This report describes 386 patients who were recruited between
October 2002 and February 2008 and died during the course of
the study, such that we could analyze their end of life medical
care. We excluded participants in clinical trials (n=37), as their
treatment preferences and therapeutic expectations often differ
from those of patients receiving standard chemotherapy or
supportive care.17 Patients who had died as of February 28, 2008
did not differ significantly in type of cancer or receipt of
chemotherapy from participants who lived. However, decedents
had worse performance status, more symptoms, and greater
awareness of terminal illness and were more likely to be male,
unmarried, uninsured, less educated, younger, and non-white
(all P<0.05).
Participating sites included Yale Cancer Center, the Veterans
Affairs Connecticut Healthcare System Comprehensive Cancer
Clinics, the Parkland Hospital Palliative Care Service, Simmons
Comprehensive Cancer Center, Massachusetts General Hospital,
Dana-Farber Cancer Institute, Memorial Sloan Kettering Cancer
Center, and New Hampshire Oncology-Hematology. The
Dana-Farber/Harvard Cancer Center’s Office for Human
Research Studies coordinated the study, and all patients provided
written informed consent.
Patients were eligible to participate if they had metastatic cancer
that had progressed through at least one chemotherapy regimen,
had a physician formulated prognosis of six months or less to
live, were aged at least 20 years, had an informal caregiver, and
were assessed by clinic staff and interviewer as having adequate
stamina to complete the interview. We excluded
patient-caregiver dyads in which either the patient or the
caregiver refused to participate, met criteria for dementia or
delirium (by neurobehavioral cognitive status examination), or
did not speak either English or Spanish.
Patients participated in a baseline interview in English or
Spanish for a $25 (£15; €18) payment at a time that was close
to when decisions about chemotherapy were being made. We
reviewed medical charts at the time of study enrollment and
recorded current use of chemotherapy. Research assistants
confirmed patients’ performance status and prognosis of six
months or less with physicians. We did not record the number
and length of previous and subsequent treatments. After each
patient’s death, we conducted a chart review and postmortem
interview with the patient’s caregivers to confirm the medical
care received at the end of life, the patient’s place of death, and
whether the patient died in his or her preferred place of death.
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