End-of-Life Dashboard Drives Transformation With Actionable Personalized Data

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A NUMBER OF STUDIES from the palliative care literature have shown that nonbeneficial health-care interventions actually may harm patients’ quality of life, increase patient and caregiver distress, and drive costs. Yet, according to the National Cancer Institute, about 30% of all cancer spending still occurs in the last year of life. Why are these patterns of care still common when they’re clearly not ideal?

Kerin B. Adelson, MD

Kerin B. Adelson, MD

According to Kerin B. Adelson, MD, it’s because health-care measures have been focused on the wrong things. As Dr. Adelson reported at the 2018 ASCO Quality Care Symposium, clinicians have traditionally evaluated what’s easy to measure—process measures— when the outcome measure is often much more difficult to obtain.1

“Change is not driven by measuring what is easy; it occurs when we decide what matters and then study how to measure it,” said Dr. Adelson, Associate Professor, Chief Quality Officer, and Deputy Chief Medical Officer of Smilow Cancer Hospital at Yale-New Haven. “It’s actually incredibly hard to characterize what goes on between a doctor and a patient and to know who practices how, other than from anecdotal experience between colleagues…. However, if we are going to change our patterns of care, we really need to understand them first.”

To transform a culture of aggressive end-of-life care at Yale, Dr. Adelson and colleagues aimed to do just that. By extracting massive amounts of data from the electronic health record (EHR) and working with their tumor registry, they learned how many patients actually received different forms of aggressive care in their last 30 days of life and found that their rates were nearly identical to those reported in the literature.2

“We confirmed that we had high rates of hospital admission and emergency department presentation, patients admitted to the intensive care unit [ICU], and those receiving chemotherapy in the last month of life,” said Dr. Adelson. “But the manual process was incredibly time-consuming and static. It did not provide any opportunity to give personalized feedback to the doctors who are actually delivering the care.”

Extracting Meaning From EHR Data

AFTER COMMITTING to participate in the Oncology Care Model, led by the Centers for Medicare and Medicaid Innovation, Dr. Adelson and colleagues realized that they needed to have better measurement if they were going to drive change. So, they partnered with Flatiron Health, a health-care technology and services company that organizes EHR data to extract meaning, to develop an electronic platform that provides physicians with feedback on their own end-of-life care practices.

“Knowing that patients see many different providers across the health system, Flatiron performed elaborate mapping to consistently attribute patients to individual providers and physicians, whether advanced practice providers or the physicians they work with, and, ultimately, to a disease team or one of the community practices where they spend their time,” said Dr. Adelson.

The end result is a dashboard that measures the rates of chemotherapy, hospital admissions, and ICU use at the end of life. As Dr. Adelson explained, every quarter, the dashboard goes out to each physician, providing feedback on individual performance with benchmarks against immediate collaborators, averages of the main academic campus, and even community practices. Most important, she said, the actual patients who drive the numerator are listed on the report.

“I would argue that the specific patient information is an incident learning system,” she said. “Every quarter, physicians are seeing which patients they gave chemotherapy to at the end of life…. The dashboard allows doctors to reflect, in an ongoing and personalized way, on how they actually care for patients.”

Driving Goals-of-Care Conversations

“Even though we pride ourselves on being a data-driven specialty, the truth is individual anecdotes are much more memorable than any graphs.”
— Kerin B. Adelson, MD

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ALTHOUGH THE end-of-life dashboard is undoubtedly effective, Dr. Adelson and colleagues (Drs. Anne Chiang and Jennifer Kapo) suspected that transparency alone was not enough to reduce end-of-life chemotherapy. In addition, the clinicians needed to improve physician communication skills to drive goals-of-care conversations.

“I would argue that the goals-of-care conversation is the lowest-cost and highest-value intervention in all of medicine,” said Dr. Adelson. “It has the most impact on downstream care received.”

So, along with designing the end-of-life dashboard, Dr. Adelson and colleagues hired an “army” of care managers, implemented clinical pathways, and opened an urgent care center to keep patients out of the emergency department. The results, she added, show substantially improved rates of hospital admissions and emergency department utilization as well as an increased number of patients going to hospice. These improvements in Oncology Care Model–based claim measures qualified Smilow for a substantial performance-based payment.

Future Research

AS DR. ADELSON reported, future research should identify patients who are unlikely to benefit from aggressive care and whether performance reporting to oncologists will reduce futile interventions. However, there is clearly a pressing need for change: anticancer therapy in the last 30 days of life predicts higher downstream health-care interventions and dramatically increases the cost of care. As a continuous and personalized quality measure, said Dr. Adelson, the dashboard offers the tremendous potential to impact overall cost and patterns of care. To be truly effective, however, the data still require a human touch.

“If we’re asking doctors to change, we have to sit down with them, review how they’re doing, and find out what we can do to help,” Dr. Adelson concluded. “And data must drill down to the patient level, because even though we pride ourselves on being a data-driven specialty, the truth is individual anecdotes are much more memorable than any graphs.” ■

DISCLOSURE: Dr. Adelson has received research funding from Genentech/Roche; honoraria from Genentech; reimbursement for travel and accommodations from Genentech/Roche, Heron Therapeutics, and Celgene; and consulting fees from Heron Therapeutics and Celgene.


1. Adelson KB: Quality measurement: If you aim at nothing, you’ll hit it every time. 2018 ASCO Quality Care Symposium. Presented September 28, 2018.

2. Teno JM, Gozalo PL, Bynum JP, et al: Change in end-of-life care for Medicare beneficiaries. JAMA 309:470-477, 2013.