A $2.9 million University of Rochester Medical Center research project will test a powerful new intervention to improve the quality of discussions among oncologists, patients, and families in the context of incurable cancer, and to promote patient- and family-centered care.
The specific goals of the study are to improve communication in a way that respects patients’ wishes, meets their needs for information while also reducing psychological distress, and to help physicians and patients manage strong emotions and achieve a sense of peace.
“This research has the potential to help thousands of people with advanced cancer facing a difficult prognosis and complex medical decisions,” said Ronald Epstein, M.D., principal investigator and a professor of Family Medicine, Psychiatry and Oncology at URMC. “They often have unanswered questions, unmet emotional needs, and are not sufficiently involved in choices regarding their care. But perhaps most significantly, both the patient and the physician are facing great uncertainty. They may want simple answers when there are none.”
Crafting a care plan for advanced cancer requires frank and clear information about what to expect. However, this is particularly difficult for patients and also for physicians because they often feel they have failed in some way, or wonder if they can make an accurate prognosis, Epstein said.
Another problem is achieving clarity about the patient’s wishes to be involved in health care decisions every step of the way. Yet often these talks do not take place with enough specificity, Epstein said, or if they do they still result in misunderstandings.
Epstein has developed methods to evaluate and provide feedback to patients, caregivers and physicians on their communications skills. Patients and caregivers will be coached on such things as forming questions that make the best use of their visit time, and to elicit clear information. When the project is completed, Epstein and co-investigators hope to have an intervention that can be easily disseminated.
Researchers tested the intervention on a group of URMC oncology fellows, who rated it highly.
“Balancing hope with realism is hard,” said Supriya Mohile, M.D., an oncologist at the James P. Wilmot Cancer Center at URMC, and a co-investigator on the grant. “The question of prognosis is so complex because although we do have information about the outcomes for large groups of patients, the answer for any one individual involves much uncertainty. Already our pilot study has given us valuable insight about how to improve the way we talk about what to expect in the future and promote a good discussion. We look forward to improving our communication skills even further.”
Researchers plan to include up to 900 patients and caregivers in the study, with approximately 450 in Rochester and 450 in California. Thirty oncologists will participate – 15 from the Rochester area. Patients, caregivers and physicians will agree to have their consultations audio recorded.
Enrolled doctors, patients and caregivers will be assigned to either usual care or to a group that receives the communication interventions. Researchers will measure the outcomes derived from the audio recorded doctor-patient visits, looking specifically at how well the cancer patients and their oncologists are aligned. Doctors will be evaluated on how they discuss patients’ concerns, including prognosis and treatment options.
From the patient perspective, researchers will assess quality of life and well-being at the start of the study and every three months. They will also look at the medical care received, and the overall involvement of family members in the care of their loved ones.
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