Teenagers with HIV and their families can improve agreement about health care goals when advance care planning is discussed with a physician early in the course of treatment, according to research published in Pediatrics. This agreement, according to the researchers, can decrease HIV symptoms and suffering for the patient.
“Controlling for age, parental education, family income and other variables, family members who participated in [family-centered planning] were more likely to understand their child’s end-of-life care goals, which significantly reduced the adolescent’s physical symptoms — like pain — up to 12 months later,” Maureen E. Lyon, PhD, ABPP, a clinical health psychologist at Children’s National Health System, said in a press release. “A greater degree of familial understanding suggests good communication and social support, which already has been demonstrated to decrease HIV-specific symptoms in adults.”
The researchers wrote that although medical advances have improved the life span of adolescents with HIV, those with the condition have mortality rates 6 to 12 times higher than the general United States population. Pediatric advance care planning can alleviate suffering from serious illnesses by helping health care providers understand a patient’s goal for care and their preferences regarding end-of-life decisions. These preferences are documented in a similar way to adult advance care planning.
Lyon and colleagues conducted a single-blinded, randomized controlled trial located at six hospital-based HIV clinics and included 105 adolescent-family groupings between July 2011 and June 2014. All teens and their families received three weekly sessions that focused on either family-centered pediatric advance care planning (FACE pACP) or a control intervention.
When patients and their families were involved in FACE pACP, they were administered a pediatric advance care planning survey, a Respecting Choices interview and a Five Wishes directive. According to Respecting Choices, their interview is an internationally recognized, evidence-based way to focus on a patient’s goals and values. The Five Wishes directive also acts as a living will and provides information on the patient’s care and comfort choices.
Families in the control group discussed developmental history, safety tips and nutrition and exercise tips.
Most patients were black (93%), with an average age of 17.8 years. After 12 months, the researchers observed that of the 105 teenagers included in the analysis, 27% reported higher symptom and suffering levels, and 73% reported lower symptom and suffering levels.
Patients who were involved in FACE pACP with their families were more likely to agree on treatment (= 0.65; 95% CI, 0.04-1.28). This agreement, according Lyon and colleagues, reduced symptom and suffering in patients ( = –1.14; 95% CI, –2.55 to –0.24).
According to the researchers, teenagers who were a part of a highly religious family reported higher levels of symptoms and suffering ( = 2.19; 95% CI, 0.22-4.70).
“Our results underscore the potential to improve patients’ quality of life by offering pediatric advance care planning in HIV clinics based at pediatric hospitals,’ Lyon said. “In addition, these findings could inform best practices for caring for pediatric patients who are contending with other serious, life-threatening illnesses.” – by Katherine Bortz
Five Wishes. https://fivewishes.org/. Accessed: Oct. 22, 2018.
Respecting Choices: Person-Centered Care - About Us. https://respectingchoices.org/about-us/. Accessed: Oct. 22, 2018.
Disclosures: Lyon developed and adapted the Lyon Advance Care Planning Survey adolescent and surrogate versions used in session one of the three-session intervention. Please see the study for all authors’ relevant financial disclosures.