New research into nursing home care for residents with Alzheimer’s disease or related dementias found that they frequently experience costly and burdensome treatments that do not align with their own care goals.
Overall, though, researchers found that residents who had comfort-focused orders in their treatment plans did receive goal-concordant care but said that improvements — especially in collecting data — are needed.
The study examined the electronic health records for 4,285 long-stay nursing home residents who were diagnosed with moderate to advanced ADRD. The researchers analyzed care records and treatment plans to find comfort-focused orders and other indicators that treatments aligned with residents’ own goals as their health declined. Their results were published this month in the Journal of Post-Acute and Long-Term Care Medical Association,
The researchers found that 13% of the 823 residents who had specific, comfort-focused care received at least one goal-discordant treatment within the previous year. The most common treatment was hospital transfers, followed by parenteral therapy. The study noted that treatments not aligned with residents’ own goals were least common among those with Do Not Hospitalize (8.2%) but more common if residents had Comfort Measures Only orders (11%) or enrolled in hospice (13.2%).
“Although receipt of goal-concordant care is considered a criterion standard outcome of patient-centered care in serious illness, it remains difficult to measure, especially in pragmatic clinical trials in which outcomes are typically ascertained using real-world data from administrative or electronic health record (EHR) sources,” the study authors wrote. “We sought to develop an innovative, pragmatic approach to identify goal-concordant care among nursing home residents with ADRD.”
The study found that 87% of residents whose records were analyzed received goal-concordant care. Enrollment in hospice was the most common order indicating a comfort-based approach to caregiving. However, the researchers noted that their limitations included the possibility that the “more nuanced discussions documented in progress notes or other text” on residents’ goals may not have appeared in the goal determination sections of EHRs. Also, residents may have changed their preferences during “in-the-moment” decisions such as needing hospitalization for treating acute pain related to a fall.
Researchers noted that, despite goal-concordant care being a standard of patient-centered care, it has been a significant challenge to collect data on it.
“This approach may inform outcome selection in future pragmatic trials evaluating the effectiveness of interventions that aim to improve the concordance of care with goals among NH residents with a preference for comfort,” the researchers noted. “Future work can incorporate more EHR data to ascertain goals, including from free text notes.”
The research team consisted of: Natalie C. Ernecoff, PhD, RAND Corporation; Hyunkyung Yun (Yulia) and Ellen McCreedy, PhD, both of Brown University; Laura C. Hanson, MD, of the Division of Geriatrics, Sheps Center for Health Services Research, University of North Carolina; and Susan L. Mitchell, MD, Hebrew SeniorLife Marcus Institute for Aging Research.
