Evaluating patient-centered outcomes in palliative care and advanced illness using natural language processing and big data analytics

Patients with serious illnesses such as those diagnosed with advanced cancer often experience disease and treatment burdens and sometimes receive unwanted treatments at the end of life. We explore the extent to which end-of-life care provided to patients is patient-centered or focused on their preferences.

After analyzing data from electronic patient records, we found that healthcare providers were more likely to document information about the patient's symptoms, and less likely to document conversations about the patient's concerns. There were variations across patient groups; providers were more likely to note goals of care and the authorization of a surrogate, or a family member who makes decisions on behalf of the patient, for Christian patients compared to non-Christian patients, and less likely for patients with multiple chronic conditions compared to those with one chronic condition. Documenting the patient’s concerns and symptoms was more likely for married individuals and those with multiple chronic conditions. In patients who died from cancer, 16% received aggressive treatments in the last month of life and 15% received care that did not align with their preferences. Surprisingly, we found that patients without a documented surrogate were less likely to receive aggressive treatments and goal-discordant care compared to those with a surrogate, and patients who were referred to specialist palliative care were more likely to receive aggressive treatments compared to patients without palliative care.

This research illustrates the possibility of assessing patient-centered care using patient records data and highlights end-of-life care variations among patient groups that should be considered to enhance patient-centered care.