Articles of Neurological Interest

I have a long and growing list of “things to maybe blog about”, and definitely too little time to cover it all. Following are some interesting articles that I’ve read recently (i.e. in the last year) that may be of interest to neurologists. Enjoy!

‘You Want a Description of Hell?’ OxyContin’s 12-Hour Problem.  An informative L.A. Times investigation of the regulatory, marketing, and clinical history of OxyContin in the context of the growing public health problem of narcotic and heroin abuse.

Lost for Words. I really like reading popular descriptions of neurological diseases and the patient experience. They provide a richness that is usually absent from scientific writings and is helpful for recognizing less common diseases. This Atlantic piece describes primary progressive aphasia.

The Neuroscientist who Lost Her Mind. This is a briefer New York Times piece by the director of the Human Brain Collection Core at the National Institute of Mental Health. She describes her experience of having brain metastases.

Why I Hope to Die at 75. This Atlantic article is by Ezekiel Emanuel, a Penn oncologist and bioethicist. The title is a little misleading in that he doesn’t necessarily want to drop dead precisely on his 75th birthday but rather wants to transition at that time to a comfort-only approach to his medical care, even for easily treatable conditions. It’s a very interesting and provocative piece.

Are You Ready for a Glorious Sunset? If the above article wasn’t provocative enough for you, try this Freakonomics podcast: What if, when faced with a serious illness toward the end of life, your insurance company offered you a cash reward to forgo (expensive) life-prolonging care in favor of palliative care?

A Racial Gap in Attitudes Toward Hospice Care. A short, but informative, New York Times piece on the differing ethnic perspectives about hospice and end of life care.

Balancing Faith and Science in the I.C.U. A loosely-related theme to that above.

Hipaa’s Use as Code of Silence Often Misinterprets the Law. This New York Times piece examines several misunderstandings about the Health Insurance Portability and Accountability Act, or HIPAA.

Wastebasket patient. This essay is from the humanities section of the green journal. It provides a highly valuable lesson that one can sometimes make a difference even in the seemingly least promising cases. It’s a particularly important point for residents, bombarded as they are with consults of varying “appropriateness”.

The digital doctor: hope, hype, and harm at the dawn of medicine’s computer age. This one’s a book–one I enjoyed a great deal and highly recommend. It’s by Dr. Robert Wachter, a hospitalist at UCSF and one of the founders of that specialty. He writes about many facets of medicine that have been affected by computerization, especially electronic medical records. Many are quite obvious, such as the frustration of trying to input orders, clicking boxes, etc. Some are non-intuitive. One example: It used to be that medicine teams made a daily pilgrimage to the radiology reading room in order to review all of their patients’ chest x-rays, etc. Now that the images are available on PACS, this happens much less often. More generally, there is less interaction among the professionals caring for patients as each works in his/her computer-based silo–no more bumping into each other while looking for the same paper chart on the unit. This is just one of many interesting and important discussions of how technology is changing our profession.

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Educational Resources

Preparing for the maintenance of certification exam, I came across some very good educational programs on the AAN’s website. I think these would be good for resident education generally, and particularly for RITE preparation. They are free for AAN members, and I’ll add links to them in a new “Board Review” menu above.

The first program is called NeuroLearn. These are slide presentations on various topics, with audio narration and some interactive features such as built-in multiple-choice questions. They are like those really good grand rounds talks that provide a good overview of a topic without getting to much into the weeds of a particular line of research. I particularly recommend the following:

  • The Brachial Plexus. I found this to be one of the best presentations I’ve seen of this somewhat confusing material.
  • Interpretation of the Normal Adult EEG: Normal Patterns and Common Artifacts. A great primer for the neurology resident.
  • Cervical Spondylotic Myelopathy. J.D. Bartleson of the Mayo Clinic narrates this one, and he’s very engaging. He includes some videos of patient examinations and exam techniques, which are helpful.
  • Interpretation of Autoimmune Neurological Antibody Profiles. Not quite as engaging as the ones above, but still pretty good.
  • Paraproteinemia and Neuropathy. This is an excellent one–makes a sometimes confusing topic very clear.

The other program is NeuroSAE (self-assessment exam). These are question banks, mostly covering general neurology topics. There are topic-specific ones as well, covering epilepsy, neuromuscular, and stroke. The best way to improve test scores (as opposed to the best way to become a better neurologist) is to take tests. These questions are very similar to the questions in the back of Continuum (itself another great resource). I set it up to give feedback (i.e., explanations) after each question. You can also have it defer all of the feedback to the end and even have it time the test for you. Another cool feature is that works just as well on a smartphone or tablet as on a PC. I would sometimes start a test at the office and then work on it a little more at home and it did a great job of picking up right where I left off.

I found that it takes a while to answer each question and carefully read the explanation and maybe look up something to dive deeper into the topic. When I actually sat down to take the re-certification exam, I breezed through the 200 questions because in the real test, you don’t get a lengthy response that you have to read through after each answer!

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Nevada, Brain Death, and the AAN Guidelines–part 2

The last post discussed the first concern that the Nevada supreme court had regarding the American Academy of Neurology’s (AAN) guidelines on brain death–that they may not qualify as an “accepted medical standard” as required by the Uniform Determination of Death Act (UDDA). Now we turn to their second concern (starting on p. 17):

[W]hatever their acceptance generally, the briefing and testimony do not establish whether the AAN guidelines adequately measure the extraordinarily broad standard laid out by [Nevada’s brain death statute], which requires, before brain death can be declared under the UDDA, an “irreversible cessation” of “[a]ll functions of the person’s entire brain, including his or her brain stem . . .  A cursory review of medical research raises concerns about brain death testing comporting with [Nevada law]. (Emphasis added)

The medical research they refer to invokes some of the arguments discussed here previously, in the context of Jahi McMath’s case. For example, the maintenance of normothermia (actually a prerequisite for declaring a person dead using neurological criteria) and euvolemia (i.e., the absence of diabetes insipidus) implies intact hypothalamic-neurohypophyseal function. Interpreting the UDDA literally, a patient with any such remaining brain function could not be determined to have died. Needless to say, if this strict interpretation were widely adopted, it would be highly unsettling to now long-established practices regarding individuals with total brain failure (itself a misnomer) and heart-beating organ transplantation. Neither the AAN guidelines, nor the Harvard criteria, nor any other protocol that I’m aware of would satisfy the requirements of the UDDA.

So how did we get here? In the abstract, I think that the UDDA was based on an older conceptual understanding of brain death. Subsequent philosophical scrutiny and empirical data discredited that understanding in favor of different conceptual underpinnings, but the law hasn’t changed to reflect that. And now the Nevada supreme court has just highlighted the discrepancy.

Regarding the older conceptual understanding, consider the 1968 Harvard report: “Irreversible coma has many causes, but we are concerned here only with those comatose individuals who have no discernible central nervous system activity.” (boldface added). Then, in their landmark 1981 publication titled Defining Death, the President’s Commission further elaborated (starting on p. 32) what is known as the “whole brain” concept of life and death. This is the proposition that the brain functions as an integrator for all bodily functions and that when the whole brain is destroyed, somatic integration is lost and the person is dead. This is true even if modern technologies (i.e. ventilators) mask the evidence of death by allowing (for what was then thought to be no more than a few days) continued heart beating and other physiological activities.

Interestingly, the President’s Commission seemed to be aware even then that their “whole brain” formulation may not be strictly true. In a footnote (#4), they quote Dr. James Bernat, et al.: “. . . When the respirator maintains the organism, it is questionable whether there is complete and irreversible loss of the functioning of the entire brain. But this is a question to be settled by empirical inquiry, not by philosophy.” (Emphasis added).1Even more interesting is that the Commission went on to explicitly reject the need for more philosophical analysis: “While it is valuable to test public policies against basic conceptions of death, philosophical refinement beyond a certain point may not be necessary. The task undertaken in this Report, as stated at the outset, is to provide and defend a statutory standard for determining that a human being has died. In setting forth the standards recommended in this Report, the Commission has used ‘whole brain’ terms to clarify the understanding of death that enjoys near universal acceptance in our society . . . Further effort to search for a conceptual ‘definition’ of death is not required for the purpose of public policy because . . . the ‘whole brain’ formulations provide a theory that is sufficiently precise, concise and widely acceptable.” (Emphasis added). That there have been multiple recent court cases on this issue, including the Nevada decision, would seem to belie these claims. To their credit, the President’s Council on Bioethics, in their 2009 re-analysis of this issue, took the opposite position: “At the outset, it is important to note [that we] reject the idea that death should be treated merely as a legal construct or as a matter of social agreement. Instead, [we] embrace the idea that a standard for determining death must be defensible on biological as well as philosophical grounds.” And indeed, as discussed in a previous post, there came to light over time some good empirical reasons to believe that the entire brain does not cease to function in such cases and that the brain is not, in fact, necessary for integrated somatic functioning.

In their 2009 re-analysis of brain death, the President’s Council on Bioethics concurred with this conclusion and formulated instead what they felt to be a more compelling philosophical case–that an organism dies when it can no longer perform its “fundamental vital work”, which in the case of humans they identified with consciousness and breathing.2In my view, and despite the Council’s protestations to the contrary, this has a religious tinge to it, evoking the soul and the breath of God. One of these days I’ll get around to posting some religious perspectives on brain death. However, this change in the philosophical underpinnings of the brain death concept was not accompanied by a corresponding change in the law, setting the stage for the Nevada supreme court’s recent decision.

It’s important to note that the Nevada supreme court did not rule that the AAN guidelines aren’t a medically accepted standard or that following them does not establish whether a person’s entire brain has lost functioning. Rather, they ruled that the lower court hadn’t established those facts and ordered it to consider those issues further. Meanwhile, Ms. Hailu has died according to cardiopulmonary criteria, which might moot the case. But even if Nevada doesn’t adjudicate this case further, their supreme court ruling could be cited in future cases of contested brain death determination. It seems that what is needed is an update to the UDDA that would incorporate the current philosophical understanding of the concept of brain death and establish a national standard, as suggested by Choi, et al., for determining that a person has died according to neurological criteria. And the specific procedure they recommend? The one described in the AAN guidelines!

Notes / References   [ + ]

1. Even more interesting is that the Commission went on to explicitly reject the need for more philosophical analysis: “While it is valuable to test public policies against basic conceptions of death, philosophical refinement beyond a certain point may not be necessary. The task undertaken in this Report, as stated at the outset, is to provide and defend a statutory standard for determining that a human being has died. In setting forth the standards recommended in this Report, the Commission has used ‘whole brain’ terms to clarify the understanding of death that enjoys near universal acceptance in our society . . . Further effort to search for a conceptual ‘definition’ of death is not required for the purpose of public policy because . . . the ‘whole brain’ formulations provide a theory that is sufficiently precise, concise and widely acceptable.” (Emphasis added). That there have been multiple recent court cases on this issue, including the Nevada decision, would seem to belie these claims. To their credit, the President’s Council on Bioethics, in their 2009 re-analysis of this issue, took the opposite position: “At the outset, it is important to note [that we] reject the idea that death should be treated merely as a legal construct or as a matter of social agreement. Instead, [we] embrace the idea that a standard for determining death must be defensible on biological as well as philosophical grounds.”
2. In my view, and despite the Council’s protestations to the contrary, this has a religious tinge to it, evoking the soul and the breath of God. One of these days I’ll get around to posting some religious perspectives on brain death.
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Nevada Supreme Court Questions AAN Brain Death Criteria

Confronted with just about any clinical question, my general practice is to first1After proceeding through the traditional neurological formulation, of course. consider whether there is high-quality evidence to guide decision-making. The best place to search for such evidence is in clinical practice guidelines that summarize and criticize the relevant literature and offer recommendations for specific clinical scenarios.2Of course, practice guidelines exist for only a fraction of the scenarios that we encounter, but almost any clinical question can be widened out to some general case. The evidence regarding management of that general case can then serve as a starting point for a decision regarding the specific situation at hand. For questions regarding acute stroke treatment or prevention, I think that the American Stroke Association guidelines are are the most authoritative resource. When it comes to the determination of death by neurological criteria, the American Academy of Neurology (AAN) guideline is the definitive document. Or so I thought.

The case, as so many of these are, is tragic: About a year ago, 20 year old Aden Hailu presented to the ED for acute abdominal pain. No cause was apparent, and she underwent an exploratory laparotomy. The procedure was complicated by hemorrhagic shock, which caused severe anoxic brain injury. About two months later, she was determined to have fulfilled neurological criteria for death and hospital staff sought to discontinue physiological support. Her father petitioned the courts to prevent hospital staff from doing so, but the district court ruled in the hospital’s favor because the medical testimony showed that the AAN guidelines regarding the determination of death by neurological criteria had been followed.

The Nevada supreme court reversed this decision and remanded the case back to the district court for further exploration of two crucial questions related to the Uniform Determination of Death Act (UDDA) that they felt were insufficiently addressed at the district level. I’m going to address the first question here and the second in a follow-up post.

Before taking up the court’s findings, a quick word about the UDDA: The purpose of the UDDA is to promote uniformity in the determination of death, especially when determined by neurological criteria, so that a person determined to be dead in one state would not be considered to be alive in another. All 50 U.S. states have either adopted this law or passed their own, essentially identical, one. The UDDA states that “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead.” Furthermore, the determination of death “must be made in accordance with accepted medical standards” and applied and construed in a manner “uniform among the states which enact it.”

The Nevada supreme court found that the district court and the hospital failed to demonstrate that the AAN guideline on brain death is an “accepted medical standard”. They cite evidence that practices regarding the determination of death by neurological criteria actually vary widely in the U.S. (here’s an even more recent report on that point) and they found that “. . . extensive case law demonstrates that at the time states began to adopt the UDDA, the uniformly accepted medical standard that existed was the then so-called Harvard criteria.” The Harvard criteria refer to a seminal 1968 report titled, A Definition of Irreversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. It’s a very important source document for anyone interested in brain death; unfortunately, I couldn’t find a free, full-text link. The AAN guideline comports closely with the procedures described in this report, with two exceptions: The Harvard report considered an isoelectric EEG tracing to have “great confirmatory value”, whereas the AAN guideline states that “In adults, ancillary tests are not needed for the clinical diagnosis of brain death and cannot replace a neurologic examination.” Second, the Harvard report states that “All of the above tests shall be repeated at least 24 hours later with no change”, whereas the original 1995 AAN guideline recommended a confirmatory examination at 6 hours and the 2010 update is silent on this point. 

That practices regarding the determination of death by neurological criteria vary widely is quite concerning. It is therefore somewhat ironic that the AAN guidelines, intended in part to bring uniformity to this endeavor, may not withstand scrutiny. Complicating matters is the fact that Ms. Hailu has since satisfied cardiopulmonary criteria for having died, so I don’t know if the district court is going to consider the issue moot or continue to adjudicate it. Regardless, this case should prompt neurologists and hospitals to examine their protocols for making brain death determinations.

Notes / References   [ + ]

1. After proceeding through the traditional neurological formulation, of course.
2. Of course, practice guidelines exist for only a fraction of the scenarios that we encounter, but almost any clinical question can be widened out to some general case. The evidence regarding management of that general case can then serve as a starting point for a decision regarding the specific situation at hand.
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Medical Forecasting

(Cross-posted to the AAN’s stroke listserv)

For your new year’s reading pleasure, I have a very interesting book recommendation: Superforecasting: The Art and Science of Prediction, by Philip Tetlock. Some of Prof. Tetlock’s academic research made news when he showed that political pundits have the forecasting accuracy of “dart-throwing chimps”. On the other hand, the top forecasters in his online forecasting study outperformed CIA agents in predicting geopolitical events (you can join the fun by clicking on the preceding link and weighing in on matters such as, “Will Russia conduct a naval exercise in the Western Hemisphere with a Central or South American country before 1 July 2016?”). Superforecasting provides a broad survey of what makes a well-crafted prediction versus one that is so loosely worded that the person making it can always argue that he was right, how we weight evidence as it comes in and make and update our predictions, how to generate objective data (called Brier scores) on our predictive abilities, and how a rigorous approach to forecasting can be applied in various fields.

It occurred to me that it would be desirable to have a forecasting app that would allow docs to make clinical predictions in real time and then see, over time, how well we fare as forecasters and whether we can use the feedback to improve our performance. Example: A young patient comes in with a left brain TIA due to carotid dissection. There’s a tight stenosis and MR perfusion is strikingly abnormal. The patient has had only one clinical event, so the Stroke Association guidelines would support antiplatelet or anticoagulant therapy, but some members of the team suggest that in this particular case, the imaging data are so compelling as to warrant carotid stenting. The final decision is to stick with antiplatelet therapy, but some remain nervous about the patient’s short-term prospects.

A poorly-crafted forecast would be, “I really think that this man might have a stroke in the near future unless we revascularize him”. This might sound like a strong prediction, but if the patient doesn’t have a stroke, the person can always say, “Well, I just said that he might have a stroke . . . ” A better-crafted question would be: “How likely is it that Mr. Smith has another TIA or a stroke referable to the left carotid territory within the next week?” Everyone on the team could assign a probability to that outcome. Those who are certain that the patient is destined to have a stroke might assign a probability of 90%, but if it doesn’t happen, that person’s Brier score would take a big hit, and vice versa.

Of course, there would be some challenges with outcome ascertainment, maintaining confidentiality, etc., but for the sake of discussion, we can assume that these are surmountable problems (and that we wouldn’t bother with predictions that would be very hard to follow up on). Importantly, the goal wouldn’t be to answer PICO questions such as whether medical or interventional therapy is better for cases like that above–that’s what clinical trials are for, when feasible. Rather, the idea is to have a mechanism for individual doctors to obtain ongoing quantitative feedback about their predictive abilities in every day clinical practice, with all the nuances and tough judgment calls that that entails. This might be especially valuable for residents, and the data could even feed into their Practice-Based Learning and Improvement milestones.

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No Laughing Matter

Exam Stress Busters

Now that everyone’s settled into the new year, I’m sure that you’re all counting down the five months and three days until the 2016 RITE exam! Joy. If it makes you feel any better, I’m in a similar boat, with my ten year re-certification coming up next spring.

I wanted to pass along a couple of board review recommendations. The first is Laughing Your Way to Passing the Neurology Boards! by Drs. Amy McGregor and David Z. Rose. (As an aside, I recently interviewed Dr. Rose for a Neurology podcast about his forthcoming paper, “Hemorrhagic Stroke Following Use of the Synthetic Marijuana ‘Spice'”. The paper is online now and the podcast comes out on 9/29).

Laughing Your Way weighs in at close to 800 pages, but the material is presented in an easy-to-digest format. There are 21 chapters covering neuroanatomy, movement, epilepsy, vascular, etc. Each condition within those chapters is presented in a kind of bullet point format except that instead of plain bullets, there are a variety of “guideposts”–Definitions, Perils, Mnemonics, Buzz Words, and a few others. I found most of these to be quite useful. The definitions are concise, e.g. “Autoimmune myasthenia gravis is due to a decrease in the number of functioning acetylcholine receptors at the neuromuscular junction due to antibodies . . . .” The “Hot Tips” are clinically meaningful, e.g. “Inversion of the foot by the tibialis posterior should be tested while the foot is plantar flexed, to eliminate the action of the tibialis anterior”. An example of a “Peril” is “. . . [Lambert-Eaton myasthenic syndrome] may be due to an underlying malignancy such as small cell lung cancer.”

I found the mnemonics to be a mixed bag. Some are short and memorable, such as “The entorhinal cortex is how information enters the hippocampus.” Or, “In Capgras’ syndrome, patients believe people around them have been captured and replaced with impostors.” Others are more derivative, such as this one for West syndrome (characterized by Hypsarrhythmia, Infantile spasms, and Developmental delay): “In the old West, when an infant seized, people yelled, ‘ACTH!’ and they HID.” There are far more of these than I could ever remember, but perhaps the point isn’t to memorize them all (after all, the reader will likely know at least some of this information already), but rather to help one remember information that one doesn’t already know.

Other nice features of Laughing Your Way include very simple, clear tables and diagrams. I also appreciated the “List of Mosts” at the end of each chapter, e.g.

  • Essential tremor is the most common tremor.
  • Sydenham chorea is the most common cause of acquired chorea in childhood.
  • SCA 3 (Machado-Joseph disease) is the most common autosomal dominantly inherited ataxia in the US.

Finally, there are a few multiple choice questions at the end of each chapter, and these seemed to be in line with my recollection of RITE and board exam questions. Overall, I think the authors accomplished something very difficult–canvassing the basics of neurology in a way that is at the same time comprehensive, readable, and memorable. I wasn’t falling off my chair laughing, but the material does (dare I go here?) go down smoothly.

The other book that came into my possession recently is the McGraw-Hill Specialty Board Review book Neurology, by Dr. Nizar Souayah (second edition). This one, like most such books, is also organized into a bunch of chapters covering the various sub-disciplines within neurology. It is composed entirely of multiple choice questions and answers–over 1200 of them. As with the RITE, some of the questions are hard and not of every day relevance to the practicing adult neurologist–especially some of those in the anatomy, pediatrics, neurogenetics, and neurochemistry chapters. For example, “Which of the following types of episodic ataxia (EA) causes the longest-lasting attacks? EA type 1, 2, 3, 4, or 7?” Or, “The abnormal gene coding for Ataxin 3 is located on chromosome 12, X, 19, 4, or 14?”

On the other hand, there are many clinically relevant questions in this book, and where it really shines is in the answers. The thrust of this book isn’t in the questions themselves, but in the often lengthy explanations of why some answers are correct and the others aren’t. Some of these explanations run half a page or even longer. Once in a while, I found an answer that I’m pretty sure is incorrect but I think that’s going to be true for any book. Like the RITE, some of the questions are based on radiographic images, photomicrographs, etc. and there’s a color insert pertaining to many of these questions.

So in a very different way than Laughing Your Way, Neurology also covers a lot of neurology, but organized around questions and narrative explanations rather than bullet points, mnemonics, and the like. For the extremely ambitious, one could contemplate using Laughing Your Way as a quicker overview and then Neurology as a test question bank. More likely, some will find one way of learning to be more natural and some the other. For my own board preparation, I’ve been using Continuum, reading most carefully through the pediatric neurology and other topics that I’m weakest in–I find it very clinically-oriented with good questions and answers. However, Continuum doesn’t cover basic neurological science nearly as well as the two books reviewed above. For the RITE and initial certification, something like the books above will provide better test preparation.

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Medical Cannabis

Welcome to our new residents and new subscribers–our tiny community grew by 3 people this past week–a record!

Medical cannabis1I use the term “cannabis” instead of “marijuana” because of the latter’s xenophobic and racist associations. might seem to be an odd choice of topic with which to lead off the year, but the above Fresh Air segment is a great interview by the great Terry Gross and packed with issues relevant to neurology. The interview is with Dr. David Casarett, director of hospice and palliative care at Penn. He recently published a book arguing in favor of cannabis’s legitimacy as a medicine, particularly for neuropathic pain.

The discussion of the current evidence (and lack thereof) supporting the use of cannabis for various conditions is informative. One detail of interest to neurologists is the fact that cannabis actually contains many different cannabanoids, of which tetrahydrocannabinol (THC) is only the best-known. Another one, cannabadiol (CBD), may actually be the more medicinal chemical, and one not encumbered by psychotropic properties. CBD has been in the news lately because of anecdotal reports that it has greatly helped some children with Dravet syndrome, a devastating epileptic encephalopathy. Here in Wisconsin, and some other states as well I believe, the legislature recently amended the law to specifically exclude CBD from the class of banned cannabanoids and allow its prescription for the treatment of epilepsy. Other states have approached the issue more broadly, passing “Right to Try” laws to make it easier for terminally ill patients to access non-FDA-approved drugs; see here and here.

About 20 minutes in, the interview turns to a discussion of the ethical decisions facing the physician whose patient asks for advice about cannabis. Excepting the non-psychoactive CBD for the treatment of epilepsy, cannabis remains illegal in Wisconsin and illegal at the federal level as well–the DEA classifies it as a schedule 1 substance, meaning that it is dangerous and has no medical use whatsoever. Assuming for the moment that you find the evidence supporting cannabis’s efficacy for, say, neuropathic pain convincing, would you be willing to counsel a patient about that evidence? Would you countenance his use of the drug? It can’t be prescribed in the usual sense of that term, but would you be willing to write a letter for the patient, attesting that the drug is medically indicated? And perhaps most vexing of all, suppose medicinal cannabis were legal in your state of practice but still illegal at the federal level–would you be willing to prescribe it then?

There are other such dilemmas facing the contemporary neurologist. It is legal in five states for physicians to aid their terminally ill patients in suicide2Here I stick with the familiar term, which I think accurately describes the act and does not connote any moral valence. In my view, “Aid in dying” is what we neurologists do for our terminally ill patients quite regularly and doesn’t capture the intent of the act the way “suicide” does. “Death with dignity” is just a euphemism. but the official American Academy of Neurology position is that member neurologists are ethically prohibited from participating in such. If you lived in Oregon and a patient, terminally ill with glioblastoma, requested your aid in suicide, would you offer it? Another example: Wakefulness-promoting drugs such as modafinil are FDA-approved for narcolepsy. If a healthy person were to consult you out of a desire to improve his work or school performance, would you prescribe it if asked?

Finally, I thought that the discussion of hospice and palliative care is quite germane to the neurologist, especially the incoming resident. What I didn’t appreciate until I actually entered practice is that in a sense, all neurologists are palliative care physicians. Think about how many conditions we treat that are frequently fatal:

  • Malignant brain infarction
  • Intracranial hemorrhage
  • Brain tumors
  • Refractory status epilepticus
  • Encephalitis
  • ALS
  • Alzheimer’s disease
  • Traumatic brain injury

And that’s just the primary neurological diagnoses–we consult on many other patients with a wide range of terminal illnesses from cardiac arrest to metastatic cancer to malignant edema from acetaminophen overdose. I went into vascular neurology because of my preference for acute care and the satisfaction that comes from (occasionally) effecting with thrombolytic therapy an amazing turnaround in someone’s neurological condition. But what I’ve learned is that the most important thing that a vascular neurologist does–the most important thing that any neurologist does–is to help patients and families not cure but rather manage their neurological conditions in such a way as to preserve, to the greatest extent possible, the quality of their lives. Not infrequently, this means (and here I think the term is apt) aid in dying. To the new physician, it may be puzzling that aiding our patients in the dying process is not only a major, but also a potentially rewarding, aspect of neurology for patient, family, and physician. But it is, and Dr. Casarett makes the case well.

Notes / References   [ + ]

1. I use the term “cannabis” instead of “marijuana” because of the latter’s xenophobic and racist associations.
2. Here I stick with the familiar term, which I think accurately describes the act and does not connote any moral valence. In my view, “Aid in dying” is what we neurologists do for our terminally ill patients quite regularly and doesn’t capture the intent of the act the way “suicide” does. “Death with dignity” is just a euphemism.
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The Bionic Resident or: Competency Theater

Slogging through another revision of the residency program manual has gotten me thinking about competency and how we measure it. I accept the premise that there are multiple dimensions to physician competence–patient care skills, communication skills, professionalism, etc. These are what the ACGME terms “core competencies” and it’s easy, in a general way at least, to assess them. Everyone knows who the knowledgeable physicians are, who has great operating skills but no bedside manner, and who tends to lie and cover up mistakes.

It’s tougher to quantify these competencies. Medical knowledge can be tested with standardized tests, but I’ve seen plenty of residents whose real-world knowledge base is very good receive low scores on the in-service exams. This is in part because those exams test a lot of minutiae in order to create a distribution of scores. I still don’t understand why such a distribution is necessary or desirable; why not ask only pertinent questions and set an objective (criterion-referenced) standard instead of grading on a curve (norm-referenced)?

But where I think we’ve really gone too far is in trying to quantify not only the core competencies, but dozens of milestones as well. In neurology, there are 26 of them, and each one of those has several elements. Here’s the Patient Care core competency / Epilepsy milestone, with all ten of its elements:

Epilepsy Milestone

Twice each year, each residency’s Clinical Competency Committee is required to upload to the ACGME, for each resident, a score for each milestone. 26 milestones times 10 elements per milestone times 10 residents in our (very small) program equals 2600 assessments that are supposed to be adjudicated by the committee. Twice each year. If you’ve ever had the pleasure of attending a committee meeting, you know that it can be a challenge for a group to make 5 decisions in a few hours, much less 2600!

Each residency program is developing mechanisms to streamline this process and I won’t bore everyone with the details of how we do it. My concern is with the underlying assumption here–that if we create a large, complex system of resident assessment whereby 5200 boxes need to be checked each year, the result will be a valid assurance that the resident is indeed competent. I’m highly skeptical of this claim; I think we’re trying to create precision where it doesn’t exist and over-using check boxes at the expense of narrative assessment. Here’s a recent article that contrasts this “iDoc” paradigm of medical education with a “tea-steeping” paradigm (wherein the resident steeps in the training milieu for 4 years and emerges as a competent neurologist).

“Security theater” is a term some use to describe our airport screening procedures–an array of measures that give the appearance of making the skies safer for the flying public without actually doing so. I think our current assessment scheme can aptly be termed competency theater. Just as the public (reasonably) demands that something be done to ensure that terrorists can’t wreak havoc in the skies, various stakeholders are demanding (reasonably) more accountability from the medical education system. They want assurances that graduating residents have the necessary competence to care for patients. So the ACGME responded by creating the “Next Accreditation System“–a huge undertaking for that organization and for every residency and fellowship program seeking their accreditation (i.e. almost all of them). Now we have an impressive-looking competency framework to show those stakeholders, complete with fancy charts!

Milestone Graph

We can record residents’ developmental milestones over time and show these nifty charts to law makers, CMS (Medicare) administrators, and other stakeholders. But do these charts truly accurate measures of that competence? “This resident scores a 3.4 and that one a 3.7, so let’s offer our fellowship position to the latter one.” Or do the charts simply reflect the obvious fact that residents mature and improve over time?

I think we should bring the pendulum back a bit toward the tea-steeping model, with an emphasis on narrative assessment and a sprinkling of boxes to check. In neurology, I’d maintain many of the structural requirements–continuity clinic, 6 months of inpatient, 6 months of outpatient, 3 months of peds, etc. But I’d severely limit the number of outcome boxes to check: The 5 directly-observed clinical exams, X successful lumbar punctures, Y EEG reports, Z EMG reports, 1 grand rounds, 1 QI project, etc. Otherwise, the core competencies should be assessed via narrative feedback from faculty, peers, students, and staff.

Indeed, when assessing prospective residents, I pay scant attention to their transcripts–basically looking for red flags such as failed courses and gaps in the curriculum. Who cares if this student got an 87 in histology while that one got a 92? What I’m really interested in are the narrative assessments. Not even the recommendation letters, which are almost uniformly effusive, but (when I can find them) the in-the-trenches observations of faculty and residents from the end-of-rotation evaluations. That’s where there’s some possibility of ferreting out who’s an effective team member and who has a personality problem. The former will be teachable and will develop clinical skills over time. The latter often shouldn’t be practicing medicine. In reality, we take good people and develop them into neurologists–we don’t build them like the bionic man.

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An Aristotelian Take on Brain Death

"Aristotle Altemps Inv8575" by Copy of Lysippus - Jastrow (2006). Licensed under Public Domain via Wikimedia Commons - https://commons.wikimedia.org/wiki/File:Aristotle_Altemps_Inv8575.jpg#/media/File:Aristotle_Altemps_Inv8575.jpgIn a recent post, I summarized two opposing arguments over the concept of brain death. The minority view, (re-)articulated by Dr. Alan Shewmon in the context of the Jahi McMath case, is that the concept is philosophically incoherent. People with total brain failure sometimes maintain physiologic homeostasis and undergo wound healing, proportional growth, sexual maturation, etc. for some time. To the extent that some of these capacities depend on hypothalamic or pituitary function, it is not even correct to state that their entire brains have stopped functioning, much less that their bodies have dis-integrated. Regardless, such persons are are extremely disabled, but not dead.

The President’s Council on Bioethics, in their 2008 white paper “Controversies in the Determination of Death” accepted the argument that total brain failure does not inevitably lead to somatic dis-integration. Instead, they identified an organism’s death with the loss of its capacity to perform its “fundamental vital work . . . the work of self-preservation, achieved through the organism’s need-driven commerce with the surrounding world.” Such need-driven commerce is most basically expressed in the act of breathing: “. . . even when the drive to breathe occurs in the absence of any self-awareness, its presence gives evidence of the organism’s continued impulse to live. This drive is the organism’s own impulse, exercised on its own behalf, and indispensable to its continued existence.” When the organism can no longer engage in its fundamental vital work, it has died.

A commonality between these two arguments is that they both invoke a person’s capacities. Dr. Shewmon, et al. argue that the retention of certain capacities is proof of life. The President’s Council argues that the loss of what they consider to be fundamental capacities is proof of death. This focus on capacity reminded me of Aristotle’s concept of psuche as described in De Anima (On the Soul) and reviewed in one of my favorite books, Philosophical Foundations of Neuroscience. For a non-philosopher like me, Aristotle is tough reading. I’m going to make a few observations about how the current debate might be understood in an Aristotelian framework, but welcome any clarifying thoughts from sharper philosophical minds.

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Patient Narrative: Anti-NMDA Receptor Encephalitis

tt04 dockedStill working on a follow-up post on brain death. For now, I wanted to pass along a book recommendation pertinent to today’s excellent morning report. It’s Brain on Fire: My Month of Madness, by Susannah Cahalan. Ms. Cahalan is actually a journalist, and she provides a superb narrative of her experience with anti-NMDA receptor encephalitis back when the entity wasn’t very well-known.

In addition to a fantastic account of her saga, the book contains many lessons for our neurologic practices. One theme that kept standing out to me was that the diagnosis was delayed in some measure because the neurological method (i.e., putting some thought into how to frame the case, then proceeding to localize, then considering the etiologic differential diagnosis) wasn’t being followed. For example: Ms. Cahalan was a young, previously healthy, highly-educated, and high-functioning woman with strong social support. Yes, she partied with alcohol, but to just pat her on the knee and tell her that her EEG was normal so she just needed to cut back on her drinking exemplifies the cognitive error of premature closure.

There are also some lessons regarding interpersonal communication. For example: After the diagnosis was finally made, a resident took a team on bedside teaching rounds and casually remarked, “No teratoma was found, but we may just remove her ovaries anyway”, an intervention never before discussed with the patient or her family.

This book is a real page-turner; poignant, insightful, and often cringe-inducing. I highly recommend it.

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