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Preferences of Patients With Advanced Cancer for Hospice Care
To the Editor: Patients with metastatic cancer have been found to overestimate their survival, which may lead them to choose aggressive therapy rather than palliative care.1-2 This has been attributed to unrealistic expectations created by physicians3 and poor patient-physician communication.4 Many patients also enter hospice care very late in the course of their illness, and such late referrals generally reflect decisions made by physicians and not by patients.5 To determine how patients with advanced cancer make choices about palliative care, we surveyed patients whose oncologists had recently recommended palliative care.
Methods
From December 1998 through June 1999, we surveyed a consecutive series of 221 patients with advanced cancer 7 to 10 days after they received a recommendation for palliative care only, without further interventional treatment. This recommendation had been presented to them by 1 of a group of 15 community-based oncologists in a southeastern US city who participated in this study. All patients had full access to hospice programs through Medicare, private insurance, or multiple not-for-profit hospital-based institutions. The survey comprised 60 multiple-choice questions written at a sixth-grade reading level, was a modification of a well-tested instrument, and required approximately 20 minutes to complete.6
Results
Of the 221 consecutive patients who received a recommendation of palliative care, 173 patients (78%) completed the survey; 14 patients declined; and 34 patients were unable to complete the survey as determined by the patient, his or her caregiver, or oncologist. Mean patient age was 61.7 years (range, 22-89 years), 50% of the sample was male, 76% was white, and 23% was black. No patients died before the survey could be administered.
Only 27% of the respondents chose hospice care, whereas 63% requested chemotherapy, radiation therapy, hormonal therapy, and/or experimental medications; 3% requested a second opinion; and 7% were undecided. Patients who chose hospice care indicated that their decision was influenced by their physician (88%), their caregiver (47%), and knowledge of hospice programs (44%). Patients who chose nonhospice alternatives were influenced by a desire for more treatment (85%), a belief that hospice was not needed at that time (48%), and a desire for "hospital-based" rather than "home-based" care (23%). Twelve percent of the patients were influenced by their caregivers in choosing this alternative. Of the patients who chose nonhospice alternatives, 61% received additional chemotherapy, none received additional radiation therapy or surgery, and 36% entered hospice programs later in the course of their illness.
Patients who chose hospice survived an average of 31 days (median, 30 days), and those who requested nonhospice alternatives survived an average of 33 days (median, 31 days). There were no significant differences between the 2 groups in survival, payer status, diagnosis, race, treatment received, or performance status.
Comment
In this survey, a majority of a sample of well-informed, highly treated, highly physically impaired patients with advanced symptomatic cancer and a poor prognosis rejected their oncologist's recommendation for palliative care, requested additional interventional treatment, believed that hospice care was not needed at that time, and were not influenced by their caregivers. In contrast, patients who chose hospice were strongly influenced by their physician, their caregiver, and a knowledge of hospice programs. There was no survival benefit for those who did not choose hospice care.
Many patients did not choose hospice care despite being told with some certainty by their oncologists that nonhospice alternatives would not increase their survival and might have a potential for harm and that they would receive high-quality end-of-life care with good symptom control. This may reflect patients' significant difficulty in accepting a poor prognosis.
Rudolph M. Navari, MD, PhD
Department of Preprofessional Studies
University of Notre Dame
Notre Dame, Ind
Carol B. Stocking, PhD;
Mark Siegler, MD
MacLean Center for Clinical Medical Ethics
University of Chicago
Chicago, Ill
1. Weeks JC, Cook F, O'Day SJ, et al. Relationship between cancer patients' predictions of prognosis and other treatment preferences. JAMA. 1998;279:1709-1714.
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2. McQuellan RP, Muss HB, Hoffman SL, et al. Patient preferences for the treatment of metastatic breast cancer: a study of women with early stage breast cancer. J Clin Oncol. 1995;13:858-868.
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3. Smith TJ, Swisher K. Telling the truth about terminal cancer. JAMA. 1998;279:1746-1748.
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4. 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. 1995;274:1591-1598.
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5. Christakis NA, Escarce JJ. Survival of Medicare patients after enrolling in hospice programs. N Engl J Med. 1996;335:172-178.
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6. Portenoy RK, Thaler HT, Kornblith AB, et al. The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer. 1994;30A:1326-1336.
Letters Section Editors: Stephen J. Lurie, MD, PhD, Senior Editor; Phil B. Fontanarosa, MD, Executive Deputy Editor.
JAMA. 2000;284:2449.
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