There’s a saying: every day may not be good, but there is something good in every day. I’ve stolen this phrase over the years, and shared it with others (when a friend’s son was going through Leukemia treatment) and repeated it to myself (after my mom went through an unexpected health episode and died a month later in 2016). And, it continues to be relevant today, as we read the latest headlines or experience our own personal, upended life as we knew it during the current COVID-19 climate. What continues to keep our Conversation Team spirits high? What have we been privy to on a DAILY basis that is so good it makes our heart sing? It is the stories we continue to hear from individuals, community groups and health care workers continuing to take time to talk and share their stories with us of how they continue to support others on a daily basis to do advance care planning (ACP).
Below, we share some of what we are hearing: the stories and ways people are reaching across the internet, on the phone, through email, across traditional and social media channels, and across the street to engage in ACP for themselves, to help others they care about and to help their communities plan ahead now, during National Healthcare Decisions Day (NHDD) and always throughout the year.
One-on-one support, virtual pop-ups:
- Mindy Rickard, Larimer Advance Care Planning Project Coordinator in CO, notes there has been a sense of urgency in Northern Colorado to complete or review advance directives in this time of COVID-19. A surge of individuals and families have set up one-on-one, virtual walk-throughs with Mindy through the process of advance care planning. Using a variety of tools on their website and the local hospital systems patient portals, she guides people through conversations and the process, completing documents so that they are well thought out and available if needed. As an example, one of Mindy’s community partners and his spouse, having just returned from an international trip and self-quarantining at home, both decided that this was the time to complete their documents. They talked about what their wishes would be specific to COVID-19 and how that would reflect on their values and what matters in the future.
- Stefanie Elkins, whose work focuses on advanced healthcare, caregiving and end of life conversations/programs, plans on hosting two, one-hour zoom meetings entitled: “Can we talk about this? Advanced Care Planning in time of COVID 19.” In honor of NHDD, she also is thinking about setting up/offering one-on-one 20 minute Caring Conversation Check-In’s to those interested. Last November, she started hosting “Death over Drafts Happy Hours” at different greater LA Breweries. She has moved these events to the Zoom platform, hosting themes every week (e.g. grief, ACP, etc.).
- Juli McDevitt, provides one-on-one facilitated conversations to local senior community group members via Zoom on “Proactive Care Planning for COVID-19” for interested individuals and their health care agents.
- Jeanie Christian, an Elder Care Lawyer in Georgia had been planning to host Advance Directive support “popups” in April in honor of NHDD. She is now shifting this to Facebook or other virtual pop-up support to help people with, not just filling out Advance Directives, but also the full “3 C’s: Create, Communicate, & Coordinate.”
- Healthy Aging, Martha’s Vineyard, Larimer Health District ACP team, and others have been providing one-on-one connections via Zoom, noting this method has been fabulous to connect with those who otherwise may not have been reached. Many are noting they want to continue these virtual options beyond COVID-19 distancing restrictions. They are uncovering ways to reach more folks in the community rather than relying solely on people physically coming to a face-to-face meetings.
Shifting Regular Group Offerings to Virtual or Video Offerings
- The Goals of Care Coalition of New Jersey (GOCCNJ) has many resources for Advance Care Planning on its website, including information on ACP, aid in decision making, POLST for patients/caregivers and healthcare professionals, and COVID-19 specific resources for patients and healthcare professionals. Lori Feldstein from Goals of Care in NJ noted they also host a daily (Monday-Friday) afternoon Zoom webinar for patients and caregivers about the POLST form (and specifically for families and healthcare proxies of patients in Long Term Care).
- Bethel AME Church in Jamaica Plains, MA hosts a regular Planning Ahead 3-part series of sessions with congregants throughout the year. They plan on taking this online to keep up the momentum and continue this regular offering, virtually.
- Bill Lombard, a retired nephrologist in Bellingham, WA, along with a team of volunteers organized by long-time advocate Micki Jackson, offer a regular, ongoing community talk on “The Realities of Advanced Medical Interventions,” that supports good decision making before a person tackles their Advance Directive. These talks are typically followed-up with a volunteer ACP workshop. The last talk was recorded and the video along with powerpoint slides are now available for anyone to use in their ACP efforts, virtually. Micki notes Covid-19 has motivated so many to have conversations with their health care decision makers and get their Advance Directives done. Micki also noted their volunteer team is trying to get local grocers to offer The Conversation Project’s Being Prepared n the Time of Covid-19 guide during the 60+ age-designated shopping time.
- Hope Young, Advance Care Coordinator from Kōkua Mau in HI, shared a story that clinicians too are also craving connections. They typically hold a face-to-face, palliative care case study meeting called “Palliative Pupu” with clinicians. Pupu means appetizers in Hawaiian, so all typically bring an appetizer to share during these meet-ups. They get anywhere from a handful to 40 people maximum during these in-person sessions. Currently, they have shifted these sessions to Zoom; even without the draw of food, their inaugural session had 52 people show up, showing these connections truly do matter.
Group guidance and activities coupled with one-on-one support
- Amanda Meier with The Conversation Project in Boulder, CO is planning online, Zoom meetings throughout the day on April 16th and 17th for people to tune in for ACP guidance. They plan to share information on COVID-specific ACP using TCP’s new guide via live Zoom webinar and then offer one-on-one virtual consults to anyone in need the following day (using sign-up genius for individual slots between 8 am and 6 pm).
- Molly Garnett, a Spiritual Care Manager in North Carolina, is part of a local Toastmasters Club and recently provided a speech for this group about NHDD via Zoom. She used this as a practice run for an upcoming short presentation she is making during NHDD week in her hospital’s Department Head WebEx meeting.
- Nina Tiger and team from My Decisions Matter in Summit, NJ has been partnering with other larger organizations in their area and hosting virtual one-on-one short interviews via Facebook to get the word out (e.g. they recently did a 5- minute interview with a local Faith leader on having the conversation when social distancing). In addition they are partnering with a local film society to host a virtual movie watching event. They will ask folks to watch The Farewell ahead of time and host a panel discussion via Zoom Webinar. They are also planning a Zoom workshop for residents of a local Long Term Care facility and their families to plan ahead and do ACP.
- Reimagine, a nonprofit, sparking grassroots experiences and festivals that transform our approach to life and death, is hosting the first-ever, ongoing Worldwide Virtual Festival, with events facing death and embracing life during COVID-19. They are offering a series of ongoing calls, connections and resources to help keep people socially connected and talking.
- Tacy Silverberg-Urian of Advance Choices in NJ, noted they created a virtual “Five Wishes Made Easy” offering via Zoom in collaboration with bevival.com. This will be offered four times during the last 2 weeks in April in honor of NHDD.
- Champion, Tina Palmer will be doing a Facebook Live event for her local Council on Aging to replace the in person event scheduled for NHDD week.
- Erin Collins and their team of End-of-Life Doulas from The Peaceful Presence Project is offering a NHDD webinar: “Drafts and Directives” for a lighthearted approach to ACP…they switched from a Drafts and Directives event at a local brewery to a “Virtual Happy Hour” to walk participants through an advance directive.
- Champion, Laura Pilati noted her group has been doing weekly Facebook live events and planned web-based workshops as well as offering virtual appointments for ACP
- Garrick Colwell, of Kitchen Table Conversations in TX, starting Saturday, April 18, will be offering a weekly webinar titled: Advance Care Planning Made Easy; an introduction to how decide, discuss and document your end of life wishes. Additionally, a nonprofit that is organizing neighborhoods to talk about ACP has asked Garrick and his team to support their efforts via a train the trainer model (via Zoom) with the goal of embedding a local neighbor as a trainer (called an ACP Ambassador) who is willing to be available to work directly with their fellow neighbors on their schedules. This initiative is being rolled out in an East Indian community in their area.
- Chris Brinneman from Parkview Health, a non-profit health system, will host a conference with Honoring Choices IN with a “Back to the Future” theme, helping people understand how incorrectly completed ADs can impact future decisions.
Tapping Student Interest
- Sydney Goldberg, a Masters in Bioethics student at Harvard Medical School, has been working on a capstone project on the potential use of social networking sites to engage young adults in ACP (started prior to the COVID-19 pandemic). Since the Medical School moved to virtual learning for the remaining of the semester, they have been practicing their capstone presentations via Zoom calls over the last few weeks with their The fellow young adults in the program have been so excited to hear about Sydney’s project in light of COVID-19 and get involved; many have been following-up with questions about how to start these conversations with their loved ones. Most of her peers see this as a great opportunity to talk about these topics particularly as many of them are home with their families.
- My Life, My Choices in South Carolina, sent an email blast to their list serv with the subject line: “Let’s Connect Virtually.” In the email, they note: “If you’re going to be quarantined, you might as well take part in Health Care Decisions Month! Here’s how to get started,” and include links to resources to help answer the questions: “What matters most to you? What are your wishes for the future, and what you would want if you became seriously ill?” They encourage individuals to pick up the phone, start a video chat or send an email—have an open, honest conversation with someone important about what matters most.
- The Carolina’s Center in South Carolina is encouraging their health care providers (through polls on regular calls) to model ACP behavior by having nurses, social workers, chaplains to make sure they have done their own ACP. They encourage all staff to think about it, talk about it, and write it down. Polling people on Website, and on calls – have you done your own planning?
Tapping outreach organizations
- Champion, Pam Stoelzel suggests asking Areas on Aging offices to put Covid-19 ACP information into meals delivered to Meals-on-Wheels participants.
There are SO many ways people are supporting ACP now and across the year – with passion, creativity, and grace. A true testament that there IS something good in EVERY day. We encourage you to think about alternate ways to continue to support ACP during NHDD and across the year that might resonate with your community members, loved ones or those that you care about using whatever materials, tools and methods that may resonate the most.
More ideas and tips on hosting virtual events can be found in our blog: Supporting Your Community Virtually. Check out the recording and slides from our April 2020 Community Call: ACP Messaging and Repurposing NHDD during COVID-19: A Call for Community Leaders. And, join our Conversation Champions Discussion Group or put your pin in our Conversation Champions Map to connect, share and learn more from other community groups.
Want to add to the ideas above? Please share what you are or may be planning below!
One of our volunteer activities is mentioned in this blog post — The Realities of Advanced Medical Interventions.
I wanted to share this exchange between a community member and Dr. Lombard, one of our team presenters. I think, in this time of crisis, it is a poignant reminder that Covid-19 is a powerful motivator for many to tackle their Advance Directive.
Helps keep The Conversation flowing!
DR. BILL LOMBARD’S REALITIES OF ADVANCED MEDICAL INTERVENTIONS VIDEO:
ASK THE DOCTOR
Dear Dr. Lombard,
Years ago I saw two ICU nurses give the Realities of Advanced Medical Interventions talk. I left promising myself I’d do my advance directive right away. I didn’t. One excuse after the other. After watching your video, I need to apologize for not giving a tinker’s dam what my lack of planning could potentially do to those nurses, to you, to your frontline colleagues, to first responders who all do so much for us now at greater risk to themselves. Covid-19 changed my attitude. I got my advance directive done last night with help from your video and slides.
I don’t have an Ask the Doctor question about my healthcare choices, but would you be willing to share some thoughts on the importance of us doing our advance care planning as it relates to medical providers doing their job and their well being? It could enrich our conversations as we get through these trying times. My family would be more willing to listen to a medical professional than to me.
Thanks for asking how this impacts us as healthcare providers. My motivation for becoming involved in Advance Care Planning advocacy has its roots in my experience of taking care of critically ill patients whose loved ones struggled with life and death decisions because they had not had the important conversation about end of life care. It was the pain that I saw on their faces but also continuing care and interventions to patients that I/we knew had very little chance of survival. I recall feeling that we were desecrating the spirit of the person lying there who could not say, “Please, stop all this and just make me comfortable.”
In a communication with Micki Jackson, one of the ICU nurses with whom I worked and who started the “Realities” presentations, I think said it best:
“I think for me, the big motivator to present Realities is to help deal with the moral distress I witnessed in families and experienced myself in the ICU setting. What was offered to patients by the health care community was often not realistic in terms of the patient’s chances for a meaningful survival. Life was prolonged and everyone suffered. No one knew how to just tell people in simple, heartfelt words that there was nothing more we could or should do, and that comfort and peace should be the goal. Too often we embark down the road of ‘do everything,’ knowing people had no clue what that meant, and it likely wasn’t going to mean a return to any former meaningful life or health. I feel that by helping to educate people in my community, I have somehow atoned for my part in what is wrong in our system.”