The option to kill always punishes the most vulnerable. Those who are wealthy and currently fly to a jurisdiction where the killing is legal will find options for themselves, while laws that prevent killing are there to protect those who would otherwise want to live if not for the system that tells them they are or would be a burden. Laws that allow killing entrench and reinforce a culture that values the intelligent and able-bodied while making the disabled and infirm disappear.
Those who have struggled with severe depression will tell you that one of the worst thoughts to haunt their minds is the one that says they would have been better off having never been born. When I treat patients with depression, it is my duty as their doctor to assure them, no matter what they may have done (and some of them have done very bad things), that the demonic voice in their head is not speaking the truth. They, like every other human being, are better off alive than dead. To make the opposite judgment on behalf of another person — most of whom, if they were allowed to grow up, would be able to have some opinion on whether they prefer being alive or dead — is taking the side of the suicidal voices against the God who created us all.
A follow-up on one element of this post: It would be uncharitable and just plain wrong to conclude that doctors and other health-care professionals lack compassion and want to make you suffer. Nevertheless, what Ivan Illich wrote in Medical Nemesis (1975) was true then and is true now: “Modern medicine is a negation of health. It isn’t organised to serve human health, but only itself, as an institution.” The system works by purposes that the workers within the system may not share — but they are compelled to serve those purposes anyway.
I think the first thing to understand about the American health-care system is this: some people lose money from illness, and some people make money from illness. Some people pay, and some people get paid. This doesn’t mean that the people who get paid are motivated solely or even primarily by money, though some of them surely are; this doesn’t mean that those who pay always resent having to pay, though some of them surely do. What it means is that there is on this one significant point an opposition of interests between the two parties; and that opposition manifests itself in a thousand ways. You see it when sick people don’t go to the doctor because they don’t want to, or can’t, pay for the services that would be rendered there; you see it when doctors advocate for unnecessary procedures that line their pockets, or prescribe drugs because they have a lucrative relationship with particular drug companies; you see it when money-making procedures are deemed necessary while the poor get dramatically sub-par health care or none at all.
Again: I don’t think there are many doctors who consciously make medical decisions based on their lust for money. But I do think there are a great many doctors who go along with the incentives established by the system, without thinking about it too much or at all, because on some level they know that thinking about it could well lead to their losing money.
And this opposition of interests cannot be eliminated; in the current system — where profit is God even for supposedly nonprofit hospital systems — it cannot even be diminished.
But our discourse about medicine and health care is radically skewed towards the doctors and other health-care professionals. The voices of the patients — those who suffer, and those who pay — are rarely heard. This is the importance of books like Ross Douthat’s The Deep Places — and there ought to be a lot more of them. It’s not that we don’t have books and essays by people who have been abused or abandoned by the medical system — there are plenty of them — but they get tragically little attention, largely, I think, because journalists think of themselves as belonging to the same “Professional” category as doctors and don’t want to be class traitors.
It’s good to have books by doctors who see the evils of the system and fight back against it — people like Oliver Sacks, about whom I have an essay coming out soon from The New Atlantis, and Victoria Sweet — but we really do need to hear more from patients, and especially patients the system doesn’t serve. Because the incentive structures of American health care ensure that, without major changes, things will get worse before they get better.
This is a cause worth fighting for, but it will be hard to get enough people on board if we don’t hear more from those most affected.
I’ve kept the links in this important passage from a sobering piece by Ed Yong:
In 2018, I wrote an article in The Atlantic warning that the U.S. was not prepared for a pandemic. That diagnosis remains unchanged; if anything, I was too optimistic. America was ranked as the world’s most prepared country in 2019 — and, bafflingly, again in 2021 — but accounts for 16 percent of global COVID deaths despite having just 4 percent of the global population. It spends more on medical care than any other wealthy country, but its hospitals were nonetheless overwhelmed. It helped create vaccines in record time, but is 67th in the world in full vaccinations. (This trend cannot solely be attributed to political division; even the most heavily vaccinated blue state — Rhode Island — still lags behind 21 nations.) America experienced the largest life-expectancy decline of any wealthy country in 2020 and, unlike its peers, continued declining in 2021. If it had fared as well as just the average peer nation, 1.1 million people who died last year—a third of all American deaths— would still be alive .
America’s superlatively poor performance cannot solely be blamed on either the Trump or Biden administrations, although both have made egregious errors. Rather, the new coronavirus exploited the country’s many failing systems: its overstuffed prisons and understaffed nursing homes; its chronically underfunded public-health system; its reliance on convoluted supply chains and a just-in-time economy; its for-profit health-care system, whose workers were already burned out; its decades-long project of unweaving social safety nets; and its legacy of racism and segregation that had already left Black and Indigenous communities and other communities of color disproportionately burdened with health problems. Even in the pre-COVID years, the U.S. was still losing about 626,000 people more than expected for a nation of its size and resources. COVID simply toppled an edifice whose foundations were already rotten.
It would be nice to say that the pandemic revealed deep-seated problems that we had managed to avoid facing — but now we must face them! Nah. We mustn’t, and we probably won’t. It turns out that reality has limited power over an infinitely distractible and distracted society.
Consider this a kind of follow-up to my post from some weeks ago on moving at the speed of God.
I’ve been reading Lawrence Wechsler’s And How Are You, Dr. Sacks? — which is just fascinating. But for today I want to talk about something specific that comes up near the end of the book: the question of whether Sacks was a reliable narrator, whether his fantastic “clinical tales,” as he calls them, were just that, fantasies. Many of his fellow neurologists simply don’t trust him, and Wechsler gives over an entire chapter to their doubts. But Wechsler also provides the testimony of people who worked closely with Sacks, and among the most interesting of these is Margie Kohl (later Marjorie Kohl Inglis).
Kohl’s view is that many of the neurologists who are skeptical of what Sacks discovered simply aren’t patient enough to investigate as he investigated. “Most neurologists are so stuck in their checklists and their Medicare-mill fifteen-minute drills that they miss everything; Oliver missed nothing.”
Kohl worked with Sacks when he was treating the victims of encephalitis that he later described in his famous book Awakenings — perhaps also his most controversial book, because the changes he describes these people experiencing seem, to many neurologists, too dramatic to be true. So Wechsler asked Kohl whether Sacks had invented his patients’ spectacular response to the drug called L-DOPA, and she replied:
I know the charge is not true, and I was there. Sure, he would occasionally attribute higher vocabulary to some of the patients — Maria, for instance, was uneducated and he made her language flow, but this was as much as anything out of respect for her, an honoring and cherishing of her — and in a wider sense he embellished nothing. And many of the patients did talk fluently and with great subtlety.
But you had to be willing to sit at the bedside and listen. They didn’t just up and tell you these things. You had to establish rapport and a context.
With Leonard, for instance, most people had never gotten to him because (and I am speaking here of the years before L-DOPA) they wouldn’t spend the time with him: He was very slow, each letter might take a minute for him to spell out on his board, and everyone else would limit themselves to yes or no questions. But Oliver sat it out.
Leonard L. is one of the major characters in Awakenings — also one of its saddest stories. As you can tell from Kohl’s comment, for decades Leonard could not speak, but could only write his thoughts out with great labor on a chalkboard — which is why the neurologists who treated him would only ask him Yes/No questions: that way they only had to wait long enough to see that he was making a “Y” or an “N.” But Sacks asked him questions that required much longer answers — and then “sat it out” as Leonard wrote on his board. Can you even imagine what this meant to Leonard? — to have someone give him encouragement to say what he needed to say, no matter how long it took?
Some years after the book’s publication, when he learned that Leonard had died, Sacks wrote a letter to his mother, which concludes with these moving paragraphs:
Only the passage of years can give one perspective — and it comes to me that I have known Leonard — and you — for fifteen years; which is quite a long time in anyone’s life. What I felt in 1966 I felt more strongly every year — what a remarkable man Leonard was, what courage and humour he showed, in the face of an almost life-long heart-breaking disease. I tried to give form to this feeling when I wrote of him in Awakenings … but was conscious of how inadequate and partial this was: perhaps even more so to you, for you were such a life-giver to him … Perhaps this only became clear to me in the years afterwards….
I have never had a patient who taught me so much — not simply about Parkinsonism, etc., but about what it means to be a human being, who survives, and fully, in the face of such affliction and such terrible odds. There is something inspiring about such survival, and I will never forget (nor let others forget) the lesson Leonard taught me; and, equally, there has been something very remarkable about you, and the way in which you dedicated so much of your strength and life to him … he could never have survived — especially these last years — without your giving your own life-blood to him…. You too are one of the most gallant people I know.
Now Leonard has gone, there will be a great void and a great grief — there has to be where there has been a great love. But I hope and pray that there will be good years, and real life, ahead for you yet … you have a great vitality, and you should live to a hundred! I hope that God will be good to you, and bless you, at this time, give you comfort in your bereavement, and a kind and mellow evening in the years that lie ahead.
With my deepest sympathy and heartfelt best wishes,
Sacks loved Leonard, and admired him, and he could love and admire him only because he knew him, and he could only know him by spending a great deal more time with him than anyone else would have — as in more time by a factor of fifty. Checklists are sometimes absolutely necessary; but at other times they and a daily schedule of “rounds” are the worst tools a doctor can have. Sacks was willing to move at the speed of Leonard — at what felt like no speed at all, what felt like stasis — and as a result “Oliver missed nothing.” Having missed nothing, he garnered a testimony that he could pass on to his readers. And in that way, sisters and brothers, he moved at the speed of God.
In his influential “The Road to Serfdom,” the economist Friedrich Hayek argued that the state should “assist the individual in providing for those common hazards of life” — among them poor health and unexpected accidents. And in his illuminating analysis of Ronald Reagan’s legacy, “The Working Class Republican: Ronald Reagan and the Return of Blue-Collar Conservatism,” the political scientist Henry Olsen uncovered some timely insights. “Any person in the United States,” Reagan said in 1961, “who requires medical attention and cannot provide it for himself should have it provided for him.”
These sentiments conflict with recent iterations of Republican health care reform. The “full repeal” bill is nothing of the sort — it preserves the regulatory structure of Obamacare, but withdraws its supports for the poor. The House version of replacement would transfer many from Medicaid to the private market, but it doesn’t ensure that those transferred can meaningfully purchase care in that market. The Senate bill offers a bit more to the needy, but still leaves many unable to pay for basic services. In the rosiest projections of each version, millions will be unable to pay for basic health care. This wasn’t acceptable to Reagan in 1961, and it shouldn’t be acceptable to his political heirs.
Our organizations, and we ourselves, do not all share the same view of the moral acceptability of the contraceptive drugs and services that comprise the contraceptives mandate. We have varied views on the adequacy of the “accommodation” that the administration has promised for religious organizations with deep objections to the contraceptives mandate but that are not eligible for the narrow religious employer exemption. Our organizations are involved in different areas of service. We belong to different faiths.
But we are united in opposition to the creation in federal law of two classes of religious organizations: churches—considered sufficiently focused inwardly to merit an exemption and thus full protection from the mandate; and faith-based service organizations—outwardly oriented and given a lesser degree of protection. It is this two-class system that the administration has embedded in federal law via the February 15, 2012, publication of the final rules providing for an exemption from the mandate for a narrowly defined set of “religious employers” and the related administration publications and statements about a different “accommodation” for non-exempt religious organizations.
And yet both worship-oriented and service-oriented religious organizations are authentically and equally religious organizations. To use Christian terms, we owe God wholehearted and pure worship, to be sure, and yet we know also that “pure religion” is “to look after orphans and widows in their distress” (James 1:27). We deny that it is within the jurisdiction of the federal government to define, in place of religious communities, what constitutes true religion and authentic ministry….
Secretary Sebelius, we believe that there is one adequate remedy: eliminate the two-class scheme of religious organization in the preventive services regulations. Extend to faith-based service organizations the same exemption that the regulations currently limit to churches. This would bring the preventive services regulations into line with the long-standing, respected, and court-tested provisions of Title VII of the 1964 Civil Rights Act [§§702, 703(e)] which provide a specific employment exemption for every kind of religious organization, whether they be defined as “a religious corporation, association, educational institution, or society.”
I had been planning to write something about why I support my employer’s decision to join lawsuits against the HHS contraception mandate, but this excerpt from a letter sent today by the Institutional Religious Freedom Alliance makes the case clearly. My concern is not about the use of contraception, but about the government’s claim of a prerogative to decide what is and is not intrinsic to the free exercise of religion. The government’s position suggests a move to confine freedom of religion to freedom of worship, but all authentic religion is far more than worship: it is also a set of practices in the world, practices which the U.S. Government is constitutionally bound to protect. Moreover, as the letter points out, the two-tier system established by HHS clearly violates Title VII of the Civil Rights Act.
So the mandate is, in my judgment, both illegal and wrong. It threatens to confine religion to a disembodied, Gnostic realm of private worship and thought. Even those who support abortion and contraception should not want to see the government defining religion maximally as private thought and belief. The social costs of that restriction will, in the long run and perhaps even in the short, be catastrophic, because churches and other religious institutions have long been attentive to “the least of these” — the ones that government habitually neglects or even tramples underfoot. Again, contraception is not the key issue here. Contraceptives of all kinds were available in the U.S. before this mandate appeared and they will continue to be; many social service agencies distribute them freely. The key issue is the freedom of religious organizations to define and carry out their own missions in the way that they have throughout most of American history. That is a freedom worth contending for.
P.S. I am anything but a policy wonk, but the one policy issue I have read a good deal about is health care, and especially the plusses and minuses of a universal single-payer health care system. I believe that while all systems are flawed, our current one is shamefully neglectful of those most in need, and a national system resembling the ones used in France and Canada would be far better. Such a system, by taking the responsibility for providing health care out of the hands of employers, would make this current dispute completely unnecessary. But we’re stuck, for the time being, with the current system, and therefore with the current debates.