How to Engage Patients and Families about Care through the End of Life
COVID-19 Resources for Healthcare and Community Leaders: We’ve compiled a sampling of resources to help clinicians navigate the pandemic, including difficult conversations and use of telemedicine.
Online Course: PFC 202: Having the Conversation: Basic Skills for Conversations about End-of-Life Care: In conjunction with the Boston University School of Medicine and The Conversation Project, the IHI Open School offers this course to introduce students and health professionals to basic skills for having conversations with patients and their families about end-of-life care wishes. This course will also help you develop skills to have conversations with patients and their families about their preferences for care at the end of life. As part of developing these skills, the course invites you to “have the conversation” yourself, with a family member or other loved one. This course can be accessed with an IHI Open School subscription.
IHI White Paper: “Conversation Ready”: A Framework for Improving End-of-Life Care (second edition): The Institute for Healthcare Improvement- developed a detailed framework based on the work of The Conversation Project to help health care organizations begin the process of becoming Conversation Ready. This paper describes the Conversation Ready framework, including suggested changes and measures to guide improvement of end-of-life care. This second edition was published in March 2019 based on additional learning from several years of work with dozens of diverse health care organizations and hundreds of health care professionals.
How to Talk to Your Patients about End-of-Life Care: A Conversation Ready Toolkit for Clinicians: The ultimate goal of a “Conversation Ready” health care organization is respectful end-of-life care that is concordant with patients’ stated goals, values, and preferences. This toolkit is intended to help clinicians address some of the challenges of engaging with patients and families in end-of-life care conversations over time. The kit contains four cases of patients at different points of illness, as well as diverse clinicians and care settings, and outlines key considerations for clinicians to engage the patient and family in discussions about what matters most to the patient at the end of life.
New! How to Have Conversations with Older Adults About “What Matters”: A Guide for Getting Started: A short guide for anyone who cares for older adults, in any setting, to help jumpstart conversations about What Matters most. Download the Getting Started Guide
Advance Care Planning Policy
How Policy During the COVID-19 Era has Impacted Advance Care Planning, and What Still Needs to be Done: The Coalition to Transform Advanced Care (C-TAC) describes how advance care planning policy has changed during the pandemic and what additional policy changes should be made, like removing deductible payments and restoring the Patient Self-Determination Act requirements.
Medicare Reimbursement for End-of-Life Conversations ─ Frequently Asked Questions: This short, one-page guide answers FAQs around Medicare reimbursement for end-of-life conversations, and provides brief suggestions and goals for providers to have the conversation with patients at different stages of illness.
Cultural and Ethnic Considerations
Family Caregiving for Diverse Elders Resource Hub: Modules and training from the Diverse Elders Coalition help health care and social service organizations better meet the needs of diverse caregivers.
Ethno Geriatrics Training: modules from Stanford School of Medicine for health care providers to raise awareness of specific cultural, racial, and ethnic influences on health and health care of older people from specific ethnic backgrounds.
Phyllis R. Coolen: Cultural Relevance in End-of-Life Care: an article addressing three major areas of cultural relevance in end-of-life care: cultural competency in clinical practice; advance directives; and pain management.
Avoiding Cultural Assumptions in Palliative Care ─ An Interview with Two Sojourns Scholars: an episode from Cambia Health Solutions’ HealthChangers Podcast.
Resources for Engaging Patients and Families
Conversation Starter Guides: a series of guides to help people discuss care wishes through the end of life.
New! “What Matters to Me” Workbook: jointly created by Ariadne Labs and The Conversation Project to help people with a serious illness think through and talk about what matters most to them – to make sure they get the care they want.
Being Prepared in the Time of COVID-19: The Conversation Project and Ariadne Labs teamed up to create this new tool to help people take action and be prepared. We can’t control how this pandemic plays out. But we can control who speaks for us if we’re unable to speak for ourselves, and we can take the time to make sure they know what matters most to us. Have this conversation today.
Conversation Starter Guide: a guide to help people have conversations with their family members, friends or others that matter most about their wishes for care through the end of life.
Choosing a Health Care Proxy: a user-friendly guide offers facts and tips necessary to make sound decisions about choosing a health care proxy.
Being a Health Care Proxy: a user-friendly guide offers facts and tips necessary to make sound decisions about being a health care proxy.
Talking with Your Health Care Team: a guide to help people engage their health care team about care wishes now and through the end of life.
Distributing and editing: Directions for distributing and editing the Guide, including options to co-brand our guides with your organization’s logo and contact information.
Ariadne Lab’s Serious Illness Conversation Guide: a step-by-step guide to elicit important information from your patients about their goals and values.
How to Bring TCP into your Community
New! Getting Started Guide for Communities: can help spark ideas about who to engage and how to introduce the importance of conversations into your community. There are many ways to help your community members jump start conversations – no one size fits all. Use what feels right to you in this guide: all of it, pieces of it, whatever works for you. The guide is broken into the following sections to help you where you may need it the most:
- Think about your approach
- Plan your strategy
- Take action
- Planning tools and templates
Organize an event about TCP to gain interest and help spread TCP’s mission:
New! Tips for Facilitating and Teaching about The Conversation Project: This resource shares examples of possible event types, tips and stories from years of experience in the field – from our TCP team members and from hundreds of champions around the globe who have hosted events both virtually and in-person across their communities.
Research on End-of-Life Conversations
Lum HD, et al: Advance Care Planning Meets Group Medical Visits: The Feasibility of Promoting Conversations
This pilot research study from the Annals of Family Medicine explores the feasibility of promoting end of life conversations among geriatric patients using group medical visits and The Conversation Project Starter Guide as an educational tool.
Sorrell JM: End-of-Life Conversations as a Legacy
This article explores the disconnect between the number of individuals who want to have end of life conversations with loved ones and the number of individuals who actually do. It mentions innovative ways to encourage conversations pointing toward the use of games, frequently overlooked populations, and increased hospital staff training.
Patel MI, et al: Effect of a Lay Health Worker Intervention on Goals-of-Care Documentation and on Health Care Use, Costs, and Satisfaction Among Patients With Cancer.
A randomized clinical trial by Stanford University School of Medicine found that the use of lay health workers lead to increased documentation of goals of care, increased patient satisfaction, and lower costs.
Keeley MP: Family Communication at the End of Life
An introductory essay for a special issue in Behavioral Sciences dedicated to creating more awareness and knowledge regarding the depth, breadth, and importance of current research exploring family communication at the end of life.
Hamel L: Views and Experiences with End-of-Life Medical Care in the U.S.
A 2016 survey of Americans conducted by the Kaiser Family Foundation examining people’s views and experiences related to aging and end-of-life medical care. A majority of Americans give the health care system poor marks for providing end-of-life care and most believe that patients and their families should have greater say in the treatment they receive.
Mroz E, Bluck S, Smith K: Young adults’ perspectives on advance care planning: Evaluating the Death over Dinner initiative
This study from the University of Florida evaluates the impact of Death over Dinner, a popular initiative to encourage end-of-life care conversations, on young people’s attitudes toward advance care planning. A number of our community champions use TCP starter guides during “Death over Dinner” events.
What Matters Most to you? (Poster)
This research poster from Integra Community Care Network provides a summary and results of a 2017 educational program on advance directives and advance care planning in Rhode Island senior centers. This research was funded by the Geriatric Workforce Enhancement Program (GWEP) and used tools from The Conversation Project.
Introducing End of Life Group Discussions in the Primary Care Setting: Preliminary Findings on Patient Engagement and Satisfaction (Poster)
This research poster from Mt. Auburn Hospital and Harvard Medical School summarizes the results of a study testing the ability of the primary care physician to initiate end-of-life planning among non-terminally ill patients age 65 and older through a structured peer group discussion.
Barrison P, Davidson L: Promotion of Advance Care Planning Among Young Adults: A Pilot Study of Health Engagement Workshop Feasibility, Implementation, and Efficacy
This pilot study set out to evaluate the feasibility and efficacy of an interactive, peer-led, health engagement workshop to improve confidence and comprehension related to advance care planning (ACP) among young adults. Secondarily, this study evaluated if such workshops could promote ACP related behavior changes within this population.
Van Scoy L, Levi B, Witt P: Association of Participation in an End-of-Life Conversation Game With Advance Care Planning Behavior and Perspectives Among African American Individuals
To investigate whether an end-of-life conversation game motivates African American attendees to engage in ACP and to assess whether the game is well received and endorsed.
Sussman, T., Kaasalainen, S., Lawrence, J., Hunter, P.V., Boureois-Guerin, V., & Howard, M. (2021). Using a self-directed workbook to support advance care planning with long term care home residents. BMC Pallaitive Care, 20, 121.
Kaasalainen, S., Sussman, T., Nicula, M., Lawrence, J., Thompson, G., McCleary, L., Wickson-Griffiths, A., and You, J.J. (2021). Evaluating the implementation of the Conversation Starter Kit in Long-Term Care. SAGE Open Nursing, 0, 1 – 12. doi: 10.1177/23779608211051824
Sussman, T., Kaasalainen, S., Bimman, R., Punia, H., & Sussman, J. (2020). Exploration of the acceptability and usability of advance care planning tools in long term care homes. BMC Palliative Care, 19, 179. [this one reviewed all available public tools for psychosocial content and CSK was within it and is linked to the table in the paper].
There are multiple studies currently underway around The Conversation Project, and will link to these results as they become available. We welcome anyone to use The Conversation Project’s resources in their research, and would be happy to work with anyone interested.
Please forward any requests or questions involving research around The Conversation Project to ConversationProject@IHI.org.