There are over 5 million Americans with Alzheimer's disease and related dementias, many of whom are at risk for receiving high-intensity, burdensome, and potentially unwanted treatments 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. Not only do such high-intensity treatments confer limited benefit and significant burden for these patients, but these treatments are often inconsistent with patients' and family members' goals of care. Patients with Alzheimer's disease and related dementias and their families face multiple challenges when making such high-stakes decisions including the limited ability of patients to actively participate in decision-making, poorly understood or enacted roles for family to act as surrogates, and inadequate surrogate-clinician communication about goals of care. Additionally, there is dramatic regional variability in hospital practice norms and physician attitudes toward ICU use for patients with Alzheimer's disease and related dementias. These hospital practice norms and physician attitudes are important targets for interventions to improve the quality and value of care for these patients. The overall objective of the parent R01 (R01 NR018161) is to evaluate, implement, and disseminate a model of care using nurse facilitators that ensures patients with critical illness receive care that is concordant with their goals over time, and across settings and providers. This proposed supplement will use participants from the parent study to identify patient, family, clinician, and system-level barriers to receipt of goal-concordant care for critically-ill patients with Alzheimer's disease and related dementias. We will use the receipt of ICU care as an example of high-intensity care that may be discordant with patients' informed preferences and, using both comparative ethnographic and interview-based qualitative methods, we will identify factors that influence decisions to instigate ICU care. Participants will include diverse stakeholders (45 family members of 30 unique patients, 30-45 clinicians and administrators, and, if cognitively intact, 5-10 patients) from 4 hospitals (2 academic, 2 community). Our goal is to identify modifiable processes of care that result in non-beneficial ICU admissions and that provide effective targets for educational, clinical, and policy interventions with the long term objective of ensuring that patients with Alzheimer's disease and related dementias and critical illness receive care that is concordant with their goals, and that these goals are supported by their surrogates, clinicians and the healthcare system.
Many of the over 5 million Americans with Alzheimer's disease and related dementias are at risk for receiving high-intensity, burdensome and potentially unwanted treatments. One category of these treatments, the use of the ICU, has significantly increased over the past decade for patients with advanced Alzheimer's disease and related dementias, but has been associated with poor outcomes. Using qualitative methods and a diverse group of stakeholders (families, clinicians, and administrators, as well as patients who are cognitively able to participate), this study will identify modifiable processes of care that result in non-beneficial ICU admissions and that may be effective targets for educational, clinical, and policy interventions with the long term objective to ensure that patients with Alzheimer's disease and related dementias receive care that is concordant with their goals, and that these goals are supported by their surrogates, clinicians and the healthcare system.
