January 16th, 2008 by Dr. Val Jones in News
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We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
– The US Declaration of Independence, July 4, 1776
When I was in college I spent my summers working with mentally and physically disabled adults in group homes and camps. Many of the patients had IQs<75, which presented a unique communication challenge. Emotional outbursts were not uncommon as the adults used the only form of communication that seemed to draw attention to an immediate need. I spent a lot of my time trying to predict needs before frustrations bloomed, and after getting to know the peculiarities of each individual, I could generally keep the group in a fairly content state.
Most of the adults were on a long list of medications – some were for epilepsy, others were for heart defects, but many were antipsychotics and sedatives. At the time I didn’t realize exactly what each medicine was for, and wondered why these relatively young men and women needed so many pills.
In retrospect I believe that many of the medicines were a misguided attempt to control behavior. It’s analogous to giving someone, with their hand in a bucket of very hot water, a pain medicine instead of removing their hand from the bucket. And now new research in the Lancet suggests that antipsychotic medications (such as haldol or risperdal) do little or nothing to control aggressive behavior in the mentally disabled (though not psychotic) population.
So why have we been giving mentally disabled individuals antipsychotics for decades? Sadly, we thought that these pills would provide a quick and easy way to conform their behavior to our sensibilities, without having to get to know the reasons for their frustrations. And of course, these people weren’t intellectually sophisticated enough to question the utility of this approach or to decline the use of such medications.
I find it terribly sad that it has taken us this long to realize that giving anti-psychotics to mentally impaired people is not in their best interest. Surely more evidence would have been gathered prior to subjecting “normal” adults to such treatments. In this imperfect world, it does seem that those without a voice are less often heard. It is our responsibility as healthcare professionals to look after their interests and not take the easy way out. Mentally disabled individuals have the right to express themselves, and to be free of unproven and unnecessary drug treatments. Life, liberty, and the pursuit of happiness. Our own Declaration of Independence argues as much.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
October 31st, 2007 by Dr. Val Jones in Health Tips
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Gruesome costumes abound at Revolution Health today. Characters from popular horror movies seem to be a favorite, some employees even toted plastic chainsaws and spouted red ink/blood. As I was chased down a hallway by a ghoulish colleague who pretended to amputate one of my arms, I began to think – maybe this could be the subject of an interesting blog post? [Enter awkward segue here.]
Did you know that one in every 200 people in the United States has had a limb amputation of some kind? While the majority of amputations occur due to poor circulation (usually related to diabetes), some are caused by trauma, cancer, or birth defects. Limb loss is not a fictional issue, but a real concern for more people than you think. The good news is that most folks do very well with prostheses and rehabilitation programs. But since this is Halloween, I couldn’t resist discussing a potential complication of limb loss: phantom pain.
“Phantom pain” is the term used to describe pain sensations in a missing limb. Although this may sound impossible at first (how can a person feel pain in his foot when that same leg was amputated already?) the reality is that the brain takes some time to adjust to limb loss. The human brain has entire sections devoted to sensing input from and delivering movement messages to our arms and legs. When an arm or leg is lost, that part of the brain continues to function for several months or more. And so as the local brain cells lack the usual input from the nerves in the absent limb, they fire in a spontaneous manner that is perceived as cramping, aching, or burning.
How on earth can you treat this kind of pain? As you can imagine, it’s quite tricky. Some of the more successful approaches involve helping the brain to adjust to the loss of sensory input by touching or massaging the stump and walking on a limb prosthesis. These new sensations help the brain to adjust to the body’s changes. In fact, imagining moving the lost arm or leg can result in some relief of the perceived pain. This is the one case I can think of where imaginary exercise can be of real benefit to your body!Some folks do require special pain medicines (tricyclic antidepressants, seizure meds, and beta blockers can help modestly) to cope while their brain adjusts to the new input. However, most amputees experience the sensation that their limb is still there, but without any pain or unpleasantness. Phantom sensations and phantom pain almost always resolve with time – which is a testament to the amazing flexibility (or “plasticity“) of the human brain.
That being said, I hope you each have a safe Halloween – and that your only potential injury comes from a ghoul with a plastic chain saw.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
August 12th, 2007 by Dr. Val Jones in True Stories
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This week’s host of medical grand rounds invited individuals to submit blog posts that feature stories about “sudden change.” As I meditated on this theme – I realized that one of my patients played a key role in my sudden career change from academic medicine to joining a healthcare revolution.
As chief resident in PM&R, I spent a few days a month at an inner city clinic in the Bronx, helping to treat children with disabilities. The clinic was dingy, overcrowded, largely windowless, and had waiting lines out the door starting at 8am. Home health attendants generally accompanied the wheelchair-bound children to the clinic as many of them were orphans living in group home environments. The kids had conditions ranging from cerebral palsy, to spinal cord injury from gun shot wounds, to severe spina bifida. They sat together in a tangled waiting room cluttered with wheelchairs, walkers, crutches, and various prosthetics and orthotics. There were no toys or even a TV for their amusement. The air conditioning didn’t work well, and a lone clock ticked its way through the day with a bold black and white face.
The home health aides were eager to be called back to the examination rooms so that they could escape the oppressive conditions of the waiting room. I opened the door to the room and called the name of one young man (we’ll call him Sam) and an aide leapt to her feet, knocking over another patient’s ankle-foot orthosis in the process. She pushed Sam’s electric wheelchair through a series of obstacles to the exit door and back towards the examining room.
Sam was a teenager with cerebral palsy and moderate cognitive deficits. His spine was curved into an S shape from the years of being unable to control his muscles, and he displayed the usual prominent teeth with thick gums of a patient who’d been on long-term anti-seizure medications. He looked up at me with trepidation, perhaps fearing that he’d receive botox injections for his spastic leg muscles during the visit. His wheelchair was battered and worn, with old food crumbs adhering to the nooks and crannies.
“What brings Sam here today?” I asked the home health aide, knowing that Sam was non-verbal. She told me that the joystick of his electric wheelchair had been broken for 10 months (the chair only moved to the left – and would spin in circles if the joystick were engaged), and Sam was unable to get around without someone pushing him. Previous petitions for a joystick part were denied by Medicare because the wheelchair was “too new” to qualify for spare parts according to their rules. They had come back to the clinic once a month for 10 months to ask a physician to fill out more paperwork to demonstrate the medical necessity of the spare part. That paperwork had been mailed each month as per instructions (there was no electronic submission process), but there had been no response to the request. Phone calls resulted in long waits on automated loops, without the ability to speak to a real person. The missing part was valued at ~$40.
I examined Sam and found that he had a large ulcer on his sacrum. The home health aid explained that Sam had been spending most of his awake time in a loaner wheelchair without the customized cushioning that his body needs to keep the pressure off his thin skin. She said that she had tried to put the electric wheelchair cushion on the manual chair, but it kept slipping off and was unsafe. Sam’s skin had been in perfect condition until the joystick malfunction. I asked if he’d been having fevers. The aide responded that he had, but she just figured it was because of the summer heat.
Sam was transferred from the clinic to the hospital for IV antibiotics, wound debridement, and a plastic surgery flap to cover the gaping ulcer hole. His ulcer was infected and had given him blood poisoning (sepsis). While in the hospital he contracted pneumonia since he had difficulty clearing his secretions. He had to go to the ICU for a period of time due to respiratory failure. Sam’s home health aide didn’t visit him in the hospital, and since he was an orphan who was unable to speak, the hospital staff had to rely on his paper medical chart from the group home for his medical history. Unfortunately, his paper record was difficult to read (due to poor handwriting) and the hospital clerk never transferred his allergy profile into the hospital EMR. Sam was violently allergic to a certain antibiotic (which he was given for his pneumonia), and he developed Stevens-Johnson Syndrome and eventually died of a combination of anaphylaxis, sepsis, and respiratory failure.
When I heard about Sam’s tragic fate, it occurred to me that the entire system had let him down. Bureaucratic red tape had prevented him from getting his wheelchair part, poor care at his group home had resulted in a severe ulcer, unreliable transfer of information at the hospital resulted in a life-threatening allergic reaction, and a lack of continuity of care ensured his fate. Sam had no voice and no advocate. He died frightened and alone, a life valued at <$40 in a downward spiral of SNAFUs beginning with denial of a wheelchair part that would give him mobility and freedom in a world where he had little to look forward to.
Sam’s story was the last straw in my long list of frustrations with the healthcare system. I began looking for a way to contribute to some large scale improvements – and felt that IT and enhanced information sharing would be the foundation of any true revolution in healthcare. And so when I learned about Revolution Health’s mission and vision, I eagerly joined the team. This is a 20 year project – creating the online medical home for America, with complete and secure interoperability between hospitals, health plans, healthcare professionals, and patients. But we’re committed to it, we’re building the foundation for it now, and we know that if successful – people like Sam will have a new chance at life. I can only hope that my “sudden change” will have long lasting effects on those who desperately need a change in healthcare.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
July 31st, 2007 by Dr. Val Jones in Health Policy, News
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Two sad cases were reported lately – one by Medgadget in which a young child with Treacher Collins syndrome was denied a special bone-implanted hearing aid. Children with this genetic syndrome usually have normal intelligence, though their appearance reflects underdeveloped facial bones. Apparently her insurance company would pay for the procedure to install the hearing aid, but the $15K device was not covered in her parents’ insurance policy. Her parents could not afford the device, and the child has little hope of developing the ability to speak normally without the aid.
The second case was of Britain’s most elderly woman – a 108 year old who was told that she’d need to wait 18 months to receive a hearing aid from the National Health Service. Mrs. Beal is wheelchair bound, and unable to communicate without a hearing aid. Her favorite hobby is listening to music. Doctors say that she is unlikely to live long enough to receive the new hearing aid.
These two cases demonstrate that care is rationed in both a free market healthcare system, and a government run single payer system – and that rationing affects the disabled and the elderly first. This is the sad inevitability of limited resources, with only the independently wealthy enjoying the best of what healthcare can offer. Perhaps charity alone will hear the cries of these hearing impaired individuals?This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
July 9th, 2007 by Dr. Val Jones in Quackery Exposed
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Norman Vincent Peale wrote a bestselling book in the 1950’s,
“The Power of Positive Thinking.” I read
it a few years ago and found it to be a tad simplistic but it had an undeniable point: a positive attitude is important in
life.
In my last post I described the dangers of magical thinking
– since it opens the door to pseudoscience-touting snake oil salesmen. But now we will turn our attention to
positive thinking – a favorable psychological condition.
There is no doubt that there is a mind-body connection that
affects health. “Type A personalities”
are known to engage in behaviors that increase the risk for heart attack;
anxiety and perceived stress can cause higher output of adrenaline and
cortisol, and in turn contribute to inflammation, atherosclerosis, heart
disease, sleep disturbances, and weight gain.
Depressed individuals (for example) are more likely to suffer from pain
syndromes, and may have impaired immune function.
Because our mind influences the health of our body, it is
physically therapeutic to focus attention on peace of mind as a preventive
health measure. And in so far as
techniques are developed to reduce stress, decrease mental anguish, and improve
psychological wellbeing – they are helpful in keeping the body in a healthier
state.
Now, the temptation is to
exaggerate the benefits of peace of mind – that one might be able to avoid
cancer (for example) with the right attitude, which is blatantly false. So this is where positive thinking and
magical thinking can be confused.
Magical thinking ascribes excessive value to a treatment, while positive
thinking understands the limitations of treatments and yet respects the reality
of the mind-body connection.
Let’s consider back pain, for example. A magical thinker would look for the “secret
cure” for their back pain, and turn over every stone – fully anticipating that he would discover a miracle solution that others don’t know
about. He would read books promising the
ultimate back treatment “that your doctor doesn’t want you to know about” and
would spend a great deal of money on treatments that have been
rumored to have some benefit in treating back pain (without any supporting evidence). The magical thinker is vulnerable to snake
oil, and would rather risk thousands of dollars on experimental treatments than
consider traditional modalities first.
A positive thinker, on the other hand, will realize that
back pain is difficult to treat, has variable causes, and responds to different
therapies based on an individual’s unique circumstances. A positive thinker would have a realistic
view of recovery, would accept the limitations of therapeutic options, but
would focus on his abilities rather than his disabilities and look for ways to
make the best of his current circumstances.
He would actively participate in physical activity, perhaps join a support
group, get good rest and engage in a healthy lifestyle while working towards a
brighter tomorrow one step at a time.
Definitions for clarity:
Snake oil is a treatment whose efficacy is knowingly exaggerated by those who wish to turn a profit on its sale. E.g. diet pills that will “miraculously correct morbid obesity in a matter of weeks.”
A placebo is a treatment that has no known plausible mechanism for a physical effect – but may affect the individual through the mind-body connection. E.g. a sugar pill that is substituted for a pain killer may cause a patient to experience his pain differently, though there is no active ingredient in the pill.
An untested treatment is neither snake oil nor a placebo but could be used as either under certain circumstances. It is simply a proposed intervention of unclear clinical significance. There are many of these currently undergoing scientific review, and it takes patience to analyze their potential efficacy and safety.
A magical thinker is a person who is willing to accept snake oil as a valid treatment option for his condition despite a vast preponderance of evidence to the contrary. Magical thinking is belief-based, rather than evidence-based. Many very good and reasonable people are tempted to adopt magical thinking under duress.
A positive thinker is a person who choses to look for the positives in all circumstances, and approaches health with a can-do attitude. Realistic and yet optimistic, the positive thinker will focus on abilities rather than disabilities – and reach out for support as needed to optimize his psychological well being.
All of this is simply to say that a positive attitude, peace of mind, stress reduction techniques and a healthy lifestyle are an important foundation for good health. Placebos are most relevant for influencing psychological well being or pain perception (obviously they’re not appropriate for treating infections, type 1 diabetes, and the like), and magical thinking and snake oil are dangerous hindrances to wellbeing. Stay positive and protect yourself from snake oil salesmen. Knowledge is power. There are voices of reason to guide you here at Revolution Health.
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
