Defining the Elements of Early Palliative Care That Are Associated With Patient-Reported Outcomes and the Delivery of End-of-Life Care

Abstract

Purpose We describe the key elements of early palliative care (PC) across the illness trajectory and examine whether visit content was associated with patient-reported outcomes and end-of-life care. Methods We performed a secondary analysis of patients with newly diagnosed advanced lung or noncolorectal GI cancer (N = 171) who were randomly assigned to receive early PC. Participants attended at least monthly visits with board-certified PC physicians and advanced practice nurses at Massachusetts General Hospital. PC clinicians completed surveys documenting visit content after each encounter. Patients reported quality of life (Functional Assessment of Cancer Therapy-General) and mood (Hospital Anxiety and Depression Scale and Patient Health Questionnaire-9) at baseline and 24 weeks. End-of-life care data were abstracted from the electronic health record. We summarized visit content over time and used linear and logistic regression to identify whether the proportion of visits addressing a content area was associated with patient-reported outcomes and end-of-life care. Results We analyzed data from 2,921 PC visits, most of which addressed coping (64.2%) and symptom management (74.5%). By 24 weeks, patients who had a higher proportion of visits that addressed coping experienced improved quality of life ( P = .02) and depression symptoms (Depression subscale of the Hospital Anxiety and Depression Scale, P = .002; Patient Health Questionnaire-9, P = .004). Patients who had a higher proportion of visits address treatment decisions were less likely to initiate chemotherapy ( P = .02) or be hospitalized ( P = .005) in the 60 days before death. Patients who had a higher proportion of visits addressing advance care planning were more likely to use hospice ( P = .03). Conclusion PC clinicians' focus on coping, treatment decisions, and advance care planning is associated with improved patient outcomes. These data define the key elements of early PC to enable dissemination of the integrated care model.

Trial registration: ClinicalTrials.gov NCT01401907.

Fig 1.

Content of palliative care (PC) visits across the illness trajectory. PC clinicians recorded the content they addressed after each visit. Reported proportions for the final three visits are restricted to decedents. Reported proportions for the initial three visits exclude visits that were also among the final three visits. Reported proportions for middle visits represent averages across all available middle visits. Relative to the initial three visits, the final three visits increasingly addressed treatment decisions (P < .001), advance care planning (P < .001), and disposition (P < .001), but decreasingly addressed rapport (P < .001) and illness understanding (P < .001).

Fig 2.

Symptom management and coping support across the illness trajectory. (A) Over time, symptom management focused increasingly on pain (P < .001), dyspnea (P < .001), and delirium (P < .001) but less on nausea (P = .009). (B) Coping support shifted from behavioral coping strategies (P < .001) toward increased coping counseling (P = .04).

Fig A1.

Flow diagram.