RL is a 55-year-old man who comes to clinic for follow-up of his hypertension, diabetes and generalized anxiety disorder.
In the doctor patient relationship, both parties generally have a pretty good sense about how much the relationship benefits the patient. Usually, there is what I’ll call value-realization-concordance (VRC).[i] The doctor feels like she is providing a reasonable standard of care and the patient feels like he is getting adequate medical care. Neither thinks anything extraordinary is going on.
Rarely, there is value-realization-concordance in which both patient and doctor recognize that the care being provided is truly exceptional. In the 21st century, when this happens, it usually shows up in the marketing campaign of a medical center.
As discord is always more interesting than concord, value-realization-discordance (VRD)[ii] is more fun to think about. VRD comes in two flavors: only the doctor knows that something special is happening or only the patient knows. We’ll call these physician-centered-VRD and patient-centered-VRD, respectively.[iii]
The only time I personally experience physician-centered-VRD is when I parsimoniously make an interesting diagnosis. This doesn’t happen often, but it is what we internal medicine doctors live for. I expect surgeons experience physician-centered-VRD when an operation goes off splendidly. The doctor (we hope) does not alert the patient of his or her success and the patient goes on thinking they are getting routine, quality care.
Patient-centered VRD occurs when the care provided by a physician is much more consequential than she realizes. A few times in my career, I have learned that while I thought I was providing hardly notable care, my patient was receiving an outsized benefit. I wrote at length about one such case in a JAMA “Piece of My Mind” essay a few years ago.
(We’ll avoid a discussion of relationships when a physician believes he is providing, or a patient believes he is receiving, exceptional care when he is not. There is probably a medical center award that could, but never will, be given for these cases.)
RL came in for a regular scheduled visit. It was a Friday afternoon in August, the day before I was heading out of town for vacation. I was managing his hypertension and diabetes, something I do enough to rarely find complicated. I had seen him recently because he and I recognized that frequent visits were the best medicine for his anxiety; anxiety focused mostly on his health. A visit, exam, and some well-placed reassurance every month or so was better, if not less addictive, than any medication.
At RL’s previous visit, his blood pressure and glycosylated hemoglobin (average blood sugar) were normal. He’d been feeling well since that visit; there had been no changes in his medications; his vital signs, taken by the medical assistant, were normal; his weight was unchanged. After 8 minutes I ended the visit and asked him to see me again in six weeks.
Is that it? He said, with an edge that I was not accustomed to hearing from him.
We all recognize that we are not quite the same person each day. Our mood, how we slept, how well our morning coffee came out, all effect how we behave. That is no less true for how we, as doctors, do in the office. I’d like to think that the quality of care that I deliver stays constant day to day, but I know that the focus with which I attend to my patients varies enormously.
On my worst days, I see only the leaves. Patients’ issues and, unfortunately, patients themselves, become blood pressures, glycosylated hemoglobins and microalbumin levels. I can feel downright besieged on these days, sometimes thinking, “why is everyone complaining to me?”
On the less harried days, I’m able to look at the issues from a greater distance. On these days, I see the trees. I recognize that the numbers we fuss over are only surrogates. Nobody has ever felt better because their glycosylated hemoglobin was 7% rather than 8%. I again become aware that the goal of our treatments is, ultimately, to improve quality of life. How aggressively should I treat the hypertension in this 80-year-old? Is there really a reason to check a microalbumin level in the patient with well-controlled diabetes mellitus and hypertension who is already receiving an ACE inhibitor?
On the tree days I can observe the patients who trouble me the most in a clinical way. Is there a personality disorder here? Can I use my reaction to this patient diagnostically? Should I approach this interaction differently, using our relationship as a more potent therapeutic tool?
On the days that I consider my best, I see the forest. I see the people I am caring for in all their complexity. In the fifth year of our relationship, a difficult and eccentric gentleman brings his wife to an appointment. The visit not only proves that there really is someone for everyone but also reveals this man’s kindness, humor, and charisma—traits that I have overlooked for years. There is the 60-year-old who looks 90 and the 90-year-old who looks 60. We should never forget that, for reasons mostly out of our control, we all age very differently. It is narcissism to believe that longevity is anything more than luck – genetic, societal, fated. These observations are not profound; they are notable only because they go completely overlooked on most days.
On the forest days, I sometimes recognize issues critically important for my relationship with a patient. I see that some people are scarcely affected by near-complete disability, whereas others, even into their latest years, are devastated by any loss in function. The effect of the environment on one’s health also becomes noticeable. How many of this patient’s health problems are due to, or exacerbated by, the pollution or poverty in her neighborhood or the stressors or violence in her home? This is when the impact of systemic racism, often debated in the abstract, becomes infuriatingly real.
I imagine that I provide better, more holistic care on those “forest days,” but I wonder whether this is true. I’d love to have evidence of improved patient outcomes or satisfaction on these days. Maybe such data would affect our approach to patient care or encourage us to work toward guaranteeing more of our better days.
How could we ensure more forest days? More time, knowledge and experience would be beneficial. Knowledge and experience make the mundane tasks that occupy us on the “leaf days” automatic, freeing us to consider patients more thoughtfully. Decompressing the physician with more time is the wish of patients and doctors. Longer visits are one answer, but computerized decision-support tools and physician extenders could certainly free up physician time and energy.
Beyond these somewhat concrete interventions, a more behavioral approach might yield positive results. On our worst days, might forcing ourselves to ask the questions that we usually ask only on our best days reset our approach?
“Other than medications, what helps your condition the most?”
“Are there things that negatively affect your health that I don’t know about?”
“What do you think is causing your problem?”
“What are you most worried about?”
These are the types of questions that would refocus our attention from the leaves to the forest. Even if we can never show better outcomes, it is hard to imagine that patients would not rather have a doctor who considers them as a person with a unique personality, history and ecology rather than as a list of diseases with associated numerical goals. I’d also expect that a doctor who experiences more forest days would find his or her work to be more rewarding.
[i] I realize this is a terrible term. Suggest a better one and I’ll edit this, cite you, and link to the website of your choice!)
On Aug 22, 2022, Anthony Fauci announced he would be retiring by December of this year. Dr. Fauci was the head of NIAID for several important decades, where many great discoveries were made. His work during the George W. Bush years to help control HIV in Africa is truly worthy of praise and admiration. At the same time, his policy choices during the pandemic will ultimately define his legacy. Fauci was the architect of lockdowns; He supported school closure in 2020 (he criticized DeSantis for reopening), His stinging rhetoric against schools would keep them closed in blue districts for 18 months; He flip flopped on masks and herd immunity; He favored one size fits all booster policies and vaccine mandates; He played a role in many other major decisions. Ultimately, these actions will define his legacy far more than anything that came beforehand, simply because these decisions will affect more lives.
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A few years ago, a small anecdote went viral, during the peak of Fauci-fandom, but I didn’t see commentators put their finger on the interesting bit. Instead, a colleague called me to point it out, a few days after the post. Pls read.
The colleague said, with all due respect to Fauci, the letter contains several elements of narcissism. Fauci goes out of his way to mention that he didn’t just read 2 senior theses this year, they were theses from Harvard. He hasn’t just given a commencement address, he gives so many ‘commencement addresses’ that he likes to reuse themes. He makes a point to mention that he will be talking with the President again. The whole letter was unusual, infused with the excessive praise, which seemed both over-the-top and servile.
At the time, I didn’t think much of my colleagues comment, but as the years unfolded, I realized he was likely quite accurate. Fauci’s actions throughout the pandemic do displayed several elements of narcissism. He chose to hold onto his position as NIAID director for decades, perhaps because he liked the position’s power. News stories described him as a frequent guest at Washington insider parties. He certainly enjoys hearing himself on television, as he accepted countless invitations, perhaps hundreds or thousands.. And he agreed to more photoshoots than I can keep track of.
Narcisism is not always bad. It can help a politician have the confidence to take bold actions at trying times. But, for a scientist is is a dangerous trait. It leads one to motivated reasoning. It leads one to try to silence dissenting voices (as Fauci famously did.)
Ultimately, Fauci (aged 78-81) personally influenced the most devastating policy choices of the pandemic, mentioned above (lockdown, closure, vax mandates). In each of these instances, these choices were made far beyond evidence. A neutral scientist would have been more cautious— both for dismissing masking (in early March 2020) and for promoting it (in April 2020). A neutral scientist running NIAID would have commissioned a cluster RCT to answer the question; It takes a certain personality trait to lie (either the first or second time with respect to masks), and think that the public and media will forgive you, and you can continue to be spokesperson.
Some of Fauci’s quotes have not helped, “They’re really criticizing science because I represent science.” and “What I symbolize in an era of the normalization of untruths and lies and all the things you’re seeing going on in society, from January 6 to everything else that goes on, people are craving for consistency, for integrity, for truth.” January 6 was a terrible day in this nation’s history, but Dr. Fauci is not the symbol for truth. He has lied at least twice, per his own admission. Each one was big enough to be disqualifying.
Fauci still enjoys the position of darling of the media, including bizarre one sided pieces like this from Nature, but that will change. As time wears on, and the harms of his policy choices grow, public sentiment will shift. Many who agreed with him will forget their agreement, and all of us will remember the massive harms of school closure and lockdown. I suspect future bills will be passed for term limits at NIAID and other NIH agencies. Ultimately, Dr. Fauci remains a careful and charismatic politician, a scientist cursed by narcissism; so sure he was right, he would be unwilling to hear voices that tried to warn him, even as he led us all, off the cliff.
I don’t necessarily agree with Hannah Gadsby on everything- probably not on much -but I appreciate her putting her experience with autism out there. I have much to learn about the condition. mrossol
The Gardian, 3/19/2022, by Hannah Gadsby
You don’t have to be an expert to know that people with autism don’t get to speak about their own experiences. Until very recently, autism has largely only been understood through the prism of the experience of parents and as a list of observations that mostly neurotypical medical professionals have made and assigned meaning to.
The myths around ASD (autism spectrum disorder) have wasted enough of my life, so I don’t really want to waste any more of my time thinking about them, much less writing them down. But as the myths are so firmly embedded into popular (mis)understanding, I don’t have the luxury to skip over them, so it is just a sad reality that I have to waste even more of my time to bring many of you up to speed.
For a long time, I worried that I’d been misdiagnosed. It was difficult to believe that I wasn’t entirely to blame for my life being such a painful struggle, because I was so used to assuming I was a bad person. It took me a long time to get brave enough to simply share my diagnosis. My experience did not match the popular understanding of autism, and I knew I had to become an expert in neurobiology in order to untangle the myriad myths surrounding autism – just to beg permission to claim that piece of my identity.
I was right to be cautious, because when I finally did start telling the world of my diagnosis, the dismissals came thick and fast. I was told I was too fat to be autistic. I was told I was too social to be autistic. I was told I was too empathic to be autistic. I was told I was too female to be autistic. I was told I wasn’t autistic enough to be autistic. Nobody who refused me my diagnosis ever considered how painful it might have been for me, and it got really boring really fast.
Ever since I can remember, my thoughts have been plagued by a sense that I was a little out of whack, as if belonging was beyond me. To give this feeling a story, it’s as if I am an alien who has been abandoned on Earth and left to muddle my way through life, without a reason, a mission, or any memory of home. If you are a conspiracy theorist, this is where you begin to wonder if I might perhaps be a lizard. I am not.
I am a visual thinker. I see my thoughts, but I don’t have a photographic memory, nor is my head a static gallery of sensibly collected thoughts that my brain curates into easy sense. It is not linear. It is fluid and flexible, kind of like a private Wikipedia that I am constantly revising and editing, but instead of words, everything is written in my own ever-evolving language of hieroglyphic films filled with hyperlinks to associated and often irrelevant thoughts. I have never managed to develop a reliable system to file and separate my thoughts into individual think pieces, and so I am utterly incapable of having one thought without at least another hundred coming along for the ride.
Further complicating this issue is the fact that my brain doesn’t work in the realm of the abstract. I’m not capable of thinking with imagery that I haven’t seen with my own eyes, which means that when someone tells me a story, I will see it as something like a film that I must edit together out of all the other films sourced from my own internalised collection. Every single day I have spent on this Earth, I have added countless images to my brain library. Needless to say, it is very busy in my head. If it were possible for someone to catch a glimpse of my thoughts being processed, they’d be hard-pressed to make sense out it. I doubt they’d even believe that the tornado orgy of wingdings and gifs was anything other than gibberish.
Sadly, the enthusiasm that my brain brings to the collecting of visual records is not then applied to the filing and retrieval process. And because of my inability to quickly and efficiently translate what I see into an externally communicable format, I am wired to have lots of fun and adventure in my head while at the same time failing totally, utterly and miserably at life on the outside, and feeling profoundly alone.
I believe that it is this whirl inside my brain that contributes to my occasional inability to speak. To be clear, I don’t identify as being nonverbal, but I often lose my verbal ability. Especially if I am overwhelmed by a lot of sensory information at the same time as I am trying to identify, process and regulate emotional distress. This is what is called selective mutism, which commonly exists alongside ASD, but is not exclusive to it.
When I told Mum I was autistic, she said: “Yeah, that makes sense. I always knew there was a lot going on inside you, but I just couldn’t get in. You were like a tin of baked beans and my tin opener wouldn’t work on you.” It’s a tidy metaphor, especially if you know that Mum does not like baked beans.
My childhood was a serendipitously effective buffer for the worst that my ASD threw at me. Small town. Not a lot of change. My family unit was a ready-made social network that I didn’t have to navigate cold because I was just a part of it. They looked out for me, but, because we were a big family, no one really noticed if I didn’t talk. I was the youngest, so no one expected me to be a leader. No one noticed when I would disappear for hours, and no one thought much of my habit of taking frequent naps in the linen press. I wasn’t quirky, I was just Hannah. Nobody thought I was special when I memorised every single question and answer in Trivial Pursuit. Because I wasn’t special; everyone cheated one way or another. It was only when I stepped out of the bubble of my family that things went to shit. And, gosh, to shit they went.
I struggled to grasp even the most basic of life’s skills. In my first year of primary school, I forgot to wear underpants so many times that my family started to check me at the door every morning before I left. I assumed I’d get better at stuff as I got older, but it only got worse. And the older I got, the less amused people were by me.
During my adolescence I began to find it more and more difficult to make myself understood, and that is when I developed an instinctive habit of taking the blame whenever I didn’t understand what was going on around me – which, to be clear, was all the time. This struggle persuaded me to assume that I was unlikable, and eventually I stopped thinking about the world through the lens of my own needs. And anybody who is a human knows that this is not a recipe for good times.
I used to fret about fitting in at school, not because I wanted to, but because I knew I was supposed to. I was at my happiest in my own company, which I took to be an abnormality. It never occurred to me that it could be the epitome of normal behaviour – for me. I was a “girl”, and girls were expected to be masters of the mingle, so I tried really hard to be normal, but it was a fool’s errand because my neurobiological situation makes it hard for me to “see” all the networks of undercurrent connections that drive the interactions of the more typical thinkers, which in turn makes it incredibly difficult for me to intuitively reflect peer group behaviours. So the best I could do, and continue to do, is observe, guesstimate and imitate, which is often referred to as “masking” in autistic circles. As a coping mechanism for teenage me, masking was an incredibly successful tactic – I was only bullied intermittently during my school years – but as a catalyst for growth, it worked more like castration.
By the time I was middling my 30s, I was no longer living my life. I was merely coping with it, and barely. I felt as if I was a supreme annoyance and a burden to anybody I spent meaningful time with. But nobody seemed to notice that I had major depressive episodes every other year, and debilitating anxiety the rest of the time. Not even me. Nobody noticed that I never made eye contact. Nobody noticed that I often spoke in a patchwork of collected phrases. It took me a long time to even spot those patterns of my own behaviour, because I was too busy trying not to do the wrong thing by guessing, pretending, panicking, then either shutting or melting down.
My meltdowns had always been a mystery to me, so when I was finally diagnosed, I was able to reframe the way I thought about my strange little outbursts. For a start, I became far more compassionate toward myself, which probably halved the distress of the occasions. In the scheme of my life, I have not had very many meltdowns, however. I’m more of a shutdown kind of autistic. From the outside, a shutdown looks very similar to a sulky tantrum, but it is nothing of the sort. I don’t have control, for a start. And I am certainly not ruminating on any kind of emotional narrative, because I have gone into fight or flight, but in my body that translates into neither fight nor flight; I just shut down like a maxed-out power grid in the middle of a storm.
Meltdowns are equally distressing, but for different reasons. The worst is knowing that I am out of control, and may accidentally injure myself or, worse, someone else. Meltdowns are often conflated with panic attacks, but they are not the same beast. The biggest difference between them is that a panic attack is agitation and fear, spinning on a kind of mind loop, whereas a meltdown is a maelstrom that begins in the body. Another important difference is that a panic attack will never resolve the anxieties that triggered it. Meltdowns, on the other hand, are a real spring clean. They clear the pipes and can often leave you feeling as if your body has been reset.
I wish more than anything that I had known about my ASD when I was a kid, just so I could have learned how to look after my own distress, instead of assuming my pain was normal and deserved. There is no one to blame, but I still grieve for the quality of life I lost because I didn’t have this key piece to my human puzzle. But until someone unlocks the riddle of time travel, little me will have to flail and fail their way through the world for 30-odd years.
I see a fault in the idea, put forward by neurotypical “experts”, that autistic people have mind blindness, which essentially suggests we are unable to understand the inner workings of other people. I believe we all have mind blindness; why else would we invent language? The only way to see another person’s mind is to find a way to be able to hear what they have to say.
The problem is that communication skills are developed atypically in autistic people and, most often, very slowly. I have always had difficulty articulating my needs, but as I have got older, my language and social skills have improved a great deal. My ability to regulate, however, has not, and nor have my sensory sensitivities. My eternal struggle with these distressing disabilities often gives the impression to others that I am moody, reactive and inconsistent. I say I want one thing, then moments later I will say that I need the opposite. This is not a reflection of my character, but rather a reflection of my neurobiological functioning. I am unable to intuitively understand what I am feeling, and I can often take a much longer time to process the effects of external circumstances than neurotypical thinkers. But it is they who get impatient with me, and under that pressure I feel forced to guess my needs before I have had time to process stuff in my own way, and so mistakes are made. I can be cold and not know it. I can be hungry and not know it. I can need to go to the bathroom and not know it. I can be sad and not know it. I can feel distressed and not know it. I can be unsafe and not know it. You know how sometimes you put your hand under running water and for a brief moment you don’t know if it is hot or cold? That is every minute of my life. Being perpetually potentially unsafe is a great recipe for anxiety. And – spoiler alert – anxiety is bad.
Once I understood that I was always going to have difficulty with self-regulation, I stopped worrying about it. Once I am distressed, my moods are not mine to control, but my environment is. I am always working to remove myself from all the cycles and patterns of hostile environments. I no longer search my behaviours exclusively for revelations about my character; I use my occasions of distress as ways to map the circumstances and environments I move through, and look for ways I can reduce my exposure to distressing situations. I have learned how to advocate for my own experiences instead of being ashamed of my pain and confusion. I stopped worrying about what I was expected to do, and worked on building an understanding of what I could do to make myself feel safe and calm.
I am not afraid of pressing pause during a television show when I feel distressed. I seek out spoiler alerts to avoid getting panicked by unexpected plot twists. I leave crowded spaces. I switch off discordant music. I wear headphones at restaurants. I openly express my hatred of the saxophone and electric guitar solos. I don’t allow important emotional conversations to take place in cafes with polished concrete floors.
I spend hours alone at home rearranging my little piles of bric-a-brac, because it’s really fun. I only wear blue clothes because blue makes me feel calm. I listen to the same music, watch the same shows, and eat the same foods over and over again without any qualms. I find joy in my life where once I couldn’t because I was too busy trying to do the “right” thing instead of checking in with my own needs first.
I am lucky. I have the privilege to be able to protect myself – now. But it’s not because I can do it on my own. I need help. There is not much about my life that is not looked after by another human, sometimes teams of them. That’s the beauty of success in show business: other people become quite keen to do all the things for you. I am basically a middle-class white man from the 1950s.
But even if I hadn’t stumbled into success, I would still need a lot of help just to navigate life. It is absolute bullshit that the only way I could access the help I needed was by accidentally activating some kind of exceptional potential I didn’t even know I had until I was nearly 30 years old. Please stop expecting people with autism to be exceptional. It is a basic human right to have average abilities.
Most people who struggle to find stable employment also contend with things like intergenerational poverty and/or trauma, cycles of abuse, mental illness, systemic discrimination, disability or neurological disorders. Not only are these all chronically stressful and traumatic circumstances, they have all been linked to a high incidence of impaired executive function. Welfare systems are not built to be easy for people who are anxious about using the phone, or people who mix up dates. They are not designed for people who are bad at keeping time, filling out forms, or people who can’t easily access all the relevant bank, residential and employment details from the past five years, if they thought to keep that information at all. Welfare systems don’t accommodate transience because welfare systems are not built to be accessible, they are built to be temples of administrative doom, because, apparently, welfare is a treasure that must be protected. Can somebody please do something about that? I am not good enough at organising to be an actual activist. But searching for the connections between the big picture and the little picture is a very ASD thing to do. I am never not cross-referencing the trees with the forests, and it can be a very exhausting way to engage – but I wouldn’t change it for the world, because I believe communities need thinkers like me.
The U.S. Centers for Disease Control and Prevention (CDC) has lowered its standards of childhood speech development, a decision that has many people worried about the way milestones are measured in kids.
CDC added two new child development milestones at 15 and 30 months. Earlier, children aged 24 months were expected to know about 50 words. But in the new update, the CDC raised the time period to 30 months, lowering the established standard of speech development. In the update, the CDC linked to research published by the American Academy of Pediatrics (AAP) that influenced the organization in setting up the modified benchmarks.
“Application of the criteria established by the AAP working group and adding milestones for the 15- and 30-month health supervision visits resulted in a 26.4 percent reduction and 40.9 percent replacement of previous CDC milestones,” reads an abstract of the AAP study, published on Feb. 8.
“One-third of the retained milestones were transferred to different ages; 67.7 percent of those transferred were moved to older ages.”
The AAP, based on recommendations from the CDC, convened experts and revised child developmental checklists. The original milestone followed standards that only 50 percent of children were expected to achieve, the organization said. These guidelines were deemed unhelpful to families who were worried about their kids’ development.
Milestones were updated to ensure that at least 75 percent of kids are able to achieve them, according to Jennifer Zubler, an author of the study. Because many children were unable to achieve the previous milestones, it was decided to establish new, lower milestones.
Literacy advocate Karen Vaites points out that, according to the American Speech-Language-Hearing Association, children speaking fewer than 50 words by 24 months is still a worrisome situation. She had previously spoken against forcing kids to wear face masks amid the COVID-19 pandemic, highlighting the negative effects that the masks have on speech and learning.
“Masks impede language development, and they also impede the process of kids learning how to read,” Vaites said in a Jan. 18 tweet. In another Twitter thread from late July, she shared her experience of observing a kindergarten room during a reading class; in the thread, she insisted on the importance of children seeing the movement of a teacher’s mouth and vice versa.
In some situations, parents and clinicians choose a wait-and-see approach regarding children’s development, which ends up delaying diagnosis.
“The earlier a child is identified with a developmental delay the better, as treatment as well as learning interventions can begin,” Paul Lipkin, a member of the AAP Section on Developmental and Behavioral Pediatrics and Council on Children with Disabilities, said in a statement. “At the same time, we don’t want to cause unnecessary confusion for families or professionals. Revising the guidelines with expertise and data from clinicians in the field accomplishes these goals.”
Lea Themea, who has practiced speech pathology for close to three decades, believes that the CDC guidelines have been updated to better clarify what parents should look for as developmental progress in their kids.
“I think these guidelines look at how the language is used, because you could have a 2-year-old that can label all their colors and count to 10, but they’re not saying them to actually communicate,” she told ABC6.
Dr. Nicole Saphier, a Fox News medical contributor, drew parallels between the CDC quietly lowering speech standards to an incident from last summer, when the AAP began “deleting stuff” from its website about the importance of facial recognition in childhood development while also pushing masks on children.
Saphier insisted that face masks were “negatively impacting children” and cited studies conducted in the UK, United States, and the Netherlands to point out that kids during the pandemic are performing poorly on “gross motor skills, fine motor skills, and overall communication.”