"I Wish I Knew What He Wanted": An Exploration of Youth Caregivers' Understanding of Parental End of Life Wishes

Purpose: End of life (EOL) decisions are complex and cover a wide range, from choosing a durable power of attorney and completing living wills, to knowing how and when to communicate EOL care preferences to family members. Considering family caregivers are often in a position to make surrogate health care decisions when the patient becomes incapacitated, it is vital that the family caregiver is informed about the patient’s EOL wishes. Yet, these conversations do not always happen among family members, especially with children in the home. But what if the child is the caregiver? Approximately 1.4 million children and youth under the age of 19, “youth caregivers”, in the US provide some measure of personal, intimate and medical care to an ill parent, yet they are a hidden caregiving population, receiving little attention in research or policy. Indeed, no data exists as to what these kids know about their parent’s EOL wishes or documentations of such wishes, despite being tasked with often enduring and complicated care duties. Using a sample of youth caregivers of a parent with Huntington’s disease (HD), this mixed methods study sought to provide an initial understanding of unknown EOL discussions among youth caregivers and their parents with HD.

Methods:Youth caregivers were recruited through the Huntington’s disease Society of America. In-depth, semi-structured interviews were conducted with 40 youth caregivers, (9 male, 31 female) ages 12-20. Results of the mixed methods study were obtained using descriptive statistics and content analysis. Quantitative study measures included questions about the existence of a living will and a durable power of attorney, while qualitative questions asked what the youth caregivers knew about the parents’ end of life wishes, and to what extent they had talked to their parent about these wishes.  

Results: Only 35% of the study sample (n=14) knew if their parent had a health care power of attorney, with only 5 respondents able to name the designee. Almost half of respondents (n=19) wanted to know their parents end of life care wishes; yet only 17% (n=7) had ever discussed this with their parents. One third (n=13) stated their parent had talked with them about the possibility of their dying. Among those whose parents had not talked about dying (n=27), half (n= 14) would like to have that conversation. Qualitative exploration elicited five themes highlighting why youth caregivers did have EOL discussions (“need to be prepared”, “parent started conversation”), or did not have EOL discussions (“Avoidance”, “Emotionally hard”, “Concern for parents’ feeling”).

Implications: Given the lack of research on end of life (EOL) wishes of parents who have a youth caregiver, findings from this study provide important initial knowledge in this area. Study results highlight the need to include youth caregivers in EOL research and provides insights for ways to empower families with youth caregivers to have EOL discussions. Social work is ideally suited to develop a research agenda around youth caregivers and EOL, as well as creating educational and supportive programs for families with youth caregivers dealing with EOL issues.