Prognosis Communication in Serious Illness: Perceptions of Older Patients, Caregivers, and Clinicians

Authors

  • Terri R. Fried MD,

    1. From the *Clinical Epidemiology Unit, VA Connecticut Healthcare System and Department of Medicine, Department of Epidemiology and Public Health, and Program on Aging, Yale University School of Medicine, New Haven, Connecticut
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  • Elizabeth H. Bradley PhD,

    1. From the *Clinical Epidemiology Unit, VA Connecticut Healthcare System and Department of Medicine, Department of Epidemiology and Public Health, and Program on Aging, Yale University School of Medicine, New Haven, Connecticut
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  • John O'Leary MA

    1. From the *Clinical Epidemiology Unit, VA Connecticut Healthcare System and Department of Medicine, Department of Epidemiology and Public Health, and Program on Aging, Yale University School of Medicine, New Haven, Connecticut
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  • Supported by Grants PCC 98–070 from the Veterans Affairs HSR&D service and P30AG21342 from the Claude D. Pepper Older Americans Independence Center at Yale, a Career Development Award from the Veterans Administration; the Paul Beeson Physician Faculty Scholars Award and National Institute on Aging Grant K02 AG20113 (to Dr. Fried); and a Donaghue Medical Research Foundation Investigator Award (to Dr. Bradley). Presented in part at the 2001 Annual Meeting of the American Geriatrics Society.

Address correspondence to Terri Fried, MD, Geriatrics and Extended Care, 240, VA Connecticut Healthcare System, 950 Campbell Avenue, West Haven, CT 06516. E-mail: terri.fried@yale.edu

Objectives:

To examine agreement between patients, caregivers, and clinicians regarding prognosis communication and to examine patients' and caregivers' desire for prognostic information.

Design: Cross-sectional survey.

Setting: Participants' homes.

Participants: Two hundred fourteen persons aged 60 and older with a limited life expectancy secondary to cancer, congestive heart failure, or chronic obstructive pulmonary disease; caregivers; and clinicians.

Measurements: Patient–clinician and caregiver–clinician agreement about the occurrence of prognosis discussions and patient and caregiver desire for prognostic information.

Results: In 46% of patient/clinician and 34% of caregiver/clinician pairs, the clinician reported saying that the patient could die of the underlying disease, whereas the patient or caregiver reported no discussion. In 23% of patient/clinician and 30% of patient/caregiver pairs, the clinician reported discussing an approximate life expectancy, whereas the patient or caregiver reported no discussion. Of 205 patients who reported no life expectancy discussion, 40% did not want this discussion. Whereas 83% of those believing they had 1 year or less to live wanted to discuss prognosis, 79% of those believing they had 1 to 2 years, 53% of those believing they had 2 to 5 years, and 50% of those believing they had more than 5 years or who were unwilling to answer wanted this discussion (P=.007).

Conclusion: Although clinicians report that they are discussing prognosis, patients and caregivers frequently do not corroborate these reports. Furthermore, many patients do not want prognostic information. Despite previous reports concluding that patients want full disclosure about their illness, many seriously ill older persons and caregivers may not be ready or able to receive prognostic information.

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