WASHINGTON — Due partly to a lack of outpatient access to palliative care, cancer patients are being referred too late in their disease process to benefit from the quality of life–enhancing therapies and supportive care available to them through such programs, according to a new study.
Palliative care referrals “are a little too limited and a little too late,” Dr. David Hui said at a press briefing sponsored by the Journal of the American Medical Association.
He and his colleagues from the University of Texas M.D. Anderson Cancer Center, Houston, and the National Cancer Institute (NCI) in Bethesda, Md., surveyed cancer center executives and palliative care program leaders at 142 cancer centers to determine the state of palliative care in the United States. They compared availability and integration of palliative care at 71 NCI-designated cancer centers with 71 non-NCI centers (JAMA 2010;303:1054-61).
To show just how few patients are referred to palliative care—outpatient services, in particular—Dr. Hui said that there are a median 833 outpatient visits per year at NCI-designated centers, but only a median 14 referrals.
The survey showed how little palliative care has changed in the last 10 years, he said. There is little standardization of care, and less than half of palliative care programs had an outpatient clinic, a specialized palliative care unit, or a hospice.
“The relative lack of outpatient clinics can be a barrier,” said Dr. Hui. Oncology is primarily provided in the outpatient setting. Outpatient palliative care clinics could help integrate palliation earlier in the disease process, he and his colleagues wrote. Delayed referral has been shown to limit the effectiveness of palliation, according to the authors.
And yet, in their survey, the researchers found that the median time from referral to palliation to death was 7 days for inpatient teams and 90 days for outpatient teams.
“Seven days doesn't allow us to do a lot for the patient,” said Dr. Hui at the briefing. While 90 days was better, it was still likely not early enough to provide services that patients needed, he said.
Dr. Hui acknowledged that lack of referrals and delays might be because the term “palliative care” often had a negative connotation for physicians and patients. He said there had been some move to find terminology that indicated supportive, rather than end-of-life care.
Many professional societies have been calling for earlier introduction to palliation, and the American Society of Clinical Oncology (ASCO) is urging full integration of palliative care into comprehensive cancer care by 2020.
The NCI-designated centers were statistically more likely to have a palliative care program, and also to have dedicated outpatient programs. Fifty of the 51 NCI-designated centers had an active palliative care program, while 39 of the 50 non-NCI centers had an active program. NCI centers were also significantly more likely to have a dedicated palliative care physician and a multidisciplinary inpatient consultation team.
According to the palliative care program leaders who were surveyed, palliative care has existed for longer at NCI centers. But the leaders themselves are not necessarily rooted in palliative care. Only a third said they had a professional background in palliative care. Board certification in palliative care was not a requirement for physicians or nurses at most programs, but was more commonly required at NCI centers.
Executives were asked about perceived and real barriers to establishing palliative care programs and to more fully integrating them into the comprehensive cancer care continuum. The most commonly cited reasons were poor reimbursement and limited institutional resources. But the executives also gave their programs high ratings and said that palliative care services were much improved from 5 years ago.
The cancer center executives were also supportive of full integration, more so at NCI-designated centers. Although executives supported the concept, they were less willing to hire more physicians and nurses, or fund more palliative care beds, Dr. Hui said.
For palliative care to grow, more training and educational opportunities are essential, he said. Dr. Hui and his fellow authors noted the “troublesome finding” in their study that less than half of the cancer centers offer palliative care fellowships or mandatory palliative care rotations for medical oncology fellows.
Disclosures: Dr. Hui reported no conflicts of interest.
National Cancer Institute–designated centers were more likely to have a palliative care program.
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