Identifying Contributing Factors to Burdensome Treatments in Older Adults with Advanced Dementia Near the End of Life
Over 5 million Americans with dementia are at risk for receiving high
intensity and potentially unwanted and burdensome treatments defined here as
mechanical ventilation, ICU admission, and resuscitation at the end of life. Despite decades of research aimed at promoting informed, goals-aligned
trend over the past decade amongst older adults has been towards increased ICU
usage and hospitalizations in the last months of life. There is a lack of research describing the systemic and cultural
drivers of burdensome care amongst patients with advanced dementia near the end
The first aim of this study is to understand factors
that contribute to burdensome treatments in older adults with advanced dementia
near the end of life. At two high and two low
intensity academic hospitals in California, I will conduct a comparative
ethnography (participant observation research) to identify
institutional, clinician, patient, and family factors that differ between high
and low intensity hospitals with respect to the provision of burdensome
treatments in older adults with advanced dementia near the end of life.
I will observe the day-to-day activities and behaviors of individuals involved
in the care of patients with dementia to identify what constitutes burdensome
care, explore how such care emerges in the course of everyday life at these
hospitals, and compare how high and low intensity hospitals differ.
My second aim seeks to understand the
barriers and facilitators of burdensome treatments
in older adults with advanced dementia near the end of life through semi-structured
in-depth interviews with key stakeholders at all levels of the healthcare system. The data from this project will allow
for more effective targeting of modifiable factors for interventions that
promote systems change towards high quality, goal-aligned end of life care.
Elizabeth Dzeng, MD, PhD, MPH, is an Assistant Professor at UCSF in the Division of Hospital Medicine and Social and Behavioral Sciences, Sociology program. She also directs the ethics curriculum for UCSF medical students. She completed her PhD in Medical Sociology at the University of Cambridge at King’s College as a Gates Cambridge Scholar and was a General Internal Medicine Post-Doctoral Clinical Research Fellow and Palliative Care Research Fellow at the Johns Hopkins School of Medicine. She wrote her dissertation on the influence of institutional cultures and policies on physicians’ ethical beliefs and how that impacts communication practices in end of life decision-making conversations. Her current research is focused on understanding the systemic factors that contribute to burdensome care at the end of life in older adults, as well as physician moral distress and ethical challenges at end of life.