Coronavirus (COVID-19): Resources to Support Serious Illness Population
The spread of Coronavirus (COVID-19) is affecting every aspect of our society, but it has unique implications for the serious illness care movement, as people with serious illness are particularly susceptible to complications from COVID-19. As a result, it is essential that patients and those caring for them have access to resources which can help them navigate this difficult time.
C-TAC has amplified our efforts on Capitol Hill since the COVID-19 spread as there are opportunities to advance key policies that can improve serious illness care for millions of people in alignment with our moonshot goal. C-TAC recently finalized policy recommendations which we shared with our champions in Congress and CMS. We will continue to work alongside our legislative and regulatory efforts to support policies designed to provide people living with serious illness with a variety of services during this crisis.
We are proud that others in the movement are already rising to meet this challenge. From communications guides for clinicians to self-care advice for caregivers, groups across the country are leveraging their talent and expertise to create tools designed to support the serious illness population.
The C-TAC team is developing a compiled list of resources on this page, organized by the audience which they aim to serve. We will continue to add new tools to this page, so stay tuned for updates!
Would you like to suggest a tool or resource for inclusion on this page? You can share it with the C-TAC team using the contact form at the bottom of this page. If you have any questions, please contact C-TAC Communications Manager Stephen Waldron at swaldron@theCTAC.org.
For General Information and Updates
- Centers for Disease Control & Prevention Coronavirus (COVID-19) Page
- World Health Organization - Rolling Updates on Coronavirus Disease (COVID-19)
- Harvard Medical School Coronavirus Resource Center
- Johns Hopkins University of Medicine Coronavirus Resource Center
- What AARP is Doing to Respond to the Coronavirus Epidemic - Learn about the aggressive actions being taken by AARP to inform and protect older Americans during the outbreak
- AARP Live Q&A Events: The Coronavirus - During weekly virtual town halls, experts share information about COVID-19 and how to protect yourself
- HCCI COVID-19 Information Hub - The Home Centered Care Institute has prepared a collection of essential resources, as well as their own online courses, related to the COVID-19 spread
- Getting Ahead of COVID-19 Issues: Dying from Respiratory Failure Out of the Hospital - Written by Joanne Lynn, MD, Analyst, Program to Improve Eldercare, Altarum
- What is the prognosis of COVID-19? - Prepared by the GeriPal Geriatrics and Palliative Care Blog
- Coronavirus Disease (COVID-19) Information from the Administration for Community Living (ACL)
- Healthify COVID-19 CBO Resource Center
- Teletherapy for Addiction and Mental Health During the COVID-19 Pandemic - Developed by The Recovery Village®
For Policymakers and Advocates
- CMS Coronavirus Landing Page - This page is continually updated with the latest actions taken by CMS in response to the COVID-19 outbreak
- C-TAC Legislative Recommendations for Responding to COVID-19 - Sent to Congressional Leadership on March 20
- C-TAC Regulatory Recommendations for Responding to COVID-19 - Sent to HHS Director Alex Azar and CMS Administrator Seema Verma on March 20
- C-TAC Follow-Up Legislative Recommendations for Responding to COVID-19 - Sent to Congressional Leadership on April 3
- C-TAC Follow-Up Regulatory Recommendations for Responding to COVID-19 - Sent to HHS Director Azar and CMS Administrator Verma on April 22
- The National Academy for State Health Policy is offering analysis on several issues related to COVID-19, including:
- Strategies for Coping with Isolation and Loneliness During the Coronavirus Pandemic- Prepared by Dr. Russell Farmer of Northwestern University, this article describes different types of isolation and includes tips for managing each type
For People with Serious Illness
- Medicare & Coronavirus - Learn how Medicare is addressing the Coronavirus (COVID-19) and precautionary steps to stay safe and healthy
- MemoryWell - This storytelling platform is making its resources available free of charge, allowing families to create a digital timeline of their lives together
- My Living Voice - Vital Decisions is extending its telehealth clinical services, supporting those most vulnerable to COVID-19
- Mesothelioma Patients, Caregivers Can Manage Coronavirus Anxiety - The Mesothelioma Center offers guidance for mesothelioma patients as well as their caregivers who are facing increasing levels of stress in response to the COVID-19 pandemic
- The following resources were developed by National POLST:
- Being Prepared in the Time of COVID-19 - This guidance was developed by The Conversation Project
- Community Resource Helpline for Older Adults and Caregivers - Developed by the National Asian Pacific Center on Aging (NAPCA), this guide is designed to assist elderly and at-risk individuals most vulnerable to the COVID-19 pandemic in Los Angeles and Seattle
- Telehealth and Online Mental Health Resources During COVID-19 Pandemic - This collection of tools was provided by Sunshine Behavioral Health
- Is COVID-19 Leading To More Relapses? - This post, provided by the Palm Beach Institute, explores how factors related to the COVID-19 pandemic may increase the risk of relapse for those facing addiction. It also offers an assortment of tools, resources and guidance for those navigating these challenges.
- COVID-Ready Communication Skills - A handbook, developed by VitalTalk, to help clinicians communicate about difficult topics related to COVID-19
- Center to Advance Palliative Care COVID-19 Response Resources - A handbook developed by CAPC that includes crisis communication and symptom management protocols, among other tools, for all clinicians addressing the COVID-19 outbreak
- Guidelines for Institutional Ethics Services Responding to COVID-19 - An ethical framework, created by The Hastings Center for health care institutions responding to the novel coronavirus
- Responding to Covid-19 as a Regional Public Health Challenge - Prepared by the Hastings Center as a supplement to their Ethical Framework for Health Care Institutions Responding to COVID-19, this resource shares promising practices and guidance reflecting real-time efforts by health care ethicists to collaborate beyond their own institutions.
- Respecting Choices® Complementary Care Planning Resources - Respecting Choices® has adapted a selection of care planning resources to focus on COVID-19 and is offering these tools free of charge
- A Pragmatist’s Advice for Nursing Homes - Written by Joanne Lynn, MD, Analyst, Program to Improve Eldercare, Altarum
- Preparing Eldercare for a Surge of Covid-19 Deaths - Written by Joanne Lynn, MD, Analyst, Program to Improve Eldercare, Altarum
- VitalTalk COVID-Ready Communication Skills Playbook
- The following tools were developed by National POLST:
- The following resources have been shared by Indiana University's
Optimizing Patient Transfers, Impacting Medical Quality, and Improving Symptoms: Transforming Institutional Care
For Faith and Community Leaders
- COVID-19: Recommended Preventative Practices and FAQs for Faith-based and Community Leaders - Tips and insight from The Partnership Center, an HHS program, on the role of faith and community leaders during the spread of COVID-19
- Get Your Community- and Faith-Based Organizations Ready for Coronavirus Disease 2019 - Interim guidance from the Centers for Disease Control & Prevention designed to help faith and community leaders support those in their care
- AARP's Mutual Aid (Beta) - A new initiative by AARP will gather informal groups of volunteers to support those most in need in our communities
For Family Caregivers
- Coronavirus (COVID-19) Resources and Articles for Family Caregivers - Developed by the Family Caregiver Alliance
- How to Protect Yourself From Coronavirus When Grocery Shopping - Developed by Consumer Reports, this guide addresses an essential task often performed by family caregivers
- Taking Care of YOU: Self-Care for Family Caregivers - A guide aimed at helping family caregivers take care of themselves during this challenging time
- Coronavirus (COVID-19): Tips for Dementia Caregivers - Advice from the Alzheimer's Association designed to help those caring for a loved one with dementia
- Tips on Dementia Caregiving in the COVID-19 Outbreak - Compiled by NextAvenue
- Making the Call - Victor Imbimbo, President and CEO of Caring Today LLC, shares advice for reaching out to those who matter most in the age of physical isolation
- Coronavirus (COVID-19): Tips for Dementia Caregivers in Long-Term or Community-Based Settings - This guide, prepared by the Alzheimer's Association, offer tips on emergency preparedness in caring for persons living with dementia in a long-term or community-based care setting, including the importance of advance planning
- 7 Signs of Caregiver Burnout - Prepared by Senior Lifestyle, this guide identify key indicators of the strain that caregiving can have on family members and loved ones
- Philanthropy Responds - Grantmakers in Aging has compiled an excellent list of resources for foundations responding to the COVID-19 spread. This guide covers topics that include:
- Centers for Disaster Philanthropy (CDP) Coronavirus Hub
- COVID-19 and Aging: What Can Philanthropy Do?
- Grantmakers in Health COVID-19 Resources
- Council on Foundations' Coronavirus Resource Hub