An Exploratory Survey of End-of-Life Attitudes, Beliefs, and Experiences of Adolescents With HIV/AIDS and Their Families

St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Journal of pain and symptom management (Impact Factor: 2.74). 07/2012; 44(3):373-85.e29. DOI: 10.1016/j.jpainsymman.2011.09.022
Source: PubMed

ABSTRACT For youths with life-limiting conditions, little is known regarding families' understanding of their adolescent's wishes for end-of-life (EOL) care.
To examine congruence in HIV positive adolescents and their families' thoughts about death and dying.
The Lyon Advance Care Planning Survey-Adolescent and Surrogate versions were administered within a randomized controlled trial. Participants (n=48) were medically stable adolescents aged 14-21 years with HIV/AIDS and their families. Congruence was measured by intraclass correlation coefficients (ICCs) for continuous variables and by kappa for ordinal or dichotomous responses.
Adolescent participants were as follows: mean age 16.6 years (range 14-21); 37.5% males; 92% African American; 38% CD4 count <200; and viral load mean=32,079 copies/mL (range <400-91,863 copies/mL). Adolescent/family dyads agreed that it is important to complete an advance directive to let loved ones know their wishes (21/24 dyads), yet no dyads agreed an advance directive had been completed. Dyads endorsed incongruent thoughts about the adolescent being afraid of dying in pain (64%; congruent afraid=8 dyads, kappa=-0.0769) and being off life support machines (congruent important=9 dyads, ICC=-0.133, 95% confidence interval = -0.540, 0.302, P=0.721). Families' knowledge of teens' preferences for the timing of EOL conversations (early vs. late in course of illness) was poor (kappa=-0.1186). Adolescents (90%) wanted to talk about EOL issues before they entered the dying phase.
Although important areas of congruence emerged, equally important areas, such as the timing of these conversations and adolescents' EOL needs and wishes, are not known by their families. Families need help initiating conversations to assure that their adolescents' EOL wishes are known to them.

  • [Show abstract] [Hide abstract]
    ABSTRACT: Background Little is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers.ProcedureTrained facilitators administered surveys orally to adolescents and families in the intervention arm of the FAmily CEntered Advance Care Planning (ACP) for Teens with Cancer (FACE-TC) study. In addition, a post-hoc survey was sent to oncology providers.ResultsSeventeen adolescent/family dyads completed this survey. Seventy five percent of adolescents believed it was appropriate to discuss EOL decisions early and only 12% were not comfortable discussing death. Most preferred to be at home if dying. There were substantial areas of congruence between adolescents and their surrogates, but lower agreement on the importance of dying a natural death, dying at home and “wanting to know if I were dying.” Among providers, 83% felt their patients’ participation in the study was helpful to the patients and 78% felt it was helpful to them as providers.Conclusions Adolescents with cancer were comfortable discussing EOL, and the majority preferred to talk about EOL issues before they are facing EOL. There were substantive areas of agreement between adolescents and their surrogates, but important facets of adolescents’ EOL wishes were not known by their families, reinforcing the importance of eliciting individual preferences and engaging dyads so parents can understand their children's wishes. Pediatr Blood Cancer 2014;9999:1-5. © 2014 Wiley Periodicals, Inc.
    Pediatric Blood & Cancer 12/2014; 62(4). DOI:10.1002/pbc.25358 · 2.56 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: To date, research and promotion regarding advance care planning (ACP) has targeted those with serious illness or the elderly, thereby ignoring healthy young adults. The purpose of this study was to explore young adults' knowledge, attitudes, and preferences regarding advance care planning (ACP) and medical decision-making. Further, we aimed to understand the potential role of public health to encourage population-based promotion of ACP. Between February 2007 and April 2007, we conducted six focus groups comprising 56 young adults ages 18-30. Topics explored included (1) baseline knowledge regarding ACP, (2) preferences for ACP, (3) characteristics of preferred surrogates, and (4) barriers and facilitators to completing ACP specific to age and individuation. We used a qualitative thematic approach to analyze transcripts. All participants desired more information regarding ACP. In addition, participants expressed (1) heterogeneous attitudes regarding triggers to perform ACP, (2) the opinion that ACP is a marker of individuation, (3) the belief that prior exposure to illness plays a role in prompting ACP, and (4) an appreciation that ACP is flexible to changes in preferences and circumstances throughout the life-course. Young adults perceive ACP as a worthwhile health behavior and view a lack of information as a major barrier to discussion and adoption. Our data emphasize the need for strategies to increase ACP knowledge, while encouraging population-level, patient-centered, healthcare decision-making.
    BMC Public Health 12/2015; 15(1):1575. DOI:10.1186/s12889-015-1575-y · 2.32 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: IMPORTANCE Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied. OBJECTIVE To examine the efficacy of family-centered ACP. DESIGN AND SETTING Two-group randomized controlled trial in a pediatric oncology program. PARTICIPANTS Sixty adolescents aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study between January 17, 2011, and March 29, 2012. INTERVENTION Thirty dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information. MAIN OUTCOME MEASURES Statement of treatment preferences and Decisional Conflict Scale score. RESULTS The mean age of the adolescents was 16 years; 36 (60%) were male, 30 (50%) white, 26 (43%) black, and 4 (7%) Asian. Diagnoses were as follows: leukemia (14 patients [47%]), brain tumor (8 [27%]), solid tumor (6 [20%]), and lymphoma (2 [7%]). Significantly increased congruence was observed for intervention dyads compared with controls for 4 of the 6 disease-specific scenarios; for example, for situation 2 ("treatment would extend my life by not more than 2 to 3 months"), intervention dyads demonstrated higher congruence (κ = 0.660; P < .001) vs control dyads (κ = -0.0636; P = .70). Intervention adolescents (100%) wanted their families to do what is best at the time, whereas fewer control adolescents (62%) gave families this leeway. Intervention adolescents were significantly better informed about end-of-life decisions (t = 2.93; effect size, 0.961; 95% CI, 0.742-1.180; P = .007). Intervention families were more likely to concur on limiting treatments than controls. An ethnic difference was found in only one situation. CONCLUSIONS Advance care planning enabled families to understand and honor their adolescents' wishes. Intervention dyads were more likely than controls to limit treatments. Underserved African American families were willing to participate.
    03/2013; 167(5):1-8. DOI:10.1001/jamapediatrics.2013.943