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Originally published as JCO Early Release 10.1200/JCO.2005.11.908 on February 22 2005 © 2005 American Society of Clinical Oncology.
Late Referrals to Palliative CareCity of Hope National Medical Center, Duarte, CA EXCELLENT CARE, TOO LATE The report by Morita et al1 regarding late referrals to specialized palliative care services in Japan provides a unique perspective on this topic, with great significance to other countries. The primary end point of the study was the bereaved family members’ perceptions of the appropriateness of the timing of referrals of patients to palliative care units. Previous literature has primarily measured the effectiveness of palliative care referrals from the perspective of the primary care physician. It is of value to address this question from the perspective of family caregivers, as those truly most impacted by these referral patterns. Previous literature has documented late referrals to hospice or palliative care services as being attributable to physicians wanting to avoid referring patients to palliative care "too early." Oncology settings echo the beliefs of "it’s not time" or "we’re not ready for that yet." This reluctance is commonly expressed by patients, family caregivers, and primary care providers in cancer care and other serious illnesses. The families in this study who perceived referrals as having come early or very early were so few that they were excluded from the final analysis. The data reported by these authors is not dissimilar to the situation in the United States, where the average length of stay in hospice is 50 days, and median stay is only 21 days. The National Hospice and Palliative Care Organization reported in 2002 that 34.7% of those served by hospice died within 7 days or less of referral.2 One can well imagine how compromised palliative care can be when instituted only days before death. This report from Japan speaks to the critical role of communication in advancing palliative care. The regression analysis reported by the authors revealed independent determinants of family perception of late referrals. Interestingly, these determinants included family belief before admission that palliative care shortens the patient’s life, insufficient advance discussion about end-of-life care, and families’ perception of insufficient preparation for the changes in the patient’s condition. Programs in the United States such as the End of Life Physician Education Curriculum (EPEC)3 and the End of Life Nursing Education Consortium (ELNEC)4 have emphasized content of communication as the essential foundation of quality across dimensions of care including pain and symptom management, addressing ethical issues, cultural considerations, and advanced care planning. The National Hospice and Palliative Care Organization in the United States has frequently described hospice as "the difficult choice"—the choice that no one wants to make. For decades, our society has demonstrated that discussions of death and dying, hospice, and palliative care are topics to be avoided at all costs. It is again an interesting dichotomy that death, the topic we most avoid, is also the one that is inevitable for us all. Yet, the wisdom shared by the family caregivers in this study described palliative care as exceeding their expectations. The authors are to be commended for asking these expert family caregivers for advice, as illustrated in the recommendations provided in their Table 5. These 182 family caregivers reported that earlier cooperation of palliative care and oncology physicians would be helpful. The recommendations offered by these families support close collaboration between oncologists and palliative care specialists, rather than simply a swift transfer from one provider to the other as the patient’s condition declines. The recommendations also included having oncologists with improved knowledge of palliative care, allowing patients to receive medical treatments within the palliative care unit, oncologists’ continued participation in patient care, and the possibility of a "trial admission" to the palliative care unit. Each of these recommendations is applicable to other countries and settings. We at the City of Hope National Medical Center are currently participating in research titled "Simultaneous Care." This project is supported by the National Cancer Institute (Dr Fred Myers, principal investigator, UC Davis Medical Center) and is a multisite study involving UC Davis, City of Hope National Medical Center, The Johns Hopkins University Cancer Center, and the University of Southern California to evaluate a model strategy by which cancer patients receive supportive care through a patient educational model while participating in clinical trials for cancer. Model programs and research are important in realizing that the ultimate goal is not only earlier referral of patients to hospice or palliative care programs, but rather also the integration of the concepts of palliative care into routine high quality cancer care. Similar programs such as "Project Safe Conduct" conducted at the Hospice of the Western Reserve and the Ireland Cancer Center at Case Western University in Cleveland5 and "Project ENABLE"6 conducted at the Norris Cotton Cancer Center at Dartmouth Hitchcock Medical Center, have also recently demonstrated the importance of providing palliative care services for patients who are undergoing active cancer treatment. CELEBRATING PROGRESS The problem of late referrals to palliative care as reflected in this article is certainly important, and the message is clear from family members that patients should be referred to palliative care programs earlier in the course of disease. While major advances and earlier referral to palliative care services is the ideal, it is also important to note that major strides have occurred over the last 10 years, as captured in this report. The increase in the number of palliative care units in Japan as reported by Morita et al from only five in 1991 to 123 in 2004 parallels our experience in the United States in the growth of hospice and palliative care programs. The number of hospice programs in the United Sates increased from 1,935 programs in 1992 to 3,200 programs in 2004.2 Palliative care programs, an aspect of hospital care that was virtually absent a decade ago, have also grown remarkably over the last 10 years, with close to 1,000 hospitals reporting palliative care programs.7 Reading this article has a special significance to me, because in 1994, I participated in an educational program held in Tokyo convened in conjunction with the WHO efforts and several other organizations to address the problem of untreated pain. While lecturing at this conference on the topic of pain management, I was asked in the discussion period about my belief in patients being told their diagnosis when they had life-threatening diseases. While the question was not related to my presentation, I answered it by sharing my perspective and experiences in the United States of the importance of honest communication with patients about their diagnosis and prognosis. My response resulted in extreme controversy, with fairly hostile division in the audience. Following the summit, several participants met with me and shared that their intent in posing this question was to seize the opportunity to publicly raise these issues. While the findings by Morita et al suggest tremendous opportunity to improve referrals during the course of disease, it is notable that such significant progress has occurred in just over a decade in Japan. A BLUEPRINT FOR ACTION There is international recognition of the need to improve earlier referrals to hospice and palliative care programs. Clear recommendations to improve such care have been echoed by the Institute of Medicine report on end-of-life care, including improved end-of-life care for children.8,9 Development of national consensus guidelines for quality palliative care were released in May 2004 in the United States and these guidelines speak strongly to the need for earlier referrals to palliative care programs.10 In my own experience as a hospice volunteer, most conversations at the bedside upon initially introducing myself to families begin with the comment, "Why did no one tell us about this sooner?" or, "Do you know what it is like to finally see our mother comfortable and no longer in pain?" Yet, as Morita et al document, achieving this vision of high quality, appropriate, and timely referral to palliative care will be possible only by overcoming not only professional barriers but also patient, public, and system barriers. 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. Research Funding: Betty R. Ferrell, American Cancer Society, National Cancer Institute. For a detailed description of this category, or for more information about ASCO’s conflict of interest policy, please refer to the Author Disclosure Declaration and the Disclosures of Potential Conflicts of Interest section of Information for Contributors found in the front of every issue. REFERENCES
1. Morita T, Akechi T, Ikenaga M, et al: Late referrals to specialized palliative care service in Japan. J Clin Oncol 23:2637-2644, 2005 2. National Hospice and Palliative Care Organization (NHPCO). http://www.nho.org/files/public/Facts%20Figures%20Feb04.pdf 3. Education for Physicians on End of Life Care (EPEC). http://www.epec.net/ 4. End of Life Nursing Education Consortium (ELNEC). http://www.aacn.edu/elnec 5. Pitorak EF, Armour MB, Sivec HD: Project Safe Conduct integrates palliative goals into comprehensive cancer care. J Palliat Med 6645-6552003[CrossRef][Medline] 6. Bakitas M, Stevens M, Ahles T, et al Project ENABLE: A palliative care demonstration project for advanced cancer patients in three settings. J Palliat Med 7:363-372, 2004[CrossRef][Medline] 7. Center to Advance Palliative Care (CAPC). http://www.capcmssm.org 8. National Consensus Project (NCP). www.nationalconsensusproject.org 9. Institute of Medicine: Approaching Death: Improving Care at the End of Life. Washington, DC, National Academy Press, 1997 10. Institute of Medicine: When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC, National Academy Press, 2003
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Copyright © 2005 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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