Discussing and documenting resuscitation status

DNR discussions are challenging. Through the years I've noticed several common mistakes which form barriers to meaningful decision making:

Use of medical jargon. Patients and their families watch TV and read newspapers, and think they understand this terminology, but they often don't.

Misunderstanding of clinical issues. A lack of understanding of the patient's disease processes on the part of the person leading the discussion may lead to over or under estimation of the prognosis.

Cursory or hurried discussions. Pressure to adhere to a regulatory or institutional policy may drive such discussions, which are not informative to patients and families.

Discussions postponed until the moment of crisis.

Vague and overly subjective discussions. Early in the conference the patient may say something like “Do whatever you have to if you think it will help” and there ends the discussion. Individual modalities of resuscitation and their anticipated benefits are often not addressed specifically.

Shared assumptions that DNR status means giving up. DNR patients may still warrant aggressive care, including ICU care. At Mayo Clinic, for example, (see below link) DNR status does not preclude the option of intubation and mechanical ventilation for patients who develop respiratory failure.

Issues concerning DNR discussions are reviewed in a recent issue of the Green Journal.

DSM: The Everlasting Gobstopper of Psychiatry

The DSM is the Everlasting Gobstopper of psychiatry, providing a seemingly endless store of material for bloggers, journalists, academics, and other commentators.

I looked through the comments on my last post and was impressed by how articulate they were. I'll spend the next few posts commenting on some of the comments. How's that for narcissistic exploitation of one's own blog?

S pointed out that “a reasonable, experienced, compassionate doctor will not be bound up by DSM diagnoses,” and accurately followed that up with “but I suspect all of us here know that there are plenty of doctors who can't see past rigid categorization or have a two-dimensional view of their patients.”

I agree. Michael First, who was the editor of DSM-IV, once told me, “We used to joke that DSM should come with a combination lock and you can only open the book if you agree to really explore what is going on in the patient’s minds.” I think of DSM is a map into the mental world. It allows us to locate a patient in a general region, but not much more than that. To truly make the diagnosis, we have to do the messy work of talking with the patient and exploring what’s going on. In fact, the term “diagnosis” is a misnomer and should probably never have been borrowed from the rest of medicine, since it implies a precision utterly lacking in psychiatry circa 2010.

Dr. Peter Huang likes the new dimensional aspects of the DSM-V, but is concerned that the new disorders being proposed "will serve as an even bigger seed that Big Pharma + the APA + the FDA will use to increase further the insanely vast quantities of psych meds that are prescribed.” This is also Dr. Allen Frances' main critique in his essay, Opening Pandora’s Box: The 19 Worst Suggestions For DSM5. I agree that this is an inevitable consequence of elaborating the DSM, but only if we psychiatrists acquiesce. Some of these "changes" represent little more than a shuffling around of criteria from one label to another. The two risk syndromes (for psychosis and dementia) are potentially more insidious and might be exploited by drug companies for commercial gain. For this reason, I find it rather unlikely that both will make it into the final version--I predict that mild dementia (in the new vocab, "mild neurocognitive disorder") will make it through the gauntlet, but not "risk syndrome for psychosis."

Dr. Joseph Arpaia points out that DSM is mute when it comes to how the environment produces psychiatric symptoms: “The minimizing of the environmental effects means that the brain's attempts to adapt to the environment are seen as inherent brain pathology. This is as absurd as stating that an immune response to a bacterial invasion is an inherent immune pathology.”

However, the reason DSM does not mention environment is that it attempts to be “agnostic” when it comes to statements of causation. Yes, depression can be caused by many things but DSM simply runs down the list of symptoms. This speaks to the issue of how the document is used. If someone invented a DSM robot (perhaps in Freud's likeness), such a machine would, indeed, simply go through the lists and makes a bunch of diagnoses divorced from context. But thoughtful clinicians, whether psychiatrists or psychologists or social workers, don’t use the manual this way. Don't expect DSM to be more than it is, which is bare-bones descriptive psychiatry. At this point, we know too little about causation to do anything more than describe symptoms.

That's all for now--stay tuned for our next installment of "Commenting on the Commenters."

New study possibly links cognitive and motor delays with 'flat head syndrome' in young babies

February 16, 2010

Researchers caution not to be alarmed; more study needed to determine if delays are persistent and significant

In a new study, infants averaging six months of age who exhibited positional plagiocephaly (flat head syndrome) had lower scores than typical infants in observational tests used to evaluate cognitive and motor development. Positional or deformational plagiocephaly may occur when external forces shape an infant's skull while it is still soft and malleable, such as extended time spent lying on a hard surface or in one position. This is the first controlled study to suggest that babies who have flattened areas on the back of their heads during the first year of life may be at risk for developmental delay. Led by clinical psychologist Matthew L. Speltz, PhD, from Seattle Children's Research Institute, these findings suggest that babies with plagiocephaly should be screened early in life for possible motor and cognitive delays. "Case-Control Study of Neurodevelopment in Deformational Plagiocephaly" published online on February 15 in Pediatrics.

"Developmental plagiocephaly seems to be associated with early neurodevelopmental disadvantage, which was most evident when testing motor skills," said Matthew L. Speltz, PhD, chief of outpatient psychiatric services at Seattle Children's Hospital and professor of psychiatry and behavioral sciences at the University of Washington School of Medicine. "This suggests that babies with flat head syndrome should be screened and monitored for possible cognitive and motor delays. However, it's also important to note that our study examined babies at one particular point in time, so we cannot say with certainty whether these observations continue to hold true as these infants grow older. Our future studies will re-visit this population at 18 and 36 months of age, to see whether this association persists as these infants mature."

"Statistically, there has been a dramatic rise in the diagnosis of positional plagiocephaly since the 1990's. This may be a result of multiple factors, including increased awareness and babies spending more time on their backs in strollers, car seats, infant seats, cribs and sleeping on their backs. This time period also coincides with the national Back-to-Sleep campaign designed to help protect babies against Sudden Infant Death Syndrome (SIDS), although it should be noted that a direct correlation with flat head syndrome hasn't been scientifically established," added Speltz. "For every ten babies, one or two may have at least mild plagiocephaly. Many parents and physicians have dismissed it as a cosmetic issue or one that babies will grow out of as they develop, but our study indicates that we should look deeper."

In the study, 472 babies with ages ranging from four to 12 months (average age six months) were screened for cognitive and motor development using the Bayley Scales of Infant Development III (BSID-III), a series of industry standard observational tests. These common tests observe babies for basic cognitive, language and motor skill development. During the BSID-III, trained examiners present a series of standardized test materials to the child and observe their responses to simple tasks that require problem-solving and memory, such as searching for a hidden toy, as well as the ability to imitate, vocalize, observe and respond to their environment. Infant motor skills like crawling, rolling from side to side, and being able to lift up from a tummy position are also observed and measured. Half of the babies in the study had exhibited and been diagnosed at the Seattle Children's Hospital Craniofacial Center with some level of flat head syndrome, while half were a "normal" control group.

For the study, cranial images and measurements of each baby's head shape and size were also obtained using a 12-camera, 3-D system that allows for 360o imaging of the head. The study found that those babies who exhibited some degree of flatness at the back of the head were more likely to perform worse on the BSID-III, by an average of 10 points for the motor test scale. The most significant lower scores showed in large muscle motor functions, such as rolling from back to side.

Though the findings indicated an association between flat head syndrome and developmental delay, they do not indicate a direct causal link, the researchers say. There may be a reverse correlation, if, for example, babies with pre-existing motor delays are more likely to end up with flatter heads because they may move less or remain in one stationary position for longer periods of time.

"Physicians, psychologists and parents all need to know that it remains very important for babies to continue sleeping on their backs," added Speltz. "Regardless of any suggestion of plagiocephaly or developmental delay, the safest way for babies to sleep still aligns with the Back-to-Sleep campaign's recommendations to help prevent SIDS."

Seattle Children's Research Institute

A Doctor’s Problem With Electronic Records

By James A. White

laptopPaper medical records can easily go missing, contain bad or missing information and undermine patient care. But consider the alternative, says Alexander Friedman, a fellow in maternal-fetal medicine at the University of Pennsylvania.

As a resident fresh out of medical school, Friedman was working an an ememrgency room switching over to electronic medical records, he writes in a guest column on WSJ.com. Checking boxes and inserting codes required by the new system became the focus rather than tending to the patient, he says. As a result, he adds:

I often stood turned away, typing on the computer mounted against the wall, occasionally turning my head over my shoulder to make eye contact. I used a pre-emptive apology — “I’m sorry. I apologize for having my back to you” — but knew the excuses didn’t make up for the rudeness. A patient in pain or worried about her pregnancy deserves attention.

Friedman says EMRs are designed to communicate with insurers, not for care providers to communicate with each other. At the same time, he notes the success of the Veterans Administration’s electronic system in producing dramatic care improvements, as cited in a 2003 NEJM study.

But he sees the VA’s broad effort to apply electronics for improving accountability, integrating services and improving patient safety as an exception to how most systems are designed. “If electronic records are only used to optimize billing and improve chart audits, patients will see little benefit,” he says.

Image: iStockphoto

Ostomy Covers and Bags (Ileostomy, Colostomy): I Bet You Didn't Think Of This

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Ostomy covers are just one in a long series of supplies necessary in the care of colostomy and ileostomy patients. The words ileostomy and colostomy refer to the procedure ending up with a bag coming out of the abdomen that fills with stool. They are usually placed in folks who have lost the distal portion of their colon (colostomy) or when the entire colon has been removed or when the small bowel must be diverted (ileostomy). They can sometimes be reversed (called a take down) when the underlying reasons for placing them are fixed (such as massive decubiti ulcers).

All ostomy sites, whether they are ileostomy or colostomy sites, must be protected to ensure their survival. Ostomies require care to prevent ulcers at the exit site. They can get ischemic and and swollen and obstructed. Sometimes they need to be surgically revised. They need to be kept clean at the surface to prevent infections. They should be kept dry while in the shower or bath.

And that stuff costs money. You can find ostomy covers and ostomy bags in all assorted sizes and colors at online stores or at your local medical supply company. In fact you can even find designer ostomy covers and bags. Maybe this represents a growth opportunity for the higher end designer bag makers Coach, Kate Spade and Loui Vitton.

Designer ostomy covers and bags could take future growth projections for these higher end bag makers to a whole new level. The growth opportunities are enormous for an aging and wealthy population who cares less about the bag on their shoulder and more about the bag on their belly.

But don't forget about the little ones out there. Perhaps even Disney could market Minnie ostomy covers and bags for the little kids out there stricken with illness. You could have the best first grade show and tell ever with your Goofy ostomy cover. Most kids bring a trinket . Your kid shows his Goofy ostomy cover.

Think of the other possibilities. Hospitals could throw designer ostomy cover and bag parties as a new way to fund their daily operations as the Medicare National Bank goes belly up. Or perhaps, in addition to pet therapy dogs, an ala carte menu of optional services for patients could include offering them special ostomy covers for their ostomy bags.

Look at the spirit of cooperation between hospitals and hospitalists and you can understand the power of market economics in medicine. Many doctors are troubled by today's EMRs. They don't know it yet, but someday EMRs will be their saving grace. And it has nothing to do with making medical care better or more efficient. In fact, as insurance cheapens the value of medical education, EMRs will become nothing more than a tool for direct marketing.

Medical doctors could go the way of chiropractic marketing and show up at trade shows and State Fairs peddling a whole array of ostomy covers and ostomy bags to a public willing to spend their money on everything but actual health care. Or better yet primary care doctors, internists and gastroenterologists could give the knock off jewelery and purse parties a run for their money. These doctors have a focused clientele right at their finger tips. If they have a patient panel and an EMR, they have a whole new and exciting business opportunity just waiting for them.

They just have to run an EMR comparison for those patients with an ostomy and send them an invitation to their private party selling designer or knockoff designer ostomy covers and bags. You think Pampered Chef parties are out of control. Wait until you have a million doctors inviting you to their ostomy cover parties. Just you wait. It's going to happen.

I don't think anyone in Washington thought of the unintended consequences of a declining Medicare payment model coupled with the explosion of EMR technology. Doctors are business owners with an entrepreneurial spirit. They will always search for alternative sources of income as insurance decimates their bottom line. Third party insurance companies just don't want to pay for health care anymore. I witnessed that first hand with my physician review experience. And selling ostomy covers is just one way for doctors to survive. But it won't stop with colostomy covers and ileostomy bags.

Someday you'll have pulmonologists using their EMR for direct marketing of their designer tracheostomy parties. You'll have vascular surgeons using their EMR for direct marketing of their designer stump parties. You'll have opthalmologists taking up designer eyeball tattoos with the help of their EMR. And you'll have primary care doctors doing botox. Oh wait, they are already doing that.

That's the future of the EMR. It has nothing to do with medical care. In fact, the future driving revenue for doctors won't be medical care at all. Insurance killed that idea. It will be medical supplies. Instead of using the EMR to streamline health care, doctors will use it to data mine their patients for the direct to consumer advertising and marketing of goods and services. You heard it here first. You thought the drug companies were bad. Just wait until doctors figure out the power of the EMR.

The whole idea of doctors using their office and patient panel as a direct marketing force de jour lies on the premise that patients are more willing to pay for things than for service. And that's true for most of them. You see them pulling up in their full sized SUVs with the shiny 26 inch rims, their smart phones, their $200 jeans and their cigarettes sticking out of their designer purse. You know they're willing to pay for image. But they won't pay a $10 copay to evaluate their diabetes, heart failure, COPD, atrial fibrillation, high cholesterol, leg pains, dizziness, shakes, dry skin, diarrhea, gas, rash and sore throat all in one visit. You want to survive the future of health care? I suggest you get yourself an EMR and start selling something tangible.

And for the patients who don't want anything to do with designer ostomy covers? What do we do about them? How do we make money on them in the future? We don't. But we take great pleasure in discovering the lengths people go to save a buck. And we enjoy the creative nature of the human mind. Like this awesome guy who made his own designer ostomy cover (actually for a urostomy) by cutting out the back side of a bottle of liquid laundry detergent. I suppose you could say his ostomy will never get dirty. Perhaps this guy should start his own business selling ostomy covers to poor people, so he can then buy one from you at your exclusive invitation only ostomy covers party.

Now there's a thought...

When Evidence Collides With Anecdote, Politics and Emotion: Breast Cancer Screening

By Gary Schwitzer on February 16, 2010 11:35 AM | No Comments | No TrackBacks

That's the title of an editorial in this week's Annals of Internal Medicine (subscription required - even though the article is marked as "free" on the Annals home page.)

It's a reflection on the US Preventive Service Task Force's recommendations on breast cancer screening from last fall. The Annals editors remind readers:

"Although some subspecialty organizations advocate more aggressive routine breast cancer screening, the update actually aligned the USPSTF recommendations more closely with guidelines from the American College of Physicians, the World Health Organization, and the United Kingdom's National Health Service."

Other excerpts:

"Annals posted a survey on our Web site to solicit readers' impressions. The responses suggest that clinicians are more inclined to change what they do in light of the new recommendations than are members of the general public. ...

Clinicians who offer advice compatible with the new USPSTF recommendations are likely to meet resistance. Most women who responded to the survey resolved to continue as routine the practices that the USPSTF advises against being routine. ...

The Task Force's charge is to provide evidence-based, population-level guidance. Only rarely does evidence unequivocally support a single, definite "one-size-fits-all" recommendation. As the breast cancer recommendations so vividly illustrate, clinicians must often invoke the art of medicine to apply available evidence to an individual patient. Before these most recent guidelines, many clinical encounters about breast cancer screening probably involved little more than the physician handing the patient a mammography referral. Going forward, these interactions will surely involve more discussion about risks, harms, benefits, and preference. The Task Force's intent was to motivate such rational discussion, not to ration care. ...

Because the USPSTF issued recommendations that were politically unpopular among some constituents, there have been calls to curtail this independent body's work. If the USPSTF sinks in turbulent waters whipped up by emotion, anecdotes, and politics, Americans should mourn its loss."

Finally, the Annals editors referred to "a media cacophony" - a phrase I've used in reference to coverage of this episode. They wrote that "the media and politicians presented the breast cancer screening recommendations as a major departure from existing guidelines that heralded an age of rationed care in the United States. Confusion, politics, conflicted experts, anecdote, and emotion ruled front pages, airwaves, the Internet, and dinner-table conversations."

This episode was - and still can be - a golden opportunity for informing people about evidence - and for shared decision-making. This won't be last collision between evidence and anedote/politics/emotion. Will we be any smarter next time?

Don’t fall into the dementia trap when treating a developmental disability

February 16, 2010
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by Lockup Doc

In addition to correctional psychiatry, I spend about half of my professional time treating patients with developmental and intellectual disabilities (mental retardation). The majority of my patients have severe or profound mental retardation and are completely nonverbal.

Over the years I have observed that when many of them are admitted to the hospital for acute medical or surgical problems, because they are severely cognitively and functionally impaired, they are treated as though they have terminal illnesses. The treatment approach is often akin to that for patients with end-stage Alzheimer’s Disease.

By definition, a developmental disability (DD) occurs before the age of 18 and is a static condition. Most of my DD patients have genetic syndromes or have suffered from perinatal brain injuries. They have been far behind the curve in meeting developmental milestones, and many never will be able to walk, talk, or have the motor or communication skills or level of independence that most of us enjoy.

However, despite these deficits, each of them has unique strengths. Even those who require significant assistance with their activities of daily living still seem to be able to enjoy various activities in their lives. It would be easy to judge them as having little quality of life, but the longer I work with this population, the more I believe it to be a mistake for the developmentally normal to judge the quality of life of the chronically disabled.

On the surface, these patients are obviously severely impaired, and in many ways some of them do not look much different from those with severe dementia. The key point, though, is that their developmental disabilities are not progressive or terminal illnesses.

In contrast to those with developmental disabilities, patients with end-stage Alzheimer’s Disease have a progressive and ultimately fatal disease. In advanced Alzheimer’s Disease, patients often become incontinent of bowel and bladder, become nonverbal or minimally communicative, have difficulty eating or stop eating altogether, and eventually require assistance with all activities of daily living.

Primary care physicians are familiar with this latter scenario since Alzheimer’s Disease is fairly common. Often their end-stage dementia patient previously will have been a person with normal intellectual functioning who was quite independent. Considering hospice and withholding treatment can be the right decisions in advanced dementia. We often think of such patients as having very little quality of life because of the dramatic losses that have been inflicted by their dementing illness. They clearly are not the same people they used to be.

However, since severe and profound mental retardation are much less common than dementia, and because those with severe developmental disabilities may, on the surface, resemble those with advanced dementia, I believe it is easy to mistakenly think of the two as being in the same end-of-life category even though they are not.

When this mistake occurs, DD patients may have necessary diagnostic and therapeutic interventions withheld even though their physicians may be very competent and believe that they are doing the right thing by not treating these “obviously declining” patients too aggressively.

The key to avoiding falling into the dementia trap when treating a patient with a severe developmental disability is to learn as much as possible about the patient’s baseline level of functioning. For example, if a particular patient has always been nonverbal, incontinent, and gastrostomy-tube fed but does not seem to be losing skills, then the diagnostic and treatment approach likely will be similar to that for any other non-terminal patient. However, if the patient is obviously declining relative to baseline, then a more conservative approach may make sense.

The author is a psychiatrist who blogs at Lockup Doc.