Treating the ‘Plain People’
Amish patients are a challenge to providers with no knowledge of the belief systems and customs of this group of very private people. They have unique barriers to health care and are prone to unique medical conditions. A basic understanding of the historic, religious, psychosocial and health issues within this closed community can help in the clinical management of the Amish patient’s health care needs.
Access to Health Care
Nothing in the Amish understanding of the Bible forbids them from seeking modern health care services. But it is within the Amish belief that good health is a gift from God, and that they should take good physical and mental care of themselves.
The health care issues that make some of the greater impact the Amish are different from those of the non-Amish community. These are based on the Amish’s closed community and subsequent restricted genetic pool.
The limited genetic pool arises from the fact that the Amish don’t evangelize or seek to add outsiders to their church. And it would be hard for outsiders to adopt the Amish lifestyle with its relative simplicity and austere standards.
The Amish have been the victims of various forms of quackery.1 This has not been limited to the purveyors of suspect medicines and treatment—they have been truly exploited by unlicensed providers who make unsubstantiated claims about treatment methods. These treatments have included animal or veterinary medications, low-voltage electric current application and other risky or unproven health care methods. This has been made worse because of the lack of traditional health care providers in rural areas and the Amish religious and conservative beliefs that limit their desire to report being victimized. This stems from their not wanting be involved in the outside community.
The preventive medicine thrust of today’s health care is partially lost within the Amish community because of the way most immunization and public health programs are directed. The mass media’s focus is lost on a group that doesn’t have televisions or radios as the center of its information sources. Also, the requirement for preschool physicals and immunizations is lost in most cases related to religious exemptions. That leaves the Amish more vulnerable to preventable diseases such as polio2,3 or rubella,4,5 which are able to transmit rapidly through this largely unprotected community as a result of the close contact of the group during the weekly worship services.
In 1979, an epidemic outbreak of paralytic poliomyelitis occurred in the Amish in Pennsylvania. The outbreak spanned from May 25 to July 27 and extended from the source state to as far away as Ontario. All cases were seen in unvaccinated Amish. The spread was caused presumably by a wild-type poliovirus, and the source was isolated to a wedding in Pennsylvania. This was the last case of polio reported in the United States. The problem with polio has decreased markedly but isn’t gone. Another outbreak of polio occurred in the Netherlands in 1992, and the victims of the infection were unvaccinated persons whose religious group generally does not accept vaccinations.
Rubella outbreaks have occurred within many of the Amish communities, and the largest was February through May 1991. This outbreak involved 33 states, but six states within that group had the highest rates of infection. Those six states accounted for 89% of the total cases, and they were the states in which the Amish communities reside.
The postinfection problem, congenital rubella syndrome (CRS),6 had occurred in the Amish in about 85% of births. The manifestations of CRS ranged from mild to severe, with the highest index being congenital heart disease, deafness and purpura. Since these diseases are uncommon, and because most primary care providers have little or no hands-on knowledge of these disease processes other than from textbooks and the rare case during training, the diagnosis can be delayed, helping in the spread of the disease.
The occupational risk of tetanus is much higher in the Amish because the greater chances of farming-related open injuries and because of horses used in most parts of daily operations on the farm and for travel.
The area of farm accident prevention isn’t well directed toward this group, because current programs supported by the U.S. Farm Bureau and other agencies are related to the proper operation of farm machines, with little or no information available about safe operation of animal-powered farm systems. Ohio recently started a safety education program for Amish farm children.7 This program has two areas, a general safety component and a first aid program, which have been introduced into the Amish school system.
The general safety program covers road travel safety to help reduce the risk of animal-drawn vehicle traffic crashes, which have been on the rise. The first aid course is an expanded course to cover general first-aid and minor illness treatment.
Ob/Gyn Reproductive Health
The primary access point for most obstetric and gynecologic care in this community is the midwife,7 specifically, an Amish midwife.8 They are trained on the job, most often from mother to daughter. The outcome of care is equal to or in some cases better than that of non-Amish patients. This care is limited to home pregnancy and delivery and is restricted to a degree by state health codes and regulations.
The greatest problem is the lack of access to laboratory testing for blood typing and hematology. This problem has been overcome in some communities, with semiformal arrangements with a health department or a licensed health care provider. In those cases, a trust has been developed between the Amish midwife and the health care provider for a goal outcome of healthy baby. Then, if problems do occur with the pregnancy, the licensed provider is in place to act as an entry point into the standard health care system.
One major issue is the lack of testing and tracking of in-home births performed by Amish midwives. Because of this, there is a failure to diagnose phenylketonuria and other diseases that are tested for in hospital births, and no base immunization series is started.9 The birth tracking in many cases doesn’t start until the parents or the midwife certifies the birth. This can occur as long as a year after the delivery date, if at all in some cases. With the lack of a primary care provider, physical examinations for childhood development and wellness are not performed, allowing some physical problems to remain undetected for an extended time.
The Amish woman who doesn’t have a primary care provider is less likely to have a regular health maintenance program. This places her at an increased risk of delayed diagnosis of cervical or breast cancer until the disease has progressed to a very advanced state.10 Amish women are at a greater risk of osteoporosis than the non-Amish population because they generally have a higher number of pregnancies and breastfeed in most cases, reducing the time they have with estrogen exposure to the bone. Most of these problems could be greatly reduced or even eliminated by having access to a primary health care provider who understands the needs of this select population.
The Pediatric Patients
Amish children pose more than one challenge.11 They have a distrust of outsiders and a language barrier prior to the first grade. This makes the basic diagnostic workup somewhat difficult. The children also are very quiet as compared to the non-Amish patients seen in most practices. They have not been exposed to the health care system and are seen only for acute episodes of illness, which are first treated at home with over-the-counter medications and time.
When Amish children present for treatment, they are in fact ill. In many Amish communities, the issue of immunization programs is avoided because of the government funding of the programs, and by the Amish wanting to have as little to do with the government as possible. In most cases, these children have had limited physical examinations based on the concept that acute illness is the only time to see a health care provider. Because of the attitudes and lack of knowledge of most public health agencies, this group is lost to any community tracking.
Some very serious diseases that are more common within the Amish are not diagnosed until the disease has progressed to an irreversible or untreatable point. The delay is, in part, a result of a lack of knowledge about these disease states on the part of the primary care provider, too, when the sick child presents for treatment.
For example, glutaric aciduria 1 and 2 is found in a much higher rate within this community than almost any other group of people.12 About one in 200 Amish children are affected with this disease. The child can go from being well to very ill in a matter of hours. The first symptoms could be flu-like and progress to spastic movement, cerebral edema and injury. The symptoms vary in some cases with a slower onset, but the outcome is poor if not treated. The treatment is based on a dietary change and should be started as soon as a diagnosis is made. The method of diagnosis is based on laboratory testing for multiple acetyl-CoA dehydrogenase deficiency and elevations in glutaric acid, along with the physical examination. This disease is a sex-linked hereditary genetic disorder.
Phenylketonuria is another genetic disorder found at a higher rate within the Amish.13 This is a deficiency of phenylalanine hydroxylase for the conversion of phenyalanine into tyrosine. Due to the conversion failure, the PKU levels become toxic and the symptoms occur. In most cases, the first symptoms are a rash; symptoms can progress to mental retardation. The onset is in early infancy. The treatment is a dietary change with the total removal of phenylalanine.
Many other diseases are more specific to the Amish community but don’t have such a severe outcome. One example is cartilage-hair hypoplasia, a genetic defect that is marked by dwarfism with skeletal defects and short, very sparse, fine, brittle light-colored hair.14 This disorder is almost always seen in the Amish of North America and no other group. Amish albinism is a distinctive autosomal recessive phenotype genetic disorder that is exclusive to the Amish.15 The findings in this process are primarily of a dermal and ocular presentation and in most cases don’t advance to the reduction of mental function.
Byler disease16 and Alagille syndrome are found within the Amish kindred at a higher rate than the non-Amish. These are genetic disorders that involve the hepatic structures. In both cases, the intrahepatic ductal systems have defects to varied degrees from a lower number of ducts to a total absence of bile ducts. These processes have many other outward defects of the extremities, facial and renal structures. The long-term outlook for these patients is poor, and there are very few treatment options.
General Medical Issues
The adult patient population, like the children, has most of its care directed toward acute problems with little time expended in the area of preventive care. Annual physical exams, screening for disease and related services don’t fit into the Amish concept. Part of the problem is that the Amish are not covered by any insurance programs. They do not want or ask for any public assistance with their health care needs. This is part of the reason for the lack of immunizations, since most of the general programs are government-funded. Like the children, the delay in diagnosis is based on the lack of primary care access and the advanced state of the disease process by the time they seek care. The diseases seen in the adult Amish patient population, for the most part, are about the same as the non-Amish patients.
Special Medical Issues
Amish patients have special needs that are uncommon to other patient populations. They are isolated from easy access to hospital care because of the lack of insurance. In areas that have an understanding of the Amish way of life, informed hospital administrators have established a reduced-fee plan for the Amish with the understanding that the services would be paid for at the time of service.
The Amish community group together to help with the major medical costs of a community member when the costs are beyond that person’s or family’s ability to pay for the services. The costs of medications and durable medical items can be reduced with the use of office samples and a recycling program of crutches, etc., within the community.
The lack of rapid access to motor vehicle transportation for urgent travel poses a problem in rural areas. This is made worse by the lack of telephone communication for access to the emergency medical system in true emergency cases. One simple remedy could be the reintroduction of house calls by local health care providers. This could be done with little cost to the provider and create a better understanding of how the patients live. With that knowledge, providers could better form a treatment plan that can be undertaken in a home without some of the things the non-Amish take for granted.
Psychologic, Sociologic Issues
The pressure for Amish parents to maintain their lifestyle and to keep their children safe from outside problems and influences is a major task. This is compounded by the rapidly changing world that is entering into traditional farming communities. This new population shift is part of the illegal drug manufacturing industry. The easy access to remote sites with this high-risk industry has been a negative influence on some of Amish youth. Amish youths have been involved in drug transportation and sale, bringing them into the criminal justice system and prisons. This has caused the introduction of many antisocial behaviors into this closed society, such as drug and alcohol use and the breakdown of the family unit. This trend has been beyond the standard coping mechanism of their families and communities, since a major part of the Amish lifestyle is to be as uninvolved as possible with outside world and all of its problems.
The issue of manic depression has become linked to chromosome 18 and is found to be a treatment issue with the Amish.17 This group has an average incidence of bipolar disorder that is underdiagnosed and undertreated because of social attitudes within the community and a general distrust of the medication-based management of psychiatric diseases. The general belief is that a person or family should be able to cope with the problem, and it should not be taken outside of the community.
The closed genetic pool has given rise to a possible cause of Alzheimer’s disease with a linkage to apolipoprotein E-4 allele.18 In studies, a prevalence of the Amish patient pool had both Alzheimer’s disease and changes in the apolipoprotien E-4 allele. These patients have shown an increased familial onset of the disease, too.
The Role of the Provider
Since most of the Amish live in rural or remote areas of the country, they might have a physician, PA or NP as their primary care source. They might have the traditional Amish midwife as their source of care, too. With that in mind, you might need to adjust your style of practice to fit into this special area of needs.
One of the areas that should be considered for changes at your site is your parking area. Set aside some parking for horses and buggies. This area should be out of the general traffic flow with some type of hitching post and a water source for the horses during the summer. This part of your parking area should be well drained—a good surface would be grass or gravel.
The practice should be a source of education and become a resource for information about wellness and health issues that affect this population. If possible, develop a program with the local hospital for special fees for services with this group, since they have no insurance and pay for services rendered without question. This should extend to finding other providers who understand this select need and are willing to accept a varied fee plan also.
Since the issues related to a government-based immunization program don’t blend well into the Amish way of life, consider setting up your own program onsite or at the Amish school. At that time, you can start a well child program, too.
Be willing to do home visits. The Amish only ask for help when they have a truly sick person. During heavy snow, sometimes it is easier and safer for the provider to make the house call than for the patient to risk a horse and buggy ride.
Part of your resource base should be newborn testing, done either by your office or by the Amish midwife. The best laboratory for this is Neo Gen Screening, 110 Roessler Rd., Pittsburgh, PA 15220. This company has a long history of working with Amish infant screening and will help with follow-up and referrals on positive test results.
Another very good resource on Amish health care is the Clinic for Special Children, P.O. Box 128, Strasburg, PA 17579. This clinic is under the direction of D. Holmes Morton, MD, a very dedicated physician who has been involved in the development of treatments for many of the metabolic diseases that affect Amish children. He has extensive knowledge of the disease processes that affect the Amish and Mennonite communities.
If you develop an understanding of the Amish way of life, you will be rewarded in ways that will surprise you. You can have a positive impact on a group of people who wish for nothing other than to maintain their way of life.
Clyde J. Yencer is a physician assistant at Great Lakes Family Care in Manton, Mich.
1. National Council Against Health Fraud. Quackery Aimed at the Amish. NCAHF News. January/February 1997;20:1,4,9.
2. Chow M. Molecular analysis of poliovirus neutralizing epitopes [abstract]. National Institute of Health Computer Retrieval of Information on Scientific Projects (CRISP) database. Available at: http://commons.cit.nih.gov/crisp/owa/crisp_lib.getdoc?textkey=2837385&p_query=&ticket=1803175&p_audit_session_id=1446919&p_keywords=. Accessed April 10, 2000.
3. Poliomyelitis–United States, Canada. MMWR Morb Mortal Wkly Rep. 1997;46:1194-1195.
4. Briss PA, Fehrs LJ, Hutcheson RH, Schaffner W. Rubella among the Amish: resurgent disease in a highly susceptible community. Pediatr Infect Dis J. 1992;11:955-959.
5. Outbreaks of rubella among the Amish–United States, 1991. MMWR Morb Mortal Wkly Rep. 1991;40:264-265.
6. Congenital rubella syndrome among the Amish–Pennsylvania, 1991-1992. MMWR Morb Mortal Wkly Rep. 1992;41:468-469,475-476.
7. Eicher C, Bean TL, Buccalo S. Amish buggy highway safety. Ohio Journal of Multicultural Nursing and Health. Summer 1997;3:19-24.
8. Campanella K, Korbin JE, Acheson L. Pregnancy and childbirth among the Amish. Soc Sci Med. 1993;36:333-342.
9. Salmon DA, Haber M, Gangarosa EJ, Phillips L, Smith NJ, Chen RT. Health consequences of religious and philosophical exemptions from immunization laws: individual and societal risk of measles. JAMA. 1999;282:47-53.
10. Troyer H. Review of cancer among 4 religious sects: evidence that life-styles are distinctive sets of risk factors. Soc Sci Med. 1988;26:1007-1017.
11. Buck RC. Being Amish: some notes on childhood socialization and acculturation among the Old Order Amish. Journal of Children in Contemporary Society. January 1980;13:32-37.
12. Biery BJ, Stein DE, Morton DH, Goodman SI. Gene structure and mutations of glutaryl-coenzyme A dehydrogenase: impaired association of enzyme subunits that is due to an A421V substitution causes glutaric acidemia type I in the Amish. Am J Hum Genet. 1996;59:1006-1011.
13. Grossman MH, Garner J, Weinstien R, Grover W. Identification of a new mutation at a single hind-III site in an Amish family with phenylketonuria. Am J Hum Genet. 1989;45(suppl 4):Al92.
14. van der Burgt I, Haraldsson A, Oosterwijk JC, van Essen AJ, Weemaes C, Hamel B. Cartilage hair hypoplasia, metaphyseal chondrodysplasia type McKusick: description of seven patients and review of the literature. Am J Med Genet. 1991;41:371-380.
15. Nance WE, Jackson CE, Witkop CJ Jr. Amish albinism: a distinctive autosomal recessive phenotype. Am J Hum Genet. 1970;22:579-586.
16. Clayton RJ, Iber FL, Ruebner BH, McKusick VA. Byler disease. Fatal familial intrahepatic cholestasis in an Amish kindred. Am J Dis Child.1969;117:112-124.
17. Kelsoe JR. The genetics of bipolar disorder. Psychiatr Ann. 1997;27:285-292.
18. Pericak-Vance MA, Johnson CC, Rimmler JB, et al. Alzheimer’s disease and apolipoprotein E-4 allele in an Amish population. Ann Neurol. 1996;39:700-704.
Who Are the Amish?
The Amish are a religious group with roots in the Mennonite community. They are part of the early Anabaptist movement in Europe. This was a group of people who split from Catholics and Protestants in the early 1500s. In 1693, the Amish, following a Swiss bishop named Jacob Amman, split away from the Mennonites.
The Amish have maintained the tradition of not having a church building, since churches in Europe were the subjects of attacks because of Amish religious beliefs. Instead, they hold their worship services members’ homes on a rotating basis.
The Amish and Mennonites escaped persecution and even death by coming to Pennsylvania as part of William Penn’s holy experiment of religious tolerance in the 1730s. From the first Amish communities in Pennsylvania, the population has developed settlements in 22 states and Ontario, Canada.
The educational process for Amish children starts at home with basic farming tasks for boys and housework-related tasks for girls. Until they start attending school, children speak the German dialect Pennsylvania Dutch at home and High German for worship services. After they start school, they learn English as part of their studies, making most Amish trilingual.
This education occurs in one-room schoolhouses, with all grades involved in educational activities as a group. The Old Order Amish follow this educational trajectory very closely, but some progressive Amish and Mennonites do go on to high school and college. The educational process goes to the eighth grade, at which point the children have an adequate level of knowledge to work well within their community. The U.S. Supreme Court handed down a landmark decision in 1972 exempting the Amish from compulsory education beyond the eighth grade. Amish students are tested with standard tests developed by the U.S. Office of Education and generally score as well as or better than non-Amish students.
Plain Style of Life
The social and family customs of the Amish vary somewhat among geographic locations, but in general most Amish follow these same basic customs: They dress in plain solid colors. Men and boys wear dark colored suits, straight-cut coats without lapels, broadfall trousers, solid-color shirts and black socks and shoes. Women and girls wear dresses of a solid color, with long sleeves and full skirts. These dresses are covered with a cape and an apron. Married women wear a white prayer covering on their heads; single women wear a black prayer cloth.
Women don’t cut their hair and wear it up and pinned. Men shave until they get married, then they grow beards. Men don’t have mustaches, because this reflected on the old European traditions of military men having them. This style of distinctive dress encourages humility and separation from the non-Amish world. Their clothing is an expression of faith.
The Amish wish to protect their lifestyle and church. They don’t use electricity other than self-generated sources, because this could lead to many temptations outside their community. It could lead to deterioration of the church and family life. This belief extends to the ownership of cars, because they could lead to easy access to the non-Amish world and its temptations. The Amish don’t like to be photographed because of the biblical reference in Exodus 20:4 related to graven images.
The importance of family and marriage is the central to the Amish way of life and church foundation. At about the age of 16, young men and women start the search for a spouse. These are the general steps taken before an Amish couple marries: They must both join the church. They must agree to follow the Ordnung—that is, the written and unwritten rule for daily living. This also is a guideline for life and a preparation for future home and marriage. The couple must be “published”; this is a notice to the members of the church after services on the second Sunday of October. This is done by all couples who plan to marry.
After being published, things move forward rapidly. The wedding and following feast happen at the bride’s home a few days after they publish. The service is complex and involves traditions that have been long-standing within the church. Unlike many non-Amish marriages, no flowers or music are involved. After the couple has been married, they live with the bride’s family until they are able to move into their own home in the spring.
The Amish have been the center of many misconceptions in the past and today. Because of the committed lifestyle of peace and nonviolence, they have been the targets of verbal and physical attacks. They also have been the targets of rumors about not being taxpayers. The Amish pay all taxes except Social Security, for which they have been exempted under Section 310 of the Social Security and Medicare Act based on their religious standing. To that end, they are not covered by any other part of that Act.
—Clyde J. Yencer, PA-C, RT(R), ARRT, BS