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End-of-life d ecisions are not in black and white By Trisha Paul and Jennifer Xu. What is Grayscale ? A series of video aids for patients approaching end-of-life told by patients who are themselves undergoing a similar ordeal. Naming Grayscale
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End-of-life decisions are not in black and white • By Trisha Paul and Jennifer Xu
What is Grayscale? • A series of video aids for patients approaching end-of-life told by patients who are themselves undergoing a similar ordeal
Naming Grayscale • End-of-life decisions are never in black and white • Design of website and videos, which themselves are in grayscale, reflect the context-dependent nature of these decisions • Website intended for aging population, who themselves have turned various shades of gray.
Awareness • Video commercial will encourage viewers to visit the site by alerting them to the urgency and importance of thinking ahead about end-of-life wishes • Online advertisements will direct web surfers to peruse perspectives compiled on the site • Future research into the site’s adequate exploration of topics and overall success rate will encourage physicians and health professionals to refer patients to the website as a resource
Conversation • Commenting on the testimonials of others • Raising general discussion questions regarding how to think about these topics • Submitting their own multimedia testimonials • Multimedia capabilities allow for flexibility so participants can choose the method they are most comfortable with (speaking, writing, images, video)
Encouragement • Provide real human examples of how people think about the questions in these forms • Materialize these abstract concepts through tangible and relatable perspectives • Put a face and give voice to the untold thoughts about end-of-life issues
Cultural Considerations • Taboos: • -All content screened prior to appearing on website • Needs of specific racial/ethnic groups: • -Strives to represent diverse perspectives/backgrounds • Disclaimer: • -Specification that all posts monitored, not reflect view of initiative but rather of everyday individuals • Language: • -Videos available in English, YouTube captioning and translations follow to promote accessibility of content
Universal Accessibility • Low health literacy: • -Simplified guiding questions understandable in lay terms to encourage engagement/conversation • Low English literacy: • -Diversity of testimonials to target different levels of English literacy • Cognitive/physical disability • -Multimedia samplings provide different methods of receiving the testimonials
Resourceful • Create a centralized space with prevalent resources about these forms and how to approach them • Partner with organizations by inviting them to get involved in sharing their perspectives
Feasibility/Viability • Requires initial development of website • Subsequent maintenance of website: • -Testimonials be uploaded/updated by webmaster • -Comments must be moderated by webmaster
Originality • Bring end-of-life resources to life with multimedia • Importance emphasized by real people • Unravel mysterious language of medical documents
Benefits • Physicians can point patients to Grayscale rather than having to breach these conversations from scratch • -gives entire process more consistency rather than depending solely on the empathic qualities of physician • Empowers patient to make own end-of-life decisions in an educated manned • Patients unable to read small fonts can listen to videos
Benefits • Possibility to reduce health care costs, since it is projected that the number of patients who will select invasive procedures when there is very little hope for long-term survival or high quality of life will go down
Future Directions • Current website is merely a sample of the collection • Interviews with variety of people with a number of end-stage diseases • Space for visitors to share their personal experiences with these decisions in text, audio, or video • Promote comfortable navigation through process
Future Directions • Conduct peer-reviewed studies on effectiveness of videos: • -whether patients legitimately find them helpful • -whether physicians would recommend as patient resource • -whether videos are truly neutral and do not bias patients toward one type of treatment over another