||1R21CA234708-01A1 Interpret this number
||Massachusetts General Hospital
||Videos for Advance Care Planning in Young Adults
According to the most recent data, 72% of adolescents and young adults (AYA) with advanced cancer
die in the intensive care unit without receipt of palliative care, despite the evidence suggesting palliative care
improves the dying experience. The Institute of Medicine report "Dying in America" called for the development
of interventions to increase effective advance care planning (ACP) and shared decision making among AYA.
Such interventions aim to help AYA participate actively in their health care decision making and thereby
receive medical care "consistent with their values, goals, and informed preferences."
Traditional ACP relies on clinicians' ad hoc verbal descriptions of treatment options. This approach is
limited because in patients of all ages goals-of-care options are difficult to envision, information provided to
patients is variable, and verbal explanations of medical care and interventions are less effectual given literacy
and language barriers. Additionally, AYA are at a unique developmental stage, with emerging independence
and potential dismissal of authority combined with a sense of invulnerability, making use of new
communication strategies even more important in this population. AYAs may uniquely benefit from use of
technology to augment information provided by traditional medical interactions.
Our research group has developed and studied video decision support tools to assist patients with
serious illness in making important decisions about their medical care. Video can improve decision making by
providing visual information to present complex medical and emotional scenarios; a growing body of evidence
supports the feasibility and effectiveness of using video aids in medical decision making. Video enhances
patients’ understanding of complex health information by providing realistic visual images that can facilitate
their education about hospitalizations, ICU admissions, and medical procedures, such as resuscitation and
intubation, as well as the use of palliative care services.
We have developed a video decision aid for AYA patients with serious illness. The tool reviews
treatment preference and goals of care for AYA with advanced cancer. The overall objective of this R21
proposal is to conduct a randomized controlled trial of the video (vs. enhanced usual care) in 50 dyads of AYA
with advanced cancer and their caregivers. Our hypothesis is that the video better informs patients and
caregivers of their options, leads to more ACP conversations, engagement and documentation, and leads to
more congruent decision making between AYA and caregivers. Demonstrating the effectiveness of using a
video decision aid first in this pilot provides evidence for conducting a larger, multi-site trial integrating such a
video into clinical practice.