What’s Known on This Subject:
Discussing end-of-life (EoL) care with adolescents and young adults (AYAs) is difficult. Often, such conversations are delayed or avoided, but AYAs contemplate EoL issues and want to make decisions about their care. Few established resources exist to help this process.
What This Study Adds:
Results support the use of a developmentally appropriate document that allows AYAs an opportunity to share their choices about EoL care and how they would like to be remembered in the future.
Each year, more than 11
000 adolescents and young adults (AYAs), ages 15 to 34, die of cancer and other life-threatening conditions1
and the number of youth with chronic and life-limiting conditions is increasing.2
Determining appropriate care for a young individual at the end-of-life (EoL) can be challenging. To facilitate the transition from curative treatments to EoL care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the course of illness.3–5
Although some provider and parent discomfort exists surrounding discussions of death and EoL care,6–9
AYAs have expressed a desire and the ability to share their values, beliefs, and preferences for treatment at the EoL.10–17
Moreover, the American Academy of Pediatrics, the Institute of Medicine, and the World Health Organization recommend involving AYAs in care decisions as much as possible, as they are developmentally and emotionally ready.5,18,19
During normal adolescent development, individuals gain independence, formulate their self-identity, strengthen peer and romantic relationships, and define their future role in life.20
Having a life-threatening illness challenges healthy adolescent development by compromising independence from parents or guardians, interfering with school and social interactions, and potentially causing physical and emotional changes, arresting further development.16,21
Allowing adolescents to be more involved in their health care decision-making processes, especially at EoL, can help reestablish their burgeoning autonomy and sense of purpose.
Advance care planning documents and advance directives provide patients with the opportunity to express their preferences for how they want to be treated if they cannot speak for themselves. Allowing AYA involvement in advance care planning can help parents and health care agents make informed decisions, alleviate distress, avoid decisional regret, and perhaps improve the patient’s quality of life by respecting their religious, cultural, and familial values and beliefs.22,23
Yet, few resources exist to aid AYAs in addressing their changing physical, emotional and social needs and wishes around EoL.
In 2008, Wiener et al10
published a study evaluating Five Wishes, an advance directive document that has shown success in facilitating AYA EoL conversations. Five Wishes was the only advance care planning guide found at the time that included issues of comfort, future planning, and spirituality along with choosing a durable power of attorney and specific life support options. Most participants reported that an advance directive like Five Wishes would be “helpful” or “very helpful” to themselves (95%) and to others (90%). Interestingly, they identified items concerning how they wanted to be treated and remembered as more important than items concerning specific medical decision-making. Using the feedback and recommendations obtained, the study team designed an AYA-specific advance care planning guide, My Thoughts, My Wishes, My Voice (MTMWMV).
This study was designed to compare MTMWMV to Five Wishes for further refinement of AYA preferences. The study also evaluated the feasibility and clinical benefits of providing a developmentally appropriate advance care document for seriously ill AYAs.