Palliative Care
Palliative Care
Dahye C. Yoon, BS (she/her/hers)
Medical Student
Children's National Health System
Washington, District of Columbia, United States
It is unknown if experiences with hospitalization and the death of loved ones influence end-of-life decision making among adolescents living with cancer.
Objective:
To understand how experiences with hospitalization and death may influence end-of-life decision-making for adolescent oncology patients.
Design/Methods:
30 transcripts of the Next Steps: Respecting Choices conversation, Session 2 of the FACE-TC pediatric Advance Care Planning (pACP) intervention, were analyzed. FACE-TC was designed to facilitate conversation between adolescents with cancer and their family to give patients a voice in their end-of-life treatment. Session 2 asked about adolescents’ experiences with hospitalization and experiences with a critically ill or dying loved one.
The frequency of reported experiences during the interview of personal hospitalization and death of a loved one was counted. Data were missing for three subjects. The Statement of Treatment Preferences, administered immediately after Session 2, measured adolescent’s treatment preferences in 4 cancer-specific scenarios. Choices were to continue all treatments, to stop all treatments, or unsure. Chi-square or the Fisher's Exact Test assessed the association between adolescents’ experiences and adolescents’ choice to discontinue treatment in at least one of four medical scenarios.
Results:
23/27 adolescents reported experiences with hospitalization and 15/24 reported experiences with the death of a loved one. No significant association was found between those without and those with experiences with hospitalization and the choice to discontinue treatments in at least one of the four medical scenarios [3 (75%) vs. 21 (91%), p=0.395]. No significant association was found between those without and those with the experience(s) with the death of a loved one and the choice to discontinue treatments in at least one of the four medical scenarios [9 (100%) vs. 12 (80%), p=0.266].
Conclusion(s):
Experiences with hospitalization or death and dying of a loved one did not influence adolescents’ choice to limit treatments in some situations. Due to small sample size, we powered to detect only large effect sizes. Most adolescents choose to limit treatment in at least one of the situations, suggesting “continue all treatments” should not be the default choice. While this exploratory study cannot define the exact relationship between adolescent oncology patients’ personal experiences and their ACP decisions, each unique experience may influence their decisions in different ways. Therefore, holding these conversations is imperative with these patients, clinicians, and families.