Did you know that we can take charge of our health? I myself had not realized this. I had thought that health was a force that mostly percolated along on its own, trickling like a stream through the woods of life and emptying, someday, into the sea of death. I had thought that the joys of health—strength, sensuality, sports—naturally kept us rolling along; if not, we met with rocky pangs of dissipation.
That was primitive of me. The river of our being does not glide at its own will. We govern its flow, in two ways.
First, we can maximize our health. This effort, called a “health journey,” may start with a visit to a health-service website. Mine offers “all the resources you need to lead an informed and healthy life.” Such resources cost you nothing and come from venerable institutions such as the Mayo Clinic and Harvard Medical School.
Their researchers can tell us how fast to walk, when to sit or stand, when to dwell in the light and when in the darkness, what technology to use in order to breathe while we’re asleep, how to cope with toxins that others can inject in us without even touching us, and how to set aside time for kindness, forgiveness, spirituality, and gratitude, which have proven health benefits and are therefore worthwhile.
I had thought it was foolish, as Horace says, to “attempt Babylonian calculations” and try to game what one cannot control, that it was nobler to face “whatever will be” and to “seize each day.” To maximize our health, however, we have to be mindful of every mouthful, each minute of sloth and jolt of stress. It’s not enough to go to bed at bedtime; the number of hours of “restorative sleep” is what makes or breaks us.
But how can we track our progress on so many fronts? Didn’t Mrs. Centipede stumble when asked how she walked with all her legs?
Experts have tackled this problem too. “With more people using smartwatches to measure their steps and overall health, we saw the importance of ascertaining how step-based measurements compare to time-based targets in their association with health outcomes—is one better than the other?” researchers at Harvard wondered.11xKira Sampson, “Everything Counts!” The Harvard Gazette, May 20, 2024; https://www.news.harvard.edu/gazette/story/2024/05/should-we-measure-exercise-in-minutes-or-steps/. By persuading old women to wear devices, they discovered that old women who move around are likely to outlive those who are immobile. This was true no matter how their movements were monitored. “Everything counts!” the hierophants concluded; “step-count and time are equally valid in reducing health risks.”
So once you’re equipped with information, your next stop is the app store on your phone. There’s an app for every landmark on your journey. Just accept the terms, download, and follow the prompts. And stay alert to the health news filling your inbox. It is on you to journey safely, and older advice can lead you straight off a cliff.
For example, I read in a medical advice book belonging to my mother that pregnant women might find “a glass of wine a pleasant persuasion to relax.” Under questioning, Mom confessed to having sipped wine and puffed cigarettes while I was in her womb, not least while on a prolonged voyage necessitated by military movements after a war.
I have forgiven her. The recommendations were different then, and forgiveness is beneficial.
And I can’t help but wonder, just a little, whether her limited sense of responsibility might have had its own health benefits.
Her exercise, even the menial work, had more to do with glory than compliance with standards. Days before giving up the ghost from pancreatic cancer, doped to the gills and jaundiced as could be, she did graceful ports de bras with her descendants at our family’s homemade online dance class, to Handel’s “Lascia la spina, cogli la rosa”: “Leave the thorn, take the rose.” She then lay down and died of a miserable disease, but never lost her chieftainly spirit.
It’s primitive, but I can’t help but wonder if gratitude toward those who give us life might override many performance criteria. I haven’t seen data on filial love, though. Without randomized controlled trials, we can’t know if any part of culture is a worthwhile investment for ourselves.
Efficacy can be achieved only by huffing down measured paths with a device, to record your achievement for AI and the putative admiration of peers, doctors, insurance actuaries, and your own compulsion. There is nothing proven about the benefits of rising up, formidable and poetic, and letting your gnarled hands blossom like roses in the awed eyes of adoring young people whom you love and want to thrive when you are gone.
Speaking of algorithms and insurance, the second way we steer the course of our health is by managing any medical treatment we may need, as active, engaged consumers.
“Manage your health care, anytime, anywhere!” says my health service’s on-hold recording.
Your “health care journey” begins with a visit to a primary care provider. This may be a doctor or, increasingly, a “physician extender.” “Physician extender” is an industry term similar in concept to Hamburger Helper—a wholesome additive, like grain in ground beef, to eke out medical knowledge so it will go around.
At this first visit, through a series of guided questions, your provider will gain insight into you, your values, and your life path. Thereafter, if you get, say, pancreatic cancer, the two of you can fashion a treatment plan to suit your preferences.
This should be a joint venture, “a true partnership with shared decision-making authority and responsibility for outcomes,” the Mayo Clinic writes. Of course, as boss of your own body, you are senior partner. So long as you can nod or blink, you are chief executive. It may seem daunting, but we’ve got to be good managers, if not for ourselves then for our country.
The federal government’s Patients’ Bill of Rights explains that when patients “work collaboratively” to develop their treatment plans and “take an active role in improving and assuring their health”—and don’t we all want to “assure” our health?—it not only benefits our small selves but the integrity of our whole communal health-care project:
In a health care system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume reasonable responsibilities. Greater individual involvement by consumers in their care increases the likelihood of achieving the best outcomes and helps support a quality improvement, cost-conscious environment.22xU.S. Office of Personnel Management, “What Is the Patients’ Bill of Rights?” accessed July 25, 2024; https://www.opm.gov/healthcare-insurance/healthcare/reference-materials/bill-of-rights/.
By picking and choosing treatments wisely, we help the best offerings on our free health-care market to win out in competition, thus improving the system for each and every US resident. Your choice of whether or not to let doctors set your broken femur serves your country.
Don’t worry about your competence. It’s OK if your background does not include undergraduate science, statistics, and calculus, plus medical-school anatomy, histology, genetics, biochemistry, molecular and cellular biology, immunology, pharmacology, social science, epidemiology, medical ethics, internships, and a residency. It’s OK if your clinical experience is limited to kids with the flu. You just need to understand your problem and the best way to fix it. Simple.
Don’t worry, either, about being clear-minded. It’s true that codes of medical ethics advise doctors not to treat their own or their loved ones’ major medical problems lest their emotions distort their judgment. In his essay on patient autonomy, “Whose Body Is It, Anyway?”, Atul Gawande describes the need he felt, even as a physician, to turn major decisions over to the doctors on shift when his newborn daughter was in mortal danger.33xAtul Gawande, “Whose Body Is It, Anyway?,” The New Yorker (October 4, 1999), 84–91. A Dutch study of decision-making in obstetrics revealed that women found it “very, very difficult” to call the shots in childbirth: They were suffering, hadn’t slept or eaten, and had no way of knowing what would happen.44xLaxsini Murugesu et al., “Women’s Participation in Decision-Making in Maternity Care: A Qualitative Exploration of Clients’ Health Literacy Skills and Needs for Support,” International Journal of Environmental Research and Public Health 18, no. 3, 1130 (2021): Tables 3 and 4; https://doi.org/10.3390/ijerph18031130.
Still, patients can make “well-considered decisions,” the American Medical Association (AMA) assures us. The patient, “adequately informed...freely chooses specific treatments or non-treatment,” the American College of Obstetricians and Gynecologists (ACOG) agrees.
How did we become so godly? For “reasons that include technological and economic progress, improved educational and socioeconomic status of the populace, globalization, and societal movement towards emphasis on the patient as an individual,”55xBasil Varkey, “Principles of Clinical Ethics and Their Application to Practice,” Medical Principles and Practice 30, no. 1 (2021): “Autonomy” section, paragraph 4; https://karger.com/mpp/article/30/1/17/204816/Principles-of-Clinical-Ethics-and-Their. we have ditched the stodgy notion that doctors make treatment decisions and patients either accept them or crawl off to die. Thanks to progress in society at large, we can all develop “critical health literacy” and govern the course of our care.
Don’t let yourself stay sick, then. If you do, it’s your own fault, and costly for everyone.
Our nation has made its own health journey, to the wilderness we inhabit today.
In her masterful history Remaking the American Patient: How Madison Avenue and Modern Medicine Turned Patients into Consumers, Nancy Tomes traces consumerism in medicine from frontier medicine shows to our world of managed care. This is a history of conflict. Patients have struggled to secure sound, humane care in the face of prejudice, baffling technologies, bamboozling salesmen, Taylorized birthing wards, mushrooming corporations, and crushing costs. Yet the conflicts have played out within shared beliefs. “The worship of modern science meshed nicely with the ‘cult of the new’ so central to modern consumer culture,” Tomes writes, of the early twentieth century. “A strong synergism” formed between the two, creating “a constant churning of news, information, and advertising.”66xNancy Tomes, Remaking the American Patient: How Madison Avenue and Modern Medicine Turned Patients into Consumers (Chapel Hill, NC: University of North Carolina Press, 2016), 45, 10, 46.
Racing to catch hold of the boons of progress, we trust in our power to secure our lives, singly and together, through “smart” decisions. No wonder: Most of us depend on commerce and human-made systems for the necessities of life. In product-filled homes, on paved streets, everything seems to depend on us. Our daily lives foster a high anthropology, whereby we expect, as it were, the world of ourselves. Even damage from wildfires or hurricane winds is now often blamed, with some fraction of justice, on poor preparation or management; climate change itself is often cast as a political problem. Daily experience suggests that if only we made rational choices, we could be captains not only of our souls but of our fates.
The belief that the human creature lives and dies by conscious choice and management has mingled confusingly with democratic ideals, so that actress-activist Amber Tamblyn can write, “One of America’s most sacred values is the privilege of having choices; whether selecting political candidates, educators, or physicians, we are given options to inform our decision-making.” It is a right to have options, and a duty to choose.
Ironically, to lose our grip on the vast, fundamental extent to which we have no choice also means losing our grip on the magnitude of our own conflicts: We underestimate the orneriness of our own animality. The cosmos of the given includes our inborn drives and moods. Simone Weil wrote, of technological progress, “instead of being harried by nature, man is henceforth harried by man.”
In the early 1970s, believing that knowledge was power, activists and sympathetic experts wrote a fresh generation of medical guidebooks, such as that bible of women’s self-advocacy, Our Bodies, Ourselves. In 1973, scrappy consumers persuaded the American Hospital Association to adopt a weakened version of their proposed Patient’s Bill of Rights. Eleven of the bill’s original fifteen clauses specified rights to information.77xIbid., 270–274. The original 1973 version of the Patient’s Bill of Rights is available from Open Resources for Nursing (Open RN); https://wtcs.pressbooks.pub/nursingfundamentals/chapter/3-3-patients-bill-of-rights/.
In short order, these grassroots efforts to arm patients with information were swamped by a flood of health-care information from more powerful parties with divergent motives.
In 1976, Congress passed the National Consumer Health Information and Health Promotion Act, aimed at increasing “the application and use of health knowledge, skills, and practices by the general population in its patterns of daily living.” Along with public health goals like reducing lead poisoning, the act as introduced proposed to educate people to “moderate self-imposed risks” such as smoking and drinking.
Amid the simultaneous rise of Medicare costs and neoliberal conservatism, it seemed to some that if information liberated the patient, it was time to hold that free agent to account. In 1977, John H. Knowles, former director of Massachusetts General Hospital, wrote that “the idea of a ‘right’ to health should be replaced by the idea of an individual moral obligation to preserve one’s own health—a public duty if you will.”88xJohn H. Knowles, “The Responsibility of the Individual” (1977), quoted in Tomes, Remaking, 319. Cost-cutting concerns and moral indignance began to overshadow the grassroots concern for patient autonomy.
It was also in the neoliberal resurgence of the late 1970s that government economists began to apply to medicine the principle that free competition improved “all elements of a bargain—quality, service, safety, and durability.”99xNational Society of Professional Engineers v. United States (1978), quoted in Kelly Signs, “FTC Milestone: A New Age Dawns for the FTC’s Competition Work,” Federal Trade Commission, February 20, 2015; https://www.ftc.gov/enforcement/competition-matters/2015/02/ftc-milestone-new-age-dawns-ftcs-competition-work. In a series of lawsuits conceived as trust-busting efforts, patients and clients were recast as consumers, able to train the “invisible hand of the market” in the professions as well as in consumer goods: Informed patients did quality control.1010xSee Signs, “FTC Milestone” for a summary of this legal struggle from 1975 to 1982. The lawsuits were Goldfarb v. Virginia State Bar, 421 U.S. 773 (1975); National Society of Professional Engineers v. United States, 435 U.S. 679 (1978); Arizona v. Maricopa County Medical Society, 457 U.S. 332 (1982); and American Medical Association v. Federal Trade Commission, 455 U.S. 676 (1982).
In the name of transparency and free competition, the Federal Trade Commission (FTC) struck down the American Medical Association’s ethical ban on advertising and unleashed the flood of medical infomercials we flounder in today. The FTC has stood by this deed. In 2004, citing economist George Stigler’s quip that advertising is “an immensely powerful instrument for the elimination of ignorance,” FTC authors claimed,
Studies by the FTC’s Bureau of Economics have confirmed that advertising provides a powerful tool to communicate information about health and wellness to consumers—and the information can change people’s behavior. Thus, good information is a necessary building block both for consumer empowerment and enhanced health.1111xFederal Trade Commission and the Department of Justice, Executive Summary, “Improving Health Care: A Dose of Competition” (July 2004): 20; https://www.ftc.gov/sites/default/files/documents/reports/improving-health-care-dose-competition-report-federal-trade-commission-and-department-justice/040723healthcarerpt.pdf.
Actually, Stigler’s bon mot is from a 1961 study on classified ads in newspapers. Stigler took care to point out that his research did not address “advertising in general” or the “search for knowledge on the quality of goods.”1212xGeorge J. Stigler, “The Economics of Information,” The Journal of Political Economy 69, no. 3 (June 1961): 222, 224. Common sense might question the benefit of selling morbid anxiety, or recall that advertising slants the truth, or note that physicians don’t write the ads, or even ask whether high-tech ads using psychological techniques and algorithms as well as Madison Avenue’s best artistry leave the consumer with a free mind to think with.
Common sense, however, stands agape in the face of an Orwellian torquing of language that makes incentives that are directly at odds—cost cutting versus advertising’s goal to promote consumption, for example—appear to align. When Harvard Women’s Health Watch asks, “Is it time for a knee replacement?” drumming up business is the last thing on its mind. The flood of health information has nothing to do with the specialty-procedure centers and docs in a box popping up like toadstools after a rain, or with doctors rushing between patients, or with the specter of medical debt. The pressure to “take charge” of our health has nothing to do with venture capital. Health information empowers us, strengthens our health-care “system,” and saves our government from default. If there’s profit in that, then that’s just the last win in a win-win-win-win situation!
When it comes to flabbergasting common sense, the current, enhanced “doctrine of medical informed consent” takes the cake. Sadly, this doctrine is proposed as the new “foundation of the fiduciary relationship between a patient and a physician.”1313xTimothy J. Paterick et al., “Medical Informed Consent: General Considerations for Physicians,” Mayo Clinic Proceedings 83, no. 3 (2008): 313; https://www.mayoclinicproceedings.org/article/S0025-6196(1160864-1/pdf.
The doctrine of consent started out simply, with two triumphs for patient rights. First, we managed, as a society, to agree that able adults, even women, had a right to refuse treatment. In Schloendorff v. Society of New York Hospital (1914), the plaintiff had adamantly and clearly—she was an elocutionist—refused surgery for a fibroid tumor. Doctors persuaded her to undergo an exam under anesthesia, and did the surgery anyway. She developed gangrene and sued. In a much-quoted opinion, Justice Benjamin Cardozo wrote, “Every human being of adult years and sound mind has a right to determine what shall be done with his own body.”1414xSchloendorff v. Society of New York Hospital, 211 N.Y. 125, 129–30, 105 N.E. 92, 93 (1914) at par. 4; https://biotech.law.lsu.edu/cases/consent/schoendorff.htm.
Second, we agreed that in order for this right to self-determination to have meaning, doctors had to tell patients what they were consenting to. The 1972 malpractice case Canterbury v. Spence ruled that because patients’ “dependence upon the physician for information” was “well-nigh abject,” doctors needed to tell patients about the risks of treatment.1515xJerry W. Canterbury, Appellant, v. William Thornton Spence and the Washington Hospital Center, a Body Corporate, Appellees, 464 F.2d 772 (D.C. Cir. 1963, July 20, 1972) at art. III, par. 5; https://law.justia.com/cases/federal/appellate-courts/F2/464/772/38141/.
How much did doctors need to say? The court left that to common sense. Its “guiding consideration” was that “medical facts are for medical experts and other facts are for any witnesses.”1616xCanterbury, art. VIII, par. 4. Whether someone knew enough to willingly consent was something non-experts could judge. Consent hinged on universal human concerns—pain, cost, danger, trust.
In a note appended to the opinion, Judge Spottswood Robinson cautioned against even using the term “informed consent.” It tended “to imply that what is decisive is the degree of the patient’s comprehension.”1717xCanterbury, n. 15. Doctors alone understood the medical details. But doctors and laypersons alike understood what “reasonable” people needed to know. As autonomous adults, they had an equal understanding of humanity.
Not anymore. Now “the degree of the patient’s comprehension” is not only “decisive” but a condition of full autonomy. Doctors confer autonomy on the patient by sharing their specialized knowledge. That’s how the “equal partnership” happens: “Physicians must give patients equality in the covenant by educating them to make informed choices,” the Mayo Clinic writes.1818xPaterick et al., “Medical Informed Consent,” 313.
It sounds like empowerment. It may sound like social justice. But a terrible elision has occurred. To say that autonomy must be conveyed denies the autonomy that the patient walks in the door with, as a blood-and-guts creature with a reasonable mind. Instead, it offers a learning capacity with no body attached. The doctor ritually transforms the patient into a “partner,” a co-expert with equal agency, who can “freely” take or leave treatment. This disembodied patient has no need for treatment—that’s elective—and thus no vulnerability that might result, given poor care, in a malpractice complaint.
It’s like turning wine into water!
Indeed the Mayo Clinic’s high words on faith and justice fray as the authors go on to clarify, “The purpose of medical consent...is to have evidence of the exact terms of the medical consent in case of future disagreement”:
If the medical consent form or documentation of the discussion in the medical record is comprehensive and specific in terms of risks and benefits, and if the medical consent was granted voluntarily by a competent patient who understood the information presented, the probability of a successful lawsuit is low.1919xIbid., 316.
The AMA Journal of Ethics concurs, “To avoid legal action, according to the doctrine of informed consent, physicians must disclose enough information for the patient to make an ‘informed’ decision.”2020xBryan Murray, “Informed Consent: What Must a Physician Disclose to a Patient?” AMA Journal of Ethics Virtual Mentor 14 (July 2012): sec. “Informed Consent,” par. 2; https://journalofethics.ama-assn.org/article/informed-consent-what-must-physician-disclose-patient/2012-07. Doctors transfer liability along with their expertise. The Mayo Clinic authors note, with regret, “Responsibility for medical care has landed on the shoulders of patients with a resounding thud.”2121xPaterick et al., “Medical Informed Consent,” 318.
Of course consent involves indemnification. As philosopher Onora O’Neill put it in a 2007 Philosophy Bites podcast, “If I want my appendix out, I want the person who takes it out not to be taken before the courts for assault because he makes a small hole in me.”
Yet we do not consent to how the hole gets made, with what, under what anesthesia, or how well sterile technique gets followed. At no point is the patient responsible, legally or morally, for what only medical staff can do.
Consent cannot involve concurring on medical judgment, either. Onora O’Neill went on to comment, in 2007, “If you jack up the standards [for consent] to excessive heights, then of course all of us are going to count as non-competent.” Indeed, if informed consent means an objective analysis of complex probabilities when the dice are rolling on your own life, then, according to doctors’ own ethical codes, not even they are competent.
Far-fetched as it is to assert that doctors and patients have equal authority in deciding on treatments, the notion of “shared decision-making” has become so dominant that the International Federation of Gynecology and Obstetrics feels compelled to reassure its membership that it is OK to express their medical judgment: “Making ethically justified recommendations is not disrespectful of patient autonomy.”2222xFrank A. Chervenak and Laurence B. McCullough, eds., International Federation of Gynecology and Obstetrics, FIGO Ethics and Professionalism Guidelines for Obstetrics and Gynecology (London, UK: FIGO House, 2021), 11; https://www.figo.org/sites/default/files/2021-11/FIGO-Ethics-Guidelines-onlinePDF.pdf.
If patients freely make their own decisions, how can they justify them? They don’t really have expertise. The compulsions of illness and of following expert advice have been ritually, legally denied. No reason is left but personal or cultural inclination.
Indeed, patients’ expressions of “value-based preferences” are encouraged in this “patient-centered, individualized” ritual.2323xACOG Committee Opinion 819, “Informed Consent and Shared Decision Making in Obstetrics and Gynecology,” February 2021; https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2021/02/informed-consent-and-shared-decision-making-in-obstetrics-and-gynecology. Yet where agency is seen as “nothing but the pursuit of preference,” Onora O’Neill writes, then it is hard to explain “how some acts can be more central than others to the self, freedom, identity, or integrity of an agent.”2424xOnora O’Neill, Bounds of Justice (Cambridge, UK: Cambridge University Press, 2000), 34, 38–39.
The act of consent says, I entrust my body to your care. The basis of that trust is the pledge that doctors take to dedicate their lives to the service of humanity. Consent would be impossible without that pledge. It, not any legality, is “the foundation of the fiduciary relationship” between patients and doctors. The consent form says, I acknowledge that the proposed treatment proceeds in that trust.
If informed consent replaces trust, we will all be lost on our health journeys.
We have found seven incentives to take charge of our health: empowerment, moral improvement, humanitarian public health efforts, cost cutting, quality control, indemnifying our doctors, and growing our economy by profiting investors. That’s a win-win-win-win-win-win-win situation! Too bad we pay twice as much for care than other high-income countries while seeing the doctor less, being sick more, and dying sooner.
Is that because enjoying good health, for its own sake, is not on the list of incentives?
To pretend that all parties in health care—patients, doctors, institutions, drug makers, supply manufacturers, private equity—have aligned or even identical incentives denies that man is harried by man. Especially in the global economy, to deny that man is harried by man is also to deny the human condition. Sadly, it also denies our good motivations, such as the kindness, resolve, and mutual trust that underlie medical art and science.
The truth is, of course, that freedom of decision is sparse in health and health care. As Tomes puts it, “there are no medical consumerists in emergency rooms.”2525xTomes, Remaking, 14. Few of us freely choose health services, or doctors, and, despite the ease suggested by recent advertising for online “virtual health care,” laypersons cannot order medical treatment. Where choices of treatments exist, they are limited by cost, locale, and the doctor’s habit.
In short, the “generally powerful arguments for the social benefits of free markets do not apply to health care,” economists Angus Deaton and Anne Case write.2626xAnne Case and Angus Deaton, Deaths of Despair and the Future of Capitalism (Princeton, NJ: Princeton University Press, 2020), 248. Freedom runs aground on the human condition. Even Friedrich Hayek accepted that there are certain “common hazards of life against which few can make adequate provision.”
Which brings us back to Horace.
The idea that one can and should secure one’s health by following risk metrics reflects “a touching faith in the redeemability of human cognition,” sociologist Judith Green has said. Her colleague Peter Taylor-Gooby doesn’t find the faith so touching: It assumes we’re all in “a business-class seat in the Boeing Dreamliner, looking down at the world below.”2727xBob Heyman and Patrick Brown, “Perspectives on the ‘Lens of Risk’ Interview Series: Interviews with Judith Green and Peter Taylor-Gooby,” Health, Risk & Society 15, no. 1 (2013): 22, 18.
As neuroscientist Antonio Damasio begs us to remember in The Strange Order of Things, “Nervous systems evolved as servants to the rest of the organism...not the other way around.” Tugging at our rational calculations are “the nature-given rules of life regulation, the strings of which are pulled by the invisible hands of pain and pleasure.” We “had nothing to do with the making of those rules...and cannot modify them.”
Autonomy involves the maturity to face the human condition—that we err, conflict, and will get sick and die, even if we get in ten thousand steps a day.
Just as we brave the thorns for the rose, we endure life’s pain for love. Horace urged his friend to seize the day so that the two of them could revel in it together.