Patient and Caregiver Perception of Shared Decision Making in the Serious Illness Conversation

Abstract

Background: The Institute of Medicine finds that patients facing serious illness have higher end-of-life quality when care plans incorporate their values, goals and preferences. A higher quality of life can be achieved by care that includes effective clinician-patient communication early in the disease trajectory. Shared decision making (SDM) among providers, caregivers and patients requires communication that considers patient’s values and preferences as well as the best clinical evidence to determine the best course of action. SDM is an essential part of an effective serious illness conversation. As straightforward as this approach to communication may appear, many barriers, on the part of the patient and family, the provider, and the system impair medical decision making. To overcome these challenges, the Serious Illness Conversation (SIC) Guide can be used to help assure that SDM is accomplished. The SIC Guide, developed and rigorously tested at the Dana-Farber Cancer Institute, was designed to systematically guide clinicians through the difficult conversation with patients facing serious illness and potential treatment decisions. Objective: To evaluate patient and caregiver perception of shared decision making (SDM) when discussing goals of care, in the context of a serious illness, between the patient and clinician using a systematic tool to guide the conversation. Design: Program evaluation with observational and quantitative descriptive methodologies Setting: Neuroscience and medical-oncology acute care floors in a medium-sized hospital in rural Colorado Participants: Five patients and 13 caregivers took part in a goals of care conversation with the provider using the SIC Guide to facilitate the conversation. Measurement: Patient and caregiver perception of SDM measured with the CollaboRATE survey. This validated survey evaluates three dimensions of SDM: explanation of health issue, listening for what matters most to the patient, and integration of what is important to the patient in the care plan. Results: Mean survey score for all participants is 8.50 with a standard deviation of 0.84. Maximum mean score is 9. Percentage of participants who gave perfect scores is 67%. Conclusion: From the patient and caregiver perspectives, SDM is achieved when providers use the SIC Guide to facilitate the goals of care discussion.