How a Near-Death Travel Experience Changed my Perspective on Getting Sick

Image: My prescription and diagnosis from the hospital in Japan

For me, it was the moment I was told in Japanese that I had 24 hours to live.

After a day of progressively intense clinic visits for my hives and fever, the hospital translator turned to me and told me I may have Stevens-Johnson syndrome.

The five white-coated doctors solemnly opened their medical textbook and showed me images of a man covered head-to-toe in rashes, sticking out a yellowed, swollen tongue. (Don't Google it. The images are brutal.)

Prescription: I needed to board a plane home immediately or I might not reach US soil alive.

My first thought on hearing the news wasn’t about pain or the loss of years with my children or dying far from my family. My first thought was: “If I make it home alive, I hope this doesn’t cost much.”

That’s when I knew something was wrong with the American medical system.

Oh, there had been other moments along the way. There was the ACL surgery I had at sixteen, where the procedure and the physical therapy spanned a new year and a change in my dad’s insurance provider. For two months, I watched my knee atrophy, as the two companies battled on about who should pay for PT.

Or there was the moment, a month before my mother’s death in 2000, that she reached her “lifetime max” and insurance benefits dried up.

Or the moment my micro-preemie niece reached her max at nine months old.

Or the moment my insurance company told me that they wouldn’t cover my daughter’s labor and delivery because I didn’t call for pre-approval on the way to the hospital. Pain and contractions be damned.

Or the five years that my entrepreneur husband worked a part-time retail job simply for coverage.

For twenty hours of work per week, he netted only $50 after premiums...and we only used the insurance for well visits.

We were an actuary’s dream.

And yet, the one procedure we had (our three-year-old’s pre-cancerous mole removal) left us with a staggering $5,000 out-of-pocket bill.

But there was something about that life-or-death moment in Japan that made me realize something wasn’t right. The association between caring for my health and paying lots of money was so deeply embedded that in my (possibly) dying moments, the fear of deductibles and copays had become more important than family and friends.

I ended up making it back to the US alive. Being fairly certain it was adult-onset allergic

reaction to penicillin, I convinced them to let me stay in Japan for another 12 hours, and the symptoms subsided. The translator later told me the doctors gave me a worst-case diagnosis because they were afraid my insurance company would sue them otherwise. (Our reputation precedes us.)

The total cost of the entire day-long medical ordeal (plus antibiotics and hydrocortisone)? 11,890 yen. A mere $108. And I’m not even a Japanese citizen.

In the years since that day, a few things have changed. The 2010 Affordable Care Act outlawed lifetime caps (along with pre-existing conditions). My husband quit retail and we enrolled in Obamacare, paying premiums ourselves in exchange for not spending hours slinging computers at the mall. And last year, thanks to COVID shifting the income guidelines, we were on Medicaid for a hot minute. We have officially run the insurance Triple Crown.

As such, I have become somewhat of a sounding board for my international friends curious about how our system works. They will watch reruns of ER or Grey’s Anatomy and email me with questions: “What is your out-of-pocket? Which comes first: deductibles or copays? How do you know which hospital you’re allowed to go to? What happens if you don’t have your insurance card with you and you get in an accident?”

Image: Grey's Anatomy c/o Liliane Lathan/ABC

On a particularly memorable walk with my British friend, Vicky Marston, the subject came up several times. She had just become a mother, and she asked if we had to pay for our children’s care. I explained that well visits were covered but sick visits cost us about $40 after insurance. She paused, thoughtfully, and asked, “So you have to pay that even if you’re wrong and everything is OK?” I nodded. She continued:

“So, in the States, are there mothers who have to choose between getting something checked out and putting food on the table?” Nod.

We walked on, looping around the lake with our strollers, and she told me she and her husband had managed, after years of scrimping, to save 30,000£. Out of nowhere, she circled back to the topic of insurance: “I can’t imagine losing all of that in an instant because of a medical emergency. Doesn’t that happen sometimes in the States?”

Image: Picnicking and chatting with Vicky and her kids in Leeds, England

Medical bankruptcy freaks her out and she doesn’t even live here.

My friend Remi Uzan, a political scientist in Toulouse, France, has been fascinated/horrified by the concept of medical bankruptcy. In 2018, he wrote a paper about our system which began with the startling fact that “medical debt is the predominant causal factor in 18% to 26% of all consumer bankruptcies.” [1] Uzan admits that in the US, we have “technology at its finest,” but the price is steep, nearly twice that of the average OECD country. [2] In the US, he said, “health is a business.”

In France “the core principle is: you contribute according to your income, you benefit according to your neImagImage: Image:

Uzan’s father, Marc, is a retired physician in the public French healthcare system. When I asked him how his career as a doctor would have been different had he worked in the US, he said, “I definitely would not have been able to bring myself to work in the for-profit sector or make lots of money by not giving people equal care.”

Image: Visiting with my host parents Marc and Colette Uzan, both retired doctors in France

They see what I now see. There’s a problem. And it’s two-fold: both in process and in product.

In EJ Emanuel et al.’s 2020 article in The Journal of American Medicine, the authors compared health outcomes of white Americans in two of the US’s richest counties with those of the average citizens of six other countries. Even at its “best,” where racial and income disparities were not an issue, the US did not fare well:

The US healthcare system appears to underperform on nearly every metric.

The US spends more than $3.5 trillion per year on health care, 25% more per capita than the next highest-spending country. However, compared with other countries, the US performs poorly on process, outcome, and patient experience metrics, as well as life expectancy. [3]

And yet despite these poor showings, many Americans can’t see it.

We are largely happy with the status quo. According to a joint study by Harvard’s TH Chan School of Public Health and The Robert Wood Johnson Foundation, 79% of Americans are pleased with their care. Some 77% responded that the quality of their doctor’s visits was good or excellent, and it was even higher for overnight hospital stays. Even the costs for various services were largely deemed reasonable: doctors visits (77%), overnight hospitalization (65%), emergency room visits (58%). [4]

Emanuel and his fellow researchers noted the disparity between the two statistical trends, and their follow-up question was the same as mine:

“Why is the disconnect between the health care system’s performance and our personal perception of quality so pervasive?” [3]

If you look for an answer, a few thought patterns start to surface:

I Got Mine

Emanuel proposed that the disconnect lay in the concept of otherness, with wealthy

Americans assuming that their financial means assured them quality care and that only the faceless “other” is suffering under the system. [3] Even if that may be true, the “other” is getting to be rather large, requiring a concerted effort to ignore. One in four Americans reported that healthcare costs have caused serious problems, with payment plans (44%), exhausted savings (42%), and bill collectors (39%) being the most common among them. [4] The fact that many can ignore the troubles faced by this large swath of the population is perhaps more indicative of our divided class system than anything else.

It’s hard to feel bad for the poor if you never see them.

Historian Isabel Wilkerson in her 2020 book Caste contends that America’s caste system stands out as particularly egregious in world history, along with Nazi Germany and Brahmin India. She argues that each relied on stigmatization in order to “rationalize the protocols of enforcement.” [5]

The insurance industry has become, in essence, a de facto “protocol of enforcement,” requiring a state of denial by the healthcare elite in order to maintain its existence.

Wilkerson contends that we have a moral obligation not to dismiss or ignore these one in four disenfranchised Americans: “We don't get to tell a person with a broken leg or a bullet wound that they are not in pain...The price of privilege is the moral duty to act when one sees another person treated unfairly.” [5]

My British friend exemplified this type of altruistic thinking when she said, “I don’t begrudge at all paying quite a lot of my taxes so that people who are more vulnerable than me can have an NHS that is free at the point of service.”

Such comments in the US will get you branded as a “bleeding heart liberal.” [6] Certainly, there are Americans who see the moral issue. However, in a Gallup poll conducted during the 2010 lead-up to the passage of the ACA, only 45% supported the bill. Of those, only 19% cited helping the poor and senior citizens or a “moral imperative” as a reason for their support. [7]

And yet, even those who choose to ignore the less fortunate are affected by the care they receive. Emanuel and his team summed it up:

“A well-off US citizen cannot ‘buy out’ of the uneven quality of care provided by the US healthcare system. To ensure the world’s best health outcomes requires improving care systematically, for all people at all facilities.” [3]

Blinded by the Rights

Many Americans go beyond ignoring and actively oppose the coverage of these less fortunate among us. Of the 48% of Americans who were against the ACA [Affordable Care Act] in 2010, 6% agreed with the statement “Healthcare is a privilege, not a right.” [7] (The writers of the Universal Declaration of Human Rights might disagree with them, but that’s neither here nor there.)

Instead, what comes to the forefront in debates about universal healthcare is an entirely different right---the taxpayer’s right not to be required to buy insurance. In November 2020, my husband and I waited anxiously as the US Supreme Court heard opening arguments in the case California v. Texas. By arguing the fine line between a tax with no penalty and a mandate, the plaintiffs are seeking to outlaw the insurance requirement, prove its inseverability from the ACA, and scuttle the entire program. If the plaintiffs won, our lifestyle as entrepreneurs would drastically change.

And we aren’t the only ones. 23 million people have health coverage thanks to the ACA.

In looking at the Supreme Court case, I have to ask:

How does someone’s right not to have insurance trump our right to have insurance?

Political philosopher Joseph Raz says there is danger in “calling anything of value a right” and that this danger “exemplifies the vice of spuriously arguing for a moral or political view by surreptitious verbal legislation.” [8] As a nation of freedom and liberty, we are especially susceptible to this overarching definition of “rights” and judges have full caseloads to prove it.

Grand Piano Syndrome

Another reason we may be comfortable with our broken system is what I think of as

“Grand Piano Syndrome.” When I had my first child in 2006 at a public hospital in Indianapolis, the facilities were more than acceptable: private room, working bed, room service, and 24-hour personalized care. By the time I had my third child in 2011, that hospital’s sister location had been remodeled and now featured valet parking, a glass atrium, en suite guest beds, and a grand piano in the lobby. I chose the nicer hospital because, why not? Both were in network. It cost me the same since I was meeting my deductible anyway, right?

On one visit to the States, I took Vicky to that same hospital to visit my sister-in-law in the maternity ward. She was impressed. She commented that the room was “spacious” and very different from what she would expect to see in the UK. She explained that a woman awaiting a C-section would likely be in a room with “seven other women, some of them in the throes of labor,” not in a private room.

Years later, I asked her about that day, and her impression of the US hospital had changed: “You have a better overall standard of care in some senses because you’re paying for it, so perhaps every single thing would be ticked….But with you having to pay for it, that impacts my perception of your quality of care. I’m so proud of the fact that what we get in the UK is quality...and it’s free.”

With US hospitals competing for business, the facility standards are inching higher and higher.

We are painting ourselves into a very opulent healthcare corner.

And then, inanely, we are surprised when we see the bill that's sent to the insurance company.

Was the hospital in Tokyo beautiful? No, it was functional. In the first of my Japanese clinic visits, only a blue plastic drape separated me from three other patients describing their symptoms and getting their vitals taken. There was no private room or HIPAA confidentiality form.

The facility did what it was made to do. It provided a safe location for triage

and diagnosis. Period.

By asking for more than that, we create a system that is unfit for mass consumption. And yet, even for myself, once I got used to the idea that grand pianos belonged in hospitals, it was hard not to expect one.

Knowing that a more equitable system might diminish the opulence of care (not to be confused with the “quality of care”), we may subconsciously opt for the status quo.

The Fear of the Unknown

Other Americans likely oppose change in our system out of fear of the unknown or “xenophobia.” This may be, as psychologist Nicolas Carleton contends, “the fundamental fear.” [9] However, in the case of the healthcare bill, the fear has been transformed into a political weapon. Early in the development of the ACA, rhetoric began to surface about what the bill would entail.

Since the ACA itself was several hundred pages long, politicians could be reasonably assured that the general public wouldn’t read it. This opened a window and a very successful disinformation campaign was launched. As part of this campaign, Sarah Palin famously won PolitiFact’s 2009 Lie of the Year with these dystopian words:

“The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama's ‘death panel' so his bureaucrats can decide, based on a subjective judgment of their ‘level of productivity in society,' whether they are worthy of health care. Such a system is downright evil.” [13]

And a seed of fear was planted.

Xenophobia’s more commonly known manifestation, the fear of foreigners, is also at play in the healthcare debate. In 2019, only 13% of Americans traveled internationally, [10] and many of those only traveled to resorts built to cater to US travelers.

Our fear of international travel limits our interactions with outsiders who might be able to give us a broader perspective on various issues and tell us what works (or doesn’t) in their countries.

True, there are economic factors that keep many from traveling abroad. But, for those who can, having those experiences could turn the tide on many issues, including the healthcare debate. As Mark Twain once said:

“Travel is fatal to prejudice, bigotry, and narrow-mindedness, and many of our people need it sorely on these accounts. Broad, wholesome, charitable views of men and things cannot be acquired by vegetating in one little corner of the earth all one's lifetime.” [11]

Image: Me and my host family as I was leaving Japan

Recent psychological studies out of Northwestern University confirm that travel does, in fact, broaden the mind. [12]

Certainly, no amount of travel will lead us to the perfect system. My own travels have made that clear. But we have to start seeing our systems as fully as outsiders do, acknowledging its imperfections even if we aren’t currently suffering under them.

We all have reasons to ignore the ways the system fails us. If nothing else, it’s easier to.

But it’s time to take off our jingoistic healthcare goggles and admit we’ve been kissing a frog.

For more on the benefits of travel, see "Why Bother Traveling Internationally with Kids?"

Inspired to Travel? See our post "I Want to Travel. Now How do I Find Money for It?"

References

1. Austin, Daniel A., Medical Debt as a Cause of Consumer Bankruptcy (2014). Maine Law Review, Volume 67, No. 1, pp. 1 - 23 (2014), Northeastern University School of Law Research Paper No. 204-2014, https://ssrn.com/abstract=2515321 Accessed 2 May 2021.

2. “US. Health Care from a Global Perspective, 2019: Higher Spending, Worse Outcomes?”

3. Emanuel EJ, Gudbranson E, Van Parys J, Gørtz M, Helgeland J, Skinner J. Comparing Health Outcomes of Privileged US Citizens With Those of Average Residents of Other Developed Countries. JAMA Intern Med. 2021;181(3):339–344. doi:10.1001/jamainternmed.2020.7484. Accessed 2 May 2021.

4. “Patient Perspectives on Healthcare in the United States: A Look at Seven States and the Nation.” Robert Wood Johnson Foundation et al. Feb. 2016. https://cdn1.sph.harvard.edu/wp-content/ uploads/sites/21/2016/02/Patients-Perspectives-on-Health-Care-in-the-United-States-National-Report-with-topline-Feb2016.pdf. Accessed 2 May 2021.

5. Wilkerson, Isabel. Caste. Allen Lane, 2020.

6. Melber, Ari. “Why 62 Million Bleeding Heart Liberals Back Health Care Reform.” HuffPost, HuffPost, 7 Dec. 2017, www.huffpost.com/entry/why-62-million-bleeding-h_b_500275.

7. Jones, Jeffrey M. “In U.S., 45% Favor, 48% Oppose Obama Healthcare Plan.” Gallup.com, Gallup, 3 Apr. 2021, news.gallup.com/poll/126521/Favor-Oppose-Obama-Healthcare-Plan.aspx. Accessed 2 May 2021.

8. Raz, J. “On the Nature of Rights.” Mind, vol. 93, no. 370, 1984, pp. 194–214. JSTOR, www.jstor.org/stable/2254002. Accessed 3 May 2021.

9. Carleton, R. N. (2016). Fear of the unknown: One fear to rule them all? Journal of Anxiety Disorders, 41, 5–21. https://doi.org/10.1016/j.janxdis.2016.03.011 Accessed 3 May 2021.

10. “Travel: Overseas Tourism US 2019.” Statista, 16 Mar. 2021, www.statista.com/statistics/214774/number-of-outbound-tourists-from-the-us/#:~:text=In%202019%2C%20there%20were%20approximately,of%2041.77%20million%20overseas%20travelers.

11. Twain, Mark. The Innocents Abroad [by] Mark Twain. London: Collins Clear-type Press, 1869.

12. Cao, Jiyin, et al. “Does Travel Broaden the Mind? Breadth of Foreign Experiences Increases Generalized Trust.” Social Psychological and Personality Science, vol. 5, no. 5, July 2014, pp. 517–525, doi:10.1177/1948550613514456. Accessed 5 May 2021.

13. Holan, Angie Drobnic. “PolitiFact's Lie of the Year: 'Death Panels'.” Politifact, 18 Dec. 2009, www.politifact.com/article/2009/dec/18/politifact-lie-year-death-panels/. Accessed 2 May 2021

14. “Universal Declaration of Human Rights.” United Nations, United Nations, www.un.org/en/about-us/universal-declaration-of-human-rights. Accessed 3 May 2021.