Aging with Dignity, the creator and distributor of the nationally-known Five Wishes advance directive, introduces Voicing My Choices, the US’ first advance care planning guide specifically designed for adolescents and young adults. The new document was created based on findings from researchers at the National Institutes of Health (NIH) and published in the journal Pediatrics.
“Living with a serious illness and approaching the end of life is always difficult, but the challenges are even greater when the patient is young,” Aging with Dignity President Paul Malley said. “Sometimes the standard advance care planning documents don’t meet all the needs of younger patients. That’s why Voicing My Choices was created based on the findings released today.”
A study conducted at the National Institutes of Health included participants age 16-28 living with metastatic or recurrent cancer or HIV infection. It showed that nearly all participants (95%) viewed the Five Wishes advance directive as being helpful. However, the participants identified ways the document could be made more appealing for the younger generation. They also viewed items concerning how they want to be treated and remembered as more important than items concerning specific medical decision-making.
Voicing My Choices includes the topics that were identified as most important by young people. It also incorporates other recommendations gleaned from the study, such as using developmentally appropriate language, clarification of medical concepts, and the inclusion of friends in several sections. The document also responds to the preference of young people to have both closed (yes/ no) questions and open-ended questions, in addition to guidance on document design, colour, and simplified wording.
The multi-year study that culminated in the creation of Voicing My Choices was directed by Lori Wiener, PhD, Head of the Pediatric Psychosocial Support and Research Program in the Pediatric Oncology Branch of the National Cancer Institute. “As researchers, we’re always looking for ways to better communicate with hard-to-reach patient groups like adolescents and young adults,” Wiener said. The goal of clinical research is to produce something tangible that can be used to help patients, families, caregivers and healthcare providers. Voicing My Choices provides a new tool that allows youth living with serious illnesses an opportunity to express and share their preferences for how they wish to be cared for and remembered,” Wiener said.
Voicing My Choices is available through the non-profit organization Aging with Dignity. For information or to request the document: Visit www.agingwithdignity.org/vmc Or call toll-free (888) 5-WISHES (594-7437). Additional resources include the Five Wishes advance directive for adults and the My Wishes guide for young children.