Serious Illness Communications, Grief, and ACP Resources

We've gathered trusted resources LeadingAge members can use for advance care planning (ACP), grief and bereavement, and serious illness communication in the context of COVID-19.

LeadingAge members are working to help their residents, patients, and families navigate what will be difficult and, in some cases, sudden, decisions about their own or a loved one’s health status and how that impacts care and treatment choices during the crisis. Following are trusted resources offering tools, tips, advice and best practices focused on COVID-19. This list is not exhaustive, but is a starting place for members.

Center to Advance Palliative Care

The Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability of quality health care for people living with a serious illness. CAPC provides health care professionals and organizations with the training, tools, and technical assistance necessary to effectively meet this need. CAPC has been working with a variety of partners to create tools related to serious illness communication, symptom management, and palliative care in the time of COVID-19. Look for a QuickCast on the Hub with CAPC Executive Director Dr. Diane Meier in the coming weeks. Find the full COVID website here.

  • Organized by learning pathway:
    • Community health care providers preparedness tools and technical assistance: aimed at primary care providers, hospice and home health staff, and nursing home staff preparing for an anticipated peak or surge of COVID-19 cases.
    • Community health care providers tools and technical assistance in communities with COVID-19.
    • Training for any clinician, including symptom management and general communication skills.

VitalTalk

VitalTalk is comprised of clinicians who use evidence-based practices to empower clinicians to communicate about serious illnesses empathetically and effectively, enabling them to feel less burned out in the process. They train clinicians in a method that is culturally sensitive, inter-professional, and oriented around patient values. They have been developing open source materials including videos since the onset of the COVID-19 crisis that include tips on how to talk about difficult topics related to COVID-19. Includes conversations about testing for COVID, treatment decisions, limited resources.

PREPARE for Your Care

Prepare for Your Care grew out of a desire to help make medical decision making easier for people and caregivers. Prepare for Your Care started over 10 years ago with the creation and testing an easy-to-read advance directive proven to be effective in a randomized trial and is available in 10 languages. They have continued to create materials based on subsequent studies on patient and caregiver needs. Links to advance directives in all 50 states can be found here.

CAKE/Providence Institute for Human Caring

The Providence Institute for Human Caring led by Dr. Ira Byock and Cake, an advance care planning technology company, worked together on a “trusted decision maker” form. Because it is not possible for most people to access a notary, witnesses, or even a printer during the COVID-19 pandemic, the Trusted Decision Maker Form is a good alternative for expressing preferences if it is not possible to execute a formal advance directive. It is not a legal document.

Ariadne Labs/Conversation Project

The Conversation Project is a public engagement initiative with a goal that is both simple and transformative: to have every person’s wishes for end-of-life care expressed and respected. It is an initiative of the Institute for Healthcare Improvement. Ariadne Labs is a joint health system innovation center at Brigham and Women’s Hospital and Harvard T.H. Chan School of Public Health. They develop simple, scalable solutions that dramatically improve the delivery of health care at critical moments to save lives and reduce suffering. One of their focuses is serious illness care and was founded by Dr. Atul Gawande. 

The Conversation Project and Ariadne Labs collaborated on COVID-19 related materials that include tools to support clinicians in having conversations with patients who are high risk for serious complications of COVID-19.  Although these tools are designed for outpatients, they can be adapted for other settings including nursing home residents and families.

POLST

Physician’s Order to Life Sustaining Treatment (have a variety of names in different states). The POLST decision-making process and resulting medical orders are intended for patients who are considered to be at risk for a life-threatening clinical event because they have a serious life-limiting medical condition, which may include advanced frailty. The National POLST paradigm has created a COVID-19 page with tools that include considerations around updating POLST forms during a crisis. The materials include recommendations and guidance for long-term care facilities re: POLST & COVID-19 and FAQs for healthcare professionals and patients/residents.

Respecting Choices 

Respecting Choices is an internationally recognized, evidence-based model of advance care planning (ACP) that creates a healthcare culture of person-centered care—care that honors an individual’s goals and values for current and future healthcare. Their COVID site includes numerous COVID-19 resources and tools to assist with care planning conversations, decision making, and involvement of health care agents, a proactive care planning for COVID-19 (26 minute video), proactive care planning education guides for high risk and their healthcare agents and a tool to guide conversation when scheduling conversations about care preferences.

Other

Dr. Danielle Doberman spoke on our April 17 Coronavirus Daily Member Update call regarding advance care planning and serious illness communication during the COVID-19 crisis. A handout she created can be found here.

Grief and Bereavement Resources

The Virtual Funeral Collective is a group of specialists including seventy doctors, nurses, scholars, grief therapists, psychologists, funeral home directors, hospice workers, thanatologists, chaplains, hospital administrators and end-of life practitioners from around the globe who work with dying, death, and grief on a daily basis. They put together a white paper on death, grief, and funerals in the age of COVID-19.

White Paper

Resources Referenced in White Paper

Be sure to visit LeadingAge's main coronavirus resources page for more information, tools and resources to help all aging services providers plan for and respond to COVID-19.