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JULY/AUGUST 2021

JULY/AUGUST 2021
INELDA Newsletter - Notes for the Journey
NEWS BRIEFS MEDIA THE 5-MINUTE READ PRACTICE CORNER CALENDAR
BIRTH TO DEATH: LESSONS FROM A Birth Doula
By Lara Stewart-Panko

As someone who attended her first birth as a lay doula in 1992, became a pro in 2001, and continues to attend births to this day, I have seen many changes in the birth doula community. I’ve also spent years working as a postpartum doula, helping families after they’ve had their baby, often supporting them while they live with mental health concerns or medically complex situations such as feeding tubes and surgeries. I have also served as a childbirth educator and social worker in private practice.

Over the years, I’ve watched the concept of a birth doula go mainstream,

grateful that the days of explaining the term are mostly behind us. I foresee that end-of-life doulas (EOLDs) will have a shorter path to becoming established. But there are trends in the perinatal doula world I hope don’t cross over into the death doula realm: increasing competitive behaviors among colleagues, over-commercialization of services at the expense of what best meets the needs of clients, and the departure at times from the whole-person model of care to a more medicalized practice.

Doula Profile

Glendon Geikie

Glendon was trained as a clinical social worker at Smith College School for Social Work and spent 40 years as a clinician in private practice and at various mental health settings. During that time, he led mental health clinics and taught at Boston College School for Social Work. His first clinical experience was in child abuse, and his early clinical practice focused on children and families, including work in schools and a child guidance setting.

Over time his practice transitioned to serving families, couples, and adults, including trauma victims. Along the way, he also became a trained mediator. Upon retirement, he and his wife relocated from Massachusetts to Palm Springs, California, where he now practices as an end-of-life doula, hospice volunteer, and grief counselor.
Q&A with Glendon
When and why did you decide to become an end-of-life doula?

After retiring from clinical practice and moving to Palm Springs, I found myself needing to continue to be of service to people. Serving as a docent at the local air museum was not fulfilling, and working with the county fire department chaplains responding to trauma situations was hampered by philosophical differences.

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Contact Glendon

Email: [email protected] \\ WebEnd of Life Doula PS \\

Facebook: @glendon.geik.5

News Briefs
 

A Promising New Approach Kills Breast Cancer in Mice

A research team led by scientists at the University of Illinois Urbana-Champaign recently reported the development of a drug called ErSO in Science Translational Medicine. ErSO quickly kills 95-100% of breast cancer cells in mouse models of human estrogen receptor–positive breast cancers—the most common form of breast cancer—and their metastases in bone, brain, liver, and lungs. It is currently incurable in its metastatic form. ErSO quickly shrinks even large tumors to undetectable levels within a matter of days. READ MORE

 News1
Knowledge of Palliative Care in the U.S. Is Extremely Low

A recent analysis of 2018 data from the National Cancer Institute published by the American Association of Cancer Research revealed that only about 11% of people in a survey of 3,450 respondents had adequate knowledge of palliative care. Compounding this problem is the fact that physicians tend to make a palliative referral late in the patient journey, even though palliative care has been proven to improve the quality of life for patients and caregivers by addressing the physical, psychological, and emotional challenges associated with cancer and its treatment. Palliative care has also been associated with increased patient satisfaction.  READ MORE

News2
Spending Time Outside is Good for the Brain
During the COVID-19 pandemic, many people discovered the mood-boosting effect of spending time outdoors. Simple acts such as strolling in a park, hiking in the woods, and sitting on the beach do more than just provide relief from being indoors—they improve people’s general sense of well-being. READ MORE
 

Oncologists Frequently Miss Opportunities for End-of-Life Discussions

A study recently published in JAMA Network Open found that oncologists regularly miss opportunities for end-of-life care discussions with their patients. This is concerning because it indicates that decades of efforts to improve oncologist communication have had little impact on behavior. The result for patients is that aggressive, burdensome, and expensive end-of-life treatments continue when the right conversation might have led to a gentler dying experience. READ MORE
MEDIA OF THE MONTH
 

PROGNOSIS – notes on living
by Nancy Otto

When my wife, Debra Chasnoff, was diagnosed with stage 4 breast cancer, she immediately picked up her camera to document her journey.  Debra—or Chas, as we called her—was an Academy Award-winning documentary filmmaker, so picking up the camera was an instinctual response.

However, filming the last two and a half years of our lives together was both a comfort and a challenge. The camera became our constant witness. In the beginning, it was a nagging intrusion. But as time went on, we leaned on the camera to process and remember all that we were losing. I did not understand that this was Chas’s legacy project until I took the INELDA doula training a year after she passed.
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AI Program to Teach Physicians How to Have End-of-Life Discussions

By Henry Fersko-Weiss

It is no secret that many physicians struggle with end-of-life discussions with their patients. Researchers working on ways to improve physician-patient interactions around difficult conver-

sations have employed actors to role-play patients, but the timing and cost required poses a challenge to employing that tactic more widely.

 

Short Article

To address the need for an approach physicians can easily and comfortably use, researchers at the University of Rochester have developed an artificial intelligence (AI) system utilizing a computer-generated avatar as a patient. The program is in its final stages of development and testing. When released it will allow doctors to practice these delicate end-of-life conversations and give them immediate feedback and areas for improvement.

INELDA UPDATE
INELDA training team together in July by David Patiño  
Staff News

Welcome to our six new trainers, who will start to teach training classes as of September. We are truly excited to have them as part of the team: Julia Andino from Croton-on-Hudson, New York; Marady Duran from Boise, Idaho; Garrett Ellis from Conestoga, Pennsylvania; Claudette Peterson from West Fargo, North Dakota.; Wilka Roig from San Miguel de Allende, Guanajuato, Mexico; and Valoria Walker from Columbia, Maryland. Over the next few months, you will be hearing from and learning more about each trainer in Notes for the Journey and on our website.

INELDA Opportunities
Director of Marketing and Communications.  This full-time position requires a person with an extensive marketing background and experience working in nonprofit organizations. They will create and oversee all of INELDA’s marketing efforts, branding, and external communications. They will become part of the executive committee, which leads the organization in following through on its vision, mission and strategic plans.  To read the full description and apply, click HERE.

 

Board of Trustees. INELDA is actively looking for new board members. The ideal candidates will have years of experience working with nonprofit organizations. Involvement in end-of-life issues or health care is preferred. We encourage people from the BIPOC and LGBTQIA2S+ communities to apply. Our board oversees the performance of the organization in meeting its goals and maintaining its financial health. To read the full position description and apply, click HERE.

 

Care Partners Class
On August 1 we announced our new Care Partners class for people who want to learn how to support and guide their friends and family when they enter the dying process. In this 12-hour, four-session class, our instructors will provide the knowledge you need and help you develop the skills to imagine and curate end-of-life experiences in which family and friends feel safe, valued, and in control. READ MORE
august member-only webinar

     Dying Is Not Giving Up

   Wednesday, AUGUST 25TH, 7:00-8:30 pm EDT

“This brave and courageous film gives patients, caregivers and physicians permission and encour-agement to embrace end of life conversations in ways that haven’t been talked about much before.”

       Screening Guest

August’s webinar will feature the film Dying Is Not Giving Up, conversations between Licensed Psychotherapist Kelly Grosklags and her patient, Judy Erdahl, who was diagnosed with metastatic breast cancer. Knowing that her time was nearing an end, Erdahl describes to Grosklags her intimate experience of dying, from first learning about her terminal diagnosis to what she hopes her death will be like.

 
PRACTICE CORNER
TOOLBOX TIPS
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“Let me know if you need anything.” It’s an offer bereaved people hear from friends, neighbors, and family members. I have often wondered if people who say this genuinely expect a grieving person to take them up on this offer, and what that “anything” might mean. I recently started a thread on the INELDA Private EOL Doula Group page on Facebook with the following question: “Has anyone started a list of ‘anythings’?”

The responses to my query were wonderful suggestions that can fit many different needs and circumstances. They could be plugged into volunteer coordination software such as SignUpGenius to organize support for bereaved individuals and families.

Here is a list of some of the “anythings” people shared: Accompany the person to self-care activities (yoga, religious services, etc.); assist with making plans for holidays and anniversary dates; clean areas in the home where the person might not feel comfortable asking for help, such as bathrooms and bedrooms; coordinate doctor appointments; help organize closets; pick up groceries; return shopping purchases; sit in the person’s home during services to discourage thieves; take out garbage and recycling; wash the car and fill the tank; walk their dog; and weed the garden.

Anja Webster


SHARING SOURCES
Pet Peace of Mind

Most people who have pets think of them as part of the family. When pet owners are dying, they worry about how their pets will be cared for when they are no longer able to—as well as what will happen to their pets after they die. If nobody in their circle of friends, family, or neighbors steps forward to provide that care and give those pets a new home, they might end up at a local shelter, where their future is in doubt. Pet Peace of Mind, an Oregon-based nonprofit organization, was created to solve this problem.

The organization started operating in May 2009. It now serves dying pet owners in almost 250 hospices and palliative care programs across the United States and rehomes between 3,000 and 3,500 animals each year: dogs, cats, birds, rabbits, horses, reptiles—the full spectrum of pets people keep. The most unusual pet rehomed was a tarantula. More than 4,000 patients are served each year through the Pet Peace of Mind volunteer program.


ASK INELDA

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What would you do if someone in a family is unwilling to carry out end-of-life plans and after-death care, even when those plans were written by the dying individual?

—A.F.

Trainer Shelby Kirillin: Many times I have found that unwilling participants in end-of-life plans don’t understand the dying person’s rationale or have a personal connection that makes them hesitant to carry out certain activities. When faced with this, I would sit with those individuals and simply ask what their thoughts and expectations are around their loved one’s plans. I try to understand their perspective around end-of-life and after-death care. We doulas can’t be attached to outcomes, nor are we “the end-of-life police.” However, it is possible to help align everyone and find shared goals.

 

For example, I had a client who wanted a Buddhist ritual performed during her dying process. Her Catholic brothers and sisters didn’t want the ritual to take place. After I heard their concerns, we talked about how people experience grief differently and therefore need to be supported differently. They decided to allow friends to perform the ceremony without them present.

Another tip is to share the dying person’s requests with family and friends as early as possible. It gives people time to think through the wishes of the dying person and ask them direct questions. In the end we are here to serve as advocates to the dying, but it’s important to remember that it’s not our responsibility to control the narrative.

Please submit questions to [email protected]


Self-Care Prescription

Use time blocking. For those of us in the service of caring for people, it is essential to create routines and habits that allow for the continued maintenance of our mental and physical health. Many of us discuss the ongoing need for self-care, but how many of us actually integrate it into our weekly or daily lives? One technique that I find very helpful in supporting my self-care efforts is “time blocking,” which breaks the day or week into specific times for the activities I engage in regularly, including my self-care rituals.

Time blocking works for many successful people, from former President Barack Obama to author Elizabeth Gilbert, who apply this strategy to their busy schedules so important personal activities don’t get left out. Breaking your time into segments for your self-care needs can go a long way toward balancing the intensity of doula work. Sectioning 30-minute to two-hour time blocks for things such as meditation, physical activity, social time, watching a movie, reading a book, or playing an instrument will allow us to reconnect with our center and replenish our energy.

It helps to consider our own self-care part of the service we provide to dying people and their loved ones. Without it we become much less able to provide the empathy and compassion that our clients need from us.

— Loren Talbot

Self-Care

UPCOMING EVENTS
1
August
Care Partner Care Partners Class

Registration opens for November and December Care Partners classes. 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.

4
August
Calendar 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.
9
August
Calendar 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.
20
august
Training Scholarship Applications Training Scholarship Applications
Scholarship applications open for November and December doula training classes.
25
august
Webinar Webinar: Dying Is Not Giving Up

Wednesday, 7:00–8:30 p.m. (ET). Psychotherapist Kelly Grosklags will present her film Dying Is Not Giving Up, featuring conversations with patient Judy Erdahl about compassionate patient care. Q&A with Kelly will follow.

The Final Word
Learning from Trees
Grace Butcher

If we could,

like the trees,

practice dying,

do it every year

just as something we do—

like going on vacation

or celebrating birthdays—

it would become

as easy a part of us

as our hair or clothing.

Someone would show us how

to lie down and fade away

as if in deepest meditation,

and we would learn

about the fine dark emptiness,

both knowing it and not knowing it,

and coming back would be irrelevant.

Whatever it is the trees know

when they stand undone,

surprisingly intricate,

we need to know also

so we can allow

that last thing

to happen to us

as if it were only

any ordinary thing,

leaves and lives

falling away,

the spirit, complex,

waiting in the fine darkness

to learn which way

it will go.

 
 

International End of Life Doula Association

© INELDA 2021 International End of Life Doula Association is a
501(c)(3) tax-exempt nonprofit organization
Tax ID#: 47-3023741
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