Event Description

Advance Care Planning (ACP) has never been more important than now. Our recent experience with COVID-19 lays bare ACP gaps and barriers that persist despite many years of promotion of ACP through public and clinical education.

Federal and state regulators have implemented ACP waivers to address some of these concerns, but these waivers are temporary. We will evaluate these temporary waivers and determine where there are remaining gaps and barriers. Please join (virtually) our panel of leading experts as we examine lessons learned from this experience and identify longer-term policy solutions that support quality ACP services for all.

Panelists

• Stephanie Anderson, DNP, RN, Executive Director, Respecting Choices
• Marilyn J.D. Barnes, MS, MA, MPH, BCC, VP, Mission and Spiritual Care, AdvocateAuroraHealth
• Marian Grant, DNP, ACNP-BC, ACHPN, FPCN, RN, Senior Regulatory Advisor, The Coalition to Transform Advanced Care; Adjunct Faculty, Johns Hopkins and University of Maryland Schools of Nursing
• Sarah Hooper, J.D., Executive Director, UCSF/UC Hastings Consortium on Law, Science & Health Policy, Adjunct Professor of Law at UC Hastings College of the Law
• Moderator: Shoshana Ungerleider, MD, Founder, End Well Foundation, Physician and Teaching Faculty Member, Sutter Health

Resources

• Respecting Choices COVID-19 Care Planning Resources: Respecting Choices is proud to be among the many organizations that worked rapidly to meet the needs of clinicians and communities facing the challenges of the COVID-19 pandemic. We created a Care Planning tool kit of complementary materials, for widespread use through the end of the year, that is grounded in our 25-year history of experience and research but is specific to the unique circumstances that COVID-19 created for patients, families and the healthcare team.
• PREPARE for Your Care: An online ACP decision support tool (+advance directive) available to consumers for free in all 50 states. The site includes COVID-specific resources for consumers and providers. This tool was developed by Rebecca Sudore (UCSF) with help from my legal team with the goal of reducing literacy and other barriers to use and understanding. Materials are written at a 5th grade reading level (average reading level of US population) and available in multiple languages with read aloud and video options. The tool has been tested in several RCTs and found to increase ACP engagement, including among traditionally underengaged populations. 
• UCSF-UC Hastings Medical-Legal Partnership for Seniors: A model of care that integrates legal advocacy into clinical care of older adults with complex needs. The model addresses “comprehensive” advance care planning in patients, which includes not just planning for medical decisions but for the social conditions informing those decisions (e.g. financial caregiving, housing access, long term care access, nutrition support, etc). Information about the model is available in this recent publication of Generations, the Journal of the American Society on Aging.
• Care Ecosystem: A telephone-based patient navigator intervention that seeks to improve care of persons with dementia and their caregiver. The Care Ecosystem was developed by a multidisciplinary team as part of an RCT and addresses several domains of need, including ACP. 
• “Improving Medical-Legal Advance Care Planning,” Sarah Hooper, JD, Charles P. Sabatino, JD, Rebecca L. Sudore, MD, Journal of Pain and Symptom Management (March 30, 2020).

This event is part of the Project on Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School and the Coalition to Transform Advanced Care (C-TAC), a non-partisan, non-profit alliance of over 150 national organizations dedicated to being a catalyst to change the health delivery system, empower consumers, enhance provider capacity, and improve public and private policies in advanced illness care.