October 2021

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OCTOBER 2021

[VIEW ARCHIVE]

WHAT IF DEATH CARE WERE DESIGNED FOR TRANS AND NONBINARY PEOPLE?

By Nix Kelley and Isabel Knight

As organizations across different industries work to create more inclusive environments, it helps to think about who our current systems were designed to serve and imagine the alternate universes that we’d be living in if those systems had been designed differently. In human-centered design, this practice is called “alternative worlds,” and earlier this summer, we conducted a workshop to address the question of what our death care system would look like if it had been designed with trans and nonbinary folk in mind.

Too often, when we take a macroscale view of how to design a system, we default to designing products and services for the “average” person. A human-centered practice instead proposes that designing for the most vulnerable individuals can be more beneficial to everyone.

During the workshop we identified common harmful themes in end-of-life care for trans and nonbinary people. Below we have articulated these themes and provided some possible actions to take toward becoming a trans-affirming world in the end-of-life arena.

Doula Profile

Colleen Harris

Colleen Harris taught writing and literature at middle and secondary school levels for 34 years. In retirement, Colleen has become a shamanic Reiki practitioner and master teacher, is currently in the end-of-life doula certification process with INELDA, and enjoys life in Boynton Beach, Florida, with her retired teacher husband and cat Rey.

Q&A with Colleen

When and why did you decide to become an end-of-life doula?

I took the Art of Dying Institute course at the Open Center in New York City years ago. I did not know about EOL doulas at the time—I simply felt drawn to study death. With each session, I became more and more certain something was waiting for me to discover. When Henry Fersko-Weiss gave his seminar on doulas, I knew. I just knew this was the work I was being called to. I remember speaking with him privately during the lunch break, full of excitement and gratitude, telling him this was my calling. His smile of understanding was everything to me.

Contact Colleen

Email: [email protected]

UPCOMING EVENTS

14
october

End-of-Life Doula Training Registration Open for 2022

End-of-Life Doula Training Registration Open

Training applications open October 14 for our 2022 January, February, and March trainings. Doula training is for those who intend to serve the dying as part of a hospice program, in a hospital or care facility, through a community program, or in a private doula practice.

14
october

Training Scholarship Applications Open for 2022Scholarship applications open October 14 for our 2022 January, February, and March trainings. The application period closes November 12.

27
october

Webinar: Walking the End-of-Life Journey With LBGTQ Elders

Webinar: Walking the End-of-Life Journey With LGBTQIA2S+ Elders Wednesday, 7:00–8:30 p.m. (ET). Instructor Kris Kington-Barker will facilitate this webinar featuring Sherrill Wayland, director of national education initiatives at SAGE and Karen McPhail, executive director of Eldementals. Panelists include INELDA’s LGBTQIA2S+ council co-chairs, Ocean Phillips and Marady Duran.

3
november

Peer Mentoring
First Wednesday of every month, 7:00–8:30 p.m. (ET), for the remainder of 2021. We will discuss creative ways to find and work with clients.

8
november

BIPOC Peer Mentoring
Second Monday of every month, 7:00–8:30 p.m. (ET). This is a space for discussing opportunities and obstacles that may be specific to BIPOC doulas and communities they serve.

11
november

Care Partners Class
Registration is ongoing for our Care Partners classes. Starting dates are November 11th and December 6th. This 12-hour class will teach how to be a compassionate and knowledgeable guide to your friends and family when they enter the dying process.

MEDIA OF THE MONTH

WHEN MY TIME COMES

by Loren Talbot

When the Peabody Award–winning journalist Diane Rehm, known for her 40-year career at NPR, decided to tackle the issue of Medical Aid in Dying (MAiD), it was personal. In 2004, her husband, John Rehm, began to shuffle his feet on their daily walks. Soon after, his hands began to tremor, and he was diagnosed with Parkinson’s disease, a progressive disorder of the nervous system.

Neither one a stranger to hard conversations, Diane and John talked deeply about his impending death. When the time came—he was told he had six months left to live and could no longer walk, stand, or feed himself—he said to Diane, “I am ready to die, and I want you to help me.” They approached John’s doctor, who told them that in the state of Maryland, he had neither the legal nor moral authority to help John die. The doctor shared that the only option was to voluntarily stop eating and drinking (VSED). This enraged John, but with no other options he chose VSED. On the 10th day, he died.

Trainer Claudette Peterson: Advocate, Ally, and Adult Educator
By Garrett Drew Ellis
The new trainers at INELDA come from wide-ranging, diverse backgrounds and bring a heartfelt commitment to diversity of thought and experience. Claudette Peterson is an INELDA-trained death doula who has joined our team of instructors. She is committed to compassion, diversity, and a supportive learning environment. With a doctorate in adult education and a wealth of experience in higher education, Claudette is at the same time an academic, a professional, and a person-centered death doula.
What made you want to become a death doula?
In the 1980s, I was both saddened and angered by the fact that so many gay men were dying alone from HIV and AIDS. Many of them were rejected by their families. I give a lot of credit to the LGBTQIA2S++ community, as well as to people like myself, who stepped up to provide death support for them. It was very rewarding, and one of the things I regard as an honor in this life, to have stood in as their family of choice during a time when they needed support the most. I started volunteering with their community and then went on to become a hospice volunteer, and eventually a trained doula.

INELDA UPDATE
INELDA Updates Our Training
We spent the summer months welcoming our new trainers and bringing their creativity and insight to the table as we enhanced our end-of-life doula training. These enhancements include an updated manual, new prework videos, and postclass exercises that reflect our commitment to providing the most impactful learning experience for our participants. READ MORE

INELDA Launches Our New Website
We are pleased to announce the launch of INELDA’s new website. Our overarching goal for this new site has been to reflect the work we are doing and the ways we are evolving as a diverse and inclusive organization, driven to change the face of dying. At the same time, we’ve been working to make it even easier for you to access the information you seek and to take action when ready, whether you’re searching for doula training and support or for doula services. READ MORE
Staff Updates
Cloud Conrad recently joined INELDA as our director of marketing and communications. Cloud has spent most of her career in advertising and marketing, working in both ad agency and client-side marketing roles. Most recently, she has been involved with dementia caregiver training work as a private consultant and as a community educator for the Alzheimer’s Association. READ MORE
INELDA in the News
Henry Fersko-Weiss was recently interviewed in the Bangor Daily News, in Nick Schroder’s feature on an INELDA-trained doula and her work in that region of Maine.

INELDA’s october Webinar

Members-only Webinar

Walking the End-of-Life Journey With LGBTQIA2S+ Elders

Wednesday, October 27TH, 7:00-8:30 pm EDT

Join us for this presentation and panel discussion with moderator and instructor Kris Kington-Barker. She will facilitate this session featuring Sherrill Wayland, director of national education initiatives at SAGE and Karen McPhail, executive director of Eldementals. Panelists include INELDA’s LGBTQIA2S+ council co-chairs, Ocean Phillips and Marady Duran. Read bios here.

Register here

PRACTICE CORNER

TOOLBOX TIPS

As a former volunteer coordinator for hospice, I recommend a volunteer strategy for new end-of-life doulas. When volunteering with a hospice that is doula-friendly, you will still have to do the hospice’s training. These vary in length of time and topics covered.

As you begin to volunteer with patients and families, I recommend that you ask up front if you can receive family recommendations upon closure of a case. Know that you are unpaid and that these recommendations are vital to your growth as an EOLD. Find your advocate within the organization or a mentor outside of the hospice and then shape your volunteering to best cultivate deeper connections with hospice clients. I recommend asking to work with families for longer visits, versus shorter ones at multiple locations.

Next, show up for families and those dying with everything you’ve got from your training! Let them know your plan and that you are seeking experience or certification. Share that the services you are contributing are part of your life’s work. To gain feedback, create easy forms for families to fill out, such as a Likert Scale—a tool that’s simple to use when caregivers are tired or overwhelmed. It’s good to write down in short, clear sentences what you have offered. This will help the families easily evaluate your work following the death.

Know that the families, loved ones, and clients you work with will be grateful for your service. The hospice will also benefit, because you will contribute hours, making it easier for the hospice to achieve the Medicare requirement that 5% of direct patient hours be provided by volunteers. And the volunteer coordinator, who is directly responsible for meeting this requirement, will be most grateful.

—Charlotte Fuller

Editor’s note: We recognize that many hospices are not running at full capacity due to COVID-19 and hope these strategies will be of use when the time is right.

SHARING SOURCES
Lantern
Immediately after the loss of her paternal grandmother in 2018, Liz Eddy started to research the resources available to guide her through all the decisions she faced after her grandmother’s death.
Her father had died when she was young, and Liz was responsible for her grandmother’s funeral planning and post-death logistics. Her research turned up outdated blogs and ads for funeral homes, but not a lot of helpful information. This spawned the idea of creating a tool to walk people through end-of-life planning. Lantern was designed as both a pre-planning and caretaking tool. When users log on to the site, they are given the choice of “I’m Managing a Death” or “I’m Planning Ahead.” A short five-part questionnaire touches on one’s reasons for visiting Lantern, as well as the emotions surrounding being on the site. The program next walks users through establishing a customizable, digital plan for their own or a loved one’s end-of-life process.

ASK INELDA

I am currently working with a family whose loved one is an organ donor. They plan to wait for the organ donor team to arrive before they remove the respirator. Any ideas on how to honor him in that extremely difficult moment? —K.D.

Trainer Valoria Walker: Support the family by telling them that the decision made to donate organs is an act of kindness and compassion that goes beyond death. Then, if the family agrees, ask questions about how they think the donor would want to be honored in his last moments. If the donor is able to participate, involve him in the process. Remind the family of the time-critical factor in transporting organs and suggest that they begin to honor him a few hours before the respirator is to be removed. I suggest the family turn on a battery-operated candle or candles to mark the beginning of the donor’s vigil.

Once the respirator is removed, conducting the vigil is now on a time clock. Honor him based on the answers you received from earlier conversations. If the donor is an expressive person and the family is comfortable, encourage them to hold and tenderly caress their loved one’s hands. As a doula, incorporate the family’s memories into a brief guided imagery session, asking the family to participate. Have someone read or sing his favorite scripture, hymns, songs, “words” (sayings), or inspirational quotes. Urge the family to join together in a cultural tradition or ritual reflective of their loved one. Invite the family to say their good-byes—they can offer appreciation and gratitude for his contributions to the family and any expressions of forgiveness needed. End the vigil by turning off the candles.

Please submit questions to [email protected]

Self-Care Prescription

Time is the doula’s most valuable commodity. For those who serve at end-of-life, it is very easy to give of yourself in ways that leave one feeling drained. We are compassionate and committed people; thus, we invest a lot of time and energy in the care and support of our clients.

However, how much of our time do we spend making sure that we are fully energized? How often do we schedule self-care for ourselves? For the doula, time is an asset, and we need to expend enough of it on ourselves that we can be of effective service to others.

Do you set time aside for regular self-care? Self-care can be defined as “dedicated time for self-focused reflection, rejuvenation, and revitalization.” That doesn’t necessarily mean pedicures, baths, and shopping sprees. It may simply mean regularly scheduled time to check in with yourself. Perhaps it means attending a regularly scheduled therapy session or a set time of prayer, reflection, or meditation. It could even be as simple as taking a walk in nature every evening, in order to prepare yourself for the following day’s schedule.

Ask yourself: If I did an inventory at the end of each day, did my actions show that I value myself and my health by the way I took control of my time.

— Trainer Garrett Ellis

News Briefs

Excessive Drugging of Nursing Home Patients

According to an investigation by The New York Times, nursing homes across the country have engaged in the dubious practice of over-diagnosing patients with schizophrenia in an attempt to circumvent government oversight in their use of antipsychotic medication. Since a 1987 law prohibiting the use of drugs as “chemical restraints” in nursing homes, facilities have been required to report the percentage of patients on antipsychotic drugs, which tend to sedate patients. READ MORE

Colorado Approves Body Composting

In early September, Colorado became the second state to allow human body composting. Within six months, this process turns bodies into soil that can be used to grow trees or flowers. One family in Colorado has already chosen to use this new green approach to post-death care for their loved one’s body. At the end of the process the family can keep the soil or donate it for conservation efforts. READ MORE

Orchid Extract Could Treat Prostate Cancer
Research led by the Centenary Institute of Cancer Medicine and Cell Biology in Sydney, Australia, has discovered that an extract from a common orchid species native to Southeast Asia could help treat early-and late-stage prostate cancer. Prostate cancer is the second most common form of cancer and the sixth highest cause of cancer-related mortality worldwide. READ MORE

Telehealth Has Mental Health Benefits

We have all been tethered to our electronic devices for over a year and a half since the COVID-19 pandemic began. It was necessary to do our work, shopping, and physical and mental health appointments virtually to stay safe. Now, as we gradually move back to more in-person activities, we are discovering that telehealth has a continued place in mental health services. This is especially true for preteens, teens, people who have traditionally been underserved, and those living in rural communities. There are even advantages for people struggling with dementia. READ MORE

The Final Word

As One Listens to the Rain
Octavio Paz
Listen to me as one listens to the rain, not attentive, not distracted, light footsteps, thin drizzle, water that is air, air that is time, the day is still leaving, the night has yet to arrive, figurations of mist at the turn of the corner, figurations of time at the bend in this pause, listen to me as one listens to the rain, without listening, hear what I say with eyes open inward, asleep with all five senses awake, it’s raining, light footsteps, a murmur of syllables, air and water, words with no weight: What we are and are, the days and years, this moment, weightless time and heavy sorrow, listen to me as one listens to the rain, wet asphalt is shining, steam rises and walks away, night unfolds and looks at me, you are you and your body of steam, you and your face of night, you and your hair, unhurried lightning, you cross the street and enter my forehead, footsteps of water across my eyes, listen to me as one listens to the rain.

International End of Life Doula Association

© INELDA 2021 International End of Life Doula Association is a
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