April Digest
Who thinks about dying when the wind’s fresh, the sea beckons, and there are other boats to build?
-Drew Fetherston, April ‘24
Watercolor by Claire Marie Kerwin 2024
Our group came together again for the first time since February. I canceled our March weekend when our elderly cat turned a corner and it became clear he was nearing the end of his twenty-year life. It was hard physically, as sleep was rarely sound, and stretched me emotionally as I watched his world and abilities shrink ever smaller every day. David and I assisted him in navigating those final days and hours, which I consider a gift of time and attention, one that we gave him and ourselves. He died at home, with us, peacefully and with the utmost care we could give. We were lucky and are grateful, as it doesn’t always go this way.
April Recap
After a juicy check-in, much needed after a long hiatus, we discussed issues that emerged from our reading and watching. Many folks agreed that although conversations with significant others or partners regarding EOL options were indeed occurring more often, most had not filled out paperwork, like an advance directive, to make it “official”. We discussed reasons, some pro’s and con’s, and the pitfalls of planning ahead.
We discussed our impressions of the documentary, Being Mortal, and the challenges patients and doctors have breaching conversations about EOL decisions.
We then moved on to watching two other documentaries that further explored these topics. Both are available on Netflix and follow families and individuals as they navigate EOL decisions in the ICU, and in hospice care. Reflection and dinner conversation followed.
Finally, we departed with our assignments for next month and an invitation to reflect on Bonnie Ware’s The Regrets of the Dying. Bonnie compiled a short list of the regrets most often expressed by those she served in hospice and palliative care throughout her life. She shared that these regrets were part of the growth and transformation they all experienced as they came to peace in their final days.
Final May Weekend
Our final weekend will be a two day overnight in Marmot, Oregon. We’ll engage the following topics:
Final disposition options and their financial, ecological and cultural relationships.
Our personal relationships with death and dying now vs. when our group began. How do we want to creatively express this relationship individually and as a group on our final weekend?
Ritual and ceremony: how do we find or create meaningful experiences for ourselves and others in times of grief and loss? How do we make room for others while creating or practicing useful and respectful boundary-setting?
Shrouding a body & digging a grave… together in a final ceremony.
Study group members should check their emails in the next week to help them plan ahead for May. I’m really looking forward to how everyone is contributing to the content and creativity as we close out our experience together. Reach out if you need!
February Digest
“A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End
Photo of Neskowin at dawn by Josh Cronin, 2024. Filter added by JJ.
Recap
The Oregon Coast was a beautiful location for a very full weekend of exploring how we might choose to care for our dead at home, in community. We gave the topic some historical context, then addressed the legal and practical aspects in Washington and Oregon. We added some hands-on simulation, bringing both weight(actual!) and levity to the experience. Some great questions and challenges came up and a few that really hovered around me throughout the following week.
Websites to have on hand for reference:
Funeral Resources & Education WASHINGTON
Funeral Resources & Education OREGON
National Home Funeral Alliance
What’s Next
We’re back at the Jacobson Homestead in Marmot March 9, 1pm - 8:30pm.
Afternoon Topic: Having conversations & navigating EOL decisions
We’re stepping back in the timeline of death and dying based on an expressed group interest in EOL decision-making, and this will be the last structured time to cover this before the end of our program. We’ll watch and discuss two short documentaries, then those who want to spend some extra time with Advance Directives will have the opportunity to do so. Next month we’ll be heading into final disposition options and their cultural, environmental and political impacts.
Evening: Dinner & Unstructured conversations with a special appearance by the Basket of Death.
Bring your dish to pass and your Advance Directive, if you’d like to work on it or need witness signatures.
Common Threads
Watch Being Mortal(54 min), Doctor Atul Gawande and author of a book by the same name, follows how real life doctors, patients and families navigate end of life conversations. This PBS Frontline Documentary is on YouTube.
Read EOL Conversations can be hard from The Conversation.(5 min)
Familiarize yourself with the Conversation Starter Kit by the Conversation Project. (30 min) Are there questions that felt challenging or that stuck out to you? Reflect on those and consider sharing with the group. I may have a few copies floating during group.
Extra Optional Threads
Beginners Guide to the End pg. 248-283/Chapter 13 Hospital Hacks.(59 min listen) Reflect on whether you would be ready to advocate for yourself or a loved one in a hospital setting. This chapter may help create a better foundation for understanding the hospital setting, staff and what to expect in the event of an unexpected stay.
Photo of hands-on body care simulation, specifically getting ready to wash the hair. By C. Kerwin 2024.
November Digest
“You can’t go back and change the beginning, but you can start where you are and change the ending.” - CS Lewis
Recap
A long, grief-filled check-in transitioned into a review and discussion of topics we covered in previous months:
Medical Aid and Dying, VSED, Suicide & bodily autonomy
Establishing what future topics are most interesting to each of us from the remaining list of potentials.
We ended the day with a shared dinner and built an offrenda-style alter space where we honored ancestors and people or other beings we loved and have died.
What’s Next
After a long holiday break, we’ll reconvene on the Central Oregon Coast for a whole weekend to demystify and better understand the option of caring for our dead at home, in community. We’ll dive into why Home Funerals are a desirable option for many, the legal aspects of the practice, and raw practicalities of this very intimate relationship choice we have in Oregon and Washington.
Dates, times and how to prepare for the overnight will be shared with participants via email.
Common Threads
I recommend engaging with the topic in the following order:
Listen to 4 episodes of the National Home Funeral Alliance(NHFA) Podcast: A Path Home.
Crossroads Community Deathcare - (50:36) Two Southern Oregonians discuss how studying EOL/Death Care and their friend’s unexpected death prepared them to serve their community in new ways.
Scout Flies Home - (1:14) Deborah's daughter, Scout, died in a car accident in the summer of 2019. With the help of Scouts friends, Angela and Michael, both death midwives and home funeral guides, Deborah and their community conduct a home funeral and green burial on the farm where Scout lived. This is a follow up to the above podcast.
Home Funeral without a Home - (28:25) Susan Mackey shares her creative solution for providing after-death care when a home funeral wasn't possible, home funeral care just not in a home.
Choose one more that interests you! I include a few recommendations below based on unusual situations, challenges or surprises, but please feel free to explore on your own. Come prepared to share what you learned from your chosen episode in February. To Consider: Read synopses on another app, such as Apple Podcasts, Spotify, or other. Suggestions: 11/29/19, 11/19/21, 5/20/22, 2/3/23, 4/15/23.
Download, Print or Order a hard copy of the NHFA’s Home Funerals Guide & Resources:
We will use this throughout the weekend to simulate home funeral planning and practices. You will want to bring your copy, plus take time reading and becoming familiar with the following sections:
Introduction
Planning a Home Funeral
Body Care at Home
Appendices
Bring your printed state-specific Advance Directives with you, even if they are still in progress. We’ll take some time to discuss and work through them together!
Photo by June Jacobson 2022
Extra Threads
Grief and the Holidays
The holidays can be a really difficult time for folks grieving the loss or even experiencing a major transition that affect life and relationships. Remember, there are many types of grief, not just those that come from a death. If you or someone you know is grieving during the holidays, here’s a PDF and Podcast from Dougy Center in Portland.
For perspectives on how to empathize or support those who are grieving during the holidays, check out this article from the creators of the book What’s Your Grief?
Take care of yourselves.
Documentaries
For those interested in exploring how people navigate the dying process within the medical system as it was addressed in the popular book BEING MORTAL by Atul Gawande,
check out the movie documentary: Being Mortal (2020) where he has conversations with dying people, their doctors and families.
If you have access to PBS, you might consider the following:
Into the Night: Portraits of Life and Death (2023) It explores how we face death, our fears of dying and the stories that drive both comfort and conflict.
YouTube
The Undertaking is a behind the scenes documentary following the day to day of a family owned funeral home in Michigan. It follows multiple families and individuals stories as they unfold from dying through conventional funeral.
A Certain Kind of Death is a not an easy watch, but takes you into the real-world of what happens if you die in the US with no next of kin. It is indeed “unflinching”, so be prepared for some tough footage.
October Digest
I went to bed feeling full last night. Our time together was similar to past months, full of good conversation, exploring territory that for many evoked emotion, curiosity and realization about subjects we rarely have opportunity to engage. I feel grateful for this group every day. See you all next month!
Here’s what you’ll find in this month’s digest.
Recap
What’s next
Homework
Recap
Medical Aid in Dying and VSED. We discussed the legalities and arguments for and against these choices to end your life. We referenced the assigned readings and interviews.
Communication and having hard conversations. We discussed talking with doctors and people in our circles of care regarding end of life decisions. We referenced our assigned reading and personal experiences, which helped provide a framework for watching the movie Prognosis.
Prognosis viewing and discussion. This viewing activated conversations that spanned personal experiences, vulnerability, choosing to die at home, partner roles, identity, denial and attachment.
What’s Next
November 11th, 1-8:30pm This is our last group until our November overnight at the Oregon Coast.
Themes: Navigating the Final Weeks of End-of-Life.
Remembering & acknowledging our ancestral and cultural legacies.
A photograph on display at With These Hands, a community project organized by Barbra Cronin and the Monmouth Senior Community Center. J Jacobson.
Shared Threads…
BGTE Chapters 11-15 These next few chapters take us to the end of life, or when a person takes their last breath, with special focus on symptoms, hospice and palliative care, navigating hospital stays, and experiencing EOL as a caregiver.
Watch Jane’s VSED Journey, found here. We discussed VSED this month and I think this is a valuable, short video testimonial(10 min) from a family caregiver whose mother chose to end her life in this way. Follow it with Rosemary Bowen’s Fast, on the same page which provides a first hand account with valuable supplemental family and medical perspective. Rosemary’s video shows her decline, for folks who need to be prepared for that ahead of time.
Revisit Assigned threads from last month that you missed or need to review. I’m including this because the topics are going to come up again this month and are juicy.
Bring to Group
This dinner will be dedicated to family ties, blood and otherwise, that we want to acknowledge, honor or or celebrate. We will all have an opportunity to share about our people and you are invited to bring food, beverages, photos or memorabilia. There will be an alter space to display items including spaces for candles if you’d like to bring them.
September Death Club Digest
DnD Club September digest.
Contents
September Recap
Next Month: What to expect
Common threads to pull as a group
Reflection Questions
Choose Your Own Adventure: Optional threads to follow if you’re inspired
September Recap
End-of-Life(EOL) web of services, bureaucracies, professionals and practitioners we may encounter before we take our last breath. And what a web we wove! We also started to touch on the separation of EOL Care vs After Death Care, the confusion that can emerge in the terms, as well as expectations and regulations evolving related to the holistic death care movement. We’ll continue pulling this thread as we move forward.
Planning ahead: the paperwork and choices, plus what gets in the way. Here are a couple EOL planning guides that came up: End Notes from Peaceful Presence Project in Oregon. CAKE’s online version, which is also free. BJ Miller is on CAKE‘S medical advisory board.
?? One question that emerged for us was: Would an Advance Directive from a different state be honored, while acknowledging that they are not always legally binding even within the state of residence depending on family dynamics and other conditions ?? We’ll see if we can answer that by next month.
We discussed our hopes, fears, and questions regarding our own death or the death of loved ones. We also discussed what we would regret leaving undone if we died tomorrow.
October Theme
Facing our Mortality & Tough Converstions
October 14, 1pm - 8:30pm Potluck @ 6pm Overnight camping and accommodations available, but check in first.
Private screening of the documentary Prognosis: Notes on Living. Thanks to Citizen Film Company for providing a private link for our meeting this Autumn. This is a film I encountered during my INELDA Death Doula training last year.
Discuss documentary. We’ll weave the material we’ve covered so far into that discussion.
Thematically appropriate pie from our September gathering made by the talented C.K.
Everyone
Common Threads…3-6 hours
We have many choices to make and potential conversations to have at the end of life. This month we explore ways people navigate personal, medical and cultural conversations around their choices and how we might come to better understand them.
Please read or listen to Beginners Guide:
Chapter 6-9
Please read or listen to Advice for Future Corpses(available on audio through most libraries):
Chapter 4
Some of us may have the choice to engage in Medical Aid in Dying (MAiD). Please choose to listen to one of the following:
OPB Interview with The Inevitable Author Katie Engelhart.
OR (AND?)
Recording of Anita Hannig reading an excerpt from her book The Day I Die , followed by a conversation between Anita and Lisa Vigil Schattinger from Ohio End of Life Choices.
Familiarize yourself with the MAiD Pros and Cons arguments here.
Look over the EOL websites from your state and come familiar with Voluntary Stopping Eating and Drinking(VSED). Good starting points in each state:
End of Life Choices
Compassion and Choices
Reflection Questions
Revisit page 111-12 in BGTE. Which option would you choose for yourself at this time? Why?
Revisit page 123-126 in BGTE. How would you describe your relationship with your doctor(s) and how did the suggestions made on these pages align with your experiences?
Consider the current ways you cope with disagreements, discomfort, stress and grief. What coping mechanisms do you think will continue to serve you when you face a future loss of someone you love and which do you think could be helpful to shed or replace?
Shifting roles from spouse or partner to patient or caregiver is hard. When considering both roles, where do you think you’ll likely struggle or feel challenged?
Shoshana Berger recommends practicing healthy coping skills on small losses…like losing keys, failed meals, or other routine things we face on a weekly basis…as a way to exercise our loss resilience. Just dropping that here to see if anyone wants to give that a try. Feel free to share how it goes.
What are your thoughts and feelings about MAiD and were there arguments for or against that stuck out to you?
Choose Your Own Adventure
Extra Optional Threads
Legal stuff…
How Washington expanded its MAiD accessibility this year.
Listening…
They’re Severely Mentally Ill. Is it ethical to help them die? An interesting exploration of MAiD from a European perspective. Canada is exploring expanding MAiD to those suffering with Mental Health and it is a hot topic. Although this psychiatrist is from the Netherlands, there are perspectives on the ethical challenges of that expansion to the US and North America in general.
Watching…
I still recommend watching Lulu Wang’s The Farewell from last month if you haven’t already. It relates to our topic this month.
Guillermo del Toro’s adaptation of Pinocchio. Relationship with death and mortality is at the heart of this movie and it’s a great season to watch it if you have access to Netflix.
Wishing you all the color and light you need to harbor inside, as we watch the light slip from our days into the darker seasons ahead. Happy Autumn!
August Death Club Digest
A brief recap of our August weekend together, followed by where we’re headed and a how to prepare.
Recap
Next Month: What to expect
Everyone: Common threads
Reflection Questions
Choose Your Own Adventure: Optional threads
Recap
Timeline of US deathways explored in an interactive activity.
Introduction to the value of “emotional granularity”inspired by Atlas of the Heart by Brene Brown.
Empathy and Empathy Misses, aka “barriers to connection” if the primary need is actually connection provided by wiseheartpdx.org.
Types of Grief from What’s Your Grief: Anticipatory, Ambiguous, Nonfinite, Cumulative, Absent(or Delayed), Prolonged or Complicated, Disenfranchised.
J. William Worden’s Four Tasks of Mourning.
The Beginners Guide to the End by BJ Miller and Soshanna Berger. A hard copy is available to you all, but it’s also available as an audiobook(read beautifully IMHO by the authors) and ebook for those interested.
Sharing Life Maps, a way to share the parts of our personal story that stick out to us in this time and space.
Porcupine Stank.
Next Month
September 16, 1pm - 8:30pm Potluck @ 6pm Overnight camping and accommodations available, but check in first to let me know so we can plan ahead.
End-of-Life web of services, bureaucracies, professionals and practitioners we may encounter.
Hopes, fears, questions regarding our own death or the death of loved ones.
Planning ahead: the paperwork and choices, plus what gets in the way.
Dye Surprise: The start of an optional and communal dye project that incorporates garden plants and local mushrooms, that culminates in a final functional craft directly applicable to death care.
Everyone
Common Threads…3-6 hours
Grab your copy of the Beginners Guide to the End. Please read the Introduction and Planning Ahead sections to pg 76. Then familiarize yourself with their resource page...at least enough to know what they provide.
Find and review your state’s Advance Directive online or a physical copy if you have one available.
Read “Good Death” Request Access, from the book Advice for Future Corpses by palliative nurse and Oregon local, Sallie Tisdale.
Listen to All There Is with Garrison Cooper, Episode 2 where he interviews Stephen Colbert. The two grapple with their own losses and grief.
Reflection Questions
What does a “Good Death” mean or look like to you?
What are your thoughts and feeling on dignity, autonomy and control at the end of life?
As you review your state’s Advance Directive, what questions, resistance, thoughts or feeling come up?
What aspects of the grief podcast stuck out to you or were there parts with which you identified?
And how does gratitude fit into your loss and grief emotional landscape, if at all?
Choose Your Own Adventure
Extra Optional Threads
On choices when planning ahead…
If you’re interested in why we may want to question CPR as a baseline of emergency care and choose a Do Not Resuscitate(DNR) order, here is a New Yorker article written by a palliative care doctor The Hidden Harms of CPR . It provides perspective on the importance of knowing the risks and complexities of this practice. If you find it behind a paywall, here’s a shorter NPR article with all the basics, but less layers of contextual storytelling.
On communication with doctors and family members regarding terminal illness…
The Conversation Project provides reflective inquiry to help guide conversations with medical staff and others after a terminal diagnosis and prognosis. SpeakSooner also provides videos, blog articles and a reflective workbook(on our library shelf) for navigating conversations with family or medical teams throughout a terminal illness or at end-of-life.
On building our Grief Understanding…
The website What’s Your Grief is well organized and has some helpful info. There’s a whole section devoted to Supporting Grievers, which can be handy. Their book by the same name is on our library shelf to explore.
The Dougy Center is hosting a webinar September 7th Becoming Grief Informed. I’ve been told it is similar to the webinar I attended during training. I’ll share aspects of this webinar, but Monique is more eloquent and experienced(PhD), so if you have the resources and an interest in grief principles/theory, it may be worth your while.
This resource Being Grief-Informed: From Understanding to Action by Dougy Center is helpful grief advocacy tool.
Watching & Listening…still optional
Watch this episode of Planning with Pride, part 1 of a webinar series created by Portland Friendly House Elder Pride Services. Speakers discuss the reasons for planning ahead, important paperwork to complete, an introduction to end-of-life doulas, reasons we avoid planning and the benefits of moving beyond our hesitations.
The adult animated series Midnight Gospel on Netflix is a sit back, maybe even with some favorite mind altering helpers, and enjoy the ride…or don’t…sort of affair. I did. I recommend reading a little about the series first at the above link, then start with episode 8, in which he interviews his mother who has cancer. If you’re into the style, check out 7, where he interviews Caitlyn Doughty of Order of the Good Death(one of the “aggressively hip” people Tisdale refers to in the assigned reading). If nothing else, it’s hard not to appreciate how Clancy spacecrafts from one dimension to another.
For a light-hearted but moving culture clash of perspectives on dying and grieving, based on a true story, check out The Farewell by Lulu Wang. It is likely behind a paywall, but if you’re looking for something thought and heart provoking but not a “downer” then I highly recommend it. I watched it on Amazon a year ago.
I spent January and February of 2022 spinning yarn on my wheel while listening to the local grief podcast Grief Out Loud, created by Dougy Center. Great host and the stories are often illuminating.
Welp, that’s a wrap. You’ll hear from me again a week or so ahead of our next meet-up. Until then, I’ll look forward to sharing space and time with you all as we really start sinking into this stuff.