Americans are more aware than ever that care at the end of life is often costly, poorly coordinated, and not aligned with patients’ wishes. Multiple news outlets have published stories in the past year chronicling the gap between patients’ preferences and the care they actually receive, particularly when their disease is incurable.1,2 In September 2014, the Institute of Medicine (IOM) released a report calling for the fundamental overhaul of end-of-life care.3 From a policy perspective, the Affordable Care Act contains language addressing end-of-life care costs.4 Despite this increased attention, care at the end of life is getting more aggressive, with more intensive care unit use and transitions to different sites of care, and later and shorter use of hospice. These trends often run contrary to patients’ expressed wishes.5
One of the keys to closing this gap and altering the worrisome trend is the earlier incorporation of palliative care services into a patient’s care plan. This integration is particularly important in the care of oncology patients, whose illnesses may be terminal and fraught with severe symptoms. Though many oncologists believe that their practice already successfully incorporates palliative care, the available evidence suggests that they are wrong in some cases. In a recent study, oncologists rated their skill in managing cancer pain higher than pain specialists rated their own; however, oncologists had lower scores in managing 4 common complex pain problems on standardized vignettes.6 Nearly half of oncologists are reluctant to refer complex pain patients to pain specialists, despite performing worse than pain specialists on pain vignettes.6 From a patient education perspective, one study found that less than one-fifth of patients with terminal colorectal or lung cancer managed by community oncologists could correctly repeat the prognosis their oncologist had given them.7
These studies suggest a substantial discrepancy between the care oncologists perceive they are providing and the quality of care being delivered. In this commentary, we address ways to remedy this gap through our review of the evidence for earlier and more comprehensive integration of palliative care with oncologic care.
BENEFITS OF EARLY PALLIATIVE CARE INVOLVEMENT
The benefits of palliative care are clear, important, and broad—and their impact is stronger when palliative care begins early. Demonstrated benefits for the patient include improved symptom management, increased satisfaction and quality of life, decreased depression and anxiety, and even improved survival. Demonstrated benefits for the healthcare system include fewer readmissions and markedly lower costs per day. We have summarized these findings from recent research in .
Building on these findings, the American Society of Clinical Oncology (ASCO) published a provisional clinical opinion in 2012 regarding the integration of palliative care services into standard oncology practice when a patient is diagnosed with metastatic or advanced cancer.17 The panel made a strong recommendation that “Combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.”16 Partially stemming from these recommendations, in 2013, the Agency for Healthcare Research and Quality funded a collaboration between ASCO and the American Academy of Hospice and Palliative Medicine to develop and disseminate a primary palliative care evidence-based curriculum for oncology and to study the curriculum’s effect on the quality of care through the use of embedded quality metrics in the oncology measure set.18 While these recommendations are helpful for practitioners, the onus falls on individual practitioners to incorporate changes into their practice.
Beyond the evidence and societal recommendations, our own clinical experiences at Sydney Kimmel Comprehensive Cancer Centre suggest that early involvement of palliative care allows for the ongoing assessment of patients’ wishes as they evolve through the course of their illness. These repeated discussions inform clinical preparedness and planning prior to the onset of disease-induced disability, and also serve as an extra layer of support to the patient and his/her loved ones in conjunction with treatment and follow-up sessions.
TRENDS IN PALLIATIVE CARE PRACTICE
Palliative care is a growing field, and while more and more practitioners are being trained in this specialty, there is a dearth of specialists available to meet the increasing demand. Integration of palliative care into other practices, including and beyond oncology, will be crucial to addressing this need.
Lack of Trained Specialists
Since the field’s recognition as a subspecialty in 2007, fellowship-trained palliative physicians and allied professionals have increased in number. As of 2013, there were about 5000 board-certified palliative care specialists in the United States,18 and as of 2015, there are 11,000 nurses registered with the Hospice & Palliative Nurses Association.19 Despite the increasing number of practitioners, the number of facilities wherein people can be certied is relatively limited. For example, in 2010, there were only 73 accredited allopathic subspecialty training fellowship programs that collectively produced approximately 86 new palliative medicine physicians per year.20 In the past 10 years, however, the number of in-hospital palliative care teams and inpatient units has increased. The number of palliative care teams within hospitals in the United States, with 50 or more beds, has grown 164%—from 658in the year 2000 (which was less than one- fourth of US hospitals) to more than 1700 in 2012.21 Nearly 67% (1734) offered these services in 2012.21
The increase in the number of palliative care physicians is still not enough to meet current demand. For example, as of 2011, there was 1 oncologist for every 141 newly diagnosed cancer patients in the United States, but only 1 palliative medicine physician for every 1200 persons living with a serious or life-threatening illness.22 There is a clear need to either train more physicians or develop alternative approaches. Johns Hopkins currently has 4 fellows, and we are starting to teach primary palliative care skills to all physicians and advance practice nurses.
Since the 1990s, advocates have pushed for all healthcare practitioners to receive training in basic palliative care skills (eg, the Education in Palliative and End-of- Life Care and End-of-Life Nursing Education Consortium courses).18 However, the increased demand for palliative care has led experts to call for a “reenergized, concerted effort spanning the health care system.”18 Stemming from this need, in a 2013 opinion piece in The New England Journal of Medicine, Quill and Abernethy advocated for each medical specialty and health system to “delineate basic expectations regarding primary palliative care skills to be learned and practiced by its members, plus a triage system for calling on palliative care specialists when necessary.”18
In addition, they maintained that these defined palliative skills would be distinguishable from palliative care requiring formal consultation.18 Quill and Abernethy explored how this shift would simplify the healthcare system, enhance clinicians’ skills, increase patient satisfaction by enabling deeper patient-provider relationships, and help control costs through reducing the number of specialists comanaging patients.18 The expansion of palliative care is an ongoing conversation in the eld and reinforces the evidence supporting earlier integration of palliative care into oncology practice. Building on the Quill and Abernethy commentary, in we have included our suggestions regarding necessary primary palliative skills for oncologists. In addition to training healthcare practitioners, there is a push to introduce this training into school curricula. For example, starting as early as 1996, the University of Rochester School of Medicine in New York introduced a fully integrated comprehensive palliative care curriculum,26 and at Johns Hopkins School of Medicine all medical students must complete a 4-day intensive course entitled End of Life and Palliative Care before graduation.
HOW TO ALLEVIATE BARRIERS TO EXPANDING PALLIATIVE CARE
There are barriers that the healthcare system must overcome to truly integrate palliative care components into oncology at the time of diagnosis. First, we must strive to dispel myths among patients and providers that palliative care is a death sentence or a sign that the physician has given up on a patient. The time for intervention within oncology is not just upon the penultimate or antepenultimate admission. Palliative care should not be considered a fourth-line treatment, but rather a first-line treatment. These misunderstandings can only be dispelled through education and discussion.
There is not a single study to date that shows decreased survival with a palliative care intervention, which debunks some providers’ concerns and stigmas regarding palliative care. In fact, at least 2 additional studies have shown a significant survival benefit to symptom management and palliative care in addition to usual care. In addition to the Temel and ENABLE-III trials discussed in , Smith and colleagues randomized 202 patients with severe refractory cancer pain to best medical management by a trained expert team to the same care plus an intrathecal drug delivery system (IDDS). Members of the IDDS group had signicantly better pain control, fewer drug toxicities,and lived an average of 102 days longer.27 In another study, Higginson and colleagues randomized 105 patients with severe breathlessness to usual pulmonary care versus usual care plus an interdisciplinary palliative care team (IDPCT) integrating palliative care, respiratory medicine, physiotherapy, and occupational therapy. The primary end point was mastery of breathlessness at 6 weeks, which was achieved. Additionally, survival was improved at the 6-month mark: 94% in the intervention group versus 75% in the control group (P = .048).28 These studies underscore the survival benefit with palliative care.
Second, we must strive to create a collegial environment wherein practitioners work together to support a patient across the continuum of care, as opposed to territorial tensions. Even in lung cancer, where there is substantial evidence of benefit, only 8% of patients are seen by a palliative care team, usually near death, to address end-of-life issues.29 Third, we must strive to consistently introduce early palliative care among oncology patients, and more regularly invoke palliative care help and consultation. Over 60% of all oncology hospital admissions are due to symptoms, and admission for a symptom should be an automatic consult request.30
Finally, an overarching barrier is institutional resistance to change. Research suggests that early integration of palliative care into oncology care can profoundly affect a healthcare facility. For example, in a pilot study at the Division of Hematology/Oncology, Tisch Cancer Institute, Icahn School of Medicine, outcomes improved when palliative care consultations were mandated for patients with stage IV disease or stage III lung or pancreatic cancer, a prior hospitalization within the past 30 days, hospitalization for more than 5 days, or uncontrolled symptoms (pain, nausea, dyspnea, delirium, or distress).31 Palliative care consultations doubled from 41% to 82%, 30-day readmissions dropped from 36% to 17% (P = .022), hospice utilization increased from 14% to 25% (P = .146), and mortality index improved (1.35 to 0.59). When the program stopped after the 3-month trial, the oncologists demanded its return! Similar programs are in the plans at Johns Hopkins for when more personnel are in place.
These barriers can be overcome and we can learn from leading practices across the country and abroad.
Despite the obstacles explored above, integration of palliative care into oncology care is an evidence-based practice, bolstered by recent studies and the ASCO recommendations. This movement in care is broadly aligned with trends in palliative care as well as discussions occurring in public discourse. Early palliative care involvement is a rare example of a medical win-win solution: for the patient, his/her caregiver, the physician, the hospital, and the healthcare system as a whole. Alessandra Colaianni, BA, MPhil* is senior medical student, Division of General Internal Medicine, Johns Hopkins School of Medicine, Baltimore, MD.
Sarina Isenberg, BA, MA* is PhD student, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.
Thomas J. Smith, MD, FACP, FASCO, FAAHPM is Harry J. Duffey Family Professor of Palliative Medicine, Johns Hopkins Medical Institutions, Baltimore, MD; Professor of Oncology, Sidney Kimmel Comprehensive Cancer Center, Baltimore, MD.
*These 2 authors contributed equally to the manuscript.
Supported by the California Healthcare Foundation Grant #18339; NCI core grant P30 CA 006973 to Sidney Kimmel Comprehensive Cancer Center Program; Patient Centered Outcomes Research Institute (contract #4362) (PI Rebecca Aslakson, MD); 1R01 CA177562-01 (Ferrell); 1-R01 NR014050 01 NINR (PI Amy Knowlton).
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