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
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