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June 2022

JUNE 2022
NEWS BRIEFS MEDIA INELDA UPDATE PRACTICE CORNER EVENTS
Disregarding Assumptions: Care for LGBTQIA2S+ and Nontraditional Families at End of Life
Disregarding Assumptions: Care for LGBTQIA2S+ and Nontraditional Families at End of Life
by Alex Snell
Christopher was one of my care management clients—a gentle yet feisty queer academic and activist with stage 4 prostate cancer who had begun hospice care. One evening I stopped by his apartment to drop off a prescription while he was dining with his friend John. Christopher’s care circle had informed me about many of Christopher’s friends, but hadn’t mentioned John. Christopher invited me to stay and talk with them. John seemed to be from a different world than that of Christopher’s other friends, who were successful artists and intellectuals. He was a drifter, a bit down on his luck, and projected sexuality. As they showed me photographs of their travels together over the years, it dawned on me that John was Christopher’s boyfriend. I realized I had made assumptions about Christopher’s relationship with his life partner, Niko. But the situation with John did not surprise me.

 

*Names in this article have been changed to protect the identity of individuals.

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INELDA Profile
Ocean Phillips: Spiritual Advocate for the Dying
by INELDA Educator Garrett Drew Ellis
Ocean Phillips (they/them) is an INELDA-trained doula who has led a long life of contemplation and spiritual enlightenment. Dedicated to service and companionship, they believe that “joy comes from serving people by providing the best possible conditions for a peaceful and serene death” and that “as a previous (spiritual) seeker, I now consider myself a ‘finder’ with a mission to serve others, walking this journey back to our original home—our essence of oneness with all that is.” INELDA Profile
Q&A with Ocean
This may seem broad, but who is Ocean Phillips?
“That is quite a loaded question,” Ocean says. “I am a spiritual seeker and now a finder. My identity is not really with all the particulars that have made up this life. I am now a septuagenarian.
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 INELDA Membership
UPCOMING EVENTS
INELDA Workshops - Mapping Emotions Mapping Emotions Workshop
Friday 7:00–8:30 p.m. (ET) Registration is open for the Mapping Emotions Workshop focusing on discerning, processing, and managing our emotions and feelings. Join educators Dr. Jamie Eaddy Chism and Wilka Roig for an interactive exploration.
Going Deeper Doula Training Going Deeper Doula Training

Starting Monday 6:30–9:30 p.m. (ET), this three-part series is for those interested in accessing the latest concepts explored in INELDA’s end-of-life doula curriculum if your training occurred before fall 2021. Classes meet June 27, 28, and 29.

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MEDIA OF THE MONTH
One Film, a Book, and a Podcast
In honor of Pride Month, the INELDA team has put together a few media resources that look at LGBTQIA2S+ relationships and end of life. READ MORE
 

Radical Acts of Love Film

The Film: Radical Acts of Love, created by Jacob Y. Miller and Camila Faraday
Synopsis: Filmed over a three-year period, the film Radical Acts of Love chronicles Linda Folley’s Struggle with early-onset Alzheimer’s.  The film tells the story of Linda, a master programmer, pilot, scientist, and philanthropist, who was diagnosed with the disease at 52.
Don't Cry For Me Book
The Book: Don’t Cry for Me, by Daniel Black
This 2022 release was named an “Anticipated Book” by Essence magazine and was on the New York Times “Shortlist.” The novel tells a story of empathy and forgiveness through the tale of a Black father making amends to his estranged gay son in letters written on his deathbed.
 Queering Death Podcast
The Podcast: Queering Death, by Ori Basto Aguila
Now in its second season, Queering Death covers the often-taboo subjects of death, grief, loss, and spirituality from the justice and liberation approach and from the perspective of a trans and two-spirit Indigenous Muisca-Jewish death walker as well as from the host’s trans and gender-expansive guests.

 

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Jump into INELDA’s Summer learning series
by Jamie Eaddy Chism and Cloud Conrad
Summer Learning Series
The Summer Learning Series was developed with your feedback in mind. Based on responses to a spring survey to learn what topics were most important to you, we’ve created a full catalog of learning experiences to support your continued growth as an end-of-life doula, caregiver, or care partner. Offerings include doula training, continued learning classes, and the first in a portfolio of one-session workshops—all offered online so that you can learn in an environment that’s comfortable for you. And the summer classes are offered in weekday, weekend, combo, and immersive models to fit a variety of scheduling needs. READ MORE
Summer Learning Series
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INELDA UPDATE
INELDA FIRST IN-PERSON TRAINING FOR 2022!
Garden Spot Village, located in New Holland, Pennsylvania, will host End-of-Life Doula Training Thursday through Saturday, September 8–10, 2022. The training, led by Dr. Jamie Eaddy Chism, director of program development, and Kris Kington-Barker, director of special programs, includes over 25 hours of in-person instruction and 12 hours of self-study prior to classroom learning. The cost for the three-day course is $650. For nurses, 40 CEUs are available for an additional $90. The class size will be limited to 70 people. READ MORE
Garden Spot Village In Person Doula Learning
 
COALITION BUILDING WITH CCCC AND GCCNJ
INELDA recently joined as members of the Coalition for Compassionate Care of California (CCCC) and the Goals of Care Coalition of New Jersey (GCCNJ). Both organizations work to ensure quality care at the end of life through policy advocacy and collaboration with health care providers, government agencies, and community-based organizations to develop and implement optimal models for health care delivery. READ MORE
 Coalition Building - CCCC and GCCNJ
INELDA HOSTS LIVE PANEL DISCUSSION ON PROGNOSIS: NOTES ON LIVING WITH THE 2022 CONNECTICUT LGBTQ FILM FESTIVAL
The 35th Connecticut LGBTQ Film Festival will feature the film PROGNOSIS: notes on living INELDA invites all those who have seen the film to join us online to meet filmmakers Nancy Otto and Kate Stilley Steiner during a panel discussion exploring the film’s themes. INELDA will host this panel discussion June 19 from 7:00–8:30 p.m. (ET). For those who have yet to see this INELDA-supported documentary, tickets are available for the June 12 in-person screening and for online streaming June 13 to 19. READ MORE Out film CT Festival - Prognosis
CLASS DISCOUNTS FOR STUDENTS AND MILITARY MEMBERS
INELDA is happy to announce 25% off all tuition fees for trainings, workshops, and memberships for students and military members. To take advantage of this offer, email your school or military ID to [email protected]. Please note, this discount is not valid with other offers. READ MORE
INELDA’S JUNE WEBINAR
Monthly Member Webinar
Building Compassionate Community Part 1:The Role of End-of-Life Doulas in Serving the LGBTQIA2S+ Community
Wednesday, June 29th, 7:00-8:30 p.m. (ET)
In honor of Pride month, join INELDA’s monthly webinar as we explore intersectionality and how end-of-life doulas can nurture connections in and across communities. We are committed to making death care education and doulas accessible for all, but realize that many experience inequities in care because of gender identity, gender expression, and sexual orientation.
Guests Julie Weinstein, CDO of the ACLU of Southern California, and Kathleen LaTosch, founder of LaTosch Consulting, will share their wisdom and practical knowledge of how we can effectively establish and develop relationships that honor folx from various walks of life. Increase your fluency, understanding, and skills to make inclusivity more of a reality.

 

INELDA director of program development, Dr. Jamie Eaddy Chism, will facilitate this webinar, bringing her deep awareness of intersectionality in the context of dying and death. Come expand your ability to make the world a safer, more supportive place. READ MORE 

Monthly Member Webinar // Building Compassionate Community Pt. 1
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PRACTICE CORNER
TOOLBOX TIPS
Tool Box There is no playbook for any type of sudden death scenario; everyone and every situation is different and requires a lot of improvising. Religion and language often become the hardest elements to navigate and can be the biggest unintentional trigger. 
For example, let the grievers lay out the language to be used. If they avoid the use of “suicide,” then you do too. If that’s the word they use, then you can use it, but be aware of the context in which the grievers are using language so you don’t contradict them or appropriate their usage.
—Katie Owrig
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SHARING SOURCES
Healing Circles Global
In 2006 Diana Lindsay was diagnosed with stage 4 lung cancer and told she had less than a year to live. When her doctor stated she had a 1% chance of living beyond the prognosis, she asked “OK, well, how do I get into the 1% club?” For Diana, and then later her husband, Kelly, who was diagnosed in 2014 with stage 1 kidney cancer, the answer was supportive community. Sharing Sources
Diana started researching anything and everything that could support her body and health at the time she was diagnosed. She decided to have a “big love-in,” gathering her people together at a big party to share her cancer news with her community all at once.
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ASK INELDA

Ask Inelda Image - Eucalyptus Branch
I have some anxiety around missing the last breath. Does it get easier to start recognizing when someone is about to die? —February training participant
Educator Garrett Ellis: I think it starts to become more intuitive. My ability to feel and get a sense of what is happening in the room has grown. I certainly cannot predict death, but you begin to get a sense of things changing in the atmosphere. Every death I have witnessed has been different. Use the signs and symptoms taught as guideposts and know that the speed of death is different for every single person.

 

Educator Wilka Roig: The signs and symptoms of active dying are not “there for us” to know when the final breath is going to happen. It is not a clock for us to start a countdown. The understanding of the process is there so we can help normalize and ease the anxiety of the loved ones. The signs and symptoms for an individual dying when no disease is present can go on for months, so regardless of when it may happen, we as doulas are there to support the dignity and humanity of the dying person. Also, while some would prefer to die surrounded by loved ones, a dying person may choose to take their last breath when no one is present. So it is important to remind loved ones of this, and to give some spaces of alone time to those who are dying in case their final breath is to be taken while alone. READ MORE

Please submit questions to [email protected]
Self-Care Prescription
Self-Care Prescription

  An Extrovert’s Approach to Self-Care

Lately, I’ve been thinking a lot about self-care for extroverts. Many of the touted self-care tips and remedies are about slowing down, looking inward, and sitting with oneself—and trust me, I need all those things. Yet it all became clear to me as I stood in a crowd of people this past week for The Overnight, a walk to support the American Foundation for Suicide Prevention, that my self-care is community. The electric energy that I get when being together with others. The emotional connection that happened when I was asked to turn to my neighbor and say, “I got you!” The feeling of being in community and supporting each other feeds me.

 

I had asked a dear friend to walk with me a few months prior, and her reply was, “I can’t—from a self-care point of view, I can’t be up all night!” And I totally respect that. Knowing what sustains each of us can be radically different. As I walked throughout the night, each interaction I had made me more awake and kept me going. The more people that stopped and asked why we walked or cheered us on became part of that expanding community—feeding our energy and nourishing each other with love.

 

—Loren Talbot 

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News Briefs
End-of-Life Wishes for Terminal Cancer Patients in China
A team of scientists examined preferences for EOL care among patients with terminal cancer in China, according to a report published in JAMA. More than 10,000 people are diagnosed with cancer in China daily. In 2015, 2.8 million people died from cancer in the country—one-third of the worldwide cancer deaths. For this study, 183 patients with terminal advanced cancer at their EOL were interviewed from a hospital in Shandong Province to ascertain their EOL preferences. READ MORE  News - China Cancer EOL
Location of Death in Latin American Countries
To best understand end-of-life and health system planning in Latin America, researchers examined 2,994,685 death certificates in 12 Latin American countries from 2016 to 2018. According to results published in Journal of Global Health, 31.3% of deaths occurred at home, and 57.6% in hospitals. Although most deaths in Latin America occur in hospitals, the number of hospital and home deaths vary greatly between the countries. READ MORE
News - Palliative Care Education
Bipartisan Palliative Care Education Bill Back to the House
Sens. Tammy Baldwin (D-Wisc.) and Shelley Moore Capito (R-W.Va.) have reintroduced for the third time the bipartisan Palliative Care and Hospice Education Training Act (PCHETA) to provide money to improve and sustain the dwindling palliative care and hospice workforce. The bill focuses on three key areas. READ MORE
The Final Word
For My Daughter in Reply to a Question
by David Ignatow

We’re not going to die. 

We’ll find a way. 

We’ll breathe deeply 

and eat carefully. 

We’ll think always on life. 

There’ll be no fading for you or for me. 

We’ll be the first 

and we’ll not laugh at ourselves ever 

and your children will be my grandchildren. 

Nothing will have changed 

except by addition. 

There’ll never be another as you 

and never another as I. 

No one ever will confuse you 

nor confuse me with another. 

We will not be forgotten and passed over 

and buried under the births and deaths to come.

 
Open Book
 

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© INELDA 2021 International End of Life Doula Association is a
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