End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice

Abstract

A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.

Palliative care considerations and practices for adolescents and young adults with cancer

“…29,30 The combination of psychosocial vulnerabilities and physical challenges means that ensuring high-quality EOL communication is crucial. 31 Around 86% of AYAs report not only wanting to know about the terminality of their condition but also wanting to participate in discussions regarding EOL care. 32 These conversations affect how patients live at the end of their lives, how they die, and how their families grieve.…”

“…33 When AYAs' preferences are not known to their families, AYAs may suffer from anxiety, emotional isolation, and inadequate pain management, and families may experience distress, negative psychosocial adjustment, and poorer outcomes. 31 Some health care providers attempt to shield AYAs from distress or have difficulty in managing personal emotions during EOL discussions. 31 AYAs can be perceived as not being competent to make such decisions, further adding to their exclusion in EOL planning.…”

“…31 Some health care providers attempt to shield AYAs from distress or have difficulty in managing personal emotions during EOL discussions. 31 AYAs can be perceived as not being competent to make such decisions, further adding to their exclusion in EOL planning. 30 Given the broad age range and developmental variability in AYA patients, EOL discussions present unique challenges, because what is appropriate at one end of the continuum for an adolescent can be completely inappropriate for an adult in their mid-twenties.…”

“…30 Given the broad age range and developmental variability in AYA patients, EOL discussions present unique challenges, because what is appropriate at one end of the continuum for an adolescent can be completely inappropriate for an adult in their mid-twenties. 30,31 However, not approaching these topics risks contributing to emotional isolation during the dying process. 30 Tailored EOL conversations involving the AYA cancer patient should be led by a clinician they have a comfortable relationship with, and discussions should be repeated and revisited over time.…”

Paediatric advance care plans: a cross-sectional survey of healthy young adults

“…We were interested in the recent study outlining the end-of-life preferences and opinions on paediatric advance care planning of adolescents and young adults (AYAs) with HIV/AIDS. We know that end-of-life conversations and conversations around advance care planning for AYAs with serious illnesses including HIV and cancer are particularly important for gold-standard care at end-of-life 1–5. Lyon and colleagues’1 research supports the appropriateness of end-of-life conversations earlier in the disease trajectory.…”