Adolescents and young adults want to be more involved in specific aspects of their end-of-life care and found a planning document to aid in those decisions helpful, according to the results of a recently published study.
The study, which was published online in Pediatrics, took two previously developed advance care planning guides and queried adolescents and young adults at the end of life aged between 16 and 28 years about their opinions on the content.
“This can be a critical developmental phase during which adolescents and young adults are negotiating greater independence and autonomy, formulating their self-identity, strengthening peer and romantic relationships and defining their future role in life,” said Lori Wiener, PhD, director of the psychosocial support and research program at the Center for Cancer Research, National Cancer Institute. “Terminal illness challenges each of these factors.”
In prior studies, Wiener and colleagues evaluated Five Wishes, an adult advanced care planning guide that had had some success in the adolescent and young adult population (AYA). Based on the results of that research, the researchers developed an AYA-specific planning guide called My Thoughts, My Wishes, My Voice (MTMWMV). In the current study, the two guides were compared to evaluate whether or not they could be improved.
The Five Wishes document is organized into five “wishes” discussing various aspects of care. Patients are asked to cross out statement they do not agree with. The MTMWMV document is expanded to include more questions about pain, hospice, and assisted living. The layout also includes more space for open-ended questions.
Fifty-two participants with metastatic or recurrent cancer or HIV infection were provided with random pages from each of the planning documents. Participants were asked their opinion on the documents and to make suggestions on changes to the documents’ content, design, format, and style.
Fifty-four percent of respondents indicated that they preferred the MTMWMV planning guide compared with 37% who preferred the Five Wishes planning guide.
When looking at more specific aspects of the documents, the respondents were split. For example, respondents ranked the MTMWMV document as more appropriate when discussing how they would like to be treated, but ranked the Five Wishes document as more appropriate when discussing their comfort.
The researchers summarized these results finding four basic goals for a more tailored AYA planning guide that they named Voicing My Choices:
• Designating the type of medical treatment AYA wish to receive.
• Designating care.
• Designating what information is shared with family and friends.
• Deciding how they would like to be remembered.
“Having an advance care planning guide tailored to AYA concerns and needs can help both parents and providers start difficult conversations regarding end-of-life care,” Wiener said. “By providing AYA with a place to designate which life support treatments they would or would not want, and under what circumstances, Voicing My Choices allows individuals to maintain control in how much they want to endure, while still allowing them to preserve their hope in instances where they feel life support treatments are worth trying.”
