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Hope and Prognostic Disclosure

Jennifer W. Mack, Joanne Wolfe, E. Francis Cook, Holcombe E. Grier, Paul D. Cleary, Jane C. Weeks

From the Departments of Pediatric Oncology and Medical Oncology and the Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Department of Medicine, Children's Hospital; Department of Epidemiology, Harvard School of Public Health; Department of Health Care Policy, Harvard Medical School; and Department of Medicine, Brigham and Women's Hospital, Boston, MA

Address reprint requests to Jennifer W. Mack, MD, MPH, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115; e-mail: Jennifer_mack{at}dfci.harvard.edu

Purpose: Physicians sometimes selectively convey prognostic information to support patients’ hopes. However, the relationship between prognostic disclosure and hope is not known.

Patients and Methods: We surveyed 194 parents of children with cancer (overall response rate, 70%) in their first year of treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA), and we surveyed the children's physicians. We evaluated relationships between parental recall of prognostic disclosure by the physician and possible outcomes, including hope, trust, and emotional distress. Our main outcome was assessed by asking parents how often the way the child's oncologist communicated with them about the children's cancers made them feel hopeful.

Results: Nearly half of parents reported that physician communication always made them feel hopeful. Parents who reported receiving a greater number of elements of prognostic disclosure were more likely to report communication-related hope (odds ratio [OR], 1.77 per element of disclosure; P = .001), even when the likelihood of a cure was low (OR, 5.98 per element of disclosure with likelihood of a cure < 25%; P = .03). In a multivariable model, parents were more likely to report that physician communication always made them feel hopeful when they also reported receipt of more elements of prognostic disclosure (OR, 1.60; P = .03) and high-quality communication (OR, 6.58; P < .0001). Communication-related hope was inversely associated with the child's likelihood of cure (OR, 0.65; P = .005).

Conclusion: Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.

Supported by a fellowship from the Agency for Healthcare Research and Quality (T32 HS00063), an American Society of Clinical Oncology Young Investigator Award, and a fellowship from the Glaser Pediatric Research Network (J.W.M.).

Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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