Using Patient-Reported Distress to Guide the Timing of Palliative Care Conversations

After presenting research on the use of a patient-reported distress survey to guide the timing of palliative care discussions, lead author Stuart Goldberg, MD, chief scientific officer for Cota, Inc, discussed how it represents a shift in the paradigm of end-of-life (EOL) conversations.

Goldberg told The American Journal of Managed Care^® that his team’s work to develop a patient-centered survey to guide palliative care discussions was partially inspired by one of his experiences as an oncologist. A patient’s daughter once took him aside during a visit to state that this was the only time her father had been out of bed all week, which took Goldberg by surprise as the patient always showed up for his weekly blood transfusions looking well-dressed and mobile.

“He put on a show for me because he didn’t want me to feel that he was giving up,” Goldberg said. “When I asked him, he said he didn’t want to do this anymore, but he felt he would be letting everybody down.”

That experience indicated the need to assess patients’ readiness for palliative care before they undergo unwanted interventions or are admitted to the hospital. In response to this need, Goldberg and his colleagues worked to develop a 7-question survey that can be administered in the waiting room of an oncology practice. Instead of mentioning EOL care, it asks patients broader questions about domains including functional status, pain levels, depressive symptoms, and feelings of being a burden.

Responses to this survey were then used to adjust individual aspects of a patient’s care. For instance, patients who reported being a financial burden on their family were directed to the business office for help creating a payment plan or seeking financial assistance. However, when patients indicated distress in several domains, as measured by scores approaching 30 out of a potential 112 points, Goldberg and his colleagues noted a significant drop in survival.

“That was a sign that things were falling apart in general, and it may be time to have that discussion that it’s time to switch from aggressive treatments to palliative care,” he said.

Results of a pilot study of the tool were outlined in an abstract presented by lead author Goldberg and his colleagues at the American Society of Clinical Oncology annual meeting in May. It analyzed the predictive value of the Living With Cancer tool on overall survival among over 1000 advanced cancer patients. Patients scoring over 28 on the assessment had significantly worse survival at 6 and 12 months than those with lower scores (69% vs 88% at 6 months and 54% vs 73% at 12 months, respectively).

There are other checklists and tools that are used to predict chances of survival among advanced cancer patients, but this one is “taking it from the patient’s voice instead of the medical information,” Goldberg said. Essentially, it uses patient-reported outcomes instead of clinical markers like blood counts to assess readiness for palliative care, which represents a “completely different strategy.”

“We think we flipped the paradigm and can use this to inform physicians when it’s the right time to have that discussion,” Goldberg said.

He also noted that the tool can be used to set benchmarks for physicians and identify those who are lagging. For instance, the researchers observed that 1 oncologist had especially low rates of palliative care referral discussions. The solution was to add a social worker to his team who would interview patients and help facilitate the conversations he had been avoiding.

Having timely palliative care conversations is important not only from an economic standpoint, considering the high costs of hospital admissions and unnecessary interventions like chemotherapy near EOL, but delaying these talks can also be emotionally detrimental for patients and for families who are not given enough time to grieve and accept their death.

Using the results of a patient-reported distress instrument helps prepare patients for the palliative care conversation so it can be delivered at an appropriate time, which also makes the physician’s job easier, according to Goldberg.

“I think the tool tells us when’s the right time, and because we’re talking to the patient at the right time, for me personally as a physician the conversations have gone a lot easier,” he said. “It gives me the ability to do it in a more [patient] friendly way, and I think it’s received better because I’m basically trying to solve their problems as opposed to imposing my will on them.”