Improvements needed in palliative care services
Authors: Mike Fillon
Journal: CA A Cancer Journal for Clinicians (2020)

“As for their patients, they need to know that the level of supportive and palliative care services is extremely variable and much less reliable than other cancer programs such as medical oncology or radiation therapy, and therefore they need to choose carefully where to receive cancer treatment so as to avoid unnecessary suffering.” –Eduardo Bruera, MD Studies have found that timely palliative care for patients with cancer can help them to better understand their disease progression and end-of-life options, improve their overall quality of life, and reduce costs of their health care. However, although the need for palliative care programs has grown in our expanding and aging population, the number of palliative care programs in cancer centers has not increased enough to meet demand, according to researchers. A new study in Cancer that compared data from a 2009 national study with a similar study conducted in 2018 investigated trends in palliative care facilities at cancer centers in the United States (published online February 12, 2020. doi:10.1002/cncr.32738). The researchers conducted in-depth evaluations of the palliative care structures and processes in place at cancer centers in the United States, using the same methodology applied in their 2009 investigation, according to senior author Eduardo Bruera, MD, the FT McGraw Chair in the Treatment of Cancer and chair of the palliative, rehabilitation, and integrative medicine department at The University of Texas MD Anderson Cancer Center in Houston. “This provided us with a unique understanding of the state of development of palliative care programs for cancer patients across the nation,” he says. In addition to assessing the numbers of outpatient clinics, the more recent study also investigated whether the facilities had inpatient consultation teams, inpatient palliative care units (PCUs), and institution-operated hospices. The 2009 and 2018 surveys sampled centers that were accredited by the American College of Surgeons Commission on Cancer (CoC). CoC-accredited centers comprise approximately 30% of all US hospitals, but because they are larger than nonaccredited centers, they treat approximately 70% of patients with cancer. Surveys were sent in 2018 to all 62 National Cancer Institute (NCI)–designated centers in the CoC database and to a sample of non–NCI-designated centers (60 of 1252 centers). CoC accreditation is based on meeting 34 standards that reflect the centers' quality of cancer care. NCI-designated centers must meet additional criteria related to excellence in preclinical, clinical, and population research. The number of centers surveyed in 2008 differed slightly because a few centers had changed status with regard to their NCI designation. As in 2009, the 2018 study included separate surveys for cancer center executives and the palliative care program leader at each center that had someone designated as such. The surveys included 22 questions for the executives that examined their attitudes regarding palliative care and access to palliative care services at their institution. In 2018, there were 82 questions repeated from the 2009 survey for the palliative care program leader regarding personnel, outpatient clinics, inpatient PCUs, consultation, education, research, and hospice, as well as 8 new questions concerning the level of integration of oncologic and palliative care at their centers. All participants were asked to complete the surveys anonymously (indicating whether or not their center was an NCI-designated center but omitting the names of the center and themselves). The overall response rate was 69% for cancer center executives (140 of 203 executives) and 75% for palliative care program leaders (123 of 164 leaders). Among NCI-designated cancer centers, 52 of 77 cancer center executives (68%) and 61 of 76 palliative care program leaders (80%) completed the surveys. For non–NCI-designated cancer centers, 88 of 126 cancer center executives (70%) and 62 of 88 palliative care program leaders (71%) did so. The response rates for the 2009 and 2018 surveys were similar for NCI-designated centers (69% for cancer center executives and 75% for palliative care program leaders) and non–NCI-designated cancer centers (70% and 71%, respectively). According to palliative care program leaders, although most programs still used the name “palliative care,” the term “supportive care” was gaining in popularity and by 2019 had been adopted by 18 NCI-designated cancer centers (35%) and 8 non–NCI-designated cancer centers (30%). The latter name emphasizes relevance throughout the treatment continuum and not only at the end of life, and the authors note that it is preferred by many patients. Palliative care program leaders reported some significant improvements in the structures and processes for their outpatient clinics. For example, between 2009 and 2018, the numbers of stand-alone clinics and days of clinic availability increased significantly for NCI-designated cancer centers, with nonsignificantly increasing trends noted among non–NCI-designated centers. Moreover, researchers found that the median interval from the time of outpatient referral to death doubled from 90 days (interquartile range [IQR], 84-120 days) to 180 days (IQR, 131-220 days) for NCI-designated cancer centers and more than doubled for non–NCI-designated cancer centers from 41 days (IQR, 28-54 days) to 84 days (IQR, 48-120 days). There were no major changes reported in the structures or processes of PCUs or inpatient consultation teams at either NCI-designated or non–NCI-designated cancer centers. However, Dr. Bruera says the study also reported some alarming results. For example, although there has been significant growth in the number of outpatient palliative care programs, “The vast majority of community cancer centers and a considerable proportion of the NCI elite cancer centers in the nation do not have inpatient palliative care units,” he says. In addition, Dr. Bruera notes that the growth of inpatient palliative care beds has been much slower than the growth of outpatient programs. “This raises concerns about the quality of care when an inpatient dies in many cancer centers.” Another disturbing observation was that the recommended early integration of supportive and palliative care is not taking place in the majority of cancer centers. Moreover, says Dr. Bruera, “We found that oncology fellows in most cancer centers do not have access to mandatory rotations in supportive and palliative care and are therefore unable to acquire the necessary training on how to manage physical and psychosocial suffering in their patients.” Perhaps the most concerning finding, according to Dr. Bruera, was the lack of supportive and palliative care research by most cancer centers, including comprehensive NCI cancer centers, “since better medical care is associated with active research on how to assess and manage the different aspects of suffering associated with cancer.” Since 2015, the CoC, which accredits more than 1500 cancer programs in the United States, has required programs to have palliative care, encouraging hospitals to strengthen these services, says Dr. Lawrence Shulman, MD, the chair of the CoC. Dr. Shulman is also the deputy director for clinical services and director of the Center for Global Cancer Medicine at the Abramson Cancer Center at The University of Pennsylvania in Philadelphia. However, Dr. Shulman notes that there still is a very limited supply of palliative care clinicians in the United States. Indeed, many centers are trying to determine the ideal way to provide palliative care regardless of whether it is administered by a palliative care specialist or an oncologist or a primary care physician. “We need to work toward making oncologists more skilled and more thoughtful on providing end-of-life care, how to better integrate the palliative care services they have and work as a team, and how we meet the needs of their patients in a better way,” Dr. Shulman says. “Frankly, that's the only potential solution because there's never going to be enough palliative care doctors to provide all related services to these patients.” Dr. Shulman says that when he was at the Dana-Farber Cancer Institute in Boston, Massachusetts, he, along with Atul Gawande, MD, MPH, Susan Block, MD, and others, helped to develop the Serious Illness Care Program that ensures that patients receive care that is consistent with their goals and values. “This is basically a detailed program that tries to train oncologists to do a better job managing their patients towards the end of life, and we have adopted it at Penn,” says Dr. Shulman. According to Dr. Bruera, it is important for all cancer specialists to ask the leaders of cancer centers and medical schools why there is such a limited emphasis on developing the structures and processes that will result in the better management of the suffering associated with a diagnosis of cancer, especially among those patients with the most serious types of cancer. “As for their patients, they need to know that the level of supportive and palliative care services is extremely variable and much less reliable than other cancer programs such as medical oncology or radiation therapy, and therefore they need to choose carefully where to receive cancer treatment so as to avoid unnecessary suffering,” he says. “Also, primary care doctors should consider referring patients to those cancer centers where their patients will have access to supportive and palliative care as outpatients and also access to palliative care units.”