When I first started at Honoring Choices Virginia, I knew little to nothing about advance care planning (ACP) and had never really intended on learning about it until I truly needed it. I was young and fairly healthy, why would I need to know anything about advance care planning? I applied to this internship for patient advocacy, not for what I previously thought was end-of-life care. I met with my supervisor, Eleanor, and immediately saw her passion for ACP. I wanted to learn more and see how I could serve the ACP community.
I decided to jump right into the deep end and learn how to be a facilitator – logical next step, right? I log on to the first session late due to one of my master’s classes going long, and while I’m worried that I’m about to be thrown into the deepest part of the deep end, I’m instead met with kind and patient colleagues that share my passion for learning. I’m able to quickly fall in step and learn with everyone, and the content surprises me with how digestible it is. In between learning sessions, my colleagues and I practice our newfound skills, and I enjoy all the conversations we have about why each of us is here and what we plan to do with our training next. After learning about all the powers and formalities of advance care planning, we watched several videos on “motivational interviewing”, essentially showing us how to have these conversations in a respectful and thoughtful manner. This answered my biggest question – how do you go about talking about all things advance care planning without weaving in some fear and worry? I quickly learned that the goal isn’t to avoid these feelings – rather embrace them and encourage the client to really talk through all their underlying emotions so that their advance directive can serve them as best it can.
After completing the class and passing the facilitator exam, I looked out further to see what I could do to better push the initiatives of Honoring Choices Virginia. Eleanor informed me that a long-term dream of hers was to create a modern advance care planning online hub and hence spruce up the current Honoring Choices website. Given my experience with web design, this seemed like a perfect application for the certification I just received. Eleanor explained to me that many misconceptions exist around advance care planning, and several of the pre-existing resources are either outdated or focus solely on end-of-life planning. I got right on the job – I wanted to find resources that accurately reflect the breadth and depth of advance care planning.
What are these resources, you might ask?
I’ve picked some of my favorites and discussed them below! If you too don’t know where to start or aren’t quite sure how advance care planning can fit into your life at this moment, I recommend looking into some or all these resources to grasp the importance and various functions of advance care planning!
DOCUMENTARY – Being Mortal
Created in 2015 based on the book, the documentary follows Boston surgeon Atul Gawande as he discusses and investigates end-of-life care with fellow physicians. It shows the depth and care needed for end-of-life care, and how much thought must go into this piece of patient care, especially from the role of the physician. In many scenarios, the documentary shows the honest fear and lack of training that these professionals received for successful end-of-life care for their patients. This documentary sheds light on the importance of having a well-communicated plan when medical emergencies happen and emphasize the importance of care knowledge when navigating stressful medical situations.
BOOK – The Conversation: A Revolutionary Plan for End-of-Life Care
This book by Angelo E. Volandes serves as a great introduction to the hard conversations that come along with advance care planning and how crucial they are for the best care possible. The book discusses the complex decisions that go into medical care when you lose capacity of the patient and critically analyses the progression of end-of-life care within the United States. The author goes into several anecdotes regarding critical care, and how the situations could have been improved if advance care planning had been in place. Throughout the course of the book, the author advocates for advance care planning through “the conversation”, which allows for patient’s desires to be heard and then enacted upon later down the line.
WEBSITE – PREPARE for Your Care
This advance care planning website allows users to choose their own adventure – have a voice in your own medical care, or help others find their voices for their care! This website provides several perspectives to advance care planning and can easily be used for yourself or for others! Whether you are preparing to be an agent or preparing to choose an agent, this website can seamlessly guide users through the process and how they can best prepare! You can find a condensed advance care planning stepwise process as well as an advance directive from this site!
MOVIE – The Farewell (2019)
The Farewell takes on an extreme version of lack of advance care planning – where the patient does not even know of their disease! The movie takes a humorous take to medical decisions and family discussions, where the movie follows a Chinese-American woman named Billi and her struggle in keeping a secret from her grandmother, NaiNai, about her lung cancer diagnosis. As the family has collectively decided to not tell NaiNai her diagnosis, Billi struggles withholding that information, and is requested to stay home when the whole family goes to visit NaiNai. Billi disobeys, and a hilarious plot ensues where the entire family works tirelessly to keep NaiNai in the dark. I recommend this film as a fun break from your research, and challenge you to think about how other cultures handle death and serious medical information.
PODCAST – Pragmatic Trial of ACP by GeriPal
If you’ve gone through all my previously mentioned resources and are hungry for more, this podcast episode by GeriPal deep dives into the current research around advance care planning! This podcast episode discusses a recent study looking into the correlations between advance care planning programs, advance directive implementation, and usage of potentially burdensome life- saving interventions. It is a fairly science-heavy episode, but if you want to better understand the nuances of advance care planning, this is a must-listen! For all you healthcare people out there, this podcast episode is CME-eligible (for non-healthcare people, this means it is a certified medical educational video)!
If you have any questions about these resources or how you can access them, please do not hesitate to reach out to us and connect! We would be happy to guide you on your advance care planning journey.
We also recommend you check out our upcoming events, as these could help introduce you both to us and advance care planning!
Post by: Sammi Finnegan