the 2016 ASH Annual Meeting, December 4, 2016; San Diego, California.