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Original Research

A Pilot Trial of Decision Aids to Give Truthful Prognostic and Treatment Information to Chemotherapy Patients with Advanced Cancer

Original research

A Pilot Trial of Decision Aids to Give Truthful Prognostic and Treatment Information to Chemotherapy Patients with Advanced Cancer

Thomas J. Smith MDCorresponding Author Contact Information, a, E-mail The Corresponding Author, Lindsay A. Dow MDa, Enid A. Virago MDiva, James Khatcheressian MDa, Robin Matsuyama PhDa and Laurel J. Lyckholm MDa

a Massey Cancer Center of Virginia Commonwealth University, School of Education, VCU School of Medicine, Department of Social and Behavioral Health, and the Virginia Cancer Institute, Richmond, Virginia

Received 13 September 2010; 

accepted 29 November 2010. 

Available online 2 April 2011.

Abstract

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.

Article Outline

Methods
Results

Primary Outcome

Secondary Outcomes

Discussion
Acknowledgements
Appendix A

Decision Aids

References

Patients with incurable disease state that they want truthful information about their diagnosis, treatment options, and course even if the outlook is poor;1 but most patients never receive information from their physicians about prognosis2 or even imminent death.3 U.S. physicians do not disclose prognosis at least half the time and feel unprepared to have these discussions.4 Not having a discussion about imminent death is associated with worse quality of care, worse quality of life, worse caregiver quality of life,5 and over $1,000 more in medical care cost in the last week of life.6 Physicians are reluctant to give people poor prognostic information7 for fear of dashing hope,8 and Web sites such as

04/02/11  

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