SAN ANTONIO – Live-streamed Facebook videos stored on YouTube are a novel and forward-thinking approach for individuals to learn about end-of-life (EOL) planning and decision-making from the comfort of their own home, according to a study presented at the 2016 San Antonio Breast Cancer Symposium (SABCS).1
“Young women diagnosed with metastatic breast cancer face distinct concerns,” said Michelle Esser, senior program manager for research and advocacy, Young Survival Coalition (YSC), New York, NY. “YSC is the premier organization dedicated to young women affected by all stages of breast cancer.”
A survey conducted from September 2013 through February 2013 demonstrated a lack of knowledge with respect to end-of-life planning. Overall, 67% of respondents reported that legal matters and EOL planning are important, 57% sought information on the topic, and 22% stated such information is difficult to find. Nearly 75% of respondents said they do not discuss EOL matters with their health care team members.
Of note, despite acknowledging the importance of EOL planning, more than one-third reported that they had not prepared any EOL legal documents and 88% indicated that hospice had not been discussed with them. A similar proportion had not sought information about hospice.
Based on these findings, YSC sought to develop a tool that educates young women with metastatic breast cancer, their loved ones, and health care providers in regards to EOL planning and decision-making, with the goal of ultimately removing the stigma around these conversations so the young woman’s intentions are communicated and the appropriate plans are made.
“YSC created a 3-part EOL series to focus on various aspects surrounding death and dying,” Ms Esser explained. “The first part was called ‘The Research and Benefit of Introducing Palliative Care Early’ and featured Kate Adelstein [PhD candidate] of the University of Virginia.”
The second part, called “Let’s Have Dinner and Talk About Death” was led by Michael Hebb, who focused on ways to put everyone at ease and have the critical, though difficult, EOL conversation. The third part, called “The ‘Nuts and Bolts’ of End of Life Planning”, led by Stephanie Fajari, Esq, of the Cancer Legal Resource Center, discussed practical decision-making for EOL planning.
Each part was live-streamed on Facebook and then housed on YSC’s YouTube channel. Overall, the videos have been viewed a total of 847 times, and 35 nurses and social workers sought continuing education credit for participating.
Survey results on the benefit of this video series is anticipated by the end of 2016.
1. Esser MR, Rowe J, Schapire T, Lewis S. Live-streamed videos address EOL planning, decision-making. Poster presented at: 2016 San Antonio Breast Cancer Symposium; December 6-10, 2016; San Antonio, TX.