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

Thank you.