INELDA Update – DECEMBER 2021

by Henry Fersko-Weiss

EXECUTIVE DIRECTOR MESSAGE  |  BREAST CANCER PROGRAM

 

A Message from Executive Director Henry Fersko-Weiss

Life is change. Perhaps this principle has become overly popularized in recent years. But its truth is hard to deny. As a fairly recent grandfather in my mid-70s, I see this truth every day from both ends of the life-span perspective. Change is powerful and unnerving at times, but it is also spectacular and presents amazing opportunities. Of course, change is not just personal; it affects businesses, communities, society, and the earth itself. We have all witnessed some of these larger changes over the past year at a speed and force that can be hard to grapple with but that must be engaged. 

INELDA is riding the force of change that is affecting the end-of-life doula field and the organic growth of our business. Since the beginning of 2021 we have more than doubled our team of staff and instructors, including two new executive positions. We’ve revised and redesigned our doula training and our website, launched a Care Partners class, expanded our scholarship program, added to our board of trustees, and improved our outreach to people of color, LGBTQIA2S+ people, and people with disabilities.. We have seen the first published research exclusively focused on INELDA doulas and have begun partnering with the University of Pittsburgh School of Nursing in a grant to serve African Americans with metastatic breast cancer. I could go on. 

Returning to the personal, the close of this year is bringing a change in my relationship with INELDA. I will be stepping down from my position as executive director of the organization and moving into a part-time consulting relationship. I have chosen to do this so I can fully embrace my role as a grandfather, spend more time with my family, and actively pursue other interests in my life. However, I will still sit on the board of trustees and play a role in INELDA’s future. 

With the changes we’ve made this year, INELDA has shored up its foundation and taken the structural and strategic steps necessary to grow up as an organization. There are immense opportunities for the doula field and our organization in the years ahead. We are committed to leading in those opportunities and the changes they will require. This is a pivotal time in our organizational life. Within the next week or so we will announce a new leader for the organization who will take us into the future with all its changes and opportunities.

I am very proud of INELDA, what we have been able to accomplish, and the incredible team we have assembled. I look forward to continuing to participate in what lies ahead and watching the organization grow in ways I never imagined. I hope all of you continue to participate by staying engaged with INELDA for a future of serving the dying and doulas in ever-expanding ways that will bring us closer to our mission, “changing the face of dying.” 

 

PITT CTSI GRANT AWARDED TO UNIVERSITY SCHOOL OF NURSING FOR ADVANCED BREAST CANCER PROGRAM

INELDA® TO HELP ADAPT PROGRAM FOR AFRICAN AMERICAN WOMEN

(Jersey City, NJ) – The University of Pittsburgh School of Nursing and International End of Life Doula Association (INELDA) announce a joint initiative to bring end-of-life care to African American women with metastatic breast cancer. The effort is funded by a grant from the University of Pittsburgh Clinical Translational Science Institute (CTSI). The School of Nursing identified a service gap in end-of-life care within this population and committed to close that gap. In partnership with INELDA, the school was awarded the grant to fund end-of-life doula work specifically for African American women with advanced breast cancer. The program will launch in Q1 2022 and include five Pittsburgh-area patients and their families. 

Margaret Rosenzweig, PhD, CRNP, and Vanessa Palmer, RN, MSN, DNP, saw firsthand that Black women with advanced breast cancer face unique obstacles, not only with their medical care but also with end-of-life care. “During our weekly review meetings at the breast cancer clinic, we noticed a prominent void—we realized that these women have unmet needs on their journey through illness,” Rosenzweig says. “We saw an opportunity to do more to meet these needs.” Rosenzweig is a Distinguished Service Professor of Nursing at the University of Pittsburgh and Associate Director for Catchment Area research at the Hillman Cancer Center.

For those living with advanced breast cancer, the path is not palliative care alone. Patients receive aggressive, costly treatment—often while trying to fulfill a traditional role within the home. The pair tapped INELDA director of program development Jamie Eaddy Chism, DMin, to help adapt their program to meet the unique end-of-life needs of this particular population. Eaddy Chism will collaborate with the school to provide expertise on the cultural aspects of illness and dying for women in Black communities and guide development of a culturally sensitive training curriculum for students in the program. “Our goal is to better serve women in the Black community—to walk through the journey with them, through their death and with their families after death,” Eaddy Chism says.

The program is anchored by four pillars—emotional support, practical assistance, legacy building, and family support throughout the illness and after death. “This grant allows us to pursue a framework within which African Americans with advanced breast cancer receive the end-of-life care they need beyond the clinic walls, within their neighborhoods,” Rosenzweig said.

The program team is led by Rosenzweig as principal investigator and includes Palmer as program director; Eaddy Chism as director of training; Robert Arnold, director of palliative care at University of Pittsburgh Medical Center; Valirie Copeland, School of Social Work faculty member; Adam Brufsky, medical oncologist in breast cancer; and Tanisha Bowman, palliative care social worker and end-of-life doula.

CTSI selected the partners’ proposal from a competitive pool of 100 applicants in various disciplines. The School of Nursing was one of six finalists. The partners envision expanding the program’s scope through a federal grant in 2023.