Siderea, Sibylla Bostoniensis

In the spring semester of 1987, a high school biology teacher told my class:

1) In the early days of psychiatric research, it was believed (by somebody) that whatever called schizophrenia also caused bruising of the body. This was investigated by doctors, no doubt in the hopes of identifying an infectious agent (as in syphilis) or toxicological agent (as in mercury poisoning). Eventually it was figured out that the reason schizophrenics tended to have bruising was because orderies were roughing them up when the doctors weren't around.

2) That she herself had been somehow involved, in college, in a research project that thought it had found structural irregularities in the muscles at the level of the sarcomere in people with schizophrenia: something about untidy Z-lines. Knowing what I know now, the idea of somebody having found a biopsiable biomarker for schizophrenia is frankly incredible.

Can anybody confirm or deny either line of research existed? Does anybody know anything about either story?

Canonical link: https://siderea.dreamwidth.org/1351829.html

0.

D had something of a medical crisis last month, which stirred thoughts I mostly try not to have about how medical care works in this country, because they're simply too personally frightening, and there doesn't seem to be much I can do about it.

For those just tuning in, D is the ninety year-old mother of my partner, tn3270. She just last month moved to an assisted living facility. I'm going to be cagey about the specifics of her medical conditions, because that's personal and, honestly, those details are immaterial.

I previously mentioned that D had surprised us by announcing at the intake meeting, on her first day at her assisted living facility, that she wanted her medication administered to her. She had begun to suspect herself of messing up her medications, and felt it would be safer to delegate that responsibility to staff, which is totally a thing assisted living facilities do. This was a relief to tn3270 and I; I had already surreptitiously looked into the price of that added service, anticipating that it was going to become necessary. We did not expect D to come to that conclusion independently, much less have already done so. We were all in favor of this.

( There was a complication. [7,520 Words] )

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D's insurance sent us a letter and brochure for a program they have that they're inviting her to participate in, run by a third party called Landmark Health, that provides house-call based medical care, including urgent care. Yes, on-call MDs who can swoop in to see you at your home on an hour's notice.

I called them today to learn more, and apparently they're new to the area (March or April this year – I don't know if that's all Massachusetts, or just the north shore) but not to the biz (they're in other states).

Has anybody had dealings with them? Are they any good? Do their services live up to their advertising copy?

According to everybody and everything, it's 100% covered by her insurance (a Medicare plan) and would incur no cost to her. Any reason anybody knows for not just availing her of it?

The conference is over, and I am super tired and omg why do my feet hurt? I didn't do that much walking, and indeed spent most of the last three days sitting. The physical spaces the conference was held in were agreeably compactly laid out, so I didn't have do a lot of hiking down halls to go from one session to the next. But I feel like I've walked for miles.

I'm being cagey about the identity of the conference because of reasons. Suffice it to say I spent three days getting my radical on with people who, hmm, could be said to identify as "psychiatric survivors" – people whom the mental health system has done profound harm and violated their human rights – from around the world, many (most?) of whom might be described as activists and there in that capacity, some of whom are also clinicians or ex-clinicians or psychology researchers. Lots of very explicit intersectionalism and inclusivism. Very emotionally intense, super intellectually stimulating, enormously morally compelling.

Since the default assumption at the conference was that attendees were psychiatric survivors, I was "out" about not being a psychiatric survivor myself but a mental health professional and there as an ally. That was... a very hard experience to describe. To do such a thing, and do it ethically, is extremely demanding of energy, because it entails such a high level of self-monitoring and attention to others, at literally every second. Yet at the same time, it was so wildly validating of my ethical values as a person and a clinician, in ways I hadn't even realized I was hungry for, it felt very spiritually nourishing and emotionally supportive. I realized after the second day that just in the program book and in the presentations I'd attended, that I'd heard the word "humanistic" more times in those two days than I'd heard it used by anybody not me in the previous five years. Or maybe more. I'm a humanistic therapist, and I'm literally welling up again just reflecting on that, and how clinically-philosophically isolated this reveals me to have been. And, my god, the first, like, three times the term went zipping by I thought, Hey, do they know what that means, technically, to a therapist? Ah, they're probably just using it as a synonym for "humanely", as lay people usually do. And it became clear that, no, at least some of the people using the term really did mean it clinically. And I was like Oh. They don't need me to explain it to them. They already know. Which, is, like, the fundamental unit of being understood. Talk about your being called in from the cold.

I went to this conference thinking of myself as an ally, someone there to support another people as they do their thing – an in a really important sense, that is exactly right – but to my surprise, I discovered that these people, despite not being clinicians, were clinically my people. I wound up doing a hell of a lot more personal sharing than I would ever have expected – certainly vastly, vastly more than I have ever done in a mental health professionals context. It was like, I suddenly realized I was in an environment in which I could talk about how furious I am that I am forced to use diagnoses on patients without their consent, how frustrated I am by how the bureacratic systems in which I must work compromise the integrity of the treatment I try to provide, how disgusted I often am by the conduct of colleagues and mental health institutions (I discovered the wonderful expression, "psychiatric hate-speech"), how indignant I am at all sorts of idiocy and injustice and unfairness in the system – all the things I am so careful never to say because of how poorly my colleagues may take it. (Not my imagination: The last session I attended drew quite a number of clinicians, who were all "AND FOR ANOTHER THING!"; the presenter afterwards told me she had presented the same talk at a conference on the philosophy of psychiatry for an audience that was half psychiatrists, and, in contrast, they were furious with her for her temerity.)

I got to have conversations about capitalism and disability, culture and identity, the history of psychiatry, the history of nationalism, what you can and can't do inside the health care system, other countries' nationalized (or not, where mental health is concerned) health care, and how money affects mental health care; I heard a slew of what I would call "mental health radical coming out stories". I met someone who is as into the history of the DSM as I am, and someone who has written an academic article about the ethical and clinical problems of diagnosis. I got politely chewed out once, early on, for using oppressive language, and then immediately apologized to for it, them saying ruefully that they have "a chip on [their] shoulder" about mental health care professionals and shouldn't have talked to me like that, and I assured them I was there to be chewed out and have my vocabulary corrected and was fine with it; I'm pretty sure they were way more upset about what they said to me than I was, and I feel bad about putting them in that position by my ignorance – but we've exchanged phone numbers and I'm hoping I might yet make it up to them.

There was a point where somebody asked me something like whether I had been learning a lot at the conference so far, and I thought a moment and replied that I had, but, "I am at this conference not just to learn things. I am here because, as a person and a clinician, these are my values."

So it was an experience that was weirdly simultaneously hard and easy. If you had asked me four days ago I would have said that it's probably impossible for an experience to require a very high level of scrupulous self-monitoring and yet feel welcoming of and safe for emotional vulnerability and risktaking. Yet that was precisely my experience.

It was demanding and beautiful and powerful and huggy and astonishing and uplifting and I'm exhausted and weepy and have like twenty new best friends.

Local clinicians: I just got the mailing for this fall's Harvard Med Psychiatry Dept CE trainings, and at the Dec 1 & 2 session "Treating Couples", kinda buried in the list of presenters are Esther Perel and Terry Real. It's astronomically expensive, like all Harvard Med's stuff, but if you're a sufficiently hardcore fan, there you go. (Some of the other names on this list may also be famous people I don't recognize.)

1) I feel the need to share that the lamp in question, I got from Aunt C – who spent her entire working adult life making lightbulbs for Sylvania. The fact that I can't manage to find adequate working replacement LED bulbs his is either the most ironic or most appropriate thing ever.

2) Okay, I'm now in correspondence with the manufacturer of one of the sets of 5W bulbs that didn't work. They asked about the competitor bulbs that worked, and said they will scare some up to compare with their product. ETA 8/13/17 11:10PM: I have just got a full refund and a thank you note for supplying such detailed information, which is being passed on to the R&D team.

Of particular note to my fellow geek clinicians: just published in the US was Superhero Therapy: Mindfulness Skills to Help Teens and Young Adults Deal with Anxiety, Depression, and Trauma, by psychologist Janina Scarlet, PhD.

It draws unapologetically on her own personal experience of identifying with the X-Men to heal from the trauma of radiation poisoning, subsequent chronic illness, being a refugee, and being bullied.

I haven't read it yet, just excerpts, but it looks lovely. Illustrated by Wellinton Alves of Marvel and DC.

(h/t Metafilter)

Ah, the trials and tribulations of garage bands. The bickering. The struggling for bookings. The desperation to get noticed by industry decisionmakers. The unexplained discharge of huge electromagnetic/nuclear forces.

A short "sci-fi rock-and-roll adventure" film about a small band with a big problem: an inexplicable tendency to burn down the house. Literally. [13 minutes, Vimeo]

Re https://siderea.dreamwidth.org/1346320.html, particularly the Press Ganey survey:

Oh, right. Questions about wait times, questions about courtesy, questions about cleanliness, questions about communication.

No questions about efficacy of or satisfaction with the medical care. To say nothing of more specific questions about what care was provided.

I mean, just a simple, "Was this appointment helpful to you?" would be nice. Also questions along the line of "Do you feel your medical problem successfully addressed?" and "Were you told what, if anything, you need to do for follow up care of your medical problem?" might be nice.

Because as it stands, nothing in the questionaire I got would have captured my discontent at certain appointments I've had where the treater was useless – "Don't know what's wrong with you, can't help you, can't think of anybody to refer you to. Good luck, have a nice life." – but by gum saw me on time and was polite.

But I don't think they want to know the answers to those questions. If they're doing with these surveys what that ethnography described, well, then, they're not interested in solving medical problems. They're interested in solving lucrative medical problems, which means dismissing expensive time-consuming mysteries from their offices as quickly and expeditiously as possible. As such, the answers to asking patients, "So was your condition actually treated?", is perhaps not a comfortable thing to contemplate.

Me, in A Two-Level Attitude, (Sept 7, 2015):

For instance, while I think this whole selling my (medical) services on the open market thing is keen like whoa, there's nothing about subjecting me to market forces that makes me a better clinician.

Quite to the contrary, pretty much any financial incentive puts my interests in conflict with those of my patients. The standard business model, payment per session, incents the treater to the extent the patient still requires services. Put it crudely, that system only pays me as long as the patient is sick, so there's an incentive to treat poorly and slowly!

This is a well-known failure mode of that business model, the industry-standard term for which is "fee-for-service". So a lot of people have tried to come up with alternatives – and all have had similarly awful consequences. Payment for constrained terms (time/service limits) results in treaters treating what they think they can in that time, and declaring success, rather than addressing the patient's presenting problems. Payment for treatment success (e.g. fixed price) results in providers discriminating against hard-to-treat cases – the very patients who most need help. Payment for treatment success moderated through an assessment of how difficult to treat a condition is leads to diagnostic inflation and, where third party payers are involved, diagnostic deflation ("You're not really depressed, you are just having a bad day. Eight sessions should be enough for you.") It also marches right into the weeds of breathtaking coordinative communications costs.

As best I can tell, it's my professional responsibility to (attempt to) put money completely out of my mind when treating patients, so my interests aren't pitted against my patients' – because there is no incentive system which doesn't jog my elbow and cause a conflict of interests.

Michael J. Oldani, "Assessing the ‘relative value’ of diabetic patients treated through an incentivized, corporate compliance model" [Full text PDF], in Anthropology & Medicine, 17(2), August 2010, pp215-228:

Many primary care clinics in the United States have already introduced their own forms of healthcare reform and have begun to ‘incentivize’ doctors to do the right thing. Interestingly, one way these clinics have defined and instituted doing the right thing is by weaving doctors and patients together into a perpetual state of ‘medical compliance.’² Compliance in this model is multidimensional and focuses on two interrelated areas: ensuring patients maintain their adherence to treatment plans, including prescription pharmaceuticals, and ensuring doctors adhere to clinic and hospital compliance measures in order to secure insurance payments and literally ‘to be in compliance’ with institutional/corporate goals and federal regulations. Incentivization specifically means paying physicians that are deemed ‘in compliance’ an end-of-year ‘bonus’ – a calculated sum of money based on ‘the numbers.’ [...] This paper reports on how this incentivized system can work in everyday clinical practice.

[...]

‘Dr. Shelby,’ who the author has known for six years, expressed concern during an initial ethnographic interview regarding ‘where her clinic was headed with their compliance program.’ In 2006, the clinic had chosen ‘diabetes management’ as its target disorder for, what she described as ‘a dual compliance’ program (As described above, she meant an integrated program that works to keep both doctors and patients in compliance.). She interrupted the interviewer at the first mention of the word ‘patient’ and said: ‘in our clinic, it’s not about the patients, it’s about the numbers...’
[...Interesting history of the concept of Relative Value Units and their application at Dr. Shelby's clinic elided...]

The goal for Dr. Shelby and other doctors working within this system is to total a high number of WRVUs and ‘max out’ the dollar multiplier in order to max out the year-end bonus. [...]

If Dr. Shelby can keep her diabetic patients, and in her case she was most concerned with Type II diabetic patients, within certain parameters related to patients’ LDL, Micro-Albumen, and Hemoglobin A1c levels, she will maintain the 25 cents of the one dollar bonus multiplier. At the time of our interview in 2006, Dr. Shelby was not in compliance with the ‘Quality of Diabetes Care’ initiative. She explained that she had ‘too many new patients’ that were coming to her with unusually abnormal levels of LDL, Micro Albumen, and HgA1cs – that ‘were keeping her numbers down.’ She explained: ‘so if somebody comes to see me with a HgA1c of 18.00 and my average has to be under [7.3] to be ‘in compliance’ it will take three or four patients of with an HgA1c of ‘five or less to get with in the average.’ Dr. Shelby had all these numbers and calculations ‘running in her head’ during her clinic hours, and, she felt it was important to point out to the ethnographer in a reflexive moment that ‘she did not like thinking about her patients in this manner.’

[...]

In 2006, the PCI system at Dr. Shelby’s clinic is in the early stages of implementation. In Dr. Shelby’s specific case she doesn’t even open the ‘PCI Incentive Plan Reports’ anymore – she ‘throws them away.’ [...] Nevertheless, she realizes that a structured plan is now in place to carry out and advance an incentivized, multi-level compliance program. The long-term goal stated by her clinic manager was to get ‘diabetes under control,’ not just at the level of the patient, but collectively, at the clinical level. Clinic managers have also indicated that new diseases and disorders (e.g., hypertension, hypercholesterolemia, asthma, etc.) will eventually replace diabetes (or be added to the system) and become a new factor in the 25 cent multiplier. [...]

Behind-the-scenes, this compliance system is most often discussed and criticized by clinic doctors through electronic emails and private conversations. Dr. Shelby and many of her colleagues realize the system is structured to ensure financial viability – that was obvious to her. She noted one particular set of email exchanges because it revolved around the email subject heading that compliance was ‘all about the money and billing.’

Dr. Shelby provided a telling anecdote from these exchanges to illustrate her point further. Email exchanges evolved between clinic colleagues regarding diabetic patients with ‘problematic numbers’ that were distorting bonus pay up and down the pay scale. [...elided: examples of data hygeine faults resulting in erroneous bonuses and random chance penulizing physicians who get an influx of hard cases all at once...]

Worse yet to Dr. Shelby, would be the patient cases where ‘in reality’ the diabetes is under control but the numbers indicated otherwise. She provide a hypothetical case, which illustrates the controversy around ‘tight control’:⁹

[its] the issue of numbers versus people. I may have a patient who is on two oral medications for diabetes, blood sugars are reasonably well-controlled, but A1C test is 7.2%. Generally, adding a third medicine doesn’t give you a lot of bang for your buck, so to get better control, [that is] better numbers, you would have to add insulin shots or someone would need to lose a ton of weight . . . or become vegan . . . So, in the world of compliance, this patient is not well-controlled, because we know this person is past the breakpoint (7% for A1C) where there start to be more complications, but taking the whole picture into account he/she is in fairly good shape. For something like [type II diabetes], we look just as closely at BP (blood pressure) and lipids as blood sugar, so those play into the decision-making. Another patient may have the same A1C, but some easy adjustments to make to be less than 7 . . . My 2 cents on the issue.

The main problem being higher numbers would jeopardize compliance and ultimately year-end bonus pay out.

These email exchanges on the topic led a member of the clinic team to share a real case: this doctor wanted to know what to do with ‘a diabetic, mentally retarded patient that had ‘a HbA1c of 13, that never comes down,’ but the doctor’s ‘relationship with him is important enough and we work on [managing diabetes] with social workers and case managers . . . what am I supposed to about [this patient]? Can I throw him out of my numbers for the bonus?’ In short, the doctor wanted to know what they should do when engaged in good patient care but generating bad patient numbers?

An email was sent back to the entire group of doctors from the physician who was then running the Primary Care Initiative (PCI) for diabetes at the clinic. In the text the PCI director stated: ‘if patients are bringing down your numbers you can discharge them from your practice.’

Sic.

[...]

The model of a multi-level, incentivized compliance program is becoming an everyday reality in American medicine. One umbrella term for the movement is the ‘pay-for-performance’ clinical model (see Rosenthal et al. 2005, for a recent discussion). These models are very similar to the model employed by the National Health Service (NHS) of Great Britain. Primary care doctors, who are the ‘gate keepers’ of this one-payer system, can earn a bonus of up to the equivalent of 150,000 to 200,000 US dollars (on top of a year salary that matches US primary care doctors). Similar to the PCI program, incentives in the NHS program are based on patient compliance to treatments as well as preventative measure and prescriptive therapies.¹¹ One thing that has become clear in the NHS system is that doctors do find ways to exclude patients from their practice. In fact, in the English pay-for- performance system ‘exception reporting’ was originally set up to safeguard patients against ‘physicians seeking to maximize their income.’ However, this reporting has had the reverse impact: ‘allowing physicians to inappropriately exclude patients for whom targets have been missed,’ a practice known (within the NHS) as ‘gaming’ (Doran et al. 2008).

[...]

What remains disconcerting about the PCI system, and the NHS for that matter, is that even as the incentivized system works to improve patient adherence to chronic disease management and thus improve patient health and well-being, it can simultaneously work to dehumanize and marginalize the so-called ‘noncompliers’. [...]

[I]n total compliance systems based on incentivization, the stakes are raised for unknowing and unsuspecting patients. Gaps emerge within and between the numbers of compliance for patients. Today, and in particular in the future, for clinics that adopt this type of system, it will not be good enough for a patient to be in a state of medical compliance – meaning adhering to treatment plans, taking medication, adjusting lifestyles, etc. – a patient must have the right numbers to ensure total compliance for doctors and institutions. ‘The right numbers’ for patients in a threefold sense: first, patients must work with their healthcare providers to move metabolic numbers into the correct range, which should ensure less morbidity and mortality; second, patients (and doctors) must hope that the adherence to treatment plans correlates with the correct production of laboratory and test numbers; and finally, diabetic patients [better hope their cases have just the right complexity to get rated an RVU of 3 or 4, which are most lucrative for the clinic.]

In short, incentivized systems of total compliance create new forms of risk for patients, namely risk of exclusion. Gaming patients, to use the language of exclusion by NHS doctors, has a long history. [...] [In the 1950s], the American Life insurance industry was looking at chronic conditions as ‘studies of actuarial calculations on the proper management of life insurance premiums’ not with the goal of improving individual health, ‘but to exclude unhealthy (and therefore expensive) individuals from the insured population at the earliest stage possible’.¹² Today, we see a similar logic of patient exclusion emerging in total compliance systems. A simple, yet far-reaching risk for diabetic patients today is simply participating in an incentivized system that may determine, based on their numbers, whether or not they can maintain access to clinical care.

Oh, and one of the things I elided above? It explained the other three bonus multipliers at Dr. "Shelby's" clinic:

The second consisted of compiling the results of her ‘end-of-year Press Ganey Composite Report.’ Essentially, this is a survey sent out to Dr. Shelby’s patients, which gives them the opportunity to evaluate her clinical performance throughout the past year.

Lo, what's this in my email?

From: [Siderea's PCP's Office, Big Clinic Somerville] <noreply@patients.pgsurveying.com>
To: Siderea
Date: 1 Aug 2017 09:57:20 -0400
Subject: [Big Clinic Somerville] would like your feedback!

Dear Siderea,

Recently we had the opportunity to provide care for you at [Big Clinic Somerville]. We are committed to ensuring that our patients receive outstanding quality care and services. To accomplish this we survey our patients on an ongoing basis to learn from their experiences at our offices and with our providers and staff.

We would sincerely appreciate your feedback by completing the questionnaire that can be accessed by the link at the end of this email. If you have received this email regarding a minor child's visit, please complete the questionnaire on their behalf.

[Big Clinic Somerville] works with Press Ganey Associates, Inc., a leader in conducting patient surveys, to compile survey responses on its behalf. Your survey ratings will be combined with those of other patients into an overall rating and any comments you record on the questionnaire will be shared with the practice for our quality and patient experience improvement. Overall patient survey ratings and patient comments may also be displayed on our website anonymously.

If you have a concern about quality or safety at any time, please contact our Patient Relations Department at [phone number].

Thank you for helping us to continuously improve the care and service you receive at our practice.

Click here to begin your survey.