Adolescents living with HIV suffer fewer disease-related symptoms when they and a family member plan for end-of-life care.
Adolescents living with HIV suffer fewer disease-related symptoms when they and a family member plan for end-of-life care, the results of a new study suggest. Conversely, when families struggle over their child's end-of-life choices, adolescents who are HIV-positive are more likely to suffer pain and other physical symptoms.
“Early conversations about the adolescent’s goals of care, preferences, and hopes increased the odds that the family had an excellent understanding of their adolescent’s treatment preferences,” lead investigator Maureen E. Lyon, PhD, ABPP, a clinical health psychologist at Children's National Health System, The George Washington University School of Medicine & Health Sciences told MD Magazine® in an interview. “This, in turn, decreased the adolescent’s HIV-specific symptoms one year later, compared with adolescents and families who did not have this conversation.”
Adolescents represent a crucial population in need of strategies to cope with living with HIV. Youth aged 13 to 24 made up 21% of all new HIV diagnoses in the United States in 2016, according to data from the US Centers for Disease Control and Prevention. Furthermore, young people living with HIV/AIDS in the United States are 6 to 12 times more likely to die than the general public, Lyon and colleagues wrote in their study published in Pediatrics.
“Some families and physicians have said if adolescents and young adults just took their HIV medications, they would live a long life and it would avert the need to have these conversations,” Lyon said. “However, adolescents living with HIV have told us they want to have these conversations, have thought about death and dying, and have even experienced deaths due to HIV in their family,” she noted.
To evaluate the impact of advance care family planning might have on youth living with HIV, the investigators evaluated 105 adolescent-family dyads in 6 US hospital-based HIV clinics from July 2011 to June 2014.
The youth were 14 to 21 years old with a mean age of 17.8. Fifty-four percent were male and 93% were African American. The mean age of the family members was 45, with 82% female and 90% African American. One-third of family participants were HIV-positive themselves.
The patient/family member pairs were randomly assigned to receive either advance care planning or traditional assessments during three, 60-minute sessions.
The investigators tested an intervention known as FAmily CEntered pediatric advance care planning, or FACE pACP, for the advance care group. In the first meeting, they completed an advance care survey that assessed values, beliefs, and life experiences and determined when to begin end-of-life discussions. The second session centered on a “Respecting Choices” interview that covered shared decision-making about palliative care and a discussion of death and dying to prepare the guardian to represent the adolescent’s wishes. The third meeting featured the “5 Wishes” directive. This legal document helps a person express how they want to be treated if they are unable to speak for themselves. It is unique among living will and health agent forms as it considers all a person's needs: medical, personal, emotional, and spiritual, the study authors wrote.
“Participants were told ‘this is the beginning of a conversation’ and informed about how to change advance directives, should they change their mind, as people sometimes do if circumstances change,” Lyon said.
The control group underwent 3 sessions that included a developmental history and tips on safety, nutrition, and exercise.
At the end of 12 months, the investigators found almost three-quarters of the participants to be in the low symptom/suffering group. In comparison, about one-quarter, or 27%, were in the high symptom group at the end of the study.
“Patients living with HIV and their families found FACE pACP to be an emotional and worthwhile experience,” Lyon said. “One adolescent after completing the intervention said, ‘I feel alive.’”
Lyon explained that FACE pACP itself did not have a direct effect on the adolescents’ symptoms.
“Rather, FACE pACP increased the odds that families understood their adolescents’ treatment preferences, which in turn, predicted fewer HIV-specific symptoms in their adolescent a year later,” she explained.
In one interesting finding, the team reported that higher religiousness among the adolescents predicted higher symptoms and suffering. Lyon plans to explore this outcome in future research.
“We hypothesize that traditional religious dogma teaches ‘patient endurance’ of suffering, ‘bearing your cross,’ etc.: The world of the body is not as important as the world of the spirit and the next life,” she said.
Overall, the study shows the importance of including adolescents living with HIV and their families in discussions and strategies for care, Lyon said. She noted that young people and their bereaved families helped design FACE pACP to be safe and to contain the strong emotions that talking about meaningful life goals can elicit.
“Not only do adolescents express a desire to be involved in goals of care conversations with their families, but their families’ understanding also supports the physician in providing patient-centered care,” she said. This, in turn, aids the hospital in meeting quality standards related to patient-centered care and satisfaction and benefits the patient who experiences fewer HIV-specific symptoms.
Lyon’s advice to adolescents and their families facing life with HIV?
“FACE pACP gives teens a voice, helps families ‘break the ice,’ and provides an extra level of support to their doctor,” she said.
“Don’t be afraid.”
The study, “Advance Care Planning and HIV Symptoms in Adolescence,” was published in Pediatrics.