APRIL 2023

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APRIL 2023

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Doula Research: Why Your Voice Is So Important

by Loren Talbot and Amber Thompson

While awareness about end-of-life doulas has been growing around the United States and some other areas of the world, there is still much research needed to help solidify the role of doulas in the continuum of care. Although many of us know how valuable this support is for the dying and their families, substantiating this work through research and peer-reviewed studies will further establish doula roles at end of life.

Over recent months, we have been reaching out to the INELDA community with requests from researchers. This research broadens the knowledge base and supports the work that we do in academia, in the medical field, with mental health professionals, and more. It expands information for those who are seeking to effect change in a systemwide approach and problem-solve ways to address gaps in the delivery of care.

doula Profile
Trista Charron
Trista has served the Boston area as a care provider for families for more than 20 years. She is also an artist and writer with a great love for travel, music, and literature. Though she holds a bachelor’s degree in humanities from Harvard Extension School, she maintains that her most impactful learning stems from her extensive experience in care work.
Q&A with Trista
When and why did you decide to become an end-of-life doula?
In 2018 I was very fortunate to have my INELDA training led by Henry Fersko-Weiss. Within months of that weekend, I was further trained and gained my experience through a hospice volunteer program of a local Boston hospital. I originally pursued end-of-life care under the suggestion of a friend and acupuncturist at a community acupuncture clinic that I worked at for some years up until the pandemic. With so much work in care of children, the elderly, animals, and the home lives of others, and in witnessing the passing of my own young parents, I imagined there were more areas of connection to explore and learn from for my own life’s work in care and for living life in general.

UPCOMING EVENTS

Mapping Emotions Workshop

April 20 | THU 7-10pm ET

This workshop taught by educator Wilka Roig explores the emotional experience and reactions to our environment. We will deepen our understanding of the natural emotional responses to our life’s circumstances. Together we will tap into a greater awareness and cultivate emotional intelligence to best respond in given scenarios. Learners will identify these emotions and participate in an interactive guided imagery technique. This workshop will meet for one three-hour session. | REGISTER

Hospice End-of-Life Doula Training Event - April 29-30

Hospice End-of-Life Training

April 29-30 | SAT & SUN 10:30am-7pm ET

Hospice end-of-life doula training is designed for care provider organizations seeking to have current staff or volunteers trained as end-of-life doulas to enhance their care teams and services. Limited to 24 seats. This two-day training taught by educator Kris Kington-Barker is open to those who are currently affiliated, volunteer with, or employed by a hospice organization. Click to see the full schedule | REGISTER

MEDIA OF THE MONTH

Honoring Choices

a film by Grief Dialogues

The film Honoring Choices was written by Elizabeth Coplan, a playwright and founder of Grief Dialogues, a nonprofit that uses art to start new conversations about dying, death, and grief. Adapted for the screen from a play written by Elizabeth in 2020, the piece was originally commissioned by and performed for Honoring Choices Pacific Northwest.

A Conversation With Lonny Shavelson, Chair of the American Clinicians Academy on Medical Aid in Dying.

interviewed by Loren Talbot

The American Clinicians Academy on Medical Aid in Dying, led by Dr. Lonny Shavelson, has been in existence for three years. The organization grew out of clinicians coming together around medical aid in dying (MAiD). Prior to the founding of ACAMAID, there were ethicists, lawyers, lobbyists, legislators, and others setting the conversation with very few clinicians involved. The academy does not become involved in the politics or lobbying efforts around the topic, but serves to provide knowledge and education on medical aid in dying. It is one of the few sources of bedside information on how to care for patients. Today there are 11 jurisdictions where medical aid in dying is legal.

Conversation with Lonny Shavelson image of woman in hospice

Can you share more about the role of the academy and the physicians who are part of it?

To teach and to really make it clear that we [clinicians] are much more complicated than just administering medication. We have long relationships with our patients. They don’t just get the prescription and die that day. They exist in the world and we are with them during that time. It’s a relationship, and many of our patients wind up not taking medications to die, and many of our patients wind up taking medications to die, and honestly it doesn’t matter to us—as long as they have the death that they want and we have been with them to guide that journey.

INELDA UPDATE
JOIN US AT OMEGA INSTITUTE FOR HOLISTIC STUDIES THIS JULY
Omega Institute, located in Rhinebeck, New York, will host INELDA for an End-of-Life Doula Training July 28 through July 30. This in-person weekend training will be led by Nicole Heidbreder and Omni Kitts Ferrara.
This training will have the same curriculum as our INELDA-hosted trainings but will be held on Omega Institute’s lakefront property with options of meal plans and accommodations. Please visit the Omega Institute website for more information.

HOSPICE END-OF-LIFE DOULA TRAINING
We have just launched our Hospice End-of-Life Doula Training program. This two-day training is designed for care provider organizations seeking to have current staff or volunteers trained as end-of-life doulas to enhance their care teams and services. Our first training will be held the weekend of April 29 and will be taught by Kris Kington-Barker. The training is limited to 24 seats and open to those who are currently affiliated with, volunteer with, or employed by a hospice organization. Contact [email protected] if you would like to enroll a group or organization in the course. READ MORE

SUCCESSFUL ROUNDTABLE AT AMERICAN SOCIETY ON AGING CONFERENCE FOLLOWED BY ATLANTA TRAINING
Kris Kington-Barker and Garrett Drew Ellis hosted a roundtable at the American Society on Aging conference in Atlanta this March. Participants had a lively conversation around the panel’s theme, “EOL Doulas: Partners in End-of-Life Care.” We thank ASA for hosting us at the event and look forward to being back! READ MORE	April 2023 \| End-of-Life Doula Training Participant at Loudermilk Conference Center
WELLSTAR
Seventeen folks from Wellstar Community Hospice, including three registered nurses, two nursing assistants, a chaplain, and a social worker came together with volunteers in Marietta, Georgia, for an end-of-life doula hospice training. The cohort brought decades of experience in hospice, end-of-life support, and caregiving. Congratulations and welcome to the INELDA community.	March 2023 \| Wellstar Hospice End-of-Life Doula Training Participants

INELDA EDUCATOR AT GLOBAL GRIEF CONFERENCE

Valoria Walker will virtually present “Courageous Conversations About Death and Dying” April 30 at 10pm MT at the Global Grief Conference 2023. The conference will be live streamed April 29 through May 1 and is hosted by grief coach and podcaster Tony Lynch.

STAFF TRANSITIONS
We would like to thank Rasalin Neudeck for the work and energy she has brought to INELDA. We wish her the best of luck in her next adventure. We would like to welcome Ali Weckler, who started in January as our finance coordinator.

IN THE NEWS
INELDA-trained doula Martha Heymann and her client were featured in a multipage article in *People Magazine, along with a mention of INELDA executive director Doug Simpson. Thank you for sharing your stories. Gothamist, a part of WNYC in the New York City region, published an article* which featured INELDA-trained doulas Emma Acker and Virginia Chang along with Kris Kington-Barker, INELDA director of outreach and care provider programs. The Philadelphia Inquirer spoke with INELDA-trained doula Belle Sandella about the support she gives for its article “Philly death doulas guide people through the end of life.” Kris Kington-Barker is also included with commentary on how doulas support the dying.

INELDA’S APRIL WEBINAR
Monthly Webinar

Trauma-Informed Care with The People Experiencing Homelessness Project
April 26 \| WED 7-8:30pm ET
Join our conversation with public servant and system changer Kaki Marshall and Street Roots representative, ambassador program manager Raven Drake. Learn more about the The People Experiencing Homelessness Project and informed practice in harm reduction and trauma-informed care. Kaki (They/Them) brings lived experience as a youth experiencing homelessness and a 15-year track record of nonprofit management of programs developed in partnership with historically underserved communities. Raven works at Street Roots as the ambassador program manager since late September 2020. As someone who lived through houselessness herself, she holds a passion for this work.
INELDA educator and director of outreach and care provider programs, Kris Kington-Barker will moderate the conversation with Kaki and Raven about the project. Join INELDA to hear vital perspectives and learn informed practice in harm reduction and trauma-informed care.
Cost: Our April webinar is Free for all INELDA members \| Nonmembers $15

PRACTICE CORNER

TOOLBOX TIPS

When creating a legacy project for children I suggest seeing what they like and starting there. You will get led in the right direction by the clients themselves. If they like music, maybe build a playlist of their favorite songs. If they like art, perhaps make projects for friends or family to receive as special future gifts on dates the clients will miss, like birthdays, holidays, etc. If they love sports and being active, you can create ideas around this. If you are looking for keepsakes for the family to remember them by, some ideas may be thumbprint necklaces, heartbeat recordings, group photos, and memories that were written together.

—Sara Sedlacek Yates

SHARING SOURCES
WeRNative
WeRNative is a Native-led organization that provides health resources and support for Native youth in the United States, including grief support services. The organization offers culturally sensitive and trauma-informed grief support services, such as counseling, traditional healing practices, and referrals to community resources. The services are designed to help Native youth and their families cope with the loss of a loved one and find healing in a way that is respectful of their cultural traditions and beliefs.
WeRNative also provides education and awareness about mental health and wellness, and advocates for the needs and rights of Native youth. The goal of the grief support services is to promote wellness and healing within Indigenous communities.

ASK INELDA

Can you share some experiences of when the religion of the family is different from the knowledge of the doula? How does one handle lack of familiarity with the rituals, practices, or prayers? —Training Participant

Educator Garrett Drew Ellis: Living in the religious space that I do, I have gone into spaces where religious practices were not my own. I will say I think there is an unnecessary fear of interacting with an individual spirituality. Research shows that spirituality is a huge part of people’s care at the end of life. And when it is not tended to, people sometimes have a harder time even with physical symptoms. So the doula has an opportunity to hold space for whatever the religious practice is. READ MORE

Please submit questions to [email protected]

SELF-CARE PRESCRIPTION

Broaden the Space Around Your

When my kids were very little and in full play mode, the noise would often overwhelm me. Sound has a direct connection to our brain that cannot be turned off. Even when we’re sleeping, sound is received and processed by the brain. If the sound perceived is novel or a warning of danger, it can evoke a sense of hypervigilance and even a flight-or-fight response. Sound inherently affects our nervous system. Listening to my kids play posed no “danger” to me, but my system was certainly processing it that way. I would feel jumpy and slightly irritated, and I had a deep sense of urgency to either stop the noise or flee from it.

Our house had stairs that led to the second floor and a small landing with an overlook, which allowed you to see down into the living room area. One day, feeling enveloped by their glee-filled, high-pitched noises, I became aware of the irritation in my body and that familiar feeling of wishing to evade the cacophony of sound. I’m not sure what spurred this idea, but that day, I walked halfway up the stairs and sat on the landing and just watched them play. I actively took some deep breaths, and as I watched them play, I told myself, “They are OK, you are OK, we are OK.” In no time at all, I noticed the sense of urgency dissipate; my skin no longer had that certain itch of irritation. I sat there for a few minutes and then went on about my day. READ MORE

—Omni Kitts Ferrara

News Briefs
Aggressive End-of-Life Treatment Administered
In a study published in JAMA, the rate at which aggressive end-of-life care is administered was evaluated in 146,329 participants 66 years and older living either in nursing homes or as community-dwelling residents. Defined as “cancer-directed treatment, intensive care unit admission, more than 1 emergency department visit or more than 1 hospitalization in the last 30 days of life, hospice enrollment in the last 3 days of life, and in-hospital death,” the authors of the study report that aggressive EOL care is widespread, particularly in older adults with metastatic, or stage 4, cancer. READ MORE

Massachusetts Approaches Legislation on Medical Aid in Dying
The Washington Post reported that nine states have issued legislation on medical aid in dying (MAiD) this session. To date, there are 10 states that allow MAiD access, as does the District of Columbia. There are bills in both houses of the state legislature in Massachusetts, and a robust lobbying effort is underway. A December 2022 decision by state justices sent the issue back to the legislative branch. Bill sponsor Rep. Jim O’Day has 60 cosponsors as well as the governor’s support. READ MORE

Transgender Adults Lend Voices at End-of-Life Care Think Tank

In March 2021, transgender older adults, scholars in EOL care, and palliative care providers gathered for a two-day think tank to discuss transgender end-of-life care. The research outcomes were published by SAGE Journals to help identify the needs of aging transgender people. Health care systems have been ill-equipped to support this population and require a shift to where “gender-affirming care intersects with the need for gerontological nursing care.” READ MORE

The Final Word

Stardust
by Elvis Alves
When the bodies dies, it travels backwards to the stars, providing nutrients for them to feed on, glow bright with as when falling to earth to shine light on the dust we are

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

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