How I Wish to be Remembered: The Use of an Advance Care Planning Document in Adolescent and Young Adult Populations

Abstract

Background Discussing end-of-life (EOL) issues is difficult with any population. These conversations are even more challenging with adolescents and young adults due to the poignancy of the situation and the need for developmentally appropriate language. Objective To explore whether adolescents and young adults living with a life-limiting illness find it acceptable and helpful to have a planning document to share their wishes and thoughts regarding EOL care. If so, to learn about specific concerns adolescents and young adults feel are important to include in such a document. Methods Adolescents and young adults with metastatic cancer or pediatric human immunodeficiency virus (HIV)-1 infection were presented Five Wishes®, an advance directive document for adults. Each participant was asked to critically evaluate each wish in terms of whether the concepts within were considered (1) appropriate to ask individuals the participant’s age; (2) helpful for other people the participant’s age to think about; (3) helpful to the participant to think about; (4) stressful to contemplate. Participants were also asked to suggest modifications and additions to the document. Results Twenty patients completed the survey. Ninety-five percent of the participants reported that an advance directive like Five Wishes® would be “helpful” or “very helpful” to themselves, 90% stated that the document would be helpful to others, and no patients found talking about the issues in Five Wishes® “stressful” or “very stressful.” Participants were more interested in items concerning how they wanted to be treated and remembered than items concerning medical decision-making. Conclusions An advance care planning document may be appropriate and helpful for adolescents and young adults living with a serious illness. Future research should further validate the preferences identified by participants and explore whether an age-appropriate document can improve communication with family and staff in EOL care.

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology

“…227 An advance care planning document is recommended for terminally ill AYA patients with metastatic cancer. 232,236 Ongoing psychosocial support is extremely important during the transition to end-of-life care.…”

Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues

“…181 Although it is often difficult for healthcare providers to initiate end-of-life discussions, research suggests that adolescents are often prepared and willing to discuss these issues. [182][183][184] Health professionals should consider several factors when discussing death and end-of-life issues with a young person, including the patient's developmental level and decision-making capacity, the patient's conceptualization of death (including personal values), the family's understanding of death (including religious and cultural beliefs), the patient's and family's usual ways of coping, and expectations for the actual death. [185][186][187] These discussions need to be a routine part of care, because patients' thinking about death is likely to change markedly during the developmental period of adolescence and early adulthood.…”

Adolescent and Young Adult Oncology

“…175 An advance care planning document may be appropriate and helpful for terminally ill AYA patients with metastatic cancer. 180 …”