CONFRONTING THE DEATH TABOO: DEVELOPMENT OF LANGUAGE AND PROCESSING EXERCISES ACCEPTABLE FOR CONSTRUCTING DEATH TRADE-OFF PREFERENCES

Purpose: Some medical decisions require patients to weigh the trade-off between a quick death and shorter life versus a prolonged death and longer life.  However, when confronted with this trade-off, people often have negative affective responses making it difficult for them to reason through the salient features and make an unbiased decision.  The fields of medicine and decision making have not yet figured out the best way to approach these ‘taboo’ trade-offs.  This project aimed to develop a combined language and process tool to facilitate patients’ consideration of this difficult trade-offs while minimizing negative affective response.

Methods: We utilized the input of 20 healthy participants to develop a written tool with a language and process combination which would allow patients to approach this difficult trade-off more easily.  Using implantable cardioverter-defibrillators (ICDs) as the prototype decision, we developed four language scenarios and three process scenarios. The initial four language scenarios were based on: 1) language from a previous qualitative study of ICD decision making; 2) language from an article on quality vs. quantity by Anne Stigglebout; 3) language from oncotalk.org, a palliative care communication website; and 4) a visual representation of the patterns of functional decline based on a JAMA article by Joan Lunney.  The initial processing exercises were based on: 1) an imagined futures exercise; 2) a pro/con list similar to the Ottawa decision coaching guide; and 3) a visual analog scale.  Through a process of iterative qualitative interviews, the investigators modified, combined and reduced from the initial 4 language and 3 process scenarios into a final tool with one language and one process guide. 

Results: Participants easily identified features they liked and disliked.  A language scenario with a combination of a visual representation of patterns of functional decline combined with an explanation based on principles from oncotalk.org was the most acceptable.  An imagined futures worksheet combined with elements from the Ottawa Decision Coaching guide was the most acceptable processing exercise.

Conclusions: Participants were able to identify a language and a process which made confronting this taboo trade-off more acceptable.  This final version will be tested in second phase along with measures to test their affective response.