Ethical Dilemmas in the Health Care of the Pediatric Amish Population - Megan Land University of Texas Health Science Center Houston
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Ethical Dilemmas in the Health Care of
the Pediatric Amish Population
http://nursing322sp10.wordpress.com/the-american-amish/
Megan Land
University of Texas Health Science Center Houston
Introduction and Thesis
• The Amish are small and primarily agrarian group who have lived in the
United States for centuries.
• They are a growing population, doubling in size approximately every 20
years from a population of only 6,000 in 1900 to 275,000 in 2012.
• The Amish eschew modernity in favor of a more “traditional” way of life,
including restrictions on dress, transportation, electricity, and modern
medicine.
• This study explored the employment of modern health care in the
pediatric Amish population and the ethical dilemmas that are
encountered when the rights of a pediatric patient compete with the
religious freedoms of their parents.
http://lancasterpa.com/amish/amish-people/
Rights of Children in the Amish
• The Amish have been exempted from
several federal laws that were enacted
with the intention of protecting children.
– School: Amish students are only required
to attend school through the 8th grade
and are taught limited subjects by Amish
teachers who have an 8th grade
education, as protected by the1972
Wisconsin vs. Yoder case.
– Child Labor: The US government created http://www.theamishguesthouse.com/amish.html
concessions for the Amish in child labor
laws, allowing children to work on farms
for more hours and at an earlier age than
on farms anywhere else in America.
– Health care: In 2010 the Amish were
exempted from the Affordable Care Act
due to their religious convictions against
accepting aid from the government. The
Amish community, including their
children, will instead continue to go
without health insurance.
http://manifoldgreatness.wordpress.com/2012/10/26/the-amish-and-the-king-james-bible/
Health Care in the Amish
• The Amish are a group with a heavy burden of genetic disease.
– These genetic diseases include Ellis-van Crevald syndrome , cartilage hair hypoplasia,
pyruvate kinase anemia, hemophilia B, phenylketonuria (PKU), maple syrup urine
disease, glutaric aciduria 1, and others.
– In PKU, for example, early diagnosis is absolutely essential for good outcomes.
– Early diagnosis is easily accomplished with new born screenings which the Amish
rarely participate in.
• There are many issues that prevent Amish children from receiving care.
– Cost- For religious reasons, and because they are frugal, few Amish have commercial
health insurance and most pay with cash . Paying for even the most basic doctor’s
visit would be a major burden on the budget of a typical Amish family.
– Access- Since most Amish live in extremely rural settings there are limited health care
resources or access to physicians, especially since they must travel exclusively via
horse and buggy.
– Distrust- As a result of their ban on higher education, there are no Amish physicians
or nurses, meaning that any healthcare provider that practices modern medicine will
be an outsider, and therefore difficult for the average Amish person to trust.
– Religion- The Amish ultimately believe that their lives are in the hands of God, and
that each individual should therefore set limitations on the kinds of medical Amish child with Ellis-van Crevald
interventions that they will pursue. http://profiles.nlm.nih.gov/ps/retrieve/Res
ourceMetadata/JQBBFL
• There is one model of health care delivery that has addressed many of these issues.
– In 1989 Dr. Holmes Morton began offering urine organic acid screening for newborns,
comprehensive pediatric follow-up care, and inpatient management for illnesses all in
a rural and accessible setting.
Conclusions
• Even when access is improved, some religious beliefs held by
parents prevent their children from receiving care.
– Sarah Hershberger was diagnosed with lymphoblastic lymphoma in April of
2013. She underwent one round of chemotherapy which shrunk masses in
her kidneys, neck, and chest. The second round caused quite a few side
effects, at which point her father was quoted as saying, “Our belief is the
natural stuff will do just as much as that stuff if it's God's will.“
– In 2008 an upstate New York judge ordered Amish parents to allow an
operation needed to repair their infant's life-threatening heart condition,
they had previously refused it based on religious grounds
• The Amish are employed in this study as a case study for religious
freedom versus the rights of pediatric patients.
– There are many more religious groups in this country who are equally
isolated and sometimes even more restrictive than the Amish that impose
similar restrictions on their children.
– It is estimated that since the 1980s in the United States approximately 300
children have died of "religion-based medical neglect”. http://www.examiner.com/article/a
mish-wealth
• Dr. Richard Sloan eloquently summed this up when he said:
"Too often, deference to religion in contemporary American
society has resulted in us subordinating all other values. The
law must recognize that the right of children to live
supersedes the rights of their parents to free expression of
religion.“Works Cited
• Associated Press. (2013, December 6). Medical guardian drops bid to force chemo treatments on Ohio Amish girl with cancer read
more: http://www.nydailynews.com/life-style/health/medical-guardian-drops-bid-force-chemo-treatments-amish-girl-article-
1.1540367
• Bone, A., Kuehl, A., & Angelino, A. (2012). A neuropsychiatric perspective of phenylketonuria i: Overview of phenylketonuria and its
neuropsychiatric sequelae. Psychosomatics, 53(6), 517-523.
• Davis, D. (2007, July 25). Amish 'dentist' pleads not guilty.The Daily Jeffersonian. Retrieved from http://www.daily-jeff.com/local
news/2007/07/25/amish-dentist-pleads-not-guilty
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http://www.nydailynews.com/life-style/health/amish-girl-hiding-avoid-forced-cancer-treatment-article-1.1533048
• Guzder, D. (2009, February 5). When parents call god instead of the doctor read more: When parents call god instead of the
doctor Time Magazine, Retrieved from http://content.time.com/time/nation/article/0,8599,1877352,00.html
• Harper, Douglas (2010), "Anabaptist", Online Etymological Dictionary. Retrieved February 21, 2014.
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Harcourt Brace Jovanovich College Publishers
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• "Newborn screening". (2014, February 25). Retrieved from http://ghr.nlm.nih.gov/nbs
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http://www.portal.state.pa.us/portal/server.pt/community/infant___newborn's_health/14173/newborn_screening_and_follow_up
_homepage/558183
• Purnell, L. (2013). Transcultural health care: A culturally competent approach. (4th ed., pp. 115-136). Philadelphia, Pennsylvania:
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• Stevick, R. (2007). Growing up amish. Baltimore, Maryland: The Johns Hopkins University Press.
• Strauss, K., & Puffenberger, E. (2009). Genetics, medicine, and the plain people. TheAnnual Review of Genomics and Human
Genetics, 10(24), 1-24. Retrieved from http://www.etown.edu/centers/young-center/files/hmorton-references/Annual Review Gen
and Hum Gen 2009.pdf
• Tighe, M. (2013, December 8). “Baby screenings lag among Amish, doctor says”. . Lacrosse Tribune. Retrieved from
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0019bb2963f4.html.You can also read
