State of palliative care services at US cancer centers: An updated national survey

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Abstract

We examined the change in outpatient PC services at US cancer centers over the past decade. Between April and August 2018, we surveyed all National Cancer Institute-designated cancer centers (NCI-CCs) and a random sample of 1252 non-NCI-CCs. Two surveys used previously in a 2009 national study (Hui et al. JAMA 2009) were sent to each institution: a 22-question cancer center executive survey regarding PC infrastructure and attitudes toward PC, and an 82-question PC program leader survey regarding detailed PC structures and processes. Survey findings from 2018 were compared to 2009 data from 101 cancer center executives and 96 PC program leaders. The overall response rate was 140/203 (69%) for the cancer center executive survey and 123/164 (75%) for the PC program leader survey. Among NCI-CCs, a significant increase in outpatient PC clinics was observed between 2009 and 2018 (59% v. 95%; OR=12.3, 95% CI 3.2–48.2; P <.001) with no significant change in inpatient consultation teams (92% v. 90%; P =.71), PC units (26% v. 40%; P =.17), or institution-operated hospices (31% v. 18%; P =.14). Among non-NCI-CCs, there was no significant increase in outpatient PC clinics (22% v. 40%; P =.07), inpatient consultation teams (56% v. 68%; P =.27), PC units (20% v. 18%; P =.76) or institution-operated hospices (42% v. 23%; P =.05). The median interval from outpatient PC referral to death increased significantly, particularly for NCI-CCs (90 d v. 180 d; P =0.01). Despite significant growth in outpatient PC clinics, there remain opportunities for improvement in the structures and processes of PC programs. In this national survey, the proportion of cancer centers with outpatient palliative care increased significantly between 2009 and 2018 among NCI-designated cancer centers (59% v. 95%) but not significantly at non-NCI designated cancer centers (22% v. 40%). Palliative care units remained uncommon and major gaps remain in palliative care clinical programs, particularly non-NCI designated cancer centers.

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Most cited references 24

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Trajectory of performance status and symptom scores for patients with cancer during the last six months of life.

Amna Husain, D Dudgeon, Craig Earle … (2011)

Ontario's cancer system is unique because it has implemented two standardized assessment tools population-wide to improve care: the Edmonton Symptom Assessment System (ESAS) measures severity of nine symptoms (scale 0 to 10; 10 indicates the worst) and the Palliative Performance Scale (PPS) measures performance status (scale 0 to 100; 0 indicates death). This article describes the trajectory of ESAS and PPS scores 6 months before death. Observational cohort study of cancer decedents between 2007 and 2009. Decedents required ≥1 ESAS or PPS assessment in the 6 months before death for inclusion. Outcomes were the decedents' average ESAS and PPS scores per week before death. Ten thousand seven hundred fifty-two (ESAS) and 7,882 (PPS) decedents were included. The mean age was 65 years, half were female, and approximately 75% of assessments occurred in cancer clinics. Average PPS score declined slowly over the 6 months before death, starting at approximately 70 and ending at 40, declining more rapidly in the last month. For ESAS symptoms, average pain, nausea, anxiety, and depression scores remained relatively stable over the 6 months. Conversely, shortness of breath, drowsiness, well-being, lack of appetite, and tiredness increased in severity over time, particularly in the month before death. More than one third of the cohort reported moderate to severe scores (ie, 4 to 10) for most symptoms in the last month of life. In this large outpatient cancer population, trajectories of mean ESAS scores followed two patterns: increasing versus generally flat. The latter was perhaps due to available treatment (eg, prescriptions) for those symptoms. Future research should prioritize addressing symptoms that worsen over time.