Home > Newsletters > FEBRUARY 2023
| THE GRAVE WOMAN: ADDRESSING DEATHCARE INEQUITIES WITH COMPASSION |
by Loren Talbot
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Joél S. Maldonado grew up in a communal space, one where death and dying were not kept from children. “We were a part of the grieving process, the mourning process, funeralization, and burial,” Joél says. “My mothers and my grandmothers and my aunts, and all of the elderly women in my community, went and took care—basically doulaing—for those that were dying in nursing homes.” Her uncle was a mortician and Joél was “morbidly curious.” At 7 years old she started hanging around the funeral home and fell in love with the work her uncle was doing. “He taught me the sacredness of space, and I fell into a love and fascination with caring for people at the end of their life.”
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| educator Profile |
Kris Kington-Barker
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Kris, director of outreach and care provider programs at INELDA, has been advocating the services and benefits that end-of-life doulas can bring to the dying, caregivers, and end-of-life care teams since 2015. Before coming to INELDA, she was the executive director for Hospice of San Luis Obispo County for 10 years.
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| Q&A with Kris |
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Can you share some of your work life background in psychiatric nursing, hospital and rural health clinic administration, and hospice administration?
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| Most of my early work experiences focused in areas that were less popular—they were experimental at the time and less lucrative financially but afforded me incredible mentors and learning. An example was working for a 24-hour screening clinic in 1974 that was an alternative effort for individuals who were picked up in nightly police sweeps in downtown San Jose, California. |
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Going Deeper | LifeWriting
February 12-26 | SUN 6-9pm ET
Seeking to learn the art of storytelling and how to conduct a meaningful life review? Going Deeper LifeWriting is designed to teach storytelling and to provide a road map for writing and developing your own or someone else’s life story. In this three-session class, taught by Garrett Drew Ellis, we will explore interviewing and life review techniques as participants learn how to write about someone who is terminally ill, a loved one in their life, or their own life story. Click to see the full schedule. | REGISTER |
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Creating Visibility Workshop
February 16 | THU 7-9pm ET
Looking to offer services in your community? Develop an action plan to build visibility, credibility, and contacts in this workshop. Whether recently trained as a doula or having served the dying for years, participants will walk away with ideas, tools, and best practices to implement right away. Join educator Cloud Conrad for an evening of inspiration, ideation, and implementation planning for marketing your doula services. | REGISTER |
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| MEDIA OF THE MONTH |
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The Worst Girl Gang Ever:
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| A Survival Guide for Navigating Miscarriage and Pregnancy Loss |
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by Bex Gunn and Laura Beckingham, HQ (2022)
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| Bex Gunn and nurse Laura Buckingham are two women sharing their experiences of baby loss with the aim of bringing about change and wider recognition of the subject. They started The Worst Girl Gang Ever podcast in 2020, knowing how little recognition and support there was out there for others who find themselves in this heartbreaking situation. Bex and Laura also run Pathway to Recovery courses along with six experts in various fields, with the aim of supporting, nurturing, and empowering women after baby loss. |
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Considering Consent at End of Life
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by Lara Stewart-Panko
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In thinking about respectful deathcare, the issue of consent looms large. In many parts of the globe, informed consent and informed refusal are cornerstones in health care. However, the actual implementation of true, free, informed choice can often be tricky in this subjective, imperfect world. Nuances, capacities, and other situation-specific factors sometimes make application challenging. This article will look at ways to champion consensual care.
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Increase Your Understanding of Applicable Legalities and Tools
Documents, options, and laws can vary by region, so it’s wise to get familiar with what’s in your area. Particulars worth learning about include advance directives, POLST (physician order for life-sustaining treatment), DNR (do not resuscitate) orders, power of attorney (also known as health care proxy or agent), hospital visitation form (designed for unmarried couples so a partner has clear visitation authorization), MAiD (medical aid/assistance in dying), and VSED (voluntary stopping of eating and drinking).
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| INELDA UPDATE |
| A NOTE FROM BOARD OF DIRECTORS PRESIDENT, ANGELYN FRAZER-GILES |
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INELDA and the board of directors have gone through some significant transitions over the past few months, including a newly elected executive committee: Catherine Langley as secretary; Robyn Browning as treasurer; and me as president, as well as some staff reductions. We want to thank Dr. Jamie Eaddy Chism and Krista Johnson for their contributions to the organization’s mission.
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I have faith in INELDA and the board’s ability to ensure the sustainability of the organization. I am honored to serve on INELDA’s board of directors and to work with the amazing staff, committed executive committee, and talented advisory board. I am confident that we will continue to expand the communities we educate, create additional partnerships, and broaden racial equity and dignity in death.
I wanted to share with you a little more about each of us and why we serve. READ MORE
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TAKE NHPCO’S SURVEY FOR END-OF-LIFE DOULAS
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| The National Hospice and Palliative Care Organization (NHPCO) established the End-of-Life Doula Advisory Council in 2018. Kris Kington-Barker, INELDA’s director of outreach and care provider programs, sits on this council, and INELDA is a member. The council recently created a survey to learn about the current state of collaboration between hospice agencies and end-of-life doulas. If you are currently working or volunteering with a hospice or palliative care organization or know of someone to contact at one, please consider completing or sending along this survey to help advance our doula work. READ MORE |
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| INELDA SCHOLARSHIP DEADLINE FEBRUARY 24TH |
| We are now accepting scholarship applications for five trainings, including two in-person trainings in Nampa, Idaho, and Atlanta. Our scholarships are for members of the BIPOC, LGBTQIA2S+, underserved, and low-income communities, veterans; and persons living with a disability. If you are interested in this opportunity please have your application in by February 24. READ MORE |
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| IN THE NEWS |
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| INELDA’S February WEBINAR |
| Monthly Webinar |
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Memoir as Medicine: Film and Literature From the Parent and Patient Perspective
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February 22 | WED 7-8:30pm ET
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We’re excited to welcome parent, speaker, and advocate Diane Shader Smith; parent, author, and end-of-life doula Maryanne O’Hara; and Oscar-nominated filmmaker Will Battersby this February for a conversation on Memoir as Medicine: Film and Literature from the Parent and Patient Perspective.
Both Diane’s daughter, Mallory, and Maryanne’s daughter, Caitlin, were diagnosed with cystic fibrosis as toddlers. The two strong, young women lived beautiful and active lives before dying from the complications associated with the disease. Mallory left a collection of videos and journals that was posthumously turned into a book as well as a powerful film directed by Will, Salt in My Soul. Caitlin’s letters, texts, and videos are woven into Maryanne’s book Little Matches: A Memoir of Finding Light in the Dark.
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INELDA’s director of outreach and care provider programs, Kris Kington-Barker, will host the conversation with our guests and explore the lives of Caitlin and Mallory through writings, narratives, and filmmaking. We will discuss cystic fibrosis, the grief associated with a child’s death, and the transformative nature of storytelling.
Sign up now to get the link to watch Salt in My Soul prior to the webinar on February 22nd. Links to purchase the audio book and hard copy of Little Matches can be found here.
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Cost: Free with INELDA Tier 2 & 3 membership | Tier 1 and non-members $15 |
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| PRACTICE CORNER |
| TOOLBOX TIPS |
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A suggestion for working with teens or young adults that I just did with two young clients is creating puzzles. I noticed they liked doing puzzles while visiting and caring for their grandmother. We selected special family photos and then I ordered them as photo puzzles through forever.com. They loved the whole process, and the puzzles have so much meaning now.
—Nancy Jean Rose
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| SHARING SOURCES |
| What’s Your Grief? |
| Eleanor Haley and Litsa Williams, cofounders of What’s Your Grief?, have a lot in common. They both lost a parent, work as mental health professionals, and have a mission “to promote grief education, exploration, and expression in both practical and creative ways.” What’s Your Grief? manifests in many ways. It is a podcast, a website, a book, and a resource for anyone grieving or supporting a grieving loved one, and for people in deathcare or healthcare fields who may have clients who are grieving. |
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They also offer online courses such as Sorting Through a Loved One’s Belongings After Death and Exploring Grief Through Photography.
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ASK INELDA
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I have a question about exploring questions about one’s life meaning with my client. How can I best support someone who is not willing to share and is angry about a recent death?
—Participant in January’s training
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| Educator Marady Duran: We would typically only do this kind of work when our patients or our clients were in a space where they were ready. If you were working with someone who is still very angry, such as in denial of the death process, it wouldn’t even be appropriate for us to prompt that person with life meaning questions. I might choose to be in a more listening and receiving mode. Especially if the client is seeing me as an adversary or as someone to be upset with, it is better to offer active listening and to validate and seek to understand than to do any legacy or life meaning work. READ MORE
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| Please submit questions to [email protected] |
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| SELF-CARE PRESCRIPTION |
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Optimizing Your Diaphragmatic Breathing
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Breathing is an intrinsic function of being alive. So first, let me confirm that if you are alive, you are breathing. You do not have to will your breath, and you can actively participate consciously with your breath—it is a paradox.
Maybe you have heard the term “diaphragmatic breathing” before; let’s take a moment to define what this means. The diaphragm is a large, umbrella-shaped muscle that lines the perimeter of your rib cage and acts simultaneously as the floor to your thoracic cavity and the ceiling to your abdominal cavity. This is your primary muscle for the work of breathing. As you inhale, it moves down, increasing the volume of air in your lungs; as you exhale, it rises. It moves like a jellyfish does.
Furthermore, your vagus nerve (your longest cranial nerve) runs through your diaphragm to innervate portions of your enteric nervous system. When your diaphragm moves up and down, it interacts with this nerve like a violin and stimulates the parasympathetic nervous system. The parasympathetic nervous system boosts your calmative and quiescent state, which balances your activating sympathetic system. READ MORE
—Omni Kitts Ferrara
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| News Briefs |
Exploring Grief in the Metaverse
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| A recent article in MIT Technology Review by Hana Kiros looks at grief meetups in the metaverse. For four months, Kiros explored visitors at Death Q&A, a weekly hourlong session created for virtual reality users to visit and express their feelings anonymously through avatars. The space is facilitated by co-facilitators, Ryan Astheimer, a spiritual life coach and Tom Nickels, a former hospice volunteer in his 70s (whose son runs EvolVR, a virtualspiritual community). READ MORE |
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Machine Learning Boosts Conversations on End-of-Life Care
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| Researchers at Penn State University found that clinicians who were prompted by electronic nudges from a machine learning algorithm that predicts mortality risk quadrupled their rates of end-of-life care conversations. The study also found that the reminders triggered by machine learning significantly decreased use of aggressive chemotherapy and other interventions that could lead to hospitalizations in patients’ final days. READ MORE |
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Canada Performs Highest MAiD Donor Organ Transplants
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| A study of medical aid in dying (MAiD) recipients from 2021 showed that Canada is performing the most organ transplants from MAiD patients of the four countries studied (Canada, Belgium, the Netherlands, and Spain). READ MORE |
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| The Final Word |
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Sorrows
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by Lucille Clifton
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who would believe them winged
who would believe they could be
beautiful who would believe
they could fall so in love with mortals
that they would attach themselves
as scars attach and ride the skin
sometimes we hear them in our dreams
rattling their skulls clicking
their bony fingers
they have heard me beseeching
as i whispered into my own
cupped hands enough not me again
but who can distinguish
one human voice
amid such choruses
of desire
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Accessible, Equitable, and Compassionate Deathcare
© INELDA 2023 International End of Life Doula Association is a
501(c)(3) tax-exempt nonprofit organization
Tax ID#: 47-3023741
Email us: [email protected] | Phone: 201-540-9049
Donate to INELDA |
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