University of Missouri, Columbia, MO
Debra Parker Oliver, Audrey S. Wallace, Karla Washington, George Demiris, Margaret F. Clayton, Maija Reblin, Lee Ellington
Background: The philosophy behind hospice care recognizes the patient and family as a unit of care and embraces their role in decision making. Research has primarily focused on physician and patient decision making yet, most decisions made at the end of life are between nurses, patients, and family members. The majority of hospice care is delivered in patient homes and little is known about these interactions. The goal of this study was to evaluate the shared decisions within the home environment between hospice nurses and patients/family. Methods: A secondary qualitative analysis of audio recordings of visits by 65 home hospice nurses to cancer patients in 11 hospice programs was conducted. Recordings were transcribed and coded by two team members using a pre-established nine element model of shared decision making. Elements of the model included: Defining a problem and options, discussing risks and benefits, focusing on how the options relate to patient values, the patient’s or family member’s ability to follow through, the provider’s recommendation, clarification of the understanding of options, and a follow-up plan. Results: Hospice nurses worked with families on an average of four problems in a mean visit time of 30 minutes. The hospice nurses used all the 9 recommended elements of shared decision making during home visits with patients and families however, not all elements were used in every visit. The most commonly used element was defining a problem, and the least used element was the assessment of patient and family understanding of options. Conclusions: Decision making for those enrolled in hospice occurs between nurses and patients/families. While ultimately responsible for the decisions that are made, physicians have limited interaction with the patient and family in their natural setting. Hospice nurses on the other hand, experience the impact of decisions in the environment in which they are implemented. Hospice nurses are the physician’s eyes and ears behind the closed doors of the home and can be valuable partners as they work with families on critical decisions several times each week.
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Abstract Disclosures
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First Author: Maija Reblin
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