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Originally published as JCO Early Release 10.1200/JCO.2005.07.910 on September 26 2005 © 2005 American Society of Clinical Oncology.
Improving the Care of Terminally Ill Cancer Patients and Their FamiliesDepartment of Palliative Care and Rehabilitation Medicine, The University of Texas M.D. Anderson Cancer Center, Houston, TX Cancer patients develop a number of devastating physical and psychosocial symptoms before death1 and their families suffer severe distress.1 There is consensus about the need to improve medical and nonmedical services, but in most cases patients and families receive limited and late access to care.1 In this issue of the Journal of Clinical Oncology, Aabom et al2 report that Danish cancer patients receiving the "terminal declaration" had a significant and impressive reduction in admission and hospital death rates. This declaration requires a prognosis of less than 6 months’ survival and it gives rights to full reimbursement of drugs, home care equipment, and payment to informal caregivers. This excellent study was not able to determine if the terminal declaration resulted in improved physical or psychosocial symptom control in the patients or decreased family distress. It is also not clear which aspects of this declaration are most effective. One possibility is that physicians who use the terminal declaration communicate more openly with their patients regarding prognosis and end-of-life care planning, including appropriate palliative care access. Another possibility is that the increased financial benefits, such as improved medication coverage and payment for informal caregivers, allow patients to remain at home. The support for informal caregivers is particularly relevant because families conduct the overwhelming majority of community-based palliative care. This study provides strong justification for additional research to confirm if this simple intervention is capable of reducing hospital deaths and patient and family distress. Previous research has shown that simple interventions such as the provision of survival and symptom control information by a nurse did not result in a significant change in patterns of care at the end of life.3 More complex interventions such as the establishment of regional palliative care programs including specialist home care and palliative care units were able to increase palliative care access to more than 80% of cancer patients, decrease mortality, and reduce overall cost of care.4,5 These studies suggest that changing the trajectory of illness and access to palliative care in North America may require more complex interventions than those included in the terminal declaration. It is possible that this benefit might be particularly effective among Danish cancer patients who already have access to completely free and integrated hospital, outpatient, home care, and palliative care services. An important aspect of the Danish terminal declaration is that it promotes communication and provides extra benefits that are fully integrated with the existing medical services. In the United States, patients and families need to opt out of acute care services to receive the hospice medical benefit; this frequently limits their access to many potentially useful interventions including bisphosphonates, blood products, radiation therapy, targeted therapies, or participation in phase I clinical trials. These results suggest that improving community support for advanced cancer patients before they are referred to hospice might be a way of preventing admissions and hospital deaths. A disappointing finding of this study is that the terminal declaration was used in only 34% of cancer patients for a median of 52 days before death. Unfortunately, physicians frequently are reluctant to address end-of-life care issues6 and they have tend to overestimate survival.7 The authors correctly point out that this median of 52 days is more than double the survival from hospice referral to death in the United States, and is similar to the 1.9-month median survival after referral to palliative care programs in cancer centers.8 It is likely that physicians will use palliative care referrals of the terminal declaration earlier compared with hospice because these benefits are complementary to, rather than alternative to, available services. The finding of a lower probability of terminal declaration among patients with hematologic malignancies is consistent with the increased hospital mortality9 and later referral to palliative care8 previously described for these patients. This suggests there is special need for collaboration between oncologists and palliative care teams in the care of patients with hematologic malignancies. In summary, this study provides encouraging preliminary results suggesting that the terminal declaration promotes end-of-life care dialogue between physicians and patients and is capable of decreasing hospital admissions and hospital deaths. These results also show that this declaration can only be considered one of a number of interventions needed to improve the care of terminally ill cancer patients and their families. Author's Disclosures of Potential Conflicts of Interest The author indicated no potential conflicts of interest. REFERENCES 1. Field MJ, Cassel CK (eds): Approaching Death: Improving Care at the End of Life—Committee on Care at the End of Life. Washington, DC, Institute of Medicine, National Academy Press, 1997, pp 1-13
2. Aabom B, Kragstrup J, Vondeling H, et al: Defining Cancer Patients as Being in the Terminal Phase: Who Receives a Formal Diagnosis, and What Are the Effects? J Clin Oncol 23:7411-7416, 2005 3. The SUPPORT Principal Investigators: A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 274:1591-1598, 1995[Abstract] 4. Bruera E, Neumann CM, Gagnon B, et al: The impact of a regional palliative care program on the cost of palliative care delivery. J Palliat Med 3:181-186, 2000[CrossRef][Medline] 5. Brenneis C, Bruera E: Models for the delivery of palliative care: The Canadian model, in Bruera E, Portenoy RK (eds): Topics in Palliative Care, Vol 5. New York, NY, Oxford University Press, 2001, pp 3-23 6. Butow PN, Dunn SM, Tattersall MHN: Denial, misinformation, and the "assault of truth," in Bruera E, Portenoy RK (eds): Topics in Palliative Care, Vol 1. New York, NY, Oxford University Press, 1997, pp 263-278
7. Lamont E, Christakis N: Complexities in prognostication in advanced cancer: "To help them live their lives the way they want to." JAMA 290:98-104, 2003 8. Cheng W-W, Willey J, Palmer JL, et al: Interval between palliative care referral and death among patients treated at a comprehensive cancer center. J Palliat Med (in press) 9. Bruera E, Sweeney C, Russell N, et al: Place of death of Houston area residents with cancer over a two-year period. J Pain Symptom Manage 26:637-643, 2003[CrossRef][Medline] Related Article
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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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