WHAT MATTERS MOST
“Let us change the face of dying in our culture from one of fear and anxiety to one of acceptance and compassion. Inevitable as death is for all beings, let us work to create experiences that are positive, potent and transformational. — Judith “Redwing” Keyssar, RN, from Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying
Many of us spend a lifetime avoiding certain difficult conversation topics. Death and dying may be one of them. Sadly, over the past few months, shocking losses and changes have raised these issues to the forefront of our minds. So, let’s talk about the elephant in the room.
Before the coronavirus pandemic, we released a blog article #legendsliveforever which discussed how the recent losses of heroes and loved ones such as basketball legend Kobe Bryant and LACNETS founder and jazz musician Giovanna Joyce Imbesi caused us to pause and evaluate what matters most. This important question - What matters most? – may influence how we choose to live. It also guides how we might choose to live our final days.
In October 2019, Giovanna accepted that her health was declining and moved to Marin County to be surrounded by her found family, music, spiritual community, and nature. Soon after her move, she attended a workshop by UCSF Palliative Care RN, Redwing Keyssar entitled, “What Matters Most.” This advanced care planning workshop deeply impacted Giovanna. She began considering practical matters including gathering resources by building a care team, and creating clear advance directives to guide her loved ones in her care. Giovanna had hoped to share her insights and lessons learned with the LACNETS community, but unfortunately, she was unable to do so. Perhaps she has led the way by modeling—she was able to pass away in the way that she had hoped – peacefully at her Marin home, surrounded by loved ones.
Our community was still reeling from these losses when the coronavirus pandemic hit our country and the world. Our lives were abruptly turned upside down. While hunkering down at home over the past weeks, we’ve read frightening statistics and stories in the news. Not surprisingly, headlines have reported that doctors and other healthcare workers have been updating their own wills and advance directives as they prepared for the risks of fighting on the front lines. The doctors have gone one step further by urging the public to seriously consider creating meaningful advance directives.
What is an Advance Directive?
An advance directives is a legal document in which individuals express their wishes regarding the types of medical treatment they may or may not want if they were in a situation where they could not speak for themselves. Creating the document requires advance care planning to discover the types of decisions that need to be made in times of medical crisis. Advance care planning also involves naming specific decision makers and discussing your wishes with them and your loved ones so that they are prepared to advocate and speak on your behalf in the event that you are unable to do so.
Many people shy away from discussing end-of-life issues. Perhaps this avoidance is motivated by fears and anxieties. Perhaps there hasn’t been an opportunity to discuss these topics freely in a safe space. Or perhaps you’ve been uncertain about how or where to begin the conversation. Talking about these issues doesn’t have to be scary or awkward. Simply starting the conversation might help release some of the fear and anxiety. Talking about it can lead to self-acceptance and a deeper connection with loved ones. Taking steps in advanced care planning may even feel empowering. Also, it feels less overwhelming when the discussion happens before a crisis hits so your loved ones are prepared to carry out your wishes. Being prepared is one of the greatest gifts you can give your family and friends.
Start by asking the critical questions: What IS most important to you? What do you value? Everyone has different priorities. Some might want to be surrounded by loved ones. Others desire not to be a burden to their family. Getting one’s “affairs in order” is another common priority. For your loved ones to best care for you during a critical time, they need to understand what matters most to you. Here are some ways to begin this conversation:
Play the GO WISH card game with your loved ones to help clarify what is most important and how you can best comfort each other when you need it most.
Read blog article “Last Acts of Kindness: Care and Compassion at the End of Life” by Redwing Keyssar.
Read the book, "Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying by Redwing Keyssar.
Attend a “What Matters Most” advance care planning workshop, offered monthly by the MERI Center for Education in Palliative Care at UCSF/Mt Zion.
Check out PREPARE for your Care to download advance directives (available in Spanish), watch videos, and prepare a COVID-19 medical plan and hospital go bag.
Click here to download California’s Advance Directive.
Join Redwing’s “Food for Thought” Poetry Cafe sessions. These are free one-hour drop in sessions each week to express feelings and creativity during these challenging times.
We want to create opportunities for those in our community to begin these challenging conversations. To that end, we invited Redwing Keyssar to be the guest speaker at our next May 2020 webinar.
Watch now: “What Matters Most? Meaningful Advance Care Planning as a Gift to Your Loved Ones” with special guest, UCSF Palliative Care RN and a friend of Giovanna, Redwing Keyssar.
Written by Lisa Yen, NP, NBC-HWC
Director of Programs & Outreach, LACNETS