Patient partnership in advance care planning

Joan Forte-Scott fortejoan@gmail.com
Vanessa Deen Johnson vnsajohnson@gmail.com

Abstract

Advance Care Planning assures individuals receive the care they want, reduces family burden and suffering and helps alleviate moral distress for staff and providers. However, like many organizations, SHC lacked a cohesive approach to advance care planning and patient/family perspective did not serve to guide the process. A variety of staff were involved without clear accountability. Patients were approached when hospitalized and were fearful of the ramifications. Traditional tools were utilized and were not easy for the layperson to understand, culturally friendly or comprehensive. As a result patients were provided more care at end of life then they desired, families were stressed by decision making, providers were burning out and cost to the organization was high. Led by an administrator and a physician, a multidisciplinary team was assembled to do improvement work. This included a quality improvement project with BMT patients, new tools to document advance care plans, new processes and work flows, and new roles and structures. Patient and family voice informed each element of the work through workgroup membership, Patient and Family Advisory Councils, focus groups and community sessions and interviews and consultation. As a results, studies show an increase in advance care planning, increased understanding of end of life concerns and priorities by physicians and greater patient and family comfort in documentation and discussion with providers.

This presentation will trace the work threads, highlighting the contributions of patients and families. Innovative tools that can be used in other facilities will be shared. Research and quality data will be discussed. A patient who participated in the work will co- present, providing their viewpoint and videos from other patient and family contributors will be shown. 
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