An Amish Paradox
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Amish Values and Doctor-Patient Relations
Without exception, the professionals we interviewed noted several qualities in their Amish patients that they admired. They consistently mentioned the higher pain tolerance they found among their Amish patients, both men and women. “Oh, they have a higher tolerance,” observed a veteran doctor. If you have to do some facial stitching, “that’s usually a horrible experience to have to go through. You know, no kid likes that. They’re screaming. The Amish kids, the mother will hold them, the mother or father, and tell them, ‘It’s gonna hurt, you can do it.’ The kid will just sit there, might have a tear or two, but he won’t move and they do real well. Sometimes, you think, too well for a small kid.” One physician told another story of an Amish man who came into his clinic with a thumb off, and the doctor told him he should go to the emergency room to have a specialist treat him. The man replied: “Well, either you’re gonna do it, or I’m gonna do it.” If at all possible, the Amish generally prefer to be treated in the doctor’s office rather than an emergency room, where treatment costs much more.
Another dimension of Amish culture that helps its people adapt to health difficulties and shapes their relationship with caregivers is the fundamental belief that, ultimately, what happens is in God’s hands. There is a basic acceptance of what comes. “I don’t think they have as high of expectations as the English do. They accept things the way they are … if things go sour, it’s God’s will.” Consistently, the doctors we interviewed said that the chances that Amish patients will sue their caregivers are virtually nonexistent. In working with English patients, a psychiatrist found himself having to cope with the mental “background noise” of worry over being sued. The “pretend litigation” in his head has distinct effects in counseling these patients: “I monitor every word I say and write to make sure it is liability proof. I frequently find myself silently answering the questions of pretend lawyers in pretend depositions.” The views of another professional encapsulate the general opinions of other caregivers we interviewed:
I enjoy my Amish patients and one of the reasons I enjoy them is because they come in with a lot fewer strings attached. They don’t participate in government programs, they don’t have an attorney, and they’re often not participating in any formal insurance policy other than their church … I feel like in a way because I don’t have to worry about all of these third party entities kind of looking over my shoulder, I can be more natural with an Amish patient than with other patients … They treat me with more respect than my English patients … They don’t whine and complain and call their attorney if they don’t like me; they just don’t come back … My other patients are a lot more likely to challenge my opinion.
The Amish tend to trust someone who they believe is working on their behalf. However, remarked a school psychologist, acceptance of God’s will makes some Amish less proactive than the English and can exasperate professionals, who become “frustrated with the slowness to react to things and maybe with the feelings amongst the Amish that ‘let’s not react too fast to this.’”
The Amish are also very pragmatic in their approach to health care. They will continue to come in for help only if they believe they are being helped by the treatment. Whether health care givers are licensed or not is less important than apparent positive results. Many Amish are “not really concerned about licensure. They’re concerned about outcomes. And so if they have someone that they feel is communicating with them well, understands their needs, then they’ll utilize that person whether or not they’re licensed.”
As in any society, however, not all Amish think and react the same way. Especially in the Holmes County Settlement, where there is a larger variety of types of Amish than in other settlements, significant variations appear. Members of the more conservative Amish churches generally desire less intervention and tend to delay treatment. They are less likely to go to a hospital to be treated, less likely to get immunized, and more likely to need simplified explanations. Professionals also have to speak more clearly and simply to patients from more conservative churches because they are more likely to have difficulty with English. They are also less “verbal,” as one physician put it, suggesting that communication is more difficult for them than, for example, members of the New Order. Consequently, how these churches are distributed affects the experiences of caregivers. One Holmes County physician with an Amish background remarked, “It’s hard to generalize about the Amish because of their diversity.” In referring to a friend and doctor who works in Wayne County, he noted that “he had a lot more Swartzentruber Amish; his Amish practice is totally different from mine.”
Sensitivity to and respect for Amish culture and internal variations are important to patients. A physician who can speak Pennsylvania Dutch or who has an Amish background will be attractive to the Amish. In pediatrics Pennsylvania Dutch may be especially needed because in most cases, Old Order and Swartzentruber children do not speak English before going to school. Being able to “discern” the differences among Amish patients is also important for caregivers: “There are some very subtle things that you look for, that I look for when they come in. For example, you see how they’re dressed. And that is one of the biggest things I look for. And you’ll see who brings the patient in. Is it the father, is it the mother that comes in?”
Since Amish men tend to have more contact than women with individuals outside their community, female patients are more likely to experience a language barrier or be nervous about their visit to a doctor. So having a female doctor is important for many Amish women. They may discuss issues that they would not be willing to broach with a male caregiver. “Females tend to take more time with the patients as a whole. And so that opens the door for the patient to feel more comfortable,” observed a female doctor who has worked with the Amish for eight years and has an Amish background.
Being willing to spend extra time with patients in the office is a quality that doctors notice is appreciated: A physician commented, speaking of the Amish: “I think they’re in less of a hurry than the English people are. I mean, they come in and they like to visit with me … They want to talk about their kids that you delivered, and all this stuff … They also come into the office and if they have to wait an hour, or an hour and a half, most of them are not upset by that. That’s part of life.”
Paying for Health Care
It is no secret that the costs for health care have been rising in the United States. The reasons are many: advances in technology, malpractice insurance and lawsuits, enhanced preventive care and diagnostic testing, accelerating drug prices, and changes in the nation’s demographic profile. Higher costs have a direct and serious effect on many Amish because they generally have tried to avoid participation in governmental health programs like Medicaid and Medicare and most do not carry health insurance from a private employer. Swartzentruber Amish are especially averse to participating in insurance programs. However, the high costs of catastrophic events and chronic illness have pressured some Amish employees working in English-run companies to use the health insurance available from their employers. Some have begun to use Medicaid as well, “and that was unheard of when I started practice just eight years ago; but young families are just strapped,” noted a local physician specializing in obstetrics and gynecology.
Some Amish churches limit the range of permissible jobs or prohibit employment in certain organizations, thus increasing the probability that some individuals will be poor and will not be able to afford health care on their own. A family might encounter a difficult time financially because the man is allowed to work only for an Amish employer, who generally pays less than would an English employer. “That’s been an issue with some of my pregnant moms. I don’t think they’re getting enough protein. And I think finances come into play there,” concluded a local doctor. A family might be in a real bind because, in general, the more conservative church districts are less likely to provide the amount of aid to a family that might be required
to cover their health care costs. A chiropractor who has worked with the Amish for twenty years, and whose father and grandfather also did, suggested that Amish patients who are financially strapped tend to spend more time when visiting a doctor: “I’ll tell you one thing the Swartzentrubers do is they want to get their money’s worth,” and so they will ask about and mention every little physical problem they might have … So yeah, I’d say the Swartzentrubers do that more than the New Order.”
As a whole, the Amish are very cost-conscious: “They sure flock to the place that’s cheapest,” pointed out one physician, and it is a refrain mentioned by most other health care givers. Some groups of Amish have bargained with and arranged for lower costs from health care institutions, for example, in Toledo, Akron, and Millersburg. It is not unusual for the Amish to travel outside the state because of the availability of lower-cost health care elsewhere.
To increase its attractiveness to the Holmes County Amish community, one local hospital launched a program that not only offers transportation for patients but also provides housing accommodations for families and friends of Amish patients and a set of pricing packages for a wide variety of services utilized by self-paying patients, such as the Amish, who generally pay at the time of service. This form of payment reduces patient bills by more than one-third. Between 2005 (the year the program was inaugurated) and 2008, the number of Amish patients using the hospital increased 35 percent, according to the Amish advocate at the hospital. The hospital also actively engages in a variety of outreach programs and has an Amish advisory board to help direct hospital-Amish relations.
Another tactic used to reduce health care costs is to first see health care givers who might be able to be of help but will not demand that patients undergo a large battery of expensive tests and who generally treat patients in their offices. In this way Amish patients avoid the high costs of tests and treatments given at a local hospital. Their pragmatism also helps the Amish keep their health care bills down: “If they think that they can spend a reasonable amount of money and that their loved one will be helped, then they’ll do it. If they didn’t think it would help, or that it costs too much, then they wouldn’t do it,” says a Wayne County psychologist. Despite the pressures of higher costs, however, virtually all of the health care givers we spoke with noted that, as a group, the Amish are better than their English patients at paying their bills.
Because of the high costs of many medical treatments, most Amish churches participate in aid programs that help defray high health care costs encountered by their members. However, the Amish vary in the kinds and availability of church programs with this purpose. In 2009 there were three general health care programs for the Ohio Amish. Old and New Order Amish have separate church funds (Church Fund 1 and Church Fund 2, respectively), into which members pay a monthly fee. For those of each order who do not wish to participate in the relatively new church fund programs, there is the Hospital Aid Program, for which members pay a flat monthly fee. Most of the Hospital Aid Program members are Old Order. Swartzentruber churches are the least likely to have any such programs. When asked about how the Swartzentrubers cover health care costs, a member of the Amish statewide committee on hospital aid replied: “I really don’t have any idea how they operate … I’m not aware that we have any of those people within our plan.” A representative of the Swartzentruber Amish noted that although they do not have a church fund, members get together to provide financial aid. There have been instances when Old Order groups have had fund-raisers to pay off Swartzentruber hospital bills, although the money has not always been accepted.
A Holmes County hospital provides a three-bedroom furnished “Amish House” for Amish families who come from afar and for Amish patients who will undergo surgery soon. Photograph courtesy of Charles Hurst.
In a broad sense, the church funds and the Hospital Aid Program are similar in their operation and purpose. In each order there are local church committees of Amish men, and a state committee for each program provides oversight by screening and approving payment of hospital expenses. In the case of the Hospital Aid Program, the choice of the term aid is deliberate, since the term insurance has negative implications for many Amish: “All join as a brotherhood in trying to help others in need. This is no insurance; it is only an aid in helping each other.”43 In an interview, the first point made by the chair of a local hospital-aid committee was that the guiding principle behind the program was helping others: “Helping each other in need” appears on the cover of a booklet describing the program, and “Love thy neighbor as thyself” appears on its last page. This ethic, which holds for the church funds as well, means that some wealthy members will pay into the program but not draw from its funds because they can afford to pay for many of their own expenses. Members of Old and New Order Amish churches in Ohio may become members of each other’s programs by paying into the programs. The idea is to have a fund from which members can draw when they incur heavy health care expenses.
The Hospital Aid Program requires that members pay a monthly fee in addition to a deductible when hospital expenses arise. The monthly fee can fluctuate depending on the demands that are placed on the fund. These demands have increased as health care costs have risen. For example, in 1975 the bimonthly fee for each family in a forty-church plan in Wayne and Holmes counties was $12.00. In 1980 the fee rose to $45.00 per month for a two-person family. In 2004–5, the fee reached $75.00 per month. In 1999 the plan distributed more than $871,000 in payments; in 2004, payments almost doubled, reaching $1.6 million. If costs exceed expectations, additional funds may be requested to cover added costs.
Sometimes money is collected more informally through “showers,” which are organized get-togethers to raise funds to help those who have recently experienced a health problem of some kind. Ads for showers regularly appear in the Gemeinde Register, a newsletter serving the Amish of Ohio:
Lets have a whatever you wish shower for [name] broke his leg while playing gray wolf … lets remember his parents with a Money shower as they had Dr. bills lately.
Lets have a Birthday, Money & Letter shower for [name] … while he recovers from surgery to take out his one kidney, due to having a large tumor in his kidney.
Lets have a Get-Well and Money shower for [name]. They had lots and lots of hospital and Dr. bills and still have.44
As noted earlier, the economics of health care create complicated ethical and cultural dilemmas for the Amish. The economic pinch caused by high health care costs can catch Amish families in a double bind. For example, a family does not want to be perceived as a burden to other members of their community and thus may hesitate to use the hospital aid plan or a church fund even when the help is needed. Or commercial insurance may be discouraged by the church, but use of it may allow a member to avoid using the Amish Hospital Aid Program, thereby diminishing his “burden” on his community. Neither choice is optimal, because Amish church members frown on both use of insurance and being a burden to others. Membership fees in the various plans can be afforded better by wealthier church members, who are generally in less need of help from the funds than poorer members, who are less likely to be able to afford the rising fees and in more need of support when facing high medical bills. A separate church collection may cover the bills, but at the same time, this separate approach draws attention to the poor as a burden for the church.
Moreover, the chronic health problems that are found sometimes more frequently among the Amish than in the general population place a very heavy strain upon church programs, resulting in unwelcome pressures to participate in governmental insurance programs such as Medicaid. Historically, participation in governmental programs has been prohibited or at least frowned upon by Amish churches, but the need to properly treat chronic health problems may require it. The dilemma is personified in the case of a three-year-old Amish hemophiliac who suffered internal injuries and needed to be treated. The father “fears he’ll be forced to choose between getting help paying for h
is child’s care or following his religious convictions.” In the meantime, the state has been paying his bills.45 The Amish encourage a tight, closed community in which they are expected to marry other Amish, but doing so amplifies the potential for certain chronic inherited health problems, which in turn lead to greater medical expenses and heavier economic burdens on the Amish community.
Confronting Death
“I think the Amish are among the very great minority in our society who know how to die right. I mean, die at home is the way to do it.” This observation comes from a retired M.D. who grew up in an Amish family and spent several decades treating Amish patients. One of the recurrent themes in our interviews with a variety of health care professionals in Wayne and Holmes counties was that the Amish see death as a natural process, as an inevitable part of their lives. “Death is a part of life,” explained one physician. Another thought “that they [Amish] are gracious in their deaths because they believe. They believe that they’re going to go to a better place.” The director of a Holmes County funeral home estimated that about 75 percent of Amish die in their homes.
According to local physicians, the Amish also carefully consider others in their decisions regarding the need and desire for expensive health care or extraordinary measures when they have a terminal or life-threatening illness. They have “a healthy realistic theology about life itself,” and if the treatment is not a positive cure or if the cost “is going to bankrupt your family [or community], they’re going to choose not to do it.” “They think about other people. They think about the expense.” In recollecting his many experiences with Old Order and Swartzentruber Amish, another doctor observed, “If we told them it’s terminal, they would as good as take them home and take care of them and let them die. Rather than starting a treatment and last another six months, a year, two years, and spend all that money.” For many of these Amish, “cancer” is the “death word.” “If I’m going to die anyway, why spend the money” and take money away from those who need it in their lives. At home, they may get visits from hospice, whose representatives can ease pain and help make arrangements when the patient dies. In general, the Amish seem to be very accepting of hospice’s mission.