Eliciting What Matters Most to People: The Whiteboard Initiative Proof of Concept
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RESEARCH LETTER
Eliciting What Matters Most to People: The Whiteboard Initiative Proof of Concept Kathy Kastner1
© Springer Nature Switzerland AG 2020
1 Introduction
• Lack of contextual knowledge and understanding of
Patient-centered care and shared decision making are considered the gold standard to ensure goals of care are met across life’s continuum. Along with this is the trend to involve patients and caregivers in every aspect of healthcare. Care at life’s end is no exception: In an effort to follow patient-centered standards, the living will was established under the federal Patient Self-Determination Act enacted in 1990 [1]. Since then, the living will has been evolving toward eliciting personal and medical wishes for end of life. Strategies to understand personal preferences prompted new iterations of the living will: advance directives, physician orders for life-sustaining treatment (POLST; https ://polst.org/), medical orders for life-sustaining treatments (MOLST; https://molst.org/), and a new communications paradigm, determining values and beliefs and what is important.
• Focus on the unknowns: medical interventions that may
2 Barriers In spite of these efforts, only two in three people have completed any document for end-of-life wishes [2]. Along with the sensitive and emotional factors related to talking about life’s end, barriers [3] have been identified that prevent “taking advantage” of documents that would seem to ensure autonomy in end-of-life decisions: • Confusion about advance directives/POLST/MOLST. • Terminology that can confound or confuse, e.g., “a natu-
ral death” interpreted as having the same parameters as “a natural birth”.
* Kathy Kastner [email protected] 1
Université Laval, 2325 Rue de l’Université, Quebec, QC G1V 0A6, Canada
repercussions of interventions.
or may not be required, crises that may or may not happen, decisions that may or may not arise. • Values and beliefs, goals of care: abstract concepts [3]. • “What’s important” may not reveal desired information. • Healthcare professionals’ discomfort with conversations [4].
3 Alternative Approach UCSF palliative care doctor Rebecca Sudore’s lecture, End of Life Decisions and Next Tuesday’s Food [5] posits that the answer to the question of a meal that is a week away, “it depends,” can also be applied to hypothetical questions about future healthcare decisions. A different approach to introducing end-of-life conversations theorized that changing the focus of end-of-life conversations and planning from what is uncertain and unknown to what is certain and known would potentially remove identified barriers, simplify eliciting insights toward improving the end-of-life journey for all stakeholders, and be effective in supporting a cognitive behavior change in end-of-life planning.
4 Methods and Results A proof-of-concept tool to aid in end-of-life conversations was conceptualized and designed. The tool needed to be low technology, interactive, portable, scalable, translatable on social media, and have po
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