Tag Archives: participation in life

September 19, 2018

Over-dramatizing chronic pain isn’t helping much

The most recent MMWR report on the prevalence of chronic pain from the US Centers for Disease Control (CDC)  continues today’s unfortunate trend of over-dramatizing chronic pain and feeding the frenzy that sends the message “this is horrible; medical science has gotta DO something for these poor people!”   There are simply NOT 20 million people in the USA suffering constant agony from debilitating chronic pain.  There ARE a lot of people with chronic aches and pains, and most of them are coping with it just fine, thank you.

The two crude questions that the survey asked people to answer -– and the way their answers were interpreted, especially the way they defined “high impact pain” -– makes pain look like a bigger impediment to a good life than it actually is -– for most people.  And, more importantly, I believe the list of questions failed to identify the group that most desperately needs better help.

Information about pain was collected through responses to these two questions:

  1. “In the past six months, how often did you have pain? Would you say never, some days, most days, or every day?”
  2. “Over the past six months, how often did pain limit your life or work activities? Would you say never, some days, most days, or every day?”

Chronic pain was defined as pain on most days or every day in the past 6 months. High-impact chronic pain was defined as chronic pain that limited life or work activities on most days or every day during the past 6 months

Aches and pains, both short-lived and long-lasting are an unavoidable part of everyday life. Acute pains are the result of being out and about, being active, and using the body like it is designed to be used — exercising muscles harder than usual, dropping something on your toe, tripping over a curb, or getting a sore throat or a tension headache. Chronic pains are usually the residual of various kinds of accidents, illnesses, traumatic events and other untoward events in life — including the progress of aging.

To me, that means PAIN as well as LOSS — and adapting to them — are “natural” consequences of being alive. How many people who have lived a full and eventful life have no “scars” or “tricky joints” of any kind to show for it? How many old people have you met who DON’T have any aches and pains? The question is: how do we view our pain, how do we manage it, and how have we adapted to it?

I, for example, am old. And I meet the CDC’s criteria for chronic pain, and even for “high impact” chronic pain. I have some pain in the joints of my hands and feet due to age-related osteoarthritis — with maybe some extra wear and tear on my feet due to several years on tiptoe and in toe shoes as a dancer more 50 years ago!  My fingers and toes ache virtually every day, especially when I move them a certain way or use them a lot — or I part my hair on the wrong side 🙂

The range of motion in some of my fingers and toes is limited. Sometimes a nerve gets caught on something inside my foot — which suddenly creates a searing stabbing pain – which hurts like stink. My stiff, increasingly deformed, and chronically achy finger joints have certainly affected my ability to use my hands for forceful pinching and gripping. I have also had to adjust the kind of shoes I buy, and sometimes I have to avoid walking long distances — on those days when my feet really hurt. Sometimes, the numb, burning sensation in my forefoot forces me to limp. When it gets too bad, I have to stop walking and attempt to “readjust” the position of the structures inside my foot. A successful adjustment is accompanied by a clicking sensation and a sharp searing needle-like pain, and then complete and sudden relief.

However, I don’t believe I’ve ever taken an aspirin or tylenol because of my chronic joint pain. I have not gone to a doctor about it because my discomfort is quite tolerable, the extreme pain is very occasional, and I have no need to do a lot of physically-demanding walking or gripping. And I am certainly not interested in surgery – I see little point in allowing someone to muck around in the complex structures of an old arthritic foot that is going to continue to get MORE arthritic due to natural processes.

In short, I am quite able to work around my chronic pain. I have adapted to it, and quietly and without (much) whining made adjustments in what I do and how I live. Perhaps others would not approve of my personal adaptation strategy — I’m awfully sedentary — but it is working for me. My pain is NOT dominating my life, is NOT the main focus of my attention, and is NOT sucking the joy out of my existence. In fact, I am really enjoying my life as it is.

The people whose pain IS dominating their lives, IS the main focus of their attention, and IS sucking the joy out of their existence are the ones who most desperately need help. And maybe what they need most is a re-orientation – to make LIFE the point of their life and learn techniques for how to control their own symptoms and put pain on the back burner of their brain — instead of keeping it on the front burner as a blinking red bad and pressing problem that must be solved.

So, personally, I think we should stop talking about pain and loss as though they are terrible things that shouldn’t BE — and instead make it clear that the job in front of us is to learn how to (1) adapt to and cope successfully with the unavoidable and unpleasant things that happen while we are alive, AND (2) find ways to minimize their impact on our everyday experience by focusing our energies on creating a good life anyway.

Over the last several years, I have been following the science of pain treatment and collecting tools and resources that can help people learn how to achieve a victory over their chronic pain.  Among many other techniques, acceptance and commitment therapy (or ACT) seems to be a very promising technique in this regard.  So are several other techniques that help people who are stuck living with pain give up on being angry at it or trying to “get rid” of it.  That’s because our brains are arranged so that what we pay attention to stays on the front burner.  What we resist persists.

The American Chronic Pain Association’s website has a wide array of free and low cost resources for people living with chronic pain and who want to move “from patient to person” again.   Among my favorites are the ACPA’s Ten Steps From Patient to Person and the ACPA Resource Guide to Chronic Pain Management which begins with self-directed therapies.  The ACPA also has a network of chronic pain support groups in local areas.

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September 7, 2016

Is this disability porn? Lovely duet by disabled dancers

A physician colleague sent me a link to the video entitled “Hand in Hand Dance.”  It features two Chinese dancers, each with a different impairment.  The woman has lost one arm; the man has lost one leg.

As a former dancer myself who has never seen obviously disabled dancers, I was curious.  So I watched the video — and am embarrassed to admit I was surprised at how aesthetically pleasing it is.  Their duet is beautiful and very professional.  The emotional story is clear and compelling:  loss, grief, encounter, relationship, attraction, love, joy.  But for me, the thrilling part was seeing their mastery and pure enjoyment of dance itself.  They use their bodies both gracefully and athletically — exulting in their youth, capabilities, talent, strength, life, and love,

Some people in the disability community are offended by what they call “disability porn”.   You can read about it here  and here.   Is that what this dance video is?  I don’t think so.  These two deserve admiration because they have done the work and have the talent to create an artistically satisfying dance.   But on the other hand, insensitivity is in the eye of the receiver, not the sender.  If I’ve got it wrong, please let me know — and tell me why.

See what you think:  http://biggeekdad.com/2013/09/hand-hand-dance/

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August 3, 2016

A smile-filled rebuttal of ageism

I’m sitting here with a smile on my face after watching a 90 year old woman perform on America’s Got Talent — on You Tube.

If you’re worried that maybe you’re getting old and set in your ways, watching this video will be a great tonic.  If you don’t like being ageist but old people seem so, well, OLD and predictable  —  this will sure give you a different perspective on what’s possible.

And what the heck  –  just watch it because it’s a bit outrageous and totally fun:
http://www.upworthy.com/watch-this-90-year-old-woman-give-the-performance-of-a-lifetime-on-national-tv?c=reccon3

Yesterday I ordered a book entitled:  Aging or Ageless:  Rising Like a Phoenix from the Myth of Aging by Ron Zeller, a Landmark Forum leader who died recently at age 83.   It’s a book about transcending aging that doesn’t focus on how to stop aging but instead on how to be “ageless” in the face of any circumstance you face.  Ron Zeller got his first diagnosis of terminal cancer at age 60 (which he beat), and his second at nearly 80.  In the 20 years in between, he kept on transforming people’s lives by leading courses for Landmark while taking his health and vitality up to an entirely new level as an endurance athlete. At the age of 64, he ran and won his age division in the 100-mile Wasatch Endurance Race in Utah, one of the most demanding ultra-marathons in the world —  the first of many races he ran in places all over the world.  In 2004 Ron took up power lifting and by the age of 72 had had broken three US national records for his age. As recently as age 77 he completed the 135 mile Bad Water desert endurance race, running solo between the lowest and highest points in the continental United States.

I wonder if that 90 year old woman on America’s Got Talent has read Ron’s book!  Maybe she didn’t have to – because she sensed the secret to vitality on her own.   When I have a minute, I’ll try to find out what happened to her afterwards.   If you do, please let me know.  And if I like Ron’s book, I’ll share it with you.

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July 21, 2016

Pay attention to burden of treatment – and its impact

Think about it: Becoming a patient can sometimes be like getting three new (and unwanted) part-time jobs:

(1) arranger/consumer of professional healthcare services,
(2) manager of self-care and activity adaptation regimens, and
(3) manager of administrative issues (benefits, purchasing, and billing).

The tasks involved in those additional jobs can sometimes be so time-consuming they interfere with other important responsibilities (like going to work). Some tasks may be beyond the patient’s capability and so don’t get done right – or done at all.

The POINT here is that Burden of Treatment is a significant but under-acknowledged and thus unmanaged issue.  Anyone “in the business”  for a while has had a vague sense that this is a practical concern with major impact.  But to date we’ve just been haphazardly addressing it.

All stakeholders in health-related work disruptions do need to stay alert to how much time and effort patients/claimants/employees are spending on treatment and care regimens of various kinds (and their attendant administrative/financial issues).  We also need to assess how well they are managing that burden.  Once we DO start to pay more attention to this issue and see how the impact varies from one treatment regimen to another, we will see that we have an opportunity to work on REDUCING BoT.

Figuring out how to systematically classify and document BoT is a necessary early step to increase awareness and opportunities for active management. There may well be a vast literature on this topic — but I am unaware of it. The particular study whose abstract appears below reminded me that this issues exists.  It explores whether/how to use the terminology in the ICF to document BoT. (ICF is the International Classification of Function, the lesser known companion to the ICD – International Classification of Disease.)  And I don’t know whether the ICF addresses the burden of administrative issues. Do you?

TAKEAWAY MESSAGE:   Let’s all think more about what a high burden of treatment means for our patients/claimants/employees, and what we can do to reduce it.

GONCALVES AV, Jacome CI, Demain SH, Hunt KJ, et al.
Burden of treatment in the light of the international classification of functioning, disability and health: a “best fit” framework synthesis.
Disabil Rehabil. 2016 Jul 3:1-9. [Epub ahead of print]
PubMed

ABSTRACT

PURPOSE: This systematic literature review aimed to (1) summarize and explain the concept of Burden of Treatment (BoT) using the International Classification of Functioning, Disability and Health (ICF) terminology, and (2) inform the development of a future Comprehensive ICF Core Set for BoT.

METHOD: Searches on EMbase, Medline, CINAHL and PsycINFO were conducted. Only qualitative studies were considered for inclusion. The screening and data extraction stages were followed by a “Best-fit” framework synthesis and content analysis, using the established ICF linking rules. Screening, data extraction, quality appraisal and data analysis were performed by two independent researchers.

RESULTS: Seventeen studies were included in this review. The “Best-fit” framework synthesis generated 179 subthemes which identified that BoT impacts negatively on body functions and structures, restricts valued activities and participation and influences contextual factors through life roles, self-identify and relationships. The identified subthemes were linked to 77 ICF categories.

CONCLUSIONS: This study is part of the preparatory phase of a Comprehensive ICF Core Set for BoT and our findings will inform the further needed studies on this phase. The use of ICF terminology to describe BoT provides an accessible route for understanding this complex concept, which is pivotal for rethinking clinical practice. Implications for rehabilitation Health professionals applying the ICF should consider the negative impact of interventions on patient’s life roles and self-identity, body functions and structures and on valued activities and participation. Health professionals who may be concerned about the treatment burden being experienced by their patients can now use the ICF terminology to discuss this with the multidisciplinary team. Poor adherence to rehabilitation programs may be explained by an increased BoT. This phenomenon can now be mapped to the ICF, and coded using a framework well known by multidisciplinary teams.

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July 6, 2016

Where does working age end? Who is too old to work?

I’ve been trying to draw more attention to the special healthcare needs of the working age population since they power the engine of the economy.  The healthcare industry needs to expand its focus beyond symptoms and select treatments that rapidly restore the ability to function in this group  — to help them recover faster and more completely, to keep their jobs and livelihoods, and avoid the negative consequences of prolonged worklessness for them and their family!  Doctors and other healthcare professionals often don’t really THINK ENOUGH about the impact of their treatment regimens on working people’s lives outside the office.

But as I advocate, I’ve begun pondering that definition: “working age”.  It seems safe to use 18 as the low end of the range (even though kids younger than that do work, most of them are still in school).  But what about the top end?  At what age should we stop seeing work as the norm?  Stop expecting anyone to work?   Start thinking it’s silly to insist on working?  What term should we use to describe those who have lived for a really long time but are still very active and working?  What term should we use to describe people who are the exact same age but the press of years has made them too feeble to work anymore, even though they are “healthy”?  We all know people in both of these categories.  Simply calling them both old seems inaccurate.

I found a thoughtful article from the World Health Organization (WHO) exploring how to define “old” or “elderly” — in Africa!   Have you noticed how often we notice oddities about our own culture when we look outside it?  That’s when we notice the automatic assumptions and blind spots we’ve been living with.

I think you’ll enjoy reading the excerpts I’ve pasted below from the full WHO article.  I have colored in red the parts I found most eye-opening.  They are a breath of realistic and straight-spoken fresh air about how humans age.

Bottom line as I see it:  In developing societies where the administrative and legal fictions of retirement and pensions do not exist, the people tend to define old and elderly straightforwardly and on a case by case basis depending on the actual circumstances of humans as they accumulate years (and as younger generations come behind).  Old age begins when one assumes the social role of an elder, when one withdraws from social roles either because it is time for someone younger to take over or because of decline in physical / mental capability.  And finally, when it is no longer possible to actively contribute, one is definitely well into old age.

By that reasoning, if you are still able to play the roles and carry the same load of a person a decade younger, you are not old yet.  I still don’t know what to call you though.  Or, more truthfully, I don’t know what to call myself.  I am still in there pitching though I turn 70 years old this year.  I did recently give up one of my roles to make room for a younger person who deserved her day in the sun.  Didn’t want to hog it and hold her back.

Proposed Working Definition of an Older Person in Africa for the MDS Project

Most developed world countries have accepted the chronological age of 65 years as a definition of ‘elderly’ or older person, but like many westernized concepts, this does not adapt well to the situation in Africa. While this definition is somewhat arbitrary, it is many times associated with the age at which one can begin to receive pension benefits.

Although there are commonly used definitions of old age, there is no general agreement on the age at which a person becomes old. The common use of a calendar age to mark the threshold of old age assumes equivalence with biological age, yet at the same time, it is generally accepted that these two are not necessarily synonymous.

As far back as 1875, in Britain, the Friendly Societies Act, enacted the definition of old age as, “any age after 50”, yet pension schemes mostly used age 60 or 65 years for eligibility. (Roebuck, 1979). The UN has not adopted a standard criterion, but generally use 60+ years to refer to the older population (personal correspondence, 2001).

The more traditional African definitions of an elder or ‘elderly’ person correlate with the chronological ages of 50 to 65 years, depending on the setting, the region and the country. ….. In addition, chronological or “official” definitions of ageing can differ widely from traditional or community definitions of when a person is older.  Lacking an accepted and acceptable definition, in many instances the age at which a person became eligible for statutory and occupational retirement pensions has become the default definition. ….

Defining old
“The ageing process is of course a biological reality which has its own dynamic, largely beyond human control. However, it is also subject to the constructions by which each society makes sense of old age. In the developed world, chronological time plays a paramount role. The age of 60 or 65, roughly equivalent to retirement ages in most developed countries, is said to be the beginning of old age.

In many parts of the developing world, chronological time has little or no importance in the meaning of old age. Other socially constructed meanings of age are more significant such as the roles assigned to older people; in some cases it is the loss of roles accompanying physical decline which is significant in defining old age. Thus, in contrast to the chronological milestones which mark life stages in the developed world, old age in many developing countries is seen to begin at the point when active contribution is no longer possible.” (Gorman, 2000)

Categories of definitions
When attention was drawn to older populations in many developing countries, the definition of old age many times followed the same path as that in more developed countries, that is, the government sets the definition by stating a retirement age. Considering that a majority of old persons in sub-Saharan Africa live in rural areas and work outside the formal sector, and thus expect no formal retirement or retirement benefits, this imported logic seems quite illogical. Further, when this definition is applied to regions where relative life expectancy is much lower and size of older populations is much smaller, the utility of this definition becomes even more limited.

Study results published in 1980 provides a basis for a definition of old age in developing countries (Glascock, 1980). This international anthropological study was conducted in the late 1970’s and included multiple areas in Africa. Definitions fell into three main categories: 1) chronology; 2) change in social role (i.e. change in work patterns, adult status of children and menopause); and 3) change in capabilities (i.e. invalid status, senility and change in physical characteristics). Results from this cultural analysis of old age suggested that change in social role is the predominant means of defining old age. When the preferred definition was chronological, it was most often accompanied by an additional definition.

…… If one considers the self-definition of old age, that is old people defining old age, as people enter older ages it seems their self-definitions of old age become decreasingly multifaceted and increasingly related to health status (Brubaker, 1975, Johnson, 1976 and Freund, 1997).

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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?

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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?

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May 18, 2016

It’s time to establish accountability for job loss

My report on Establishing Accountability to Reduce Job Loss After Injury or Illness (commissioned by the US Department of Labor’s Office of Disability Employment Policy) was originally conceived as a simple effort to lay out the rationale for adding work and participation in life to the list of positive health outcomes.  (I suspect that I was asked to write it because they thought a physician like me would focus on medical practitioners and the healthcare delivery system.)

Almost immediately, it became obvious to me that in order to make a solid contribution to the on-going public dialogue about health outcomes, the paper would have to explore the meaty issues of explicit expectations, accountability, metrics, credible data, rewards for best practices, and incentives for both participation and performance.

Soon after that, the absurdity of discussing expectations and accountability for the healthcare system alone became obvious —because organizations in other sectors of society play a role in the SAW/RTW process, each of which has enough discretionary power to support or thwart it.

Thus, over time, the purpose of the paper shifted to answering this question:  What has to happen in order to engage the professionals at the front-line  — the ones who work directly with affected individuals and make discretionary decisions about how much effort to make and for what purpose — so they start making a real effort to help people stay employed?

Who are those front-line professionals?

(1) Healthcare professionals.  Most of us view our purpose as making accurate diagnoses and providing appropriate treatment.   We are generally not trained to assess work capacity and prevent work disability.  Yet our opinions about work have considerable weight under law, regulations, insurance policies and traditional business practices.  We generally don’t spend much time and energy thinking about issues outside the exam room.

(2) Workplace supervisors or HR professionals.  Their focus is the business of the organization, producing its goods or delivering its services,as well as abiding by company policies and applicable laws. They can decide how much effort to make to help the employee stay at work and keep their job.  With rare exceptions, they are neither aware of the preventable nature of most work disability, nor are they trained how to negotiate and arrange stay at work or return to work plans, identify alternative temporary tasks or reasonable accommodations.  And they are not incentivized to do so.

(3) Claims/benefits administrators.  Their focus is administering the benefit programs correctly, establishing eligibility, compensability, meeting deadlines, making payments, and other requirements. In between these duties, they decide how much effort to make to help the beneficiary/claimant. Like the workplace professionals, with only rare exceptions, they are neither aware of the preventable nature of most work disability, nor are they trained how to negotiate and arrange stay at work or return to work plans, identify alternative temporary tasks or reasonable accommodations.  And they are not incentivized to do so.

Job loss is the third worst outcome of an injury or illness

As I thought about these players and those who influence their behavior, the biggest realization dawned more slowly:  job loss is a potentially devastating secondary consequence of a health-related employment disruption or a failed SAW/RTW process — because it often leads to permanent withdrawal from the workforce.  In fact it is the third worst outcome of a health condition, the other two being death and loss of limb or core functions like sight and hearing.

Yet we have not seen it that way.  Unlike death and serious injury, job loss is generally not noticed.  It’s actually a hidden outcome.  The frequency with which it occurs can only be estimated indirectly — because it is untracked and thus invisible.  When someone loses their job due to long-lasting illness or injury, they often end up leaving leave the workforce permanently, becoming dependent on public benefits programs like SSDI.

Some years ago, a senior Social Security Administration official commented to me that SSDI is the largest insurance fund IN THE WORLD and yet it has no risk management program, no loss prevention program.  Private sector insurance companies view these as core functions of their organizations.  They know they must identify and take steps to reduce risks and mitigate losses in order to meet their responsibilities and stay solvent.

In my view, government should be likewise obligated to take steps to protect SSDI (and the taxpayers who fund it) from the economic consequences of the dysfunctions, inadequacies and gaps in the upstream social structures and programs — because their failures end up on public benefit programs.

Government will make a major contribution to reducing demand on SSDI by:
(1) establishing policy that job loss/withdrawal from the workforce is a very unfortunate outcome of a health problem and should be avoided whenever possible,
(2) enabling all parties to see more clearly when it happens by requiring reporting of these events; and
(3) establishing consequences of some sort when involved organizations are non-responsive (negative incentives such as financial penalties, loss of privileges, or public exposure) or do take appropriate action (positive incentives such as credits, privileges, or favorable publicity).

This combination of outcomes visibility and accountability should then start to shift how parties in the private marketplace choose vendors and suppliers.

How will things look different when there IS real accountability for job loss?  

Implementing the broad range of actions recommended in the Establishing Accountability report will require a significant long-term effort because of their comprehensive, complex, and varied nature.  Taken as a whole, these actions have the potential to create truly transformational change.

Success will mean that more workers living with adult-onset chronic conditions and impairments (acquired disabilities) will be able to stay fully and productively engaged in their own personal, family, and community life; protect their household’s standard of living; remain economically self-sufficient contributors to their local area economy; and avoid dependency on government programs—which will in turn protect their future health and well-being and improve their children’s future prospects.  At the national level, success has the potential to stem the tide of declining labor force participation, lighten taxpayer burdens, and bolster the nation’s social fabric and the vitality of the economy.  All in all, the initiatives proposed make good use of limited government resources.

The ultimate success of the initiative will hinge on the ability of Federal policy leaders and supporters to create and sustain real multi-stakeholder buy-in and enthusiasm for achieving the future vision described in the paper.   A good next step is for the federal and state governments to decide whether and where to start.  It will take time and effort to achieve consensus among key stakeholders that this kind of initiative is necessary, timely, and deserves priority for person-power and funding.  Once that preliminary groundwork is laid, more detailed planning work can get underway.

Whoever you are, I hope you read the Establishing Accountability paper and agree that change and action is needed.  If my suggested recommendations spur you on to creative thinking, you do NOT need to wait for the government to act.  You can start factoring these issues into your decisions about who to collaborate with now.

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July 9, 2015

Here is where healthcare delivers VALUE — at the most fundamental level

When Professor Michael Porter did some “deep thinking” about where value is actually delivered in healthcare, he created a simple table that displays three tiers.   I found his second value tier EXCITING:   a Harvard Business School professor was validating my own “gut feel” about what really counts.   I summarize Porter’s three tiers this way (you can see his own table below this post):

Tier 1:   Delivering a desired health status — Avoiding death; optimizing health or extent of recovery.
Tier 2:   Minimizing the time it takes to restore the normal rhythm of everyday life — the cycle time required to produce a return to full participation in life (or best attainable level).
Tier 3:   Sustaining health or recovery, minimizing recurrences and iatrogenic (care-induced) illnesses and consequences.

Porter’s free article appeared in the December 23, 2010 issue of the New England Journal of Medicine.  In his comments on Tier 2, Porter said:  “Cycle time is a critical outcome for patients — not a secondary process measure, as some believe.”  I have focused most of my professional energy for the last couple of decades on shortening cycle time — because it clearly produces better overall life outcomes.  I hoped Porter’s article would catalyze a lot of discussion and much more attention to Tier 2 — but not much luck so far.

Personally, I believe that the purpose of being alive is to live a fully human life.  From that perspective, the most VALUABLE healthcare services are those that minimize the impact of illness or injury on the rhythm of everyday life.  I want all healthcare professionals to START here:   Our FUNDAMENTAL purpose is to avert premature death, relieve fear and suffering, and to enhance, preserve,or restore as quickly as possible every patient’s ability to participate in the specific activities that make life worth living — which for many includes productive engagement / work.

We are a social species.  We have an innate drive to be useful in some way, to have a role to fulfill.  We are happier when we have a clear purpose in life. Those of us in the middle years of the human lifespan are DESIGNED to work — to hold up our end and contribute to the well-being of our family, clan, community or nation.  The well-being of our country, and even more broadly, the survival of our species depends on maintaining the right balance between dependents and contributors.

The AFL-CIO’s website says this about work:  “Work is what we do to better ourselves, to build dreams and to support our families. But work is more than that. Work cures, creates, builds, innovates and shapes the future. Work connects us all.” As the Episcopal Book of Common Prayer‘s Order for Compline (an evening prayer service) poetically puts it:  “Grant that we may never forget that our common life depends upon each other’s toil.”

From What is Value in Healthcare by Michael Porter, NEJM 363;26 Dec 23, 2010, p 2479

From What is Value in Healthcare by Michael Porter, NEJM 363;26 Dec 23, 2010, p 2479

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