Most cancer patients do not have an explicit discussion about prognosis and treatment despite documented adverse outcomes. Few decision aids have been developed to assist the difficult discussions of palliative management. We developed decision aids for people with advanced incurable breast, colorectal, lung, and hormone-refractory prostate cancers facing first-, second-, third-, and fourth-line chemotherapy. We recruited patients from our urban oncology clinic after gaining the permission of their treating oncologist. We measured knowledge of curability and treatment benefit before and after the intervention. Twenty-six of 27 (96%) patients completed the aids, with a mean age of 63, 56% female, 56% married, 56% African American, and 67% with a high school education or more. Most patients (14/27, 52%) thought a person with their advanced cancer could be cured, which was reduced (to 8/26, 31%, P = 0.15) after the decision aid. Nearly all overestimated the effect of palliative chemotherapy. No distress was noted, and hope did not change. The majority (20/27, 74%) found the information helpful to them, and almost all (25/27, 93%) wanted to share the information with their family and physicians. It is possible to give incurable patients their prognosis, treatment options, and options for improving end-of-life care without causing distress or lack of hope. Almost all find the information helpful and want to share it with doctors and family. Research is needed to test the findings in a larger sample and measure the outcomes of truthful information on quality of life, quality of care, and costs.
We designed decision aids for patients with incurable cancer and attempted to determine if people would opt for full disclosure about prognosis and treatment. If they opted for full disclosure, we assessed current knowledge about chance of cure, survival, disease response rates, and symptom control, before and after. This pilot trial was done to see if patients would complete a decision aid about their advanced cancer, even if it contained truthful information about their limited prognosis and treatment benefits.
We created state-of-the-art tables of information for patients with advanced breast, lung, colon, and hormone-refractory prostate cancers, based on expert review, external review, and comparison with Up To Date© (available from the authors). The information was approved by all three oncologists involved. We used bar graphs to illustrate benefit, developed for patient education graphs for a randomized study of insurance types and treatment choices9 and in common use on the Web site Adjuvant Online (www.adjuvantonline.org). and  It is similar to what we do with the written medical record, a concise review of diagnosis, prognosis, treatment options, side effects, and when to call the doctor.12
We tested the intervention in a heterogeneous sample of 27 patients recruited through the Dalton Oncology Clinic, which serves a mix of patients from the most discerning third-opinion clinical trial patient to the community cancer patient and provides most of the indigent cancer care in the central Virginia area. The study was done within 3 months in early 2009.
Our primary outcome was the number of patients who would opt for full disclosure once they viewed the decision aid. Our secondary outcomes included the following: the amount of information patients have about cure, response rates, and symptom control; the impact of truthful information on hope, as measured by the Herth Hope Index©13 (HHI) used to assess hope in clinical studies of adults;14 whether the information was deemed helpful to the patient; and whether the patient intended to share the information with a doctor.
Patients were accrued by reviewing the daily clinic list to find patients on treatment for incurable breast, colorectal, non-small-cell lung, or hormone-refractory prostate cancer. Treating oncologists were made aware of the study through e-mail, announcements, the Massey Cancer Center Web site, and individual meetings. All oncologists approached agreed to their chemotherapy patients participating in the study in general, and the primary nurse or treating oncologist was contacted about each eligible patient. Eligible patients were not contacted about the study when the treating oncologist or primary oncology nurse determined that a patient was experiencing significant distress or had significant psychiatric problems or difficulty with adjustment to illness or believed the patient would have great emotional difficulty with the information. The number of patients excluded by each oncologist due to concern about distress was estimated to be less than 10% of the total available but was not measured. Since these patients were not enrolled in the study, we did not collect information about them. A clinical psychologist and a chaplain were available to any patient who experienced distress during or after the interview process. The interview questions and intervention were administered by a member of the study team who was not the patient's oncologist or involved in his or her care. The interview team included a graduate student who was also a minister and chaplain (E. A. V.), a medical student with special training in empathic communication (L. A. D.), and/or the principal investigator (T. J. S.); usually one interviewer was present (L. A. D. or E. A. V.).
The interview sequence included screening questions to ensure that the patient wanted full information, sociodemographic questions, a pretest about the chance of cure and treatment effect for a patient with their illness, and the HHI. Next, the decision aid was administered. Immediately afterward, the patient completed a posttest, the HHI, and information about how he or she would use the information.
We modeled this approach on the Ottawa Decision Support Framework, a clinically tested decision-making tool designed to inform decisional conflict, and  defined as uncertainty about which course of action to take when the choice involves balancing gain, risk, loss, regrets, or challenges to personal life.17
Our study was approved by the Massey Cancer Center Protocol Review and Monitoring System and the VCU Institutional Review Board for the Conduct of Human Research. Because it was not a clinical trial, no clinical trial registration was required.
The patients were typical for our urban, tertiary referral, and safety net hospital and National Cancer Institute–designated cancer center, as shown in Table 1.