Improving the care of terminally ill cancer patients and their families.

Cancer patients develop a number of devastating physical and psychosocial symptoms before death and their families suffer severe distress. 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. In this issue of the Journal of Clinical Oncology, Aabom et al 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. 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. 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 issues and they have tend to overestimate survival. 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. 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 mortality and later referral to palliative care previously described for these patients. This JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 23 NUMBER 30 OCTOBER 2