Monthly Archives: June 2016

June 28, 2016

Reduce ill-considered surgeries by using shared medical-decision making

Something called “shared medical decision-making” increases patient satisfaction while reducing utilization of elective procedures that are invasive, risky, of questionable value — and often high cost.   But it is rarely used today outside large health plans.

Do you know how shared medical decision-making (SMDM) differs from “informed consent”?  I didn’t until I attended a presentation by Ben Moulton from the Informed Medical Decisions Foundation. In brief, informed consent is a legal process that is supposed to protect patients and promote patient autonomy.  You’re probably familiar with it.  You get a form to read a minute before the doctor walks in to talk at you for a few minutes about risks and benefits of your up-coming test, procedure or surgery.  Then you sign the form after barely glancing at all the legalese.  In contrast, SMDM is a structured process by which a patient and a clinician share information with each other in a two-way exploratory conversation that prepares the patient to make a truly informed decision.  The INSTANT I learned about SMDM, I became an ardent fan.

(Please forgive the acronyms.  We have been doing a project with the military.  They constantly use acronyms in the interest of brevity.  I now find myself making an acronym out of EVERY multi-syllabic or multi-word term.  Here’s the latest one I learned:  BLUF which means “bottom line up front”.  In other words, instead of beating around the bush, the point of the memo or report is right here at the start!)

So here’s the BLUF:  Since the superiority of SMDM is now well-established among healthcare researchers and legal scholars, and many articles have documented its benefits to patients, to healthcare professionals, and in some cases to health payers, why isn’t it in widespread use every day and everywhere?   As soon as I heard SMDM existed, I began to wonder about what’s getting in the way of constant use?   I bet a combination of conflict of interest and pesky not-so-little logistical details like the lack of vendors, undeveloped operational mechanisms, and lack of fair payment for effort are the main reasons why.  And of course, a preference for costs later rather than costs today.  We gotta find a way around those obstacles!

BACKGROUND:

Ten years ago, a landmark article appeared that distinguished between informed consent and SMDM — then made a persuasive case for the latter.  Here’s the full citation:  King, Jaime S. and Moulton, Benjamin, Rethinking Informed Consent: The Case for Shared Medical Decision-Making. American Journal of Law and Medicine, Vol. 32, pp. 429-501, 2006.

First the authors described the two prevailing types of legal definitions for informed consent.   They wrote: “Currently, the states are almost evenly split between two types of standards for informed consent – the physician-based standard, effective in 25 states, and the patient-based standard, effective in 23 states and the District of Columbia.  Physician-based standards generally require physicians to inform a patient of the risks, benefits and alternatives to a treatment in the same manner that a ‘reasonably prudent practitioner’ in the field would.  On the other hand, patient-based standards hold physicians responsible for providing patients with all information on the risks, benefits and alternatives to a treatment that a ‘reasonable patient’ would attach significance to in making a treatment decision.”

The crux of the problem:   About one third of the time, the prevailing standard of care does not require the physician to do the treatment  (for example, the surgery is not the only treatment available, or is not required to save the patient’s life).  In that third of cases, in which the treatment or procedure is referred to as “elective”,  the intended outcome of the surgery is basically improved quality of life.  Thus, the decision whether to go ahead with the treatment really should depend largely on the values and preferences of the patient.  However, patients vary widely in how much information they want, their appetite for risk, their tolerance for various side effects and possible poor outcomes, and their confidence in their own decision-making ability.   Many of them will not feel prepared to make a good decision no matter how much information they get;  they want guidance or an out and out recommendation from their doctor.  Without knowing the patient’s  preferences and values, physicians are not able to give advice about treatment decisions tailored to the patient’s personal situation — and may inappropriately bias the discussion of alternative plans.

Then the authors defined SMDM:   “a process in which the physician shares with the patient all relevant risk and benefit information on all treatment alternatives and the patient shares with the physician all relevant personal information that might make one treatment or side effect more or less tolerable than others. Then, both parties use this information to come to a mutual medical decision.”  They also said SMDM must occur BEFORE the patient can give truly informed consent.

Here’s another problem:  Many physicians have trouble talking in lay language;  they tend to use big words and medical jargon.  And because medical visits are stressful, patients have trouble remembering the things the doctor tells them.   Moreover, most physicians do not have comparative factual data at hand about likelihood of success and specific side effects for the various treatment alternatives.  This has led to the development of decision aids – pamphlets, booklets and videos for patients that summarize information about procedures and treatments, their likelihood of success, what it is like to live with potential side effects and poor outcomes, and so on, all written in simple everyday language. Both the Foundation and its partner Healthwise have produced many of them.

Finally, the authors asserted that despite the “bureaucratic headaches, the enormous expenditure of financial and human resources, and the need for state by state adoption of new informed consent laws, the long-term benefits of shared decision-making and the use of evidence based decision aids to promote patient understanding of medical information to arrive at informed medical decision making far outweigh the costs for both patients and physicians.”

MY SIMPLISTIC ANALYSIS OF THE REASONS FOR LOW USE

Conflict of interest:
Some (or many) surgeons and interventionists of various kinds earn their living by delivering expensive services – and usually have convinced themselves believe those services are the best thing for the patient.   They often work for healthcare delivery organizations that want to drive revenue up – not down.   The whole team has a vested interest in making sure the patient says “yes” and understandably has less commitment to spending valuable time helping patients say “no thank you” to the operation or the treatment.

My question is:  How can we get around this obstacle?   Why can’t managed care companies or health/disability/workers’ comp payers find qualified third party vendors who can engage patients in shared medical decision-making conversations when the treating physician can’t – or doesn’t want to?   The company Health Dialog does that – but last time I talked with them, they are only set up for bulk sales to healthplans.    I haven’t yet run across an organization that will do onesie and twosie shared medical decision conversations on request.   In workers’ compensation and disability benefits programs, that option is the only way this will fly.

Scarcity and cost of materials, logistics, and lack of delivery mechanisms:
1.    Materials to educate and prepare the patient for shared medical decision-making are available only for a limited number of procedures.  It takes time and expertise to prepare them, and since they are based on the latest scientific evidence, they must constantly be updated.  For example, when I looked last, the Foundation had no package for spine fusion surgery, though they did have them for laminectomy and spine MRI.
2.    Medical offices that buy the materials used to educate and prepare the patient for a shared medical decision-making conversation can’t bill for the cost of the materials.  There is no CPT billing code expressly designed for it, and if the provider bills under a similar-appearing code, it often won’t be paid.
3.    Physicians who conduct “real” shared decision-making conversations in their office aren’t paid for the time.  There is no CPT billing code expressly designed for it, and if the provider bills under another code, it often won’t be paid.
4.    Medical delivery organizations that have especially trained staff on hand to conduct these conversations can’t bill for the time they would spend doing it.   Non-physicians can’t bill health payers for the time they spent on these conversations.  There is no billing code expressly designed for this service, and if the provider bills under another CPT code, it usually won’t be paid.

GOTTA FIND A WAY TO MAKE THIS WORK

Many studies have shown increased patient satisfaction when SMDM occurs.  In addition, Group Health of Oregon reduced healthcare costs by 40% by putting SMDM in place throughout their group practice HMO.  (They didn’t have to worry about getting paid for doing it because Group Health is a prepaid health plan that employs its own physicians.  Increasing patient satisfaction strengthens their business, and any dollars they save stay in house)

Those of us who contract with vendors and operate provider payment mechanisms really ought to get ourselves in gear to remove the barriers to widespread adoption of SMDM.   Drs. Ian Hargreaves and Victor Montori from the Mayo Clinic summarized the situation in an article in Health Affairs entitled “Shared Decision Making: The Need For Patient-Clinician Conversation, Not Just Information,” They wrote: “The patient and clinician must jointly create a course of action that is best for the individual patient and his or her family. The larger need in evidence-informed shared decision making is for a patient-clinician interaction that offers conversation, not just information, and care, not just choice.”

Leave a reply

June 22, 2016

Psychiatrist says we should use food to treat anxiety and depression

Dr. Drew Ramsey is a well-trained psychiatrist at Columbia in New York.  He grew up on a farm in Indiana.  When his patients weren’t getting well despite “evidence-based” psychotherapy and drugs, he starting wondering what was missing.  Then he started thinking about the link between what we eat and the health of our brains.  He figured out where all the latest nutrition research is pointing us, and started using food as part of his treatment plan for his patients — with good results.

Makes sense to me.  The brain consumes more energy than any other organ in the body. Obviously, a brain that isn’t getting what it needs in the way of nutrients will not function at its best.

So, one question to ask when we see someone who is not performing at their best mentally is:  are they eating right?   Which brings up another, much bigger question:  why are inquiries about nutrition not part of EVERY medical interview of sick people?  Why aren’t recommendations about foods that foster healing part of EVERY medical treatment plan?  Besides feeding the brain, nutrition is critical to healing injured tissues.

For years I’ve read about how doctors don’t learn nutrition.  It didn’t bother me because I DO know it.   My parents raised me to be a mother/wife and to be responsible for making sure I know how to feed my family well and keep them healthy.  I am also the main cook in our household.   But …. EVERY doctor should know what I know, and should keep it on the front burner.  And here’s the weird part.  Nutrition really ISN’T part of the medical culture.  Even though I’ve always known how important nutrition is, it hasn’t been part of what I talk about with people who are sick and need to get well.  Wow.  What a realization.  How stupid.

Dr. Ramsey has done at least two TedX talks, Brain Farmacy and Brain Food at the End of Your Fork.  He has a website, a blog, and three books.  Check it all out.  To me, his basic ideas make a lot of sense, and the nutrition stuff he’s saying is pretty solid, based on my own reading.  All in all, this seems like sensible stuff from the practical son of an Indiana farmer — who turned into a scientist, physician, psychiatrist and now educator.

(One concern: he may be getting swept up in the Dr. Oz fame whirl.  I hope he will avoid becoming faddish and commercial, pandering to the demands of TV fans who demand new woo woo immediate magic cures every day. So let’s go catch him now, in case he gets spoiled.)

I just ordered his Happiness Diet book to see if it’s a good patient education tool. Just THINK of all the people who are having trouble getting well.  Their medications aren’t working, they can’t tolerate their medications; therapy isn’t working, they don’t like their therapist.  I wonder how many could help heal themselves by thinking of food as therapy– and start making their brains healthier by eating nutritious (and delicious) food!

Do tell me what you think after you look at all of this stuff.

Leave a reply

June 17, 2016

Free webinar on getting off opioids next week — offered by CIRPD

See below for the topics and schedule for a series of (free) summertime webinars sponsored by  the Canadian Institute for Relief of Pain and Disability (CIRPD).  They’ve got some excellent and expert presenters lined up.   The first one is on a technique for reducing dependence on opioid medications — on Wednesday next week!

I have been on the CIRPD board for a couple of years now.  I am impressed with their focus on educating professionals alongside patients as well as their efforts to build a web portal to expedite translation of evidence from academic researchers to real world practitioners.

I am certain there OUGHT to be an analogous organization here in the USA.  One reason why CIRPD manages to survive is that it has kept getting annual grants from the British Columbia government’s “gaming” revenue.  Seems like a good use of that money!

See much more at www.cirpd.org — where you can also register for one of the webinars shown below.  Here’s an idea:  Put the ones you like on your calendar now!
——————————————–
Upcoming (free) CIRPD Webinars

Targeting Pain and Prescription Opioid Misuse with Mindfulness-Oriented Recovery Enhancement (MORE)
Eric Garland, Ph.D., LCSW – Associate Dean for Research and Associate Professor in the University of Utah College of Social Work
Dr. Eric Garland will discuss his research on the clinical benefits and neurobiological mechanisms of Mindfulness-Oriented Recovery Enhancement, a novel therapy designed to target chronic pain and prevent opioid-related problems.
DATE:            June 22, 2016 – 11:00am PDT / 2:00pm EDT

Keeping the Boom(ers) in the Labour Market: Can Existing Workplace Policies and Accommodations make a Difference?
Monique Gignac, PhD – Associate Scientific Director and a Senior Scientist at the Institute for Work & Health
Dr. Gignac will discuss current research on understanding the interplay between accommodation and chronic diseases so employers can better retain older workers.
DATE:            June 8, 2016 – 11:00am PDT / 2:00pm EDT

The Be Well at Work Program: Managing Depression, Absenteeism, and Presenteeism in the Workplace
Debra Lerner MS, PhD – Director, Program on Health, Work and Productivity, Tufts Medical Center
Dr. Debra Lerner will discuss current research on how depression in the workplace affects levels of absenteeism and presenteeism. She will also present strategies for working with employees with depression.
DATE:            June 15, 2016 – 11:00am PDT / 2:00pm EDT

The Difference Gender and Sex Make to Work Disability Outcomes
Mieke Koehoorn, PhD – Professor and Head, Occupational and Environmental Health Division, University of British Columbia
Gender and sex can have an impact on the outcomes of workplace disability. Dr. Mieke Koehoorn will discuss recent research on how gender and sex affect disability outcomes and will provide some practical steps for handling the differences.
DATE:            July 13, 2016 – 11:00am PDT / 2:00pm EDT

Exercise Management for Chronic Fatigue Syndrome – The Evidence and Current Approaches
Suzanne Broadbent PhD – Senior Lecturer, Clinical Exercise Physiology, Southern Cross University
Dr. Broadbent will provide an over view of exercise management for Chronic Fatigue Syndrome and discuss current research describing the most effective types of exercise practices to use.
DATE:            August 23, 2016 – 4:00pm PDT / 7:00pm EDT

Pain-related Distress: Recognition and Appropriate Interventions
Tamar Pincus PhD – Professor in Health Psychology, Royal Holloway, University of London
Many people who live with chronic pain report that they also suffer from low mood, irritability, and withdrawal from activities and relationships. Dr. Tamar Pincus will discuss new research which helps distinguish whether these behaviours are based in depression or pain-related distress.
DATE:            September 20, 2016 – 8:30am PDT / 11:00am EDT / 4:30pm UK

Leave a reply

June 14, 2016

Take an important step BEFORE the sausage making starts …….

Do you know the Bible story about wise King Solomon and his response to the two mothers fighting over two babies — a living one and a dead one?   Each claimed the living one was hers and the dead baby belonged to the other.  King Solomon offered to cut the living baby in half and give each mother a fair share. The real mother was revealed when she said she would give up her claim to the baby rather than have it die.

The efforts being made now to “modernize” workers’ compensation and other large scale disability benefits programs may end up dividing the live baby in half by becoming prematurely dominated by the sausage-making and log-rolling among powerful vested interests on all sides.  In particular, past efforts at “reform” in workers’ comp have been feeding frenzies for those who live off system inefficiencies and inequities.  The result is the continuing sacrifice of the metaphorical living baby — the well-being and long-term quality of life of the individuals these systems are intended to protect, and the economic and social health of our society as a whole (as represented by the taxpayers).

By their nature in a pluralistic and democratic society, legislative and regulatory reform ARE sausage-making and log-rolling activities.  As a regulator commented at last month’s Workers’ Comp Summit, good government must “account for the multiplicity of interests”.  That said, we have a better shot at creating a more satisfactory system IF we give the sausage-makers a North Star to guide their efforts.   As they write legislative language, they need to be using a written “spec sheet” of requirements that the solution must meet — a list of the major design principles or performance specifications that a twenty-first century replacement would need to satisfy.  A credible group needs to come up with a draft System Design and Performance Specifications document which could then be circulated for comment and revision in community meetings and industry groups all around the country.

The people invited to create the spec sheet should be well suited for this kind of socially responsible foundation-laying project:  thoughtful, expert in the matters at hand, with real world and front line experience, each respected in their own sector, able to see things from a broad perspective — and preferably NOT elected officers or designated representatives of organizations.  The participants must feel completely free to advocate for what they think is best for the two parties most vulnerable to system dysfunction (the affected individuals and society as a whole).  The people sitting at the table must not allow themselves to be swayed by the vested interests of their own livelihood, profession, enterprise, trade association, or industry — but should be worldly wise enough to acknowledge the power that those interests have to distort and defeat naive solutions.

As an example of the KIND of document that might result, see this preliminary draft for a set of design principles for the nation’s healthcare system.  This list was developed in the late 2000’s — before Obamacare was passed and signed into law.   It expands and refines an initial set of ideas that bubbled up from a small group of people in different walks of life in my “social set.”

As citizens and taxpayers, we were uncomfortable at the country’s lack of a core document articulating widely-accepted values, principles or expected outcomes against which to judge the merit of various details in the legislative proposals.  We also felt that a document with core principles like these could later be used to determine whether a law is creating the desired changes, and to guide later amendments and regulatory changes.   After creating this document, I envisioned groups around the country holding community meetings, to either consider and modify it or come up with their own versions.

Widespread engagement in dialogue at the community level — a “from the ground up” development of the US population’s vision of what a well-functioning health system would look like — would have given the USA a coherent values-based and outcomes-based population health policy at long last.  The results being produced by the ACA today could be compared with that vision/policy in order to judge whether Obamacare has moved us towards or away from that vision, and to identify places where changes need to be made.  (And you do realize that the US still doesn’t have a population heatlh policy, right?)

Similarly, while there is wide acknowledgement that modernization of our nation’s workers’ compensation system is needed, why don’t we take this tack and start building a vision of how a good system SHOULD operate, and the results it SHOULD produce?

Leave a reply

June 12, 2016

Almost embarrassed to mention my near miss with “disfigurement”

It’s almost embarrassing to mention my own personal experience with my birthmark, because it is so trivial.  But when I think about why my birthmark has NOT had much impact on my life, I see clearly the impact of the messages that kids get from their parents and the world around them.  I feel lucky and grateful — and more aware of the ways that the lives of others with the same or more substantial “imperfections” and “impairments” may have been changed by the reactions of their parents and the world around them.

There was a defining moment in my life when I had a near miss with defining myself as “disfigured”  Had that moment gone another way, I might have carried myself  differently, dealt with other people differently, and adjusted my view of the future that was possible, given my situation.

I do have a red birthmark on my cheek — roughly 2″ in diameter.  It has grown darker with the passage of time.  It was pale red in my youth.  In my mind, it has never been a big thing — but over the years I have come to realize that everyone doesn’t agree with that assessment.

My life would have been very different if my parents had taught me to see myself as disfigured. Daddy was a pediatrician, and approached every parenting issue from this point of view:  “What will create the best adult out of this kid?”

While I was in elementary school there must have been a specific day when I asked a question about my birthmark — because I remember what happened next.   They pointed out that everyone has “imperfections”.  In fact,  we (the four kids) then took turns combing over each other’s bodies until we did find some kind of mark on all of us.  Theirs were QUITE subtle: a pale brown “café au lait” spot on an arm, a patch of unusually thick and hairy skin.  Nothing on the face.   But as far as I was concerned, that proved the truth of my parents’ statement.

They also claimed that during Colonial times, people thought the best way to tell who was a witch was to look for an imperfection — because witches look perfect and real human beings don’t.  Later, with no apparent awareness of any philosophical contradiction, my parents also pointed out that only God is perfect. Overall, their explanations answered my questions, met my needs, reassured me, and settled the issue. I didn’t sense that anything was “wrong” with my birthmark, my face, or my appearance. I decided I was fine in that department.  And in fact, my parents indirectly told me I was pretty by constantly reminding me that  “beauty is only skin deep” and focusing their energy on molding and developing my “insides”.

So I grew up feeling pretty “normal” and reasonably confident — without any belief that I had any appearance problems beyond the ones that most kids have (pimples, hair, etc.).  No thoughts about my birthmark at all, really.  I wasn’t afraid of other people’s reactions to it.   In fact, I was only rarely asked about it, and then I would simply answer “it’s a birthmark.”   I was never ever teased about it or bullied — nor even called names.  A few years ago I realized that my maiden name (Harting) would have made a great rhyme with farting!  As things turned out, I was quite a popular kid, elected Homecoming and Junior-Senior Prom Princess two years in a row, etc — all the while feeling the usual terrible insecurities and desires of adolescence. Using my mother as my role model, I never wore any make up at all unless it was a dress-up occasion.  That’s still true now, except I wear cover-up for presentations as well as fancy parties.

It wasn’t until I was in my mid-30’s and went to a cosmetics counter to ask for cover-up makeup that the salesperson’s reaction taught me my attitude was unusual.  She said most women in my situation WHISPER when they approach to ask her for cover-up.  A few months later, a woman my mother’s age (with whom I had gotten quite close) asked why I didn’t cover my birthmark.   I acted surprised and said it just didn’t seem necessary.  She then shared her theory: she had decided my coping strategy was to be defiant and “flaunt it.”  I was stunned. I had had no inkling she thought my birthmark WAS a big deal.

She did get me to thinking though.  I realized that if other people notice the birthmark, I can use it.  So now when I arrange to meet people I’ve never seen before, I sometimes remember to say I have a birthmark on my right cheek.  It’s useful as an “identifying mark” as the cops would say!

What a gift my parents gave me!   Imagine how different my perception of myself and the way the world was looking at me — and thus my interactions with the world — could have been. All because of a little 2″ square red mark on the skin, that affects no function at all.  I suspect that my outgoing and dominant temperament / personality and social skills have also been a help.  The fact I never experienced bullying of any kind (until I was in medical school) indicates to me that I am by nature near the top of the human version of the hen house pecking order.

I sat next to a guy on a plane recently with a facial birthmark like mine–a hemangioma.  His was BIG.  It covered half his face and neck.  In some places, dark blue-red skin hung in folds, almost like a turkey.  It really was disfiguring — from my vantage point, one side of his face didn’t look like a “regular” face at all.  The guy was SUPER chatty, outgoing, and engaging.  He was almost so “in your face” as to be socially odd.  But after a minute or two, the net result was that he put everyone at ease because our focus shifted to the topic of conversation instead of his appearance.  Turns out he is a specialist in some sort of technological field (forget exactly what) and is on the road constantly.  That means being out in public and meeting new people in new situations is his everyday reality.  I decided that his extreme extroversion is the way he has responded to his predicament — the way he copes with the outside world’s reaction to his appearance.  Rather than shrink away, ashamed, in an attempt to be invisible and thus sidelining himself, he has INSISTED on his right to participate fully in life by INSERTING himself in the middle of it.  I wonder what HIS parents told him as a child…….

I guess you could say that guy on the plane and I have ended up in similar places — with an approach sort of like the puppy in The Present video.  If you don’t SEE yourself as disfigured / disabled, and/or if you don’t even CARE that you are, life is a lot bigger and more fun.

Which makes me wonder:  why do we insist that people define themselves as “disabled” in order to be eligible for “reasonable accommodations” that would let them get or keep a job?  Why can’t we just ask them to explain what they cannot do without the accommodation — instead of insisting that they label themselves?

Leave a reply

June 9, 2016

My detailed analysis of “The Present” video

Here’s my detailed deconstruction and analysis of why The Present video is so touching — what was going on with the puppy, the kid, and also with us the viewers.

The facts:   A boy is sitting home in the dark on a sunny day, intently playing video games. We don’t know why.  His mother gives him a box with a gift inside:  a puppy.  When the boy notices the missing leg, he angrily rejects the dog and throws it to the ground with a dismissive hiss and curled lip.  Momentarily stunned, the puppy spots a ball and bounces up, full of happy busy energy.  He starts pursuing the ball — like any puppy would.  He doesn’t pay attention to the rejection or to his own mobility difficulties.  As the boy watches the dog, the expressions on his face soften, and he decides to take the dog outside.  When he arises, we hear the sound of metal — and see that he has a missing leg.  The two cooperate to open the door and go outside to play fetch.

My analysis of the dynamics:  Basically, the puppy’s joie de vivre was infectious and it changed things.  First it altered the physical environment as well as the emotional tone in the room — and then it altered the kid’s head and his heart.  As things transpired and his view of the puppy started changing, the fact of the puppy’s missing leg (and his stumbles and falls) became less and less relevant/important.

What the kid learned by watching the puppy was that the puppy was determined to enjoy life and have fun, no matter what.  As the boy absorbed the puppy’s joie de vivre, he also noticed how the puppy’s stumbles and falls and momentary pain didn’t stop it from getting right up again — because the puppy was focused on normal puppy stuff:  he REALLY wanted to bounce around, explore, and engage the boy to play with him and the ball.  Its innocent enthusiasm for life warmed the boy’s heart.  The pup’s energetic intention to have fun and DO stuff is what warmed the boy’s heart, energized him, and got him up off the couch.

From a scientific point of view, those dynamics are biologically realistic.  We have learned that watching someone who is happy (or sad) influences our brains, and makes us happier or sadder.  We have “mirror cells” in certain parts of our brains that fire while we are moving an arm, wincing in pain, or crying with sadness — and those EXACT SAME CELLS fire while we are watching someone else do those things too.  Mirror cells are thought to be the source of the inner experience we call empathy — the deep understanding and connection with another living thing’s experience in the moment.

I re-watched the video after learning that it was created by a student team at an animation “college”.  Like some of you, I had failed to notice the missing leg at the same time the kid did.  This time I did see it.  Watching the kid’s and dog’s facial expressions more carefully the second time revealed how artfully they are done.  The dog’s expressions are almost a caricature of generic “enthusiastic puppy” with only two exceptions:  He does express pain one time when he really falls down hard, and he never communicates ANY sign of discouragement.

The really MASTERFUL animation is the human’s facial expressions.   In fact, that’s really the PROFOUND part of this video because his expressions are our window into the kid’s inner experience.  And those expressions are what trigger OUR mirror cells, the reason why WE are touched by what we see.

The transformation in the kid is gradual and we watch while it unfolds.  But, as a testament to the subtlety and power of the artist,  our intellectual understanding of what has happened arises mostly in retrospect after the “punch line”:  the surprise ending when he gets up and we hear, then see, his crutches and his own missing leg.

An original comic strip by Brazilian artist Fabio Coala entitled “Perfection” provided the basis for the video.  It has been translated into English.  The strip makes the kid’s thoughts more explicit.  He rejects the dog initially, saying that it is sick, he hates it, and the dog just exists to make people feel sorry for it.  In retrospect, after we see the last frame, we realize he was projecting his own situation onto the dog, reflecting his own bitter views about the meaning of his own life with a disability. The dog’s refusal to behave that way, to be sad or act pathetic, is what cracks open the kid’s thinking.

The comic strip has also had a profound impact on readers, one of whom spontaneously described what happened to him: “My eyes, they are leaking the salty water. .I am a disgusting mess…whose heart just grew ten times and fell out of my butt. I don’t know how that works but this comic isn’t allowing me to use the rest of my brain for thinking.”  That’s what mirror cells and empathy do for us — enable our “hearts” to feel on a much deeper level than our eyes can see.

 

Leave a reply

June 9, 2016

Interview with Val Lougheed about recovery and her book Be Still

I recently asked Val Lougheed some questions about her book Be Still and her experience recovering from major trauma.  I have summarized our dialogue for you below.

At the time of the head-on automobile collision that nearly cost her life in 2003, Val was the owner and president of a successful rehabilitation company then called Northern Lights Canada, with a large staff in Ontario.  The accident caused a significant head injury, internal injuries, and multiple broken bones. She made a remarkable recovery and was left with subtle limitations. If you want to see Val in action, here’s a brief 4 minute YouTube video of her speaking at a conference. She was able to return to her company, and then found a new calling as a speaker and author on head injury and recovery.   Her book Be Still is a very personal set of vignettes from her hospitalization, her recovery and rehabilitation — and her reinvention of herself.

Val and I met in person a few years ago.  She has been a longtime valued contributor to the multi-disciplinary Work Fitness & Disability Roundtable email discussion group I run.  I recently read Be Still and recommend it to you.  Her book offers a very personal glimpse into the inner experience and outer realities of someone bound and determined to heal from devastating injuries.  She has been working on a second book to be released later this year.

DR J:     Why and when did you decide to write your book, Be Still?
VAL:      It was serendipity.  At the time of my accident, I had almost finished a Master’s Degree in Community Rehabilitation and Disability Studies at the University of Calgary. My advisor knew I had kept a journal while I was in the hospitals, and suggested that I write a narrative about my recovery for my thesis. She encouraged me to write only about my personal experience – no research, no literature references, no nothing. She said to write it so that when someone read it they would feel like they were going through the experience with me. As I analyzed my journals, the particular themes that stood out were trauma, pain, depression, acquired brain injury, narcotic pain killers, and methods of helping. Writing that paper was sort of like an exercise in do-it-yourself narrative therapy. I believe it augmented my recovery. And then I realized I could self-publish it as a book.

DR J:  What did you want your book to accomplish?
VAL:     I wrote it in hopes that it would provide some useful insights into the following questions:
1.    What does it mean to recover?
2.    What can I do, myself, to recover and return to a life that includes work?
3.    What can we do — as practitioners, as family, as friends — to aid recovery and  return to work?

I have realized that the meaning of my accident for me comes from writing, studying and speaking about recovery. So every time I speak, I feel like I owe my life to the people who are listening. Every time someone reads my book, it’s the same – I owe my life to them. To my complete delight, people respond to my talks with the same amount of passion (and tears) that I have in giving them. I am driven by the hope that my work can, in some small way, lead to the development of a more sensitive, effective and in-tune system within which practitioners and patients/clients can work together to achieve successful returns to life and work.

DR J:   You have some very personal experiences to share with us — but before we go there, do you have any advice for people now trying to recover in the “system”?
VAL:     Of course!  Here are my six best suggestions.

  1. Play your own game. Don’t fall into the trap of believing you are disabled and can’t work, or that you don’t want to work/be functional.
  2. Be curious about your recovery. Try to learn and understand everything about all aspects of your recovery. Read, talk to people, write a journal – whatever you like to do. This helps to put the ‘problems’ outside of you so you can look at them with some distance between you and them. This helps to preserve your inner self from being consumed by your problems.
  3. Functionality is everything. Be clear about what a functional life for you looks like, and work towards that. Don’t get sidetracked with standardized measurements and pronouncements, or with the need to prove that you are disabled. For sure, do whatever you have to do to get the money and help you need to recover — and play the game if necessary. But always continue working towards your own vision of personal functionality.
  4. Get good psychological help. If you can afford it, or convince the insurer to pay for it, find a good psychologist or counsellor who can support you in your efforts to recover. My preference is narrative therapy, for a couple of reasons. First of all, it helps you to separate yourself from your impairments/illnesses/problems and work on them from a distance, so that you don’t drown in them. Secondly, it helps you to re-story yourself and your life, which is so important when you are going through a ‘re-organization of self’.
  5. Look for ‘angels’. There are some people out there who are truly angels. They are the ones who are prepared to listen to you, respect you, understand you and even love you. If you find one, spend time with them, listen to them, and let them help you.
  6. Stand up for what you know you need. You will be called all sorts of names (malingerer, non-compliant, unmotivated, etc, etc). Do not listen to this. Be clear about what you need and then search out people who can help you in this regard.
  7. Never, ever, ever give up!

DR J:   What have you learned about how recovery really happens?
VAL:    I know now how recovery happens on different levels. There is the outside recovery – the physical aspect of it. That part can be measured, quantified and standardized (e.g., how long does it take a broken collar bone to heal and what will it look like?). Healthcare professionals assess and fix this kind of stuff.

But then there is the inside recovery, which I found to be a deeply personal experience. In reality, there is no difference between the physiological and the psychological – no split between the mind and the body. The combined whole person can’t be standardized, measured, quantified or partitioned (which is very frustrating for a disability benefits system based on those things).

Shortly after I woke up after the accident I realized that I had lost myself. By ‘myself’ I mean my spirit, my soul, my energy – whatever it was inside of me that was ‘me’ was gone. I realized that I was becoming someone else, but I had no control over the process. Very scary – like all of a sudden not knowing who or where you are….like floating with no ground under you and no net to catch you. In clinical terms, I would call it an ‘existential crisis’.

In Judith Herman’s excellent book, Trauma and Recovery, she contends traumatic life events can shatter the sense of self.   Since an event is traumatic if the involved person perceives it to be traumatic, there must a lot of people out there with shattered selves!  And typically, it’s not exclusively the doctors and other healthcare professionals who help put the inner person back together – it might be social workers, friends, family, a minister, a nun, or maybe even just a comment from a person in passing.

Beyond this, a good recovery requires an alignment of the stars so to speak, in terms of the presence of positive family and social support along with other facilitating factors (a safe place to live, relatively good general physical and mental health, enough money to manage, and so on) to realize progress.

DR J:   How did the knitting back together of Val, the whole person occur?
VAL:     Here’s one little story:  About four months after the accident, I was talking to Sister Brenda, a nun at St. John’s Rehab Hospital in Toronto where I was a patient.  I shared with her my sense of loss of self.  By virtue of her amazing listening and empathy skills, I suddenly found myself.  My “me” was all rolled up in a little ball in my stomach!  I thought back to the accident, and suddenly it made sense to me why that was where it was.  As the other car approached, I must have realized that I was not going to be able to escape a collision — so the me that is ‘me’ hid away. As soon as I found where “me” was, I knew that was the start of true recovery.  I believe this experience of a ‘split’ between the mind and the body is the result of trauma.

Coming back to life required major internal change, a re-organization of myself on a grand scale. It required me to have a strong sense of personal control, personal power, and raw courage to follow through with necessary (and often painful) treatments and rehabilitation activities.I needed to be around people an practitioners who could help me with these things.  In his amazing book, The Upside of Down Thomas Homer-Dixon describes the process of ‘”coming back” as a “novel and unpredictable recombination of elements”.  That is exactly what it felt like for me.

Jon Kabat-Zinn has my favourite definition of what rehabilitation is really all about. He says that “rehabilitation is the learning to live inside not only one’s body, however it is after an injury or illness, but inside one’s very being”.  That quote really resonates with me.

DR J:   Who and what helped or hindered your rehabilitation?
VAL:     When I think of who helped me most to come back to life, there was of course a literal village of wonderful doctors, nurses, physios, OT’s, psychologists, etc. etc. who helped put my body and my head back together.  But specific people and particular moments — both bad and good — stand out in my mind.

I felt very vulnerable all the time during my recovery – physically obviously, but also emotionally. I felt that anyone could hurt me so easily that it was very hard to trust anybody.  This issue of trust is a huge one, in my opinion, in terms of facilitating recovery. If I trusted someone, I loved them and would try my hardest to do whatever they asked. If I did not trust someone, I hated them because I felt like my life was being threatened by them, and I would do whatever I could to get away from them. This led me to define what trust meant for me…..

I trust (love, feel safe with, will try hard for) people who:
•    Listen to me
•    Understand me
•    Respect me
•    Are competent.

In terms of being a client in the disability benefits system, when trust, positive regard, respect, and so on were absent, I could sense it – like an animal instinct. If someone treated me like this, I would feel threatened, and become REALLY uncooperative (I couldn’t help myself!), and do everything in my power to get away from that person. This is a good example of what’s called avoidance behaviour in the world of neuroscience (Rock, 2008).  I think it is often mis-labeled as non-compliant, malingering, unmotivated, etc. etc. in the system.

When my personal experience of impairment was not taken into consideration, when my recovery was measured against published norms that did not reflect exactly where I was in time and space, when I was not trusted, when I was not understood or respected, I not only lost my physical and cognitive ability to function, I also lost my will to recover.

But on the other hand – I definitely needed the money that I got from the insurance company to support me and to pay for necessary therapies when I could not work. And of course, in order to secure such monies, I had to continually prove that I was still disabled, with on-going health care assessments.

But frankly, it’s hard to recover when you are having to prove you are disabled in order to get help. It casts you in a crazy world of damned if you are recovering (because then you lose your benefits) and damned if you aren’t (because then you lose your functional life). The contentious, confrontational and distrustful atmosphere within which this plays out only serves to make it all so very much worse.  This is the reality of the disability paradox that plagues the current system adn that is what I’m researching and writing about now.

DR J:   Thank you, Val Lougheed, for sharing your personal experience of a difficult but successful recovery with us.
VAL:     Thank you for the opportunity.

1 Reply

June 7, 2016

Enigmatic 4 minute video of boy and puppy

Here is a link to The Present video — which has won more than 50 awards.  It is a 4 minute animation about a boy couch potato / video game expert who gets a cute puppy as a gift.

As it unfolds, the video gradually delivers a visual message that touches the heart — but is not as obvious as it appears on the surface.

My friend and I tried to articulate the exact unspoken message the video delivered during our walk yesterday.   We eventually decided there was more than one.  I don’t want to tell you what we noticed now — because I hope you will watch it.

What did you see in it?

Leave a reply

June 5, 2016

Want to hear my “personal elevator pitch” — and create your own?

I recently developed a brief answer to the question “what do you do?” after watching a 2013 TEDx Talk on “How to Know Your Life Purpose in 5 minutes” by Adam Leipzig.  He called it a personal rather than business version of “an elevator pitch”.  (NOTE: When you’re trying to raise venture capital or make a big sale in business, the elevator pitch is the quick summary you can deliver to a prospective funder or client in the time it takes for the elevator to reach your floor.)

Want to come up with your own personal elevator pitch too?   Get a piece of paper and then watch Adam’s TEDx talk.  His talk isn’t perfect and the process felt kind of forced and dorky — but I went along and did what he asked us to do, including answering out loud. I think I was willing to do so because he started by talking about his 25th college reunion, how unhappy most people were, and how the happy ones differed from the unhappy ones.  And then the actual exercise was surprisingly meaningful and very quick.

Afterwards, Adam pointed out an important feature of the kind of answer he had us design:  it makes most listeners want to ask a follow up question:  “HOW do you do that?”   And then there is an opportunity for a real conversation.

Here’s my answer to the question about what I do (as of spring 2016):

“Because of what I do, people feel inspired to make changes for the better — and because they also feel more willing, prepared, and confident, they actually start doing things in a new way.”

So now, are you curious HOW and WHERE and WHEN I do that?

Doing this exercise was really satisfying.  I keep a copy of my answer handy.  That single sentence has made me feel clearer and calmer inside about the unusual commitments and drive, talents, and unearned gifts with which I was endowed by my maker (thank you God or random chance).  I can feel deep in my bones how much I love serving as a channel through which the new energy that creates better outcomes is released.  Sometimes I think of myself as a “midwife for possibility”.

 

1 Reply