Meeting the Challenges of COVID-19 by Expanding the Reach of Palliative Care: Proactive Advance Care Planning with Videos for the Elderly and all Patients with Dementia

The majority of patients aged 65 or over, and patients with Alzheimer's Disease and Related Dementias (ADRD), have never communicated their preferences to clinicians or completed advance care planning (ACP) documents. Palliative care has the potential to improve ADRD care, improve patient-clinician communication and patient-centered outcomes, while decreasing unwanted burdensome treatments and improving care at the end of life. The novel Coronavirus Disease 2019 (COVID-19) has acutely escalated the importance of integrating ACP and palliative care services into medical care. The default response to critical illness for patients with ADRD (and all others) is intubation, mechanical ventilation, and aggressive care despite having no change in mortality outcome. ADRD patients and their caregivers may prefer to avoid these interventions. To address these gaps, we have developed a COVID-19 ACP Educator-led, video-assisted palliative care intervention to improve patient-clinician communication, increase ACP documentation, and lead to more patient-centered care at the end of life. We will identify all hospitalized patients aged 65 and older, and any patient with ADRD, and then an ACP Educator will proactively proceed with primary palliative care services of ACP, leveraging certified video decision aids that we have developed. The ACP Educator to be tested in this proposal represents a new role and proactive function for the palliative care team. The ACP Educator, who will be a palliative care nurse, will work with older patients or patients with ADRD and proxy decision-makers to learn about and document patients' wishes. The overall objective is to reduce the burden of COVID-19 by expanding the reach of inpatient palliative care, especially for patients with ADRD. We propose to conduct a stepped wedge cluster randomized trial of an ACP Educator intervention among hospitalized patients aged 65 and over, or any patient with ADRD and their proxy decision-makers in the ward and ICU settings of two major hospitals: Boston Medical Center and North Shore University Hospital. Patient outcomes will be abstracted from electronic health records with Natural Language Processing. We will evaluate intervention effectiveness by comparing the following outcomes among 9,000 hospitalized patients: ACP documentation; preferences for resuscitation; palliative care consults; and, hospice use. We will characterize caregiver-centered outcomes of patients with ADRD, including: (1) knowledge, (2) confidence in future care, (3) communication satisfaction, and (4) decisional certainty in 600 caregivers of patients with ADRD admitted to the hospital. COVID-19 poses a unique dilemma for older Americans and patients with ADRD and their caregivers, who must balance their desire to live against the risk of a lonely and potentially traumatic hospital death. Video decision support is a practical, evidence- based, and innovative approach to assist patients facing such choices. If proven effective, this innovative care model can be immediately deployed across the country to improve the quality of care for millions of Americans.