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 cardiopulmonary resuscitation (CPR) at the end of life. Compared to a decade ago, patients with advanced dementia are twice as likely to receive mechanical ventilation without substantial improvement in survival. Dementia care tends towards burdensome treatment in part due to the difficulty of predicting life expectancy amongst patients with advanced dementia and because such patients and families have difficult navigating the healthcare system to avoid unwanted care. Even with improved outpatient support and advance care planning, 17% of patients with advanced dementia are hospitalized near the end of life. These hospitalizations often occur at a defining moment in a patient’s health trajectory, providing critical opportunities to mitigate burdensome, unwanted care.

Several high-profile trials aimed at improving hospital care at the end-of-life have been negative. Despite decades of research aimed at promoting goals-aligned care, the trend over the past decade amongst older adults has been towards increased ICU usage and hospitalizations in the last month of life. This suggests that the problem of burdensome care is not one merely of clinician, patient, or family behavior, but rather something more deeply situated within organizational culture and systemic defaults. Ninety-six percent of health care proxies of patients with dementia state that patient comfort is the primary goal, yet high intensity care frequently occurs in patients with advanced dementia. This finding highlights the urgent need to define these yet uncharacterized drivers of burdensome care. There is a lack of research describing the systemic and cultural drivers of burdensome care amongst older adults with advanced dementia near the end of life.

Sociological approaches provide key empirical tools to fill this critical gap in the palliative care literature, as its methodologies have been specifically designed to address and critically analyze organizational and institutional behaviors. Specifically, are there differences in institutional cultures that drive care trajectories for patients with advanced dementia between hospitals with high and low intensity of life sustaining treatment? This knowledge will allow for more effective targeting of modifiable factors for interventions that promote systems change towards high quality, goal-aligned end of life care.

My current project seeks to understand those factors that contribute to burdensome treatments in older adults with advanced dementia near the end of life. To accomplish this objective, I am conducting a comparative ethnography 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. The ultimate goal is to understand the barriers and facilitators of burdensome treatments in older adults with advanced dementia near the end of life in order to design interventions that target systems-level factors to change the culture of burdensome care at the end of life in older adults. A focus of this project will be on how different institutional ethical climates influence physicians’ ethical frameworks and decision-making practices and whether this influences the provision of burdensome care.


(Dzeng, 2017, Journal of Pain and Symptom Management)