Friday, June 7, 2019 • 1:15–2:45 pm
Ann Marie Ackerman, RN, CHPN, BSN, MBA
Ann Bach, RN, BSN, MDiv
Ellen Liberto, BS, LPN, LMT, CHPLN
Pamela Acey, RN
Michelle Bookman, MSW, LSW, ACHP-SW
Kathleen Gehman, CHPLN
Deborah Miley, MDiv, BCC
Gwendolyn Hostetter, RN, BSN, CHPN
Amy DeCola, CNA
Method: Panel discussion demonstrating a simulated interdisciplinary team meeting discussing the coping and impact of caring for a terminally ill family member. The interdisciplinary team will address the medical, psychosocial, and spiritual needs of an Amish family. The participants will demonstrate the respect of the culture and belief systems of this population.
- We will provide an overview of hospice services.
- We will provide an overview of financial considerations used to establish Hospice & Community Care’s hospice program to provide care to the Amish population.
- We will provide basic information on natural treatment modalities that can be combined with medical model treatments.
- We will demonstrate an interdisciplinary team meeting impacting three family systems.
- A family system impacted by caring for a terminally ill child.
- A family system impacted by caring for a middle-aged terminally ill patient with minor children in the home.
- A family system impacted by caring for an elderly family member.
Significance: Hospice provides in-home services and is able to support the goals of this culture to care for terminally ill family members in their homes and surrounded by their community.
Amish families wish to limit financial expenses involved in the acute care system while providing quality care to family members. Amish family systems face stressors while caring for terminally ill loved ones that can cause physical, psychosocial, and spiritual needs. Amish families are moving into new geographical areas where hospice care could be provided. Hospice needs information on how to establish financially viable services.
Ann Marie Ackerman
is vice president of patient care at Hospice & Community Care in Lancaster, Pennsylvania, where she manages interdisciplinary team services in all settings, access, compliance and quality activities and community support services.
Ann Bach is a staff nurse at Hospice & Community Care.
Ellen Liberto is a licensed massage therapist at Hospice & Community Care.
Pamela Acey is a home hospice RN case manager at Hospice & Community Care.
Michelle Bookman is a social worker and team leader at Hospice & Community Care.
Kathleen Gehman is home hospice LPN at Hospice & Community Care.
Deborah Miley is a chaplain at Hospice & Community Care.
Gwendolyn Hostetter is an RN case manager with home hospice at Hospice & Community Care.
Amy DeCola is a hospice aide at Hospice & Community Care.
Erik Puffenberger, PhD
Karlla Brigatti, MS, LCGC
Alan Shuldiner, MD
Susan K. Shaub, RN, BSN
Puffenberger and Brigatti will discuss new developments in genomic diagnostics and treatment, including some of the most recent advances in “next generation” molecular diagnostics and its application to specific populations—what we call the “Plain Insight” screening panel. They will also touch upon the promise of emerging gene therapy for previously untreatable, and in some cases lethal, genetic disorders.
Shuldiner and Shaub will discuss the origins of the Amish Research Clinic (ARC) and its mission and model. They will also present findings from ARC’s Amish Wellness Study, with specific examples of how research has led to translational opportunities to improve health among the Amish, as well as how research and discoveries in the Amish have translated to improved health of human beings around the world, such as Amish-based studies of Plavix.
Erik Puffenberger is laboratory director at the Clinic for Special Children, where his work involves implementation of molecular techniques for routine diagnosis, research into the genetics of isolated populations, development of molecular strategies for newborn screening, and identification of novel disease genes by genetic mapping and exome sequencing.
Karlla Brigatti is research operations director at the Clinic for Special Children. She is certified by the American Board of Medical Genetics and is a member of the National Society of Genetic Counselors. Her research interests include gene discovery, implementation of personalized medicine, and rare disease advocacy.
Alan Shuldiner, John L. Whitehurst Professor of Medicine, associate dean, and director of the program in personalized and genomic medicine at the University of Maryland School of Medicine, is also the founder and director of the University of Maryland Amish Research Clinic. In addition, he is vice president of translational genetics at Regeneron Pharmaceuticals, Inc. Shuldiner’s major research interests are in the molecular basis and genetics of type-2 diabetes, obesity and insulin resistance.
Susan K. Shaub is a seasoned research nurse at the University of Maryland Amish Research Clinic, where she also serves as senior nurse coordinator.
Similarity in Amish and Japanese Mind and Lifestyle: Zen and Amish
Chiho Oyabu, PhD
Kana Oyabu, PhD
Since the end of World War II, Japan has become a wealthy country in terms of economy. However, the sense of happiness and satisfaction with life among Japanese people is not high at present. Urbanization has brought about changes in traditional family relationships and uncertainty in people’s sense of identity and goals in life.
In Western countries, a sense of uncertainty has also spread. In their search for a stable identity and peace of mind, some people become interested in Zen and some try to practice it in life. Other Japanese people are interested in the Amish way of life. More than 20 books about the Amish have been translated and published in Japan.
This presentation compares Japanese and Amish ways of thought from the point of view of the family, the community, and Zen. We found a similarity between Zen and the Amish way of life. Zen teaches that religion is practiced in everyday life, which is similar to the Amish attitude toward religion.
Chiho Oyabu is a professor in the education department of Gifu University, where she teaches family budget analysis, Amish lifestyle, and family relations. She and Toshiharu Sugihara have translated three books about the Amish into Japanese: The Puzzles of Amish Life by Donald Kraybill, The Amish School by Sara Fisher and Rachel K. Stahl, and The Amish of Lancaster County by Donald Kraybill. Oyabu has received three Japanese government grants for Amish studies.
Kana Oyabu is a professor in the Center of Foreign Language at Kanazawa University, in Japan, where she teaches English and English literature. Oyabu is interested in children’s literature, and writings concerning religious communities such as the Amish and the British Islamic community. She has received a grant from the Japanese government to research “religious construction on children’s literature for Amish and Islamic people.”
“Thematic Exhibition: The World of Amish Quilts: Seeking the Way of Living, Weaving the World” in 2018 at the National Museum of Ethnology (NME) in Osaka and Its Development
Nanami Suzuki, PhD
This presentation will explain the purpose and content of the thematic exhibition held at the NME from August through December 2018 and examine the developments brought about by exchanges with visitors during and after the exhibition (via a questionnaire and discussion in lectures held during the exhibition).
The main purpose of the exhibition of Amish quilts and everyday items was to show museum visitors in Japan how Amish people interact with diverse people and the environment. Part 1 of the exhibition traced the emergence of the Anabaptists and the separation of the Amish from the Mennonites, their migration to North America, and the birth of new groups that selected different ways of living in the modern world. Part 1 also showed how Amish quilts attracted the attention of people around the world, especially in the late 20th century. Parts 2 and 3 focused primarily on quilts made in the first half of the 20th century. Part 2 featured Amish quilts that expressed daily living and the natural environment, and examined the aspects they have in common with American quilts. Part 3 focused on Amish quilts given to people at milestones of life, such as marriage, childbirth, and parting. Part 4 presented current Amish quilt making, whereby women in particular have extended their place of living through exchanges with non-Amish people who come to the stores they operate in their homes, and whereby Amish people have continued to volunteer making quilts, collaborating with Mennonites to care for diverse people.
Nanami Suzuki is a professor in the globalization and humanity department at the National Museum of Ethnology, Osaka, Japan, and a professor in the School of Cultural and Social Studies, Graduate University for Advanced Studies.
Robin Boyer, MSW
In this seminar, a staff member from Lancaster County Children and Youth and a liaison to that agency from an area Old Order church will discuss effective ways for health care professionals to engage members of the Plain community in identifying and preventing abuse. These methods are based on a model developed in Lancaster County, Pennsylvania, to educate Plain Anabaptist church members about the legal parameters, as well as bring them into the conversation about prevention. The speakers will review the cultural understandings (and misunderstandings) that sometimes work against communication and cooperation among law enforcement, social services, and Plain Anabaptists, and how healthcare professionals can work constructively with these parties.
Robin Boyer has worked in the child welfare field for the past 35 years and is currently the director of intake services at Lancaster County Children and Youth. Boyer has worked in depth with the Amish community in outreach related to mandated reporting and sexual abuse assessments. In addition, she is a trainer for Academy of Pediatrics programs that focus on educating the medical community on mandated reporting.
Allen Hoover is a member of the Groffdale (Old Order) Mennonite Conference.