Nowadays I tend to avoid reading illness narratives – by this time in my life they all start to sound alike. On April 28th, though, I was blown away by college professor Anne Boyer’s description of her experience with breast cancer, “What Cancer Takes Away,” in the April 15th issue of the New Yorker that had arrived that day in the mail. I thought it was the best of its kind, ever, and very disturbing for reasons beyond the medical story per se. Boyer kept teaching throughout her treatment, fighting debilitation and mental fog, and despite her earnings she ran through both her savings and her medical leave. “My friends carry my books into the classroom, because I can’t use my arms,” she writes. “Delirious from pain, I give a three-hour lecture on Walt Whitman’s poem ‘The Sleepers’—'wandering and confused, lost to myself, ill-assorted, contradictory’—with the drainage bags stitched to my tightly compressed chest.”
I fired off an heartfelt letter to the editor, but due to the transatlantic snail mail time lag before I’d seen the magazine issue, my letter arrived too late to be considered for publication. So I’m posting the letter here as a consolation prize to myself:
To the Editor,
I found Anne Boyer’s description of her experience with breast cancer (“What cancer takes away,” April 15th issue) profoundly moving. She evokes vividly, astutely, with excruciating poetry, the pain, mental haze, degradation, despair, and hope that I have seen so many patients and friends endure in the course of pitiless cancer treatments that end, according to the throw of the dice, in cure or death. Hopefully Boyer has by now left her old “patient” skin far behind and is enjoying a gleaming new one.
But after forty years practicing medicine in Italy I find the social complications she encountered so foreign as to be nearly incomprensible. Suffering is inherent in cancer and its treatment. Premature return to work, and financial strain, are on the contrary utterly unnecessary sources of further misery and humiliation. Due to their union contracts, all Italian workers have at least three months’ sick leave, and most have six or more. The jobs of university professors are held for at least 18 months of illness, the first twelve paid at full salary. And because of their National Health Service, surgery, radiotherapy, chemotherapy, doctors’ visits, hospital stays, and medications involve no out-of-pocket expense.
May the United States one day be so civilized.
Susan Levenstein, MD
Rome, Italy
addendum on June 15th: A sharp-eyed reader has pointed out that my letter failed to mention the expanding gig economy and other such developments, which have deprived many Italian workers, especially young people, of paid sick leave. But - I looked it up - about 83% of the Italian workforce still have those permanent, super-good contracts, and a good portion of the others do at least have the right to have their jobs held for them up to a month if they’re sick. Of course, with all care for serious medical conditions being totally free at the point of care the economic impact of illness is in any case much less than it is for Americans.
addendum on June 15th: A sharp-eyed reader has pointed out that my letter failed to mention the expanding gig economy and other such developments, which have deprived many Italian workers, especially young people, of paid sick leave. But - I looked it up - about 83% of the Italian workforce still have those permanent, super-good contracts, and a good portion of the others do at least have the right to have their jobs held for them up to a month if they’re sick. Of course, with all care for serious medical conditions being totally free at the point of care the economic impact of illness is in any case much less than it is for Americans.
Having lived in Western Europe for a long time, the cost of the American medical system, in absolute terms, and to its patients, in personal terms, is outrageous. You can also see the cultural connection between the costs and lack of provision for the ill in other ways, like the ridiculously short sick leave people have. Please excuse the generalization, but I find the U.S. to be a rather hard country, in many respects.
ReplyDeleteWhat you wrote is very astute. Sink or swim, that's the American motto (or perhaps model). Think rugged individualism, think the frontier spirit, think pull yourself up by your bootstraps, and you wind up with "small government" excuses for abandoning the population.
DeleteThis is very timely. An article in the July issue of the Atlantic, "The Worst Patients in the World," pins part of the blame on Americans' social values and structures, expectations and beliefs--authors of their own misfortunes.
ReplyDeletehttps://www.theatlantic.com/magazine/archive/2019/07/american-health-care-spending/590623/
I was struck especially by one observation: Americans treat death as "optional" while almost everyone else accepts its inevitability.
Yes, I saw that article posted at a narrative medicine Facebook group I belong to. I found it very interesting but in the end barking up the wrong tree. As you hint, Americans think they deserve perfect health -somewhere in my book I do devote a few lines to that! Here's what I wrote on Facebook: Putting difficult patients aside - a difficult task for me and other practicing physicians! - the reason the USA spends so much on health care has been amply demonstrated to be overwhelmingly because of high prices, not overutilization. For example check out https://www.jhsph.edu/news/news-releases/2019/us-health-care-spending-highest-among-developed-countries.html
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