A survey study documented slow progress in the advancement of palliative care programs and emphasized that access to timely palliative care continues to be a challenge for patients with cancer, especially those at non-National Cancer Institute cancer centers.
Despite significant developments in outpatient palliative care clinics, there remains opportunities for improvement in the structures and processes of palliative care programs, according to a survey study published in Cancer.
The survey documented slow progress in the advancement of palliative care programs and emphasized that access to timely palliative care continues to be a challenge for patients with cancer, especially those at non-National Cancer Institute (NCI) cancer centers.
“In comparison with a decade ago, there has been an increase in outpatient palliative care services at cancer centers,” the authors wrote. “However, this expansion has been heterogeneous and mostly concentrated at NCI-designated cancer centers. The growth in inpatients PCUs remains stagnant. This survey highlights significant gaps in the delivery of palliative cancer care and opportunities for further improvement.”
Between April and August 2018, researchers surveyed all NCI-designated cancer centers and a random sample of 1,252 non-NCI-designated cancer centers. Two previously used surveys from a 2009 national study were sent two each institution; a 22-question cancer center executive survey regarding palliative care infrastructure and attitudes toward palliative care and an 82-question palliative care program leader survey regarding detailed palliative care structures and processes. The survey findings were then compared with the 2009 data from 101 cancer center executives and 96 palliative care program leaders.
The overall response rate was 69% (140 of 203) for the cancer center executive survey and 75% (123 of 164) for the palliative care program leader survey. Among NCI-designated cancer centers, a significant increase in outpatient palliative care clinics was shown between 2009 and 2018 (59% vs 95%; odds ratio, 12.3; 95% CI, 3.2-48.2; P < 0.001) with no significant changes in inpatient consultation teams (92% vs 90%; P = 0.71), palliative care units (PCUs; 26% vs 40%; P = 0.17), or institution-operated hospices (31% vs 18%; P = 0.14).
Among the non-NCI-designated cancer centers, there was no significant increase observed in outpatient palliative care clinics (22% vs 40%; P = 0.07), inpatient consultation teams (56% vs 68%; P = 0.27), PCUs (20% vs 18%; P = 0.76), or institution-operated hospices (42% vs 23%; P = 0.05). Moreover, the median interval from outpatient palliative care referral to death increased significantly, particularly for NCI-designated cancer centers (90 vs 180 days; P = 0.01).
“The paucity of PCUs means that patients with cancer suffering from severe distress in the last days of life may not have access to the most comprehensive form of end-of-life care,” the authors wrote. “Furthermore, PCUs have an important role in conducting research to advance care in the last days of life; their relative absence significantly impedes scientific progress in this area.”
Additionally, an area in need of further improvement remains the timing of referral. Although the optimal timing continues to be a subject of debate, an international consensus panel recommended a time frame of at least 6 months before death. With this, the researchers suggested that standardized criteria, in combination with systematic distress screening and automatic referral, may facilitate timely access to palliative care for more patients.
Notably, although a higher threshold was applied for statistical significance, researchers indicated that these findings should be interpreted with caution and considered as hypothesis generating.
“Data from this survey may help national health organizations to formulate policies, hospital administrators to benchmark their programs and allocate appropriate resources, and oncology and palliative care teams to develop quality improvement projects,” the authors wrote. “With greater resources to support clinical programs, education, and research, we hope to achieve the American Society of Clinical Oncology’s vision of full integration of palliative care as a routine part of comprehensive cancer care.”
Hui D, De La Rosa A, Chen J, et al. State of Palliative Care Services at US Cancer Centers: An Updated National Survey. Cancer. doi:10.1002/cncr32738.