Immediately following each interview, we dictated ethnographic field notes as a voice recording, reporting pertinent information relating to the interviewee, location of interview, direct quotations, and reflective observations. These notes were maintained in a blog site that all five authors continuously reviewed. During approximately 15% of the interviews, we took contemporaneous written field notes.6,11,12 The authors present at each interview would review each other’s notes at the time of the voice recording to ensure accuracy. Beginning in the second month, interviews were analyzed using a codebook developed by one of the authors (L.G.) based on standard qualitative coding principles.8 Disagreements in coding analysis between the first coder (L.G.) and second coder (P.R.G.) were resolved by discussion between them. Constant comparison13 was used to iteratively compare each new interview with prior interviews. At the beginning of our last week of travel, when we entered Washington State, we purposely increased the numbers of interviews to ensure that we were not missing any themes. We used qualitative description and borrowed the technique of constant comparison from the grounded theory tradition for analysis.7
Finally, we recognize reflexivity as a factor in our interpretation of participant interviews.6,14 We are all employees of academic medical centers. Acknowledging the potential role of our background in the research, we made the work a “Listening Tour” as stated and did not correct any of the misinformation from participants. Nonetheless, we realized that our background influenced the way we heard the participants’ stories and observations.
People’s Stories: What We Found
Twelve themes emerged from our interviews (Table 2). Positive comments focused on the ACA guaranteeing people’s ability to insure children up to age 26 and the restrictions against people being denied insurance because of preexisting conditions. Negative comments, however, were more common. Of the eight negative themes we identified, four dominated in terms of importance of message and rate of occurrence.
Theme 1: The ACA has increased the cost of health insurance
Dana (42 years old, northern Idaho) revealed that her premium increased with Obamacare and the deductible rose from $700 to $1,200. “I don’t go to the doctor anymore since I can’t afford the deductible.”
Claire (43 years old, western Minnesota), saddled with a hefty deductible, commented, “and I have to pay for all of that out of pocket before my insurance kicks in?”
Josh (43 years old, eastern Minnesota) believed that premiums increased and “struggled to find the ‘Affordable’ in the Affordable Care Act.”
Sally (45 years old, central South Dakota) said, “After having health care included in my job for over 20 years, I had no idea how much health insurance would cost me. It makes you wonder if it’s even worth having insurance, if they’re going to nickel and dime you for everything.”
Irene (60 years old, central Washington) said, “Obamacare helped the people who were previously unable to afford insurance, but now working people … are struggling.”
As part of the ACA, people purchasing individual insurance whose incomes are between 100% and 400% of the Federal Poverty Level are eligible for a subsidy to offset the cost of insurance premiums. None of these five respondents received a subsidy.
Theme 2: Government should not tell people what to do
John (55 years old, southern Michigan) said, “It’s wrong for the government to tell you that the insurance has to pay for things you don’t believe in.” As a business owner who does not believe in abortion, why should he have to pay for insurance that covers abortion?
Shirley (68 years old, western Maryland) said, “People don’t like being told what doctor to go to.” She reported that since Obamacare, people in her area were no longer able to continue with their doctor because s/he would no longer accept the insurance. “But Obama said we could stay with our doctor.”
Frank (67 years old, western Pennsylvania) remarked that people should have health coverage but should not be forced to get it. “Being forced to get it is wrong … and it’s wrong to penalize people for not having it.”
Zach (35 years old, northern Ohio), a musician, reported that he is not a fan of the individual mandate. “You can choose whether or not to drive a car, but you can’t choose whether or not to be alive and need health insurance.” He felt forced to get insurance.
Henry (68 years old, eastern South Dakota) said, “We don’t want the government in health care,” and emphasized that the government should not offer handouts. “The government shouldn’t take care of you womb to tomb. There isn’t enough money in the budget.”
Although she believed “the government should not tell people what to do,” Sally (47 year old, western Minnesota) commented, “I have no idea how to fix it. I just don’t get sick,” exemplifying another common refrain we heard.
Theme 3: Diffuse responsibility for ACA problems
Insurance companies are to blame.
Jeff (49 years old, central Maryland) believed that “it’s not Obamacare but just the greedy insurance companies.”
Joan (64 years old, western Pennsylvania) told us, “Maintaining the private insurance industry was a mistake. As for-profit companies, their first priority is to deliver dividends to their shareholders and secondarily to deliver health care. Obama made a pact with the devil.”
George (45 years old, central Minnesota), when talking about the high costs, said, “it’s because the insurance companies are taking advantage, but that’s all because of Obamacare.”
Penny (63 years old, eastern Montana) viewed insurance companies as having too much control: “Who’s in charge here? When your health insurance determines your medical care, that’s a problem.”
Politicians are to blame.
Derek (36 years old, western Pennsylvania) said, “it’s all the regulations. When you have politicians trying to make health policy, it’s never going to work. Too many politicians and too much regulation—2,000 pages of regulation.”
Sean (69 years old, western Wisconsin) told us, “It’s not perfect, since the politicians made it.”
President Obama is to blame.
Karen (48 years old, eastern South Dakota) summed it up by saying, “It would have been a lot better if Obama’s name wasn’t in the title. Maybe they could have just called it New Care.”
Ami (51 years old, eastern Maryland) told us, “people are just opposed to anything from the Democratic party.”
Mike (73 years old, northern Oregon) said, “Republicans did an outstanding job in their marketing campaign to lead people to distrust the government and hate Obamacare.”
Betty (43 years old, central Minnesota) offered the sentiment, “its good he only has one year left.”
Theme 4: The ACA should not pay for other people’s problems
Margaret (62 years old, eastern Minnesota) stated, “Obamacare encourages people to take advantage of the system.” Growing up without running water and working all her adult life, she feels that she made it the hard way; why can’t everyone else? “Those [people’s tattoos] cost money—why don’t they use their money for health care or food? Why do the others ask for disability; why don’t they continue working?”
Laura (69 years old, western Pennsylvania) objected to paying for those “other” people. Comparing car insurance with health insurance, she commented, “Why should I pay for motorcycle riders who don’t wear helmets?”
Joe (72 years old, central Wisconsin) told us when talking about contraception, “That’s a lifestyle choice, it’s not a medical problem—the government shouldn’t have to pay for that.”
Karen (48 years old, eastern South Dakota) concluded, “he just gives all of the taxpayers’ money away to poor people.”
Jose (67 years old, central Montana) deeply valued hard work and believed government handouts are wrong: “You need to earn everything.”
Ray (53 years old, western Montana) believed that Obamacare “encourages people to take advantage of the system. People should go out and get an education and get a job where they are covered by insurance.”
Bob (70 years old, eastern Washington) asked, “Why should I have to pay for other people’s problems? For example, take a man. Why should he have to pay for childbirth?”
Understanding These Stories
Through this study we learned of two overarching themes, both filled with anger: (1) People were unhappy with regard to many of the administrative aspects of the ACA (Themes 1–3 above), and (2) people identified “others” as undeserving of health insurance through the ACA (Theme 4).
The administrative aspects of the ACA.
As to the administrative aspects of the ACA, much of the expressed unhappiness was related to (1) the individual mandate, (2) an increased cost of health insurance, and (3) government and insurance company control of the ACA.
The first two of these unpopular features of the ACA are closely linked. The individual mandate was required in order to make sure that all Americans, including those with preexisting conditions, would have access to health insurance. For the first time in the United States, the ACA prevented insurance companies from refusing to insure or charging increased premiums for patients with “preexisting conditions.” Health insurance providers were obligated to offer policies within a given territory at the same price to all persons regardless of their health status or history of illness.
Undoubtedly, patients with preexisting conditions are very likely to have increased health care expenditures. These increased health care costs can be covered in part only if healthier people are required to have insurance—hence, the individual mandate. Under the ACA, this requirement that all Americans must have health insurance added many young, healthy patients to the insured population.
Unfortunately, if under this mandate the addition of young healthier patients did not offset the increased expenses of those with preexisting conditions in a given insured population, some insurers would accrue a deficit. Many responded by increasing premiums, increasing deductibles, or discontinuing offering insurance altogether.
Conversations also demonstrated that many people harbored a generalized anger at “the government.” Many believed that all health care is controlled by the ACA. This is incorrect, as the majority of U.S. health care is covered by employment-based private insurance (55.4%). Although Medicare (16% of U.S. health care) and Medicaid (19.5%) are government run, they are not part of the ACA.15,16 ACA insurance purchased via the marketplace was intended for those who did not qualify for the previous three entities—about 10.4% or 33 million people in 2014.16 Many others said that government simply should not be involved in health care. This is surprising given that Medicare, which is mandatory health insurance controlled by the federal government, is highly rated by the public.17
Disregard for “others.”
The lack of empathy for “others” and an unwillingness to help fellow citizens was a surprising finding, especially in that the bicycling authors—complete strangers in their own right during the trip—were frequently approached by people with offers of roadside assistance and invitations for meals or lodging. Many conversations were filled with deep vitriol and a profound unkindness directed at those perceived to be lazy, stupid, or financially irresponsible. Comments like, “Why should I have to pay for those people?” typified such judgments. These expressions were often accompanied by the comment, “Obamacare encourages people to take advantage of the system,” and were coupled with complaints of having to pay increased premiums.
Common to many conversations was that the ACA wasted government assistance on “others.” Poor people and people who make life decisions that adversely affect their health were commonly identified in this context.
Although our study was designed to listen to people’s opinions rather than explore in depth their underlying reasoning, these conversations provided us with the opportunity to link articulations of anger with overtly expressed explanations. We heard over and over that health care is complicated, premiums and deductibles have risen, and networks have narrowed. When faced with these often costly and inconvenient consequences, particularly during an economic downturn, and fed by misinformation that is amplified by a partisan political process, the blaming of President Obama, “big” government, “greedy” insurance companies, and “others” became acceptable coping strategies.
These sentiments are quite different from those expressed in countries that offer publicly supported universal health care coverage. As stated by Health Minister Ulla Schmidt, German health care is based on the concept of “social solidarity.… Everyone in Germany should have guaranteed access to state-of-the-art medical care and contribute to the financing of this guarantee on the basis of the household’s ability to pay.”18 The core principles of the National Health Service, which has provided universal health care to the United Kingdom since 1948, are that it (1) must meet the needs of everyone; (2) must be free at the point of entry; and (3) must be based on clinical need, not one’s ability to pay.19
Albeit at times misinformed, our informants’ voices were loud and clear, and they conveyed a strikingly similar negative sentiment across the geographic breadth of the United States: The ACA is seriously flawed. Rather than having any concrete ideas as to how to fix it, however, many informants resorted to blaming others: those who created the ACA and those who benefit from its implementation. This blaming was accompanied by a palpable anger. Although certainly a real and deeply felt emotion, in relation to beneficiaries, it represented a particularly unfortunate and disturbing theme of exclusion: “Others” were not worthy of health insurance.
This work suffers from four limitations. First, our quotations may have been richer had interviews been audio recorded, and such recordings might have helped us illuminate themes more fully. Second, we were not able to conduct follow-up interviews, which would have helped us clarify aspects of informants’ comments and explore their significance in more depth. Third, although qualitative descriptive methodology supports investigation of surface aspects of human reasoning around specific questions,4 it does not allow for the kind of inquiry into individual understandings and group cultures that more thorough ethnographic studies offer. Fourth, as with any study involving in-person interviews, our work is limited by potential researcher bias. In our study, the researchers conducted the interviews, analyzed the responses, and determined representative themes. It is possible that a bias held by any researcher prior to the study could impact any stage of the research process. We attempted to minimize the possibility of researcher bias in a variety of ways, such as having multiple interviewers both conduct and review the interviews, but it was not possible to completely eliminate the possibility of researcher bias.
Conclusions and Reflections
As academics in medicine (P.R.G., E.C.S., J.E.D.) and health economics and health policy (A.H.), we were most surprised at the bitterness and anger directed at the government and others. This needs to inform our teaching. We need to let our learners anticipate and prepare for this and be attentive to patients’ thoughts, experiences, and emotions. We must help our students learn how to engage their patients in conversations about health policy. Although the short patient encounter cannot provide adequate time for a thorough education on health policy, encouraging our students to listen to patients’ concerns will allow them to make more informed recommendations to their patients.
From a student’s perspective (L.G.), it is in our third and fourth years that we have the most time with patients, which extends vastly beyond the time that our residents or attendings can spend with patients. We cannot use this time to offer our patients medical counsel, as we are unqualified to do so. However, if we are politically informed and aware of health care insurance systems, we can answer some of the most important questions our patients ask. The profound desire for answers about the ACA and frustration at lack of information were universal during our bike tour. Given the opportunities they have to interact with patients, medical students have an obligation to be politically informed, and their institutions should be held equally accountable to this task. Our patients seek, and deserve, answers that extend beyond their symptoms. We must be able to answer questions about the system in which we play a role.
The themes that emerged from our interviews have reinforced the importance of covering the ACA in the curriculum as apolitically as possible. Realizing that many students may be arriving in the classroom with their own biases and misconceptions has been particularly illuminating to us. In response to this we must devote more attention to a thoughtful discussion of the ACA with the intention of enabling students to form an opinion of the law based on facts.
We were not surprised by what we heard. Our interviews confirmed that there is significant dissatisfaction with the ACA and increased our understanding of this unhappiness: While superficially related to money (and access), it was supported by profound anger at the federal government, insurance companies, politicians, President Obama, and people who were deemed unworthy of insurance. This broad discontent suggests it is unlikely that minor changes in the ACA will be sufficient to change people’s views.
Two reasons for the Republican victories in the 2016 election were dissatisfaction and anger with the ACA and with the federal government. One of the promises of the Republican campaign was to repeal and replace the ACA. Now that the GOP controls the executive and legislative branches of government, it remains unclear how they will address this promise. The American Health Care Act has so far not received the support it would need to be passed by Congress, in part because it is projected to cause up to 24 million people to lose their insurance coverage over a 10-year period.20 After all, 20 million additional people have obtained insurance since 2014, and certain aspects of the ACA are very popular with U.S. voters. Unfortunately, our interviews demonstrated that many people do not understand the complexity of the legislation or the necessity of maintaining the unpopular parts (individual mandate) to fund the more popular parts.
Whether or not it is repealed or changed, the question remains: Will profound structural changes to the ACA allow it to be acceptable to a majority of people while also accomplishing its stated aim: providing insurance for all Americans at an affordable price? Can we learn from other high-income countries that have single-payer insurance plans, with improved health outcomes at lower proportional costs? Some have recommended adding a public option to the ACA, others have suggested moving to a publicly supported national health insurance, and still others promote scrapping the ACA altogether and returning to a pre-2010 status quo.21–23
The ACA will change. Review and revision seems far more likely than repeal. Whether it is repealed or revised, the ACA, like Medicare, is very complex legislation. Just as with Medicare, the ACA will require constant review with revisions where indicated. We see the future as an ongoing battle between the voters’ wishes for improved coverage and the challenge of funding them.
However, we seriously doubt that moving backward in time will, in any way, rectify problems of cost and access to health care. Yet, whatever other changes we might imagine occurring, it is clear from our study that people’s anger will need to be acknowledged. Many Americans feel left behind as the ACA has taken effect, and they are quick to lay blame at others’ doorsteps without knowing how to improve a complicated and complex problem. The challenge of recognizing, understanding, and addressing such anger will be an important consideration to deal with whatever direction the future of U.S. health care and its provision take.
Acknowledgments: The authors wish to acknowledge guidance provided by Drs. Lara Varpio and William Ventres.
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© 2017 by the Association of American Medical Colleges
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