The future depends on what we do in the present. —Mahatma Gandhi1
As I write this editorial, I am also composing an email to friends, family, and colleagues, inviting them to join me to celebrate National Healthcare Decision Day (NHDD), a designation formed from a collaboration with The Conversation Project; a public engagement initiative of the Institute for Healthcare Improvement (IHI). The goal is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.2
I have been an advocate of The Conversation Project for many years. This will be my third year sending an email about NHDD. The email project was inspired in 2020 during COVID-19 lockdown when we were struggling to create virtual experiences for nursing students. During a Zoom class, we shared the information from The Conversation Project and asked students to complete the online modules. This was done very efficiently as all students at this university were already members of the IHI Open School. Moreover, they could share the link with others as The Conversation Project module is free for all! The March lockdown continued into April, and the NHDD provided an opportunity to share this new knowledge.
Students developed creative communication methods to begin health care discussions with people in their orbit. Some of this was simplified as students were at home and had access, and long hours, to spend with family. However, proximity did not ensure that these discussions would take place. Many families were not ready or felt that this added additional fears and stress during the pandemic. Students reached out in imaginative ways, creating Zoom meeting with grandparents and friends, writing captivating emails, and sharing the topic on social media. One of the exercises that was most helpful was asking students to work in teams using questions now available in the What Matters to Me workbook, which begins with a simple and gentle question, What is your understanding of your current health situation?
I have come to appreciate the power of these 9 words and now use them to begin conversations with patients, friends, and family facing a new health challenge. These few words can open a door to the patient's world and/or create a platform for scholarly discussion among students and colleagues!
Leaders at IHI recognize the power of students to disseminate this work. On a community recording session, they featured the work of students, citing “Despite popular belief, young adults don't shy away from difficult conversations/mortality. In fact, they are some of our biggest potential ambassadors when it comes to normalizing conversations about how you want to live through the end of life. On this call, we'll learn from several groups/individuals who are engaging students to have conversations about what matter most through the end of life.”3
During those first months of COVID confinement, students and faculty also completed a “book read” choosing from the following list: Being Mortal by Atul Gawande, You Can Stop Humming Now by Damiela Lamas, Every Note Played by Lisa Genova, and When Breath Becomes Air by Paul Kalanithi. They were asked to choose an event, a person, or element that struck them and helped them relate to a patient or family member—or themselves. I have added these recommendations to my 2022 letter, as these books continue to encourage discussion and insights.
I will continue to support the work of The Conversation Project and engage others in this work—not only on NHDD, but every day. These discussions are not easy—and often delayed until time becomes short—and we or our loved ones can no longer speak for themselves. As ICU nurses, we know this; we have seen the despair and fear on the faces of loved ones who are challenged by our questions about care. A common response is: “I have no idea what he/she would want” or “I know that he/she is a DNR, but I am not sure where that begins and ends,” and “I am not sure who is their advance directive”
Please share these tools, resources, email formats, and other ideas with your students, colleagues, and family members. For us, every day is a health care decision day.
Dear Friends and Family,
I hope that this email finds you well. Today, April 16th, is National Healthcare Decision Day (NHDD), founded by an organization called The Conversation Project, which works to ease the burden of end-of-life care discussions. National Healthcare Decision Day was created with hopes of educating the public on the importance of advanced care planning, a process that is necessary for all people, regardless of age or health status. As an ICU nurse, I know that it is never too early to have these conversations. My hope is that we move past the stigmatization of end-of-life care discussions to ensure that our loved ones receive the care that they want and deserve.
Although research has shown that while many people believe planning ahead is important, only a small fraction of people have had these difficult conversations. To make this process easier, The Conversation Project has provided resources on its website that allow people to discuss end-of-life care, focusing on topics such as advanced directives and designating a health care proxy. The guidance and explanation of key terms in these documents provide clarity and examples as people approach these discussions. These tools help users voice their desires and begin what may be the most important discussion of their lives.
I have attached many resources to help you understand the mission of NHDD, The Conversation Project, and advanced care planning. Please explore these links, especially Your Conversation Starter Kit and the State Specific Resources (which allow downloads of advance directives). This language can get confusing as the legal document that allows a proxy to speak for someone else may be called a health care proxy form or an advanced directive. Often, the advanced directive document includes both a health care proxy form and a living will, where specific medical treatments a person would want or would not want can be listed! You will be able to download one that is specific to your state, fill it out, and share it with your family and providers!
I would also like to recommend some books for your book clubs, journal groups, or individual readings. These books were read by families, nursing students, and colleagues. They provide rich insights into the patient and caregiver experiences, including: Being Mortal by Atul Gawande, You Can Stop Humming Now by Damiela Lamas, Every Note Played by Lisa Genova, and When Breath Becomes Air by Paul Kalanithi.
Please know that although today is NHDD, any day may require you and/or your family to make difficult decisions. I hope this information is helpful. Please feel free to forward this email to your family and friends.
Please feel free to reach out to me if you have any questions or would like to talk! Thank you!
Advanced Care Planning Explained:
National Healthcare Decision Day Explained:
The Conversation Project:
Your Conversation Starter Kit:
What Matters to Me Workbook:
Choosing a Healthcare Proxy:
State Specific Resources:
COVID-19 Specific Resource:
More ways to promote NHCDD: