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The Homebound Symphony

Stagger onward rejoicing

Tag: medicine (page 1 of 1)

December 16, 2022

No Other Options — The New Atlantis:

One of the greatest reasons for concern is the sheer scale of Canada’s euthanasia regime. California provides a useful point of comparison: It legalized medically assisted death the same year as Canada, 2016, and it has about the same population, just under forty million. In 2021 in California, 486 people died using the state’s assisted suicide program. In Canada in the same year, 10,064 people used MAID to die.

Important people — prominent politicians, physicians, and judges — promised Canadians that their rights to autonomy would be expanded. But the picture that emerges is not a new flowering of autonomy but the hum of an efficient engine of death. 

It is quite remarkable to hear from doctors and other medical practitioners who find great satisfaction in killing their patients. 

November 28, 2022

medical discourse

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.  

November 2, 2022

refugees from human nature

Matthew Loftus:

Our communities and households must be active in reaching out to those whose lack of virtue, tradition, or culture is harming themselves and others, the countless refugees from human nature that technological destruction is creating. This of course includes political refugees fleeing climate change or violence, many of whom probably have a thing or two to teach us about human nature, but far more often it includes the people in our neighborhoods, towns, cities, and counties whose capacity for flourishing has been decimated by the forces conservatives love to decry but rarely have a strategy to do something about. Going from “a rearguard defense of tradition to take up the path of the guerrilla” means that we are no longer protecting “ourselves” from “them”, but trying to help the most of vulnerable of them become one of us. 

As Loftus wrote in an earlier essay: 

This is not simply a matter of the rich and powerful sacrificing for the sake of people in poor urban communities. It is also not a matter of poor urban communities since many rural places and even many suburban places need more good neighbours working with local churches. But we need to come to terms with the fact that exercising ourselves in service and challenging ourselves by frequent, intimate exposure to another culture’s expression of faith is a means of discipleship. It also a testimony to the watching world that Christ’s sufficiency transcends our cultural impetus to protect ourselves from “those kinds of people.” We don’t need an elite corps of radical Christians, we need faithful believers with power and privilege to simply spread out and join with brothers and sisters who don’t have the same resources we do.

Good heavenly days, this is a challenge.

I want to return to these thoughts in a couple of months, when an essay of mine appears: I’ve written for The New Atlantis about the fiftieth anniversary of Oliver Sacks’s book Awakenings. 

Also, I’ll have more on “the path of the guerrilla” in another post. 

April 4, 2022

universal neighborliness

Re: my earlier post on an Ezra Klein column, I want to add that the universality of Christianity takes a very peculiar form, because it is a universality that also emphasizes neighborliness, a particular care for those who are nearby. Thus Matthew Loftus:

We cannot love “the whole world” except in abstraction, nor work for the mutual benefit of everyone in the same way that we can take care of our children or our sick neighbor. We must not fail in our duties to those close to us, even if our love ultimately does not stop there. Only by honoring the relationships that we have with others based on our common humanity and our common interchanges of trade and culture can we honor the God who created those people and places. Our local affections will have universal implications for how we use technology, farm the land, and execute trade. And in the global realm as well as the communal, love and sanity require limits.

I have forbidden the use of the EMR [Electronic Medical Records] in my mental health clinic at the hospital, at least for now. As I scribble my notes on paper, I look to the parent, sibling, child, or friend who has accompanied the patient to the clinic. When I ask how well the medications are working, sometimes the patient will say they are fine while their companion smiles and tells me the truth. Rarely do patients come alone; some friends or family members pay a day’s wages for an hour-long bus ride to the hospital to accompany their suffering loved one. I like to think that no one in our hospital suffers alone because the cultural ethos here forbids it. 

Please do read the whole thing. But this is key: “Our local affections will have universal implications.” And, conversely, our universal commitments will necessarily have local instantiations. 

I think Charles Dickens understood this paradox very well, as we see in the greatest of his novels, Bleak House. There we note Mrs. Jellyby practicing her “telescopic philanthropy” — meditating always on the suffering of the people of Borrioboola-Gha while utterly neglecting her own children — and the “business-like and systematic” charity of Mrs. Pardiggle. As Esther Summerson says, “Ada and I … thought that Mrs. Pardiggle would have got on infinitely better if she had not had such a mechanical way of taking possession of people.” When pressed by Mrs. Pardiggle to join in her “rounds,” Esther has a profound response (even if Mrs. P can’t grasp the import of it): 

At first I tried to excuse myself for the present on the general ground of having occupations to attend to which I must not neglect. But as this was an ineffectual protest, I then said, more particularly, that I was not sure of my qualifications. That I was inexperienced in the art of adapting my mind to minds very differently situated, and addressing them from suitable points of view. That I had not that delicate knowledge of the heart which must be essential to such a work. That I had much to learn, myself, before I could teach others, and that I could not confide in my good intentions alone. For these reasons I thought it best to be as useful as I could, and to render what kind services I could to those immediately about me, and to try to let that circle of duty gradually and naturally expand itself. 

Words to live by, say I. And let me conclude with words still wiser, from Helmut Thielicke’s great sermon on the Parable of the Good Samaritan: 

You will never learn who Jesus Christ is by reflecting upon whether there is such a thing as sonship or virgin birth or miracle. Who Jesus Christ is you learn from your imprisoned, hungry, distressed brothers. For it is in them that he meets us. He is always in the depths. And we shall draw near to these brethren only if we open our eyes to see the misery around us. And we can open our eyes only when we love. But we cannot go and do and love, if we stop and ask first, “Who is my neighbor?” The devil has been waiting for us to ask this question; and he will always whisper into our ears only the most convenient answers. We human beings always fall for the easiest answers. No, we can love only if we have the mind of Jesus and turn the lawyer’s question around. Then we shall ask not “Who is my neighbor?” but “To whom am I a neighbor? Who is laid at my door? Who is expecting help from me and who looks upon me as his neighbor?” This reversal of the question is precisely the point of the parable.

Anybody who loves must always be prepared to have his plans interrupted. We must be ready to be surprised by tasks which God sets for us today. God is always compelling us to improvise. For God’s tasks always have about them something surprising and unexpected, and this imprisoned, wounded, distressed brother, in whom the Saviour meets us, is always turning up on our path just at the time when we are about to do something else, just when we are occupied with altogether different duties. God is always a God of surprises, not only in the way in which he helps us — for God’s help too always comes from unexpected directions — but also in the manner in which he confronts me with tasks to perform and sends people across my path. 

P.S. I meant to schedule this to post tomorrow – sorry for all the stuff in one day. If I don’t post anything for the next day or two, just read this post several times. It’ll do you good. 

February 21, 2022

R.I.P. Paul Farmer

I am absolutely gutted to learn of the death of Paul Farmer, the only contemporary, I believe, that I have called simply My hero. He fought the long defeat, and he fought it brilliantly. What devastating news. What a loss for the world.

UPDATE: Here is the first thing I ever wrote about Farmer, thirteen-plus years ago. I still believe every word.

Rest in peace — and well done indeed, thou good and faithful servant.

January 22, 2022

intractable

I keep thinking about this by Rivka Galchen in the LRB:

Berman is keen to dispel the notion that those who refuse vaccines suffer from an information deficit problem. Anti-vaxxers collect evidence in order to disrupt or conceal the truth, not to uncover it. For those who are sceptical of vaccination without necessarily being anti-vaxxers, the most effective public health strategy remains unclear. Berman argues that ‘reactive’ responses, such as mockery, are counterproductive. He cites a series of studies that demonstrate what we might feel instinctively: showing people information that contradicts their beliefs rarely makes them change their minds, and often hardens their convictions. Factsheets like those used by the Centres for Disease Control and Prevention tend not to work, both because they are less powerful than personal narratives and because the other side produces misleading literature in the same format. Online bots and trolls are a source of both pro and anti-vax messages, in more or less equal amounts: the amount of contradictory and unstable information is as much, if not more, of a problem as the information itself.

Maybe some problems can’t be solved. If every imaginable way to persuade people to change their views on a subject only serves to confirm them in those views … what then? My suggestions: 

  • Don’t invest much hope in changing minds; 
  • But don’t absolutely write anyone off; 
  • Be patient and gentle; 
  • Vary your methods and arguments; 
  • And above all, focus 95% of your energy on younger generations — on people who haven’t yet screwed up their lives by being Extremely Online — in hopes of helping them to have better habits than their benighted elders. 
October 2, 2021

Christians and the biopolitical

Matthew Loftus:

Christians must develop and encourage practices of suffering that accompany those in pain, like Simon of Cyrene carrying the cross during Christ’s passion. The ethical imperatives of the Church are only intelligible to a watching world to the degree that Christians are willing to walk alongside those who suffer and bear their pain with them. Without these practices of accompaniment, Christian moral teaching about issues like abortion or assisted reproductive technology is a cold set of rules enforced by people who have the privilege of not having to bear their cost. It is through these experiences — and not just experiences with those who forsake an accessible but immoral technological intervention, but also accompaniment with the poor, the imprisoned, and those whose suffering cannot be relieved by any human means — that Christians are able to experience growth through suffering and acquire the perspective from below that shapes their advocacy for those who need the work-towards-shalom the most. 

A powerful essay. 

The themes of that essay do not immediately seem directly related to the themes of this interview with Loftus, but I think they are. Responding to claims by some doctors that we should ration Covid care to favor the vaccinated and disfavor the unvaccinated, Loftus, himself a physician, says, 

I think it is a matter of justice not to ration care away from the unvaccinated, because to do so, I think, is to pass a judgment on someone’s other personal health decisions that we would never apply in any other case. All health care is a mixture of trying to provide justice while also being merciful to others. It’s impossible to be a good health-care worker and not be willing to be merciful with people who, quite frankly, got themselves into the trouble that they’re in and had many opportunities not to do so. But it’s also a matter of justice in giving that person what they need to survive or, if not to survive, to die in a way that honors the person they are. 

Loftus is pointing here to a version of what Scott Alexander, in one of the more useful ethical essays I have read in the past decade, calls “isolated demands for rigor.” When doctors treat people for health problems that arise from obesity, they don’t withhold care until they learn whether those people have some kind of genetic predisposition to obesity or are fat because they eat at McDonald’s every day — they just treat the patients. Oncologists don’t give better treatment to lung cancer patients who smoke less or don’t smoke at all. We only think to subject the unvaccinated-against-Covid to that kind of strict scrutiny because the discourse around Covid has become so pathologically tribalized and moralized. 

But Christians in particular have a very strong reason not to employ such strict scrutiny: We believe in a God who sought out and saved “people who, quite frankly, got themselves into the trouble that they’re in.” In an earlier reflection on this general subject, I mentioned Eve Tushnet’s wise comment that “mercy to the guilty is the only kind of mercy there is.” The rationing of medical care away from the unvaccinated is structural mercilessness. It is anti-shalom. 

October 1, 2021

medicine as religion

Giorgio Agamben:

It has been evident for quite a while that science has become our time’s religion, the thing which people believe that they believe in. Three systems of beliefs have co-existed, and in some ways still co-exist today, in the modern West: Christianity, capitalism, and science. In the history of modernity these three “religions” often and unavoidably intersected, each time clashing with one another and then reconciling until they gradually reached a sort of peaceful, articulated cohabitation (if not a true collaboration, in the name of a common interest). What is new is that, without us noticing, a subterranean and implacable conflict between science and the other two religions has ignited. Science’s triumphs appear today before our very eyes, and they determine in an unprecedented way every aspect of our existence. This conflict does not pertain, as it did in the past, to general theories and principles but, so to speak, to cultic praxis. No less than any other religion, science organizes and arranges its own structure through different forms and ranks. To its elaboration of a subtle and rigorous dogmatics corresponds, in praxis, a vast and intricate cultic sphere that coincides with what we call “technology.” It is not surprising that the protagonist of this new religious war is the very branch of science whose dogmatics is less rigorous and whose pragmatic aspect is stronger: that is, medicine, whose object is the living human body.

August 11, 2021

The Deep Places

I’ve just read Ross Douthat’s forthcoming memoir The Deep Places and it is truly exceptional: a vividly narrated account of his disorienting spiral into chronic illness, and of his eventual recovery. (Not quite a complete recovery, I take it, but nearly so.) Ross manages a really remarkable thing here: to weave together his story of a body’s pain, a mind’s vacillations, and a spirit’s struggles with an account of how the medical establishment deals with, or simply refuses to deal with, conditions it does not understand — and, as if all that isn’t enough, an account of how, in response to the establishment’s failures, sufferers form communities that sometimes carry them to healing and at other times take them down long paths of confusion and illusion. That Ross can weave all this into a unity and even make the book a kind of page-turner — that’s something special.

Let me close by pointing out one more layer of meaning: Ross’s illness happened to him in an era of self-presentation through social media — an almost universal phenomenon, yes, but one that’s intensified for public figures like Ross. I’ll end with this passage from the book, in which Ross discusses meeting, during his various professional travels, a kind of hidden nation of sufferers, most of whom were rather older than him:

There was comfort there, of a sort: I was just living under a storm front that had rolled in a little early. But there was also a feeling of betrayal, because so little in my education had prepared me for this part of life — the part that was just endurance, just suffering, with all the normal compensations of embodiment withdrawn, a heavy ashfall blanketing the experience of food and drink and natural beauty. And precious little in the world where I still spent much of my increasingly strange life, the conjoined world of journalism and social media, seemed to offer any acknowledgment that life was actually like this for lots of people — meaning not just for the extraordinarily unlucky, the snakebit and lightning-struck, but all the people whose online and social selves were just performances, masks over some secret pain.

July 31, 2021

open letter from a distinguished surgeon

Doctors call 768

I confess to experiencing not merely disquiet but also exhaustion, in the face of endless demands that I, a trained and experienced surgeon, wash my hands before operating on patients. The chief impetus for these demands seems to arise from one Miss Nightingale, an admirable woman no doubt but one trained neither as a surgeon nor as a physician. Nothing in my extensive experience — as, may I repeat, a highly trained surgeon — indicates the need for such a practice. It is true of course that not all of my patients have survived the operating theatre, but no surgeon has ever had a perfect record of success, and I have good reason to believe that Miss Nightingale in the Crimea manifested no spectacular powers of healing.

Moreover, we do not fully understand the chemical properties of soap; it may well be — indeed I suspect that this is the case — that the introduction of soap-suds, or even hands that have recently been in contact with soap-suds, to the human form will induce more symptoms in an infected or otherwise diseased part of the body than it could possibly ameliorate. In these cases the natural condition of the surgeon’s hands is surely safer than the introduction of a substance as thoroughly unnatural as soap. Indeed, two distant relations of mine have recently written to inform me that they have with their own eyes seen human skin terribly burned, and organs of the human body discolored and withered, in response to contact with soap. Testimony so compelling cannot possibly be dismissed.

I am further concerned by the prolonged and highly agitated statements from her Majesty’s Government on this subject. However well-meaning these public servants may be, their record of — let me speak frankly — incompetence in other matters disinclines me to heed their pleas in this case. Indeed it seems likely that their entire campaign on behalf of hand-washing is prompted by a desire to create a political triumph over the Loyal Opposition, who until recently blessed us all with their wise governance.

In conclusion, and in brief, let me simply say to Miss Nightingale and others who agitate so shrilly on behalf of the strange practice of hand-washing: These are my hands, and whether to wash them or no is my choice. 

Your ob’t servant, &c. &c. 

March 11, 2021

the wait

This piece by Don McNeil (which in a sane world would have appeared in the New York Times, but that’s another story) is a sobering reflection on just how chaotically incompetent the vaccine roll-out is here in America. People are getting vaccinated, to be sure — my wife being one of them, thanks be to God, because she has a medical condition that would make contracting covid-19 very dangerous indeed to her. But it’s happening in a way that seems almost random. As McNeil points out, being a frat boy appears to be a qualification for getting vaccinated; but I, teacher of frat boys, don’t have a snowball’s chance in a Texas summer of getting the jab. I’ve been teaching students in person for almost an entire academic year, and that doesn’t factor into anyone’s calculations. I fully expect to be the last person in America to be vaccinated against covid-19 — I mean, assuming that I don’t get the disease itself. 

UPDATE:

September 1, 2015

Bradley Voytek:

The fact that I, a practicing neuroscientist, can openly admit to giving a shit about the human side of neuroscience without fearing “outing” myself as a soft thinker is in no small part due to artistry of Dr. Sacks’ blend of scientific rationality and human empathy. That’s an incredibly difficult line to walk when you’re faced with the existential reality that the very thing that makes us who we are can be changed in some way — for example by neurological trauma or injury — and can therefore change basic aspects of our perception and personality. 

Dr. Sacks, through sheer force of compassion, reminded us, as a scientific field, that the very thing that makes neuroscience most frightening — its ability to expose our humanness as being tied to our physical self — is also why it’s so important for us to pursue it. The promise of neuroscientific advancement is the reduction of suffering, and in many ways Dr. Sacks was our empathic lighthouse in the scientific storm of advancement, guiding us toward that humanistic goal.

January 1, 2014

genetic synecdoche

Together with philosopher David Wasserman, Asch wrote in 2005 that using genetic tests to screen out a fetus with a known disability is evidence of pernicious “synecdoche.” Ordinarily, synecdoche is a value-neutral figure of speech, in which some single part stands for the whole—as in the common use of “White House” to stand for the executive branch of government. But Asch and Wasserman’s meaning was more loaded: prenatal genetic tests, they argued, too often let a single trait become the sole characteristic of a fetus, allowing it to “obscure or efface the whole.” In other words, genetic data, once known, generally become the only data in the room. Taking a “synecdochal approach” to prenatal testing, Asch and Wasserman warned—in the era just prior to consumer genetic sequencing—allows one fact about a potential child to “overwhelm and negate all other hoped-for attributes.”

We won’t know what Asch would have made of 23andMe, designer babies, or broader claims for personal genomics. But her intellectual legacy only grows more relevant in the era of ever-cheaper, personalized genetic data. Asch understood that there are plenty of things technologies like prenatal genetic testing can tell us. But the choices and challenges in defining a life worth living, and living well—it may be that these aren’t technological problems at all.

— An Ethics for the Future of Genetic Testing
June 8, 2013

Not everyone agreed that gout was a malady, or a bad thing. Some saw it as Nature’s warning, or as a deliverance from worse afflictions (it was better than haemorrhoids, for instance), and had no desire to be cured of it. As this book says, it was often regarded as a life assurance, not a death sentence. Gilbert Sheldon, Archbishop of Canterbury under Charles II, ‘supposedly offered £1000 to any person who would “help him to the gout”, looking upon it as the only remedy for the distemper in his head, which he feared might in time prove an apoplexy; as in fine it did and killed him’. William Cowper congratulated a friend on contracting the disorder, ‘because it seems to promise us that we shall keep you long’. Hester Piozzi’s husband grew worried and alarmed if his gout did not return regularly.

Besides, gout was very much a mark of status. Lord Chesterfield said it was ‘the distemper of a gentleman, whereas the rheumatism is the distemper of a hackney coachman’. It attacked not only the wealthy but the creative, which meant that no man of letters could afford to be without it. Some thought it was the hallmark of genius, a view obstinately perpetuated by Havelock Ellis. In short, it was an honour to have gout and the phrase ‘the honour of the gout’ was in free use. The authors quote Earl Nugent’s apology to the Duke of Newcastle for failing to wait on him: ‘He received the Honor of His Grace’s card here, where he has been detained by the Honor of the Gout.’ For a person of the lower orders to aspire to the honour of the gout was unthinkable. Artisans and crofters did not know their luck; hard work every day kept uric acid at bay. ‘Live upon sixpence a day – and earn it’ was the cure for gout advocated by the surgeon John Abernethy.

— E.S. Turner reviews ‘Gout’ by Roy Porter and G.S. Rousseau · LRB 7 January 1999
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