The System Is Broken

A little over two weeks ago I came down with a terrible cough. I coughed deeply, day and night, until my diaphragm was so sore a cough felt like a knife stuck into my ribs. I sneezed and drained a constant fountain of snot. I got a fever, at least 102 degrees. I ached. By the second or third day I could hear a sound coming from my chest that I had never heard before: an industrial sound, like tires running over gravel.

As a normally healthy person I rarely go to the doctor. This time I knew I needed help. I have a doctor whom I like, and I have great insurance. I’m a registered patient in the Sutter hospital system. But when I tried to get an appointment, there was nothing. Not a hint of availability, not just with my doctor, not just within her office, but in the whole Sutter system in Sonoma County. Sutter is one of three big hospital groups in our county. Not one appointment of any kind with anybody.

I ended up taking the only option, a walk-in-care clinic. The desk warned me the wait time was two hours, and I sat miserably for nearly that long before being seen. Everybody was nice, and the doctor (or nurse practitioner?) promptly ordered a chest X-ray, tested me for Covid and flu, and then sent me home. Within a few hours I got a phone call confirming that I had pneumonia, with a prescription for antibiotics. True, nobody bothered to tell me how to take care of myself, what not to do, or anything useful beyond taking pills once a day. I don’t think the standard of care was very good, but I’m not complaining: I got what I needed, and I know how to google pneumonia.

I don’t mean this as a complaint. It’s an observation, based anecdotally on my experience and that of quite a few of my friends. The system of primary care is broken, at least in Sonoma County.

By “system” I mean a hub-and-spoke model nearly all medical institutions have built their care around. The primary care doctor (or nurse practitioner) is the hub. They have history with you, maybe they know your family, they’re familiar with your needs. When you get sick you go to that doctor, and they figure out what kind of issue you’ve got. If tests are needed, they get those done; and they refer you on to specialists. They don’t treat cancer or kidney disease or auto-immune diseases: specialists handle those. But they get you in to see the right person.

It’s a great model, in theory, but it relies completely on access. If you can’t see or call your doctor, the system is completely non-functional. Your only option is the ER or an urgent care clinic. That works—it worked for me—but it’s a completely different model.

I suppose the basic problem is there are not enough doctors. If that’s the case, either hire more—which I know is difficult—or figure out another way to allocate their services. Don’t tell me I have a doctor if I can’t get to that doctor. Tell me that the ER is your hub, send all your primary care doctors there, and let me go there directly, rather than wasting time on your website trying to make a connection on a broken system. Maybe you can use AI to triage patients and prioritize their needs. I don’t know. All I know is, the system is broken.

I’d be curious to hear from others. Is this a local breakdown? Is it a temporary crisis? Somebody higher up must know, but I’ll be darned if they are telling patients.

Nanny State?

This NYTimes column from Ross Douthat got me up on my hobby horse regarding overly officious coronavirus lockdowns. A week ago I wrote the following letter to my local newspaper, the Santa Rosa Press Democrat:

We grant our health authorities extraordinary powers, to close businesses, for example. In exchange the health authorities owe us clear explanations of their decisions.

Item: the authorities have closed the Santa Rosa Rural Cemetery. For many years I have run in the cemetery daily. It is not a place where people congregate, picnic or play. Visitors walk their dogs or stroll. By closing the cemetery, the authorities force them onto local sidewalks, which are consistently narrower than the cemetery paths. Could the authorities explain what they hope to gain by this closure?

You will be surprised to learn I have not heard a response.

I understand that the authorities want to make clear rules without a million exceptions. I understand that they want to err on the side of safety. I even understand that they might want to shock the public into a realization that this really is a crisis. (By the way, if you’re still wondering if coronavirus really is more dangerous than the flu, read this.)

The health authorities’ effectiveness depends, however, on a compliant public. So far, they’ve had it, at least where I live. However, if they want to undermine that compliance, they should give the public a prolonged dose of the nanny state—officious, unaccountable, petty. I’m not suggesting we’ve had that so far, but I know how easily bureaucrats slip into it. Please don’t. Lives may be at stake.

Prophecy

At the suggestion of a friend, Popie and I watched “Unseen Enemy,” a documentary made in 2017 about epidemics and pandemics. It blitzes through the scourges of recent years: AIDS, SARS, MERS, Zika, swine flu, Ebola, influenza—and more!–and gives a good, simple explanation of how outbreaks (which are inevitable) occur, how they become epidemics and then global pandemics.

It’s a competent and interesting documentary, but what makes it eerie is its prophetic description of what’s coming next. Quoting epidemiologists, the film says that we are virtually certain to suffer a deadly pandemic within the next ten to twenty years. It details the responses that will be necessary: testing, tracing, massive early response, search for a vaccine. And, again quoting epidemiologists, it predicts that our response will be inadequate, because of a lack of preparation fed by public mistrust of government and the consequent underfunding of the forces meant to respond. It predicts exactly what we are living through.

If the test of a true prophet is whether their predictions come true, the epidemiologists are true prophets.

In Italy

I don’t generally listen to podcasts, but I found this one compelling. It’s a doctor in the town of Bergamo, Italy,  who has come home to his family for the first time in three weeks. He describes what he has done and seen. It’s not graphic, but deeply emotional.

Here in the Bay Area we are all locked down, legally compelled to stay away from other people except for legitimately necessary excursions (food, medicine, necessary services). I realize that for most of the country,  that still seems strange and exotic. This podcast will help you understand why it’s happening.

What To Do While You’re Holed Up

I’m asking myself what to do with all this extra time. Here are a few thoughts:

–Get outdoors. Staying inside all the time will drive you crazy.

–Call an old friend.

–Check on your neighbors. Especially if they are old and/or have health problems, you might be able to offer some help. At the very least, you can offer some human contact. Neighborliness is good!

–Write or call anybody you know in a senior living facility. They probably can’t have guests, and they may be unable to get out into nature, so a phone call helps.

–Read a book. Watching TV or checking COVID-19 news on the internet all day can make you sick.

Other ideas? Please suggest. This could last a while.

 

AA

I was very glad to read this review of research into drug and alcohol rehab. Bottom line, it shows that AA is effective.

What’s Fair

I liked very much Alice McDermott’s The Ninth Hour. One of the characters is Sister Jeanne, a small, cheery nun in the Little Nursing Sisters of the Sick Poor. Spending every day nursing poor people in 1930s New York, she’s very familiar with suffering. Here’s what she believes about its unfairness:

Sister Jeanne believed with the conviction of an eye witness that all human loss would be restored: the grieving child would have her mother again; the dead infant would find robust health; suffering, sorrow, accident, and loss would all be amended in heaven. She believed this because, because (and she only possessed the wherewithal to explain this to children—trying to say it to angry or grieving or bitter adults only left her tongue-tied), because fairness demanded it.

It was, to her mind, a simple proposition. The madness with which suffering was dispersed in the world defied logic. There was nothing else like it for unevenness. Bad luck, bad health, bad timing. Innocent children were afflicted as often as bad men. Young mothers were struck down even as old ones fretfully lingered. Good lives ended in confusion or despair or howling devastation. The fortunate went blissfully about their business until that moment when fortune vanished—a knock on the door, a cough, a knife flash, a brief bit of inattention. A much-longed-for baby slid into the world only to grow blue and limp in its mother’s arms. Another arrived lame, or ill-formed, or simply too hungry for a frail woman already overwhelmed. There was a child in the next parish with a skull so twisted his mouth couldn’t close, and every breath he took, every word he spoke, even his childish laughter, rattled through dry and swollen lips. Another with a birthmark like a purple caul. Blindness. Beatings. Broken or bring bones. Accident, decay. Cruelty of nature. Cruelty of bad men. Idiocy, madness.

There was no accounting for it.

No accounting for how general it was, how arbitrary.

Sister Jeanne believed that fairness demanded this chaos be righted. Fairness demanded that grief should find succor, that wounds should heal, insult and confusion find recompense and certainty, that every living person God had made should not, willy-nilly, be forever unmade.

”You know what’s fair and what isn’t, don’t you?” Sister Jeanne would ask the sick child, the grieving orphan, Sally herself when she was old enough to understand the question. And us.

“And how do you know?”

Sister Jeanne would put a fingertip to the child’s forehead, to the child’s beating heart. “Because God put the knowledge in you before you were born. So you’d know fairness when you see it. So you’d know He intends to be fair.”

**

“Who’s the dumbest boy in your class?” she once asked us. This was in the Hempstead house where we were young. “And if the teacher’s dividing up sweets and gives him only one while everyone else gets two, what will he say? He’ll say it’s not fair, won’t he? If you call him out playing ball when everyone can see he’s safe by a mile, what will he say—dumb as he is in school? He’ll say it’s not fair, see? And how does he know? Did he learn what’s fair from a book? Did he take a test? No, he did not.”

 

 

Healing Power

I’m very grateful that I can still run. However, with age comes injury. It’s one ticky-tacky problem after another. I get over plantar fascitis, and a week later I have a mild calf strain. Then it’s my ankle, then it’s my knee.

I’m talking minor problems–nothing life threatening. Nevertheless, these injuries are extremely annoying.

This morning I went out on a cautious run, fearing that a calf strain would shut me down, as it has for most of the last week. To my surprise, everything worked fine! I had a good run, and when I was almost home I remembered that I had asked God to heal my leg. Apparently he did! So I thanked him for answering.

He’s been doing this, not just since I turned 65, but my whole life. How many hundreds, maybe thousands of flus, colds, strains, sprains and fevers have I recovered from? How miserable would my life be if I had not?

I think this is what Psalm 103:3 means when it exclaims: “Praise the Lord, my soul, and forget not all his benefits, who forgives all your sins and heals all your diseases.” The psalmist is not saying that nobody need ever die of disease. He’s noting the ordinary nature of life in God’s world. Sin is ordinary–it happens every day and perhaps every minute. God forgives it in his children. Disease is ordinary too–and God ordinarily heals it. He made the world such that we get well. I don’t want to take away anything from the spectacular, miraculous healing. Who doesn’t wish to see that? But we should not overlook the equally supernatural reality of the ordinary.

Being Mortal

I wish every doctor in the world would read Atul Gawande’s Being Mortal, because it speaks so eloquently—and practically, as well—to a fundamental change in the way we live. It’s a change we owe partly to modern medicine: we not only live longer but we die slowly. It used to be, Gawande says, that the majority of deaths came without much warning—heart attacks, sudden infections, strokes, or even the sudden onslaught of cancer for which medicine had no healing response. (TB was the one great exception.) Now our mortality tends to a long, slow decline.

Medicine tries to beat back this trend, fighting for life, but not paying much attention to what will make our lives worthwhile day by day. Because medicine is so dedicated to resisting death, it does a terrible job acknowledging its inevitability; and because it focuses more on disease than on the human beings who are diseased, it is quite capable of making our lives worse. Caught up in the dramatic imperatives of the medical system, people get lost and end up with miserable existences.

Gawande, a Harvard surgeon who writes for The New Yorker, tells the stories of many patients, including his own father, who had to negotiate this journey without much help from their doctors and sometimes with the doctors’ actual interference. He also introduces us to medical professionals who have thought long and hard about these matters, and gives us hope that a long, slow, miserable death is far from inevitable. Something can be done to make it better.

Gawande is attracted to the holes in medicine—not to modern miracle stories of bizarre diseases and heroic science, but to medicine’s blind spots and failings. He has written extraordinarily well about why medicine costs so much, and about why there are so many medical errors (and what can be done about it). But in writing about mortality, he has landed on a subject with deeper, more fundamental implications.

“The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days. For more than half a century now, we have treated the trials of sickness, aging and mortality as medical concerns. It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.”

This social experiment has many sides, but perhaps the most pernicious is the loss of autonomy by the aging. Gawande quotes a colleague: “’We want autonomy for ourselves and safety for those we love.’ That remains the main problem and paradox for the frail. ‘Many of the things that we want for those we care about are things that we would adamantly oppose for ourselves because they would infringe upon our sense of self.’”

Gawande explores the institutions we have designed for the elderly and the chronically ill—nursing homes and assisted living facilities—and helps us see how, by eliminating autonomy in the name of safety and care, they often create an inhuman environment. He describes in detail how 911 and ICUs and heroic cancer-fighting tools may actually shorten life as well as make its end horrible and inhuman. But he does much more than identify the disease, he probes for a cure.

It is hard to imagine that Gawande is really a surgeon, given that he is so willing to admit his own failings as a doctor, his own ignorance of how to treat his desperately ill patients.

The result is a very moving book, one that often brought tears to my eyes. It also made me think long and hard about my own life and the lives of others, about the kinds of questions and responses I myself make to friends who are seriously ill or dying.

The Case Against Assisted Suicide

We are once again experiencing a wave of heartfelt appeals for assisted suicide. Two reasons for it are usually cited. One is that a prolonged death is painful and horrifying; the other that a person’s individual autonomy includes the right to choose when to die.

Against the first reason stands hospice, which enlists both medical science and personal compassion to ensure that death is not painful or horrifying. Many people have awful ideas about the process of dying, but hospice is extraordinarily effective in alleviating suffering and indeed encouraging a sense of meaningful care. Nobody has to have a dreadful death. On the contrary, as many, many families who have relied on hospice can testify, my own included.

Take that fear away, and the argument is really about suicide. Is it an acceptable option? Should each individual choose whether to go on living at any moment?

One strong argument against assisted suicide is the “assisted” part. It is impossible to be sure that relatives, doctors or friends are not giving a sad and frightened person a little push; not just assisting but enabling. There exist many reasons why those closest to the concerned person may want to get on with it—financial reasons, emotional reasons. None of those should be reasons to end a life, but under what regime of safeguards can we be sure they are not in fact the true underlying motives? Older people are often obsessed with “not being a burden.” It might not take more than a slight suggestion, a mere tone of voice, to convince them that they would be less of a burden if they put an end to themselves.

But suppose you hedged in the act of assisted suicide with laws that made it unlikely for such suggestions to overwhelm a person’s choice. Then you have the question of suicide, period. Is there a right to suicide?

If you have had any involvement with someone who ended their life, you know the horrible ripping it does to the fabric of family and society. It is a terrible act of violence that does not affect just the one who ends their life; it changes everybody, forever. Of course it is most violent when done by the young, but who is to say it is benign when done by someone old or sick? This is not to blame the suicide—but it is to suggest that we ought never to encourage self-inflicted death, and always to put as many barriers in the way as we can, at any age and in any condition. In this we are voting not just for the life of the potential suicide, but for the life of the community he or she will leave behind in the wake of choice.

Ultimately, we face a fundamental clash of values in assisted suicide. Do we love life, all of life? Or do we love autonomy more? Life is what comes to us: we open our eyes on it each day, not knowing what great or awful things it will hold. We do not choose life, only how to respond to it. Autonomy, when held as the highest value, asserts that life is material for us to mold, or not to mold. We can turn off the game any time we like. In the final analysis, the choice of values is about God. Who rules? Someone or Something who gives life, and to whom we owe a response? Or Me, the Maker and Destroyer of Worlds?

People will commit suicide, with or without the assistance of others. We cannot help that, and they are our fellow human beings, to be treated with compassion.  I would never, however, pave the path for their self-inflicted death.