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Originally published as JCO Early Release 10.1200/JCO.2004.06.917 on July 26 2004 © 2004 American Society of Clinical Oncology.
Bridging the Divide: Integrating Cancer-Directed Therapy and Palliative CareDepartment of Medicine and Jonsson Comprehensive Cancer Center, David Geffen School of Medicine at University of California Los Angeles, Los Angeles, CA; RAND, Santa Monica, CA Although great strides have been made in cancer therapy, half of all patients diagnosed with cancer will die of their disease, and just under one-third of these deaths occur within 6 months of diagnosis.1 Palliative treatment for symptoms of illness and dying is therefore essential for half of all people diagnosed with cancer.2 The literature, however, does not reflect this; rather, most of the oncology literature focuses on prevention and curative treatment of malignancies. Patients with cancer typically experience multiple symptoms resulting from effects of the illness and its treatment. Among the most frequent and devastating symptoms are pain, depression, and fatigue.3 This issue of the Journal of Clinical Oncology contains a report on the quality of end-of-life care for women dying of breast cancer from 1992 to 1998 in the Canadian Province of Quebec.4 The findings reported by Gagnon et al deserve our attention. The authors found that very few women die at home (6.9%), and more than a quarter spent more than 20% of their last 6 months of life in the hospital. Other studies report a similarly high proportion of patients who die in acute care facilities, with a correspondingly low percentage of in-home deaths. Bruera et al5 found that only one-third of cancer patients treated at M.D. Anderson Cancer Center died at home, and others have reported significant regional variation in the percent of patients who die at home.6,7 What, if anything, do such data imply about the current state of palliative cancer care? Unfortunately, very little is known about the quality of care of patients at the end of life. Measuring the quality of end-of-life care requires defining what "quality of care" means for a patient who is dying. The Institute of Medicine Committee on Care at the End of Life defined a "good death" as "one that is free from avoidable distress and suffering for patients, families and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural and ethical standards."8 Many models for evaluating the quality of care at the end of life have been proposed and may be summarized into five general domains: (1) symptom management and maintenance of quality of life; (2) survival time; (3) self-determination; (4) support for the individual experience of the dying process; and (5) family and caregiver well-being.9-13 In 2003, the National Cancer Policy Board highlighted a number of barriers to patients receiving palliative care and called for developing a set of measures to evaluate the quality of end-of-life care.9 Additionally, working with the National Cancer Institute, the National Quality Forum is developing candidate measures for a cancer quality measures set that will include symptom management and end-of-life care as one of seven focus areas.14 Having a set of valid quality measures for end-of-life care will allow researchers, clinicians, and policy makers to begin to identify the structures, such as the availability of palliative services and training of physicians, and processes associated with better patient outcomes, as well as design and evaluation of interventions to improve care. Venturing intrepidly into uncharted territory, Gagnon et al report on patients’ end-of-life care using hospital discharge data and billing claims. They construct a palliative care–oriented profile score to describe breast cancer patients’ access to palliative care during the last 6 months of life. Because provision of palliative care is not documented in administrative databases, the palliative care–oriented profile score is a composite of outcomes and use of services during the last 6 months of life that are assumed to reflect the quality of palliative care provided to patients. This score is heavily weighted toward the place of death (home, palliative care bed, chronic care bed, acute care bed, or emergency department), which accounts for up to five of the maximum 12 points possible. Each of the following are worth an additional point: having fewer than two admissions in the last 6 months of life, spending less than 20% of the last 6 months in the hospital, having no emergency department visits, receiving follow-up with a family physician, receiving community care (as opposed to hospital-based care), having at least one home visit, and not having any treatment with chemotherapy during the last 6 months of life. Although outcomes such as place of death, time spent in hospital, and emergency department visits may reflect, at least in part, the quality of palliative care provided to patients, there is as yet no evidence regarding any association between the location of ambulatory visits, or the specialty of the physicians providing care and quality of end-of-life care. Before adopting the palliative care–oriented profile score as a measure of the quality of palliative care, further work must demonstrate that good process of care is associated with the structure and outcomes indicators that make up the score. What prevents patients from receiving high-quality palliative care at the end of life? Many health care providers lack training in palliative care.15 In a 1998 survey conducted by the American Society of Clinical Oncology (ASCO), only 40% of US oncologists found their training "very helpful" in managing symptoms, and less than one-third found their training "very helpful" in communicating, coordinating care, shifting to palliative care, or initiating hospice care for patients at the end of life.16 Similarly, another study found that only half of European oncologists reported receiving "good training in palliative care."17 Compounding the problem, current knowledge is an inadequate foundation for the practice of evidence-based medicine in the palliative care setting.18 Limited availability of palliative care services (at least in some areas) and fragmented reimbursement systems also make it difficult to provide high-quality care to patients at the end of life. According to the ASCO survey, just 6% of oncologists reported being able to obtain all services needed by dying patients, and only half said they were able to get their patients "almost all" of what they needed.16 Many reported lack of availability or difficulty accessing palliative care services for patients, including a palliative care team (56%), a pain service (18%), hospital-based hospice (28%), and psychosocial support services (15%). End-of-life care is expensive, and fragmented reimbursement systems may create additional obstacles to patients receiving high-quality palliative care. For example, Medicare provides a hospice benefit to patients with a prognosis of less than 6 months who agree to forgo treatment with curative intent. Hospice provider organizations are paid a daily rate for each enrolled patient, thereby creating a disincentive to provide services that, while costly, may be effective at palliating symptoms (eg, radiation therapy). Perhaps the most significant barrier to quality care at the end of life may be the artificial and unnecessary division between cancer-directed therapy and palliative care. This divide is reflected in a myriad of ways throughout patients’ experience with cancer care. The structure of the Medicare hospice benefit exemplifies how this divide impacts the quality of care for patients at the end of life. This dichotomy is also implicit in Gagnon’s palliative care–oriented profile, where treatment by specialists and visits to hospital-based clinics are categorized as care provided within a "medical-oriented model" and equated with lower-quality palliative care. Cancer-directed therapies may be used with palliative intent as well as to prolong survival. For example, both chemotherapy and radiation therapy are frequently used to alleviate symptoms,19 and although palliative care is often portrayed as care that should happen "when there is nothing else left to offer," attention to symptom management and maintenance of the best quality of life possible should be a priority throughout the illness, and not just during the last few months of life. Only by integrating palliative care and cancer-directed therapy will patients receive the most effective care, at the appropriate time, as they approach the end of life. What will it take to bridge the divide to integrate palliative care and cancer-directed therapy? We must make symptom management a priority at diagnosis, throughout treatment, during periods without treatment, and finally, at the end of life. Basic research is needed to characterize the epidemiology of symptoms in cancer patients, identify new treatments for them, and evaluate the efficacy of potential therapies. Clinicians need to become expert or be associated with symptom management experts in their practices or referral networks. Recognizing this need, ASCO has developed a curriculum called "Optimizing Cancer Care: The Importance of Symptom Management" that is available for clinicians who want to obtain additional training. Research is also needed to determine whether physicians of a particular specialty have the training to provide symptom management and should be designated as experts in this area, or whether all physicians involved in caring for cancer patients should be expected to become competent in managing the sequelae of cancer and its treatment. Additional strategies should be considered and evaluated. For example, advanced-practice nurses with training in palliative care could work with oncologists throughout a patient’s illness to help manage symptoms and other aspects of their care. Payors must amend policies that require patients to choose between palliative care and cancer-directed therapy. We need a detailed review of current reimbursement policies to understand how they impact delivery of palliative care in various settings, as well as consideration of changes to improve patients’ access to these services, such adding a physician billing code for the delivery of palliative care services analogous to the International Classification of Diseases Ninth Revision code for hospital services.20 We need all of these efforts and more to traverse the divide that now exists between palliative care and cancer-directed therapy. We should strive to ensure that all patients receive high-quality care throughout their illness. Author’s Disclosures of Potential Conflicts of Interest The following author or their immediate family members have indicated a financial interest. No conflict exists for drugs or devices used in a study if they are not being evaluated as part of the investigation. Honoraria: Jennifer L. Malin, American Society of Clinical Oncology (ASCO). Research Funding: Jennifer L. Malin, ASCO. For a detailed description of these categories, or for more information about ASCO’s conflict of interest policy, please refer to the Author Disclosure Declaration form and the "Disclosures of Potential Conflicts of Interest" section of Information for Contributors found in the front of every issue. Acknowledgment Supported by a CI-10 Damon Runyon-Lilly Clinical Investigator Award from the Damon Runyon Cancer Research Foundation (J.L.M.). REFERENCES 1. Ingham J: The epidemiology of cancer at the end of life, in Berger A, Portenoy RK, Weissman DE (eds): Principles and Practice of Supportive Oncology. Philadelphia, PA, Lippincott-Raven, 1998, pp 749-765 2. American Society of Clinical Oncology: Cancer care during the last year of life. J Clin Oncol 16:1986-1996, 1998[Abstract]
3. National Institutes of Health State-of-the-Science Panel: National Institutes of Health State-of-the-Science Conference Statement: Symptom Management in Cancer: Pain, Depression, and Fatigue, July 15-17, 2002. J Natl Cancer Inst: 95:1110-1117, 2003 4. Gagnon B, Mayo NE, Hanley J, et al: Pattern of care at the end of life: Does age make a difference in what happens to women with breast cancer? J Clin Oncol 22:3458-3465, 2004
5. Bruera E, Russell N, Sweeney C, et al: Place of death and its predictors for local patients registered at a comprehensive cancer center. J Clin Oncol 20:2127-2133, 2002 6. Pritchard RS, Fisher ES, Teno JM, et al: Influence of patient preferences and local health system characteristics on the place of death: SUPPORT investigators—Study to understand prognoses and preferences for risks and outcomes of treatment. J Am Geriatr Soc 46:1242-1250, 1998[Medline] 7. Brown Atlas of Dying. Available at http://www.chcr.brown.edu/dying/BROWNATLAS.HTM 8. Field MJ, Cassel CK: Approaching Death: Improving Care at the End of Life. Washington, DC, National Academy Press, 1997
9. Singer PA, Martin DK, Kelner M: Quality end of life care: Patients’ perspectives. JAMA 281:163-168, 1999
10. Emanuel L, Emanuel E: Advance directives: Stability of patients’ treatment choices. Arch Intern Med 154:209-217, 1994 11. Lynn J: Measuring quality of care at the end of life: A statement of principles. J Am Geriatr Soc 45:526-527, 1997[Medline] 12. Rosenfeld K, Wenger NS: Measuring quality in end-of-life care. Clin Geriatr Med 16:387-400, 2000[CrossRef][Medline] 13. Teno JM: Quality of care and quality indicators for end-of-life cancer care: Hope for the best, yet prepare for the worst, in Foley KM, Gelband H (eds): Improving Palliative Care for Cancer. Washington, DC, National Academy Press, 2001 14. National Quality Forum Archives. Available at http://www.qualityforum.org/archive.htm 15. Gelband H: Professional education in palliative and end-of-life care for physicians, nurses and social workers, in Foley KM, Gelband H (eds): Improving Palliative Care for Cancer. Washington, DC, National Academy Press, 2001 16. Foley KM, Gelband H: Improving Palliative Care for Cancer. Washington, DC, National Academy Press, 2001 17. Cherny NI, Catane R, European Society of Medical Oncology Taskforce on Palliative and Supportive Care: Attitudes of medical oncologists toward palliative care for patients with advanced and incurable cancer: Report on a survey by the European Society of Medical Oncology Taskforce on Palliative and Supportive Care. Cancer 98:2502-2510, 2003[CrossRef][Medline] 18. Rinck GC, van den Bos G, Kleijnen J, et al: Methodologic issues in effectiveness research on palliative cancer care: A systematic review. J Clin Oncol 15:1697-1707, 1997[Abstract]
19. Detmar SB, Muller MJ, Shornagel JH, et al: Role of health-related quality of life in palliative chemotherapy treatment decisions. J Clin Oncol 20:1056-1062, 2002
20. Cassel CK, Vladeck BC: ICD-9 Code for palliative or terminal care. N Engl J Med 335:1232-1234, 1996
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Copyright © 2004 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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