Survey Shows Palliative Care Widely Available in US, But Gaps Still Exist

Maria Sgambati, MD

March 18, 2010

March 18, 2010 (Washington, DC) — Palliative-care programs are widely available in cancer centers across the United States, but the scope and utilization of these services varies widely. These findings from a new survey, published in the March 17 issue of the Journal of the American Medical Association, were reported here at a special press briefing to highlight this issue of the journal, which focuses on cancer.

The study evaluated palliative-care services and programs at cancer centers that were and were not funded by the National Cancer Institute (NCI). Although palliative-care programs were found at both types of centers, nearly all of the NCI centers had a program, compared with approximately three quarters of non-NCI cancer centers (98% vs 78%; P = .002). These findings represent a fairly striking change in recent years; in terms of available pain and palliative-care services, all cancer-center executives reported significant changes in program effectiveness over the past 5 years.

"I think overall the message from this study is a hopeful one," said David Hui, MD, MSc, from the Department of Palliative Care and Rehabilitation Medicine at the University of Texas MD Anderson Cancer Center in Houston, and lead author on the study.

Approached for independent comment, Diane Meier, MD, FACP, who is the director of both the Center to Advance Palliative Care and the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine in New York City, said that she agrees. "I was very gratified by the results of this study, which demonstrate the dramatic improvements over the past 5 years in terms of the integration and penetration of palliative-care services at our nation's cancer centers," Dr. Meier told Medscape Oncology.

"The exponential growth of this field has been almost entirely due to the injection of philanthropic funding for palliative-care activities, such as program development, training, and research. " she added.

Data Collected in Survey

To gather the data, Dr. Hui and colleagues developed a survey that was given to cancer-center executives and palliative-care leaders. Cancer centers were identified using the Commission on Cancer database. Surveys were sent to all of the 71 NCI-designated cancer centers and a random sample of 71 (of a total sample of 1411) non-NCI cancer centers. Two surveys were used in the study: one queried cancer-center executives on their self-assessment of pain and palliative-care services at their institutions, their attitudes toward palliative care, and the availability of palliative-care programs; and the second asked palliative-care leaders in these programs to assess the characteristics of their programs, including the structure and processes of palliative-care clinical services, education, and research in their cancer centers. A total of 142 first surveys and 120 second surveys were sent to executives and program leaders (with response rates of 71% and 82%, respectively). Response rates did not differ between types of cancer centers.

For several measures, cancer-center executives reported significant differences between NCI-designated cancer centers and non-NCI cancer centers, including the presence of at least 1 palliative-care physician (92% vs 74%; P = .04), the presence of an inpatient palliative-care consult team (92% vs 56%; P < .001), and the presence of an outpatient palliative-care clinic (59% vs 22%, respectively; P < .001). One factor that might account for such variability is the sheer difference in volume of patients. The NCI cancer centers reported an annual average of 10,000 outpatients (range, 2,500 to 55,000) in the year prior to the survey, compared with 3002 (800 to 8,400) in the non-NCI cancer centers (P = .01) .

Important Gaps

The study also revealed areas in which there are still gaps. Palliative-care training and education remains relatively weak, the authors note. Thirty-eight percent of NCI cancer centers had palliative-care fellowship programs, compared with 17% of non-NCI cancer centers. Additionally, the survey found that about 25% of cancer centers of both types had mandatory rotations in palliative care for medical oncology fellows. These numbers were even lower for radiation and pediatric oncology fellows and medical students. Research programs in palliative care were also low in number — about 46% in NCI cancer centers and 17% in non-NCI cancer centers.

"What I think we need to ensure happens next is that palliative care becomes permanently and substantially integrated into the genome of American medicine," Dr. Meier said. To improve things on the education front, she suggested strengthening postgraduate programs, developing loan-forgiveness programs to encourage people to enter the palliative-care workforce, and increasing NIH investment into quality-of-life issues. "There is also an urgent need for policy toward payment changes in terms of coverage for these services," she added.

Not Limited to End of Life

Another finding from the study was the median duration from referral to death. For inpatient consultation teams and palliative-care units, the median time was 7 days; for outpatient clinics, the median time was 90 days. Most cancer patients could benefit from much earlier referrals, the authors note.

For so long, palliative care has been a little too little, a little too late.

"For so long, palliative care has been a little too little, a little too late," observed Dr. Hui. "Palliative care should not be limited just to patients at the end of life; rather, it should be incorporated earlier into the care of all cancer patients."

Dr. Hui described this new model as one of "simultaneous care," in which both cancer treatment and cancer supportive services are offered at the same time, rather than sequentially.

Part of the delayed referral of patients to palliative-care services might be a semantic issue. "Often palliative care has negative connotations or is equated with end of life by both physicians and patients," Dr. Hui noted. "One discussion we are having in the community is the shift toward calling these supportive care services."

Dr. Meier agrees that supportive care might be a more appropriate term. "Our job is to be responsive to what the patients need," she said. "I think our goal as clinicians is to meet the patient where they are in terms of providing these services.

Funding for this study was provided by NCI grants. Dr. Hui and Dr. Meier have disclosed no relevant financial relationships.

JAMA. 2010;303:1054-1061. Abstract

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