Bridging the Divide: Integrating Cancer-Directed Therapy and Palliative Care
Authors: Jennifer L. Malin
Journal: Journal of Clinical Oncology (2004)

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. Palliative treatment for symptoms of illness and dying is therefore essential for half of all people diagnosed with cancer. 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. 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. 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 al 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. 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.” 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. 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. 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 endof-life care as one of seven focus areas. 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 JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 22 NUMBER 17 SEPTEMBER 1 2004