Among the 140 executive surveys sent, we had 89 (63%) complete responses, 12 (8%) partial responses, 40 (28%) implicit refusals and 1 (1%) explicit refusal. The response rate was 101/140 (72%), and did not differ by cancer center type (NCI vs. non-NCI) nor whether the center had a palliative care program based on independent phone verification.
Among the 120 palliative care program leader surveys sent, the number of complete responses, partial responses, implicit refusals, explicit refusals and ineligible cases were 86 (72%), 10 (8%), 21 (15%), 0 (0%) and 3 (2%), respectively. The response rate was 96/117 (82%). Palliative care program leaders from NCI cancer centers were more likely than those from non-NCI centers to respond (61/67 (91%) vs. 35/50 (70%), p=0.007).
We did not detect any differences in CoC center type between the non-NCI cancer centers that were surveyed and those not surveyed (p=0.98).
Perceived Barriers and Attitudes towards Palliative Care
The barriers to delivery of palliative care identified by cancer center executives are shown in . Poor reimbursement and limited institutional resources were the most commonly cited reasons. A small number of executives were concerned that the presence of palliative care could negatively affect their hospital mortality rate and national rating.
Perceived Barriers to Palliative Care Access According to Cancer Center Executives
Cancer center executives rated their current pain and palliative care services favorably, and reported a significant improvement compared to 5 years ago (). Importantly, they strongly agreed that further integration of palliative care services into oncology practice will benefit patients, and that more funding should be directed toward palliative care research (). NCI cancer center executives were significantly more likely than their non-NCI cancer center counterparts to agree with an increase in palliative care resources at their institutions over the next 5 years.
Availability of Palliative Care Programs
A majority of responding cancer center executives reported an active palliative care program (). Compared to non-NCI cancer centers, NCI-designated cancer centers were significantly more likely to provide palliative care services, to have at least one palliative care physician, an inpatient consultation team and an outpatient clinic. Fewer centers had dedicated acute palliative care beds or an institution-operated hospice.
Availability of Palliative Care Programs According to Cancer Center Executives
Palliative Care Clinical Services
provides an overview of existing palliative care programs based on information provided by palliative care program leaders, including the range of services and personnel. Palliative care services have been in place at NCI cancer centers longer than at non-NCI cancer centers. Importantly, a majority of programs reported a short patient follow-up duration of less than 1 month.
Palliative Care Program Characteristics According to Palliative Care Program Leaders
While most palliative care teams had physicians (80%, 95% confidence interval (CI) 71–88%), mid-level providers (71%, 95% CI 62–80%), social workers (55%, 95% CI 45–65 %) and nurses (47%, 95% CI 37–58%), other healthcare professions were present in fewer than half of the cancer centers surveyed. Only one-third of palliative care program leaders identified their professional background as palliative care (). Board certification was not a requirement for physicians or nurses in a majority of programs ().
provides further information about the structures and processes for the four main branches of palliative care services, including inpatient consultation teams, outpatient clinics, PCUs and institution-operated hospices. Inpatient consultation teams were not only the most common service, but also served a larger proportion of patients than PCUs and outpatient clinics. Importantly, the median duration from referral to death was 7 days (N=49, interquartile range 4–16 days) for inpatient consultation teams, 7 days (N=8, interquartile range 5–10 days) for palliative care units, and 90 days (N=11, interquartile range 30–120 days) for outpatient clinics. Notably, a large minority of programs with an outpatient clinic reported that they see patients in oncology clinics.
Structure and Processes of Palliative Care Clinical Services, Education and Research in Cancer Centers According to Palliative Care Program Leaders
The inpatient consultation teams, outpatient clinics and PCUs were generally larger and served more patients at NCI cancer centers than at non-NCI cancer centers (). In contrast, NCI cancer centers were less likely to report an institution-operated hospice than non-NCI cancer centers, and had a smaller median daily hospice census.
Palliative Care Education
NCI cancer centers were more likely than non-NCI cancer centers to offer a palliative care fellowship program (). The fellowship programs were generally small, with few having five or more clinical fellows, and even fewer with research fellowships. Almost half of the responding programs provided training for mid-level providers. In NCI cancer centers, palliative care was a mandatory rotation for oncology fellows in a minority of programs ().
Palliative Care Research
provides information regarding the availability of palliative care research programs and funding sources. Less than half of the respondents had research programs in place, even for NCI cancer centers.