Do-not-resuscitate orders and/or hospice care, psychological health, and quality of life among children/adolescents with acquired immune deficiency syndrome

Abstract

Objective: The frequency of do-not-resuscitate (DNR) orders and hospice enrollment in children/adolescents living with acquired immune deficiency syndrome (AIDS) and followed in Pediatric AIDS Clinical Trials Group (PACTG) Study 219C was examined, and evaluated for any association with racial disparities or enhanced quality of life (QOL), particularly psychological adjustment.

Methods: A cross-sectional analysis of children with AIDS enrolled in this prospective multicenter observational study between 2000 and 2005 was conducted to evaluate the incidence of DNR/hospice overall and by calendar time. Linear regression models were used to compare caregivers' reported QOL scores within 6 domains between those with and without DNR/hospice care, adjusting for confounders.

Results: Seven hundred twenty-six (726) children with AIDS had a mean age of 12.9 years (standard deviation [SD]=4.5), 51% were male, 60% black, 25% Hispanic. Twenty-one (2.9%) had either a DNR order (n=16), hospice enrollment (n=7), or both (n=2). Of 41 children who died, 80% had no DNR/hospice care. Increased odds of DNR/hospice were observed for those with CD4% less than 15%, no current antiretroviral use, and prior hospitalization. No differences by race were detected. Adjusted mean QOL scores were significantly lower for those with DNR/hospice enrollment than those without across all domains except for psychological status and health care utilization. Poorer psychological status correlated with higher symptom distress, but not with DNR/hospice enrollment after adjusting for symptoms.

Conclusions: Children who died of AIDS rarely had DNR/hospice enrollment. National guidelines recommend that quality palliative care be integrated routinely with HIV care. Further research is needed to explore the barriers to palliative care and advance care planning in this population.

Figures

FIG. 1

Adjusted quality of life domain scores by do-not-resuscitate (DNR)/hospice care status, means and 95% confidence intervals for each domain adjusted for gender, age, race/ethnicity, and antiretroviral therapy (ART) regimen, and except for symptom distress and physical functioning also adjusted for CD4% (25%), HIV-1 RNA viral load (≤400, >400 copies per milliliter), and previous hospitalization (yes, no). EOL, end of life; QOL, quality of life.

FIG. 2

Adjusted quality of life psychological subscale scores by do-not-resuscitate (DNR)/hospice care status, means and 95% confidence intervals for each domain adjusted for gender, age, race/ethnicity, CD4% (25%), HIV-1 RNA viral load (≤400, >400 copies per milliliter), previous hospitalization (yes, no), and antiretroviral therapy (ART) regimen. EOL, end of life; QOL, quality of life.