Category Archives: Articles, Publications, Research

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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January 24, 2018

Normal people in difficult health situations benefit from psychological services

Research has now shown how the liberal use of opioid medications in the post-surgical setting can lead to long-term dependency on these drugs as well as the development of persistent disabling (chronic) pain. Therefore, we must find new and better ways to manage acute and sub-acute pain (particularly post-surgical pain). Researchers are in hot pursuit of that goal. One group did a review of existing literature to identify psychological treatments that help relieve post-surgical pain– up to 12 weeks afterwards.  (See reference and link below.)

Short answer: Yes to CBT (cognitive behavioral therapy).  However, none of the papers that evaluated the impact of other types of psychological treatment met the authors’ inclusion criteria.  (Not meeting criteria is simply a sign the methodology or size of the studies wasn’t solid enough — the techniques may actually be effective, but a rigorous standard of proof hasn’t been met.)

Implications for ALL professionals who interact with ill and injured people: We must must MUST stop sending the message (with the way we speak and behave) that CBT and other effective psychological treatments are only for “screwed up people” with mental illness diagnoses!!!!

Background and Perspective:  Many people who are suddenly faced with UNUSUAL EVENTS have NORMAL HUMAN REACTIONS to them that lead them to make unwise decisions that lead to worse-than-necessary outcomes.  The list of normal human reactions includes things like confusion, uncertainty, worry, distrust, head-in-sand, false beliefs, and wrong-headed impulsive decisions.

A sensible and compassionate way to look at that kind of behavior is this: Some people are ill-equipped to deal well with what life serves up to them at a particular moment in time. They may simply lack the understanding, information, and effective tool/techniques that other people have. There is NOTHING WRONG with these people.  There is simply something MISSING that could make a positive difference if supplied.

I suggest we start thinking about people dealing with acute post-surgical pain (and other unfamiliar health-related life events) as people who need to be FULLY EQUIPPED or PREPARED to deal with whatever it is.  And we, as the professionals who are responding to their predicaments, are in a better position to know what it is they DO need and ensure they DO get it.

Two analogies:  The best analogy I know is prenatal care and childbirth education. There is NOTHING WRONG with a woman who hasn’t had a baby before being ignorant about pregnancy, labor, and delivery . The data is clear that prenatal care and childbirth education improve both patient experience and outcomes. We don’t stop to WONDER whether a pregnant woman “needs” that education. We KNOW she does – unless she’s already an “expert”!

Another excellent analogy is the palliative and hospice care that aid people who are preparing for their own death. Since we humans only die once, most of us are not experts at going through the wrapping up period of life.  There is NOTHING WRONG with being afraid and ignorant about what is coming and how to handle it.  Research long ago proved that the biopsychosocial approach used in palliative and hospice care improves quality of life for both patient and family. And more recently, the evidence is accumulating that hospice care actually prolongs life!

Among other things, “palliative care” involves educating patients and their caregivers — so they feel less powerless, so they put the emphasis in the right places, so they are prepared, so they have simple methods and techniques at their disposal for managing symptoms and relieving distress. All of this gives them a sense of SOME control – which is tremendously important to people dealing with a process that cannot be stopped and an inevitable end.

And we can’t assume that having a college degree means a woman knows anything about having a baby, or living with a terminal illness, or managing acute post-surgical pain.  General literacy is NOT a guarantee of health literacy – but low general literacy is pretty much a guarantee of low health literacy as well.  (A person with good health literacy is fully equipped and prepared to deal  appropriately and effectively with the health matters they are facing.)

Suggested action steps:  Decide to help people in difficult situations acquire the knowledge and skills they need to cope well with their current / future predicaments — so they get the best possible outcome.   Take a pro-active approach so that people are routinely offered assistance.  Your job is to make it clear you expect them to take advantage of and actively participate. Explain to them why and how doing this will help them.

Where there is a will, there is a way.   If you are creative, you will be able to figure out how to accomplish these things simply, at low cost, and effectively.  For example, CBT treatment often takes just a handful of face to face appointments.  Nurses and physical therapists have been successfully trained to do education and employ CBT techniques in specific situations. There are on-line versions of almost everything these days.  Use your existing staff to  provide oversight, structure, and reinforcement to ensure adherence.

1. For post-operative pain:  Since pain following surgery is entirely predictable, please start thinking about how you can ensure that patients get enough information and actual instruction in effective self-pain control techniques and methods, including psychological ones, so they too have a sense of SOME control and reduce their own suffering — during that difficult post-surgical recovery period?

2. For painful and disabling new injuries or illnesses that are disrupting jobs / livelihoods.  For working people whose ability to do their usual jobs has been affected by a painful injury or illness, please start thinking how you can ensure that they get enough useful information and practical instruction in BOTH self-care for pain and functional rehabilitation, including psychological techniques.  These tools will allow them to gain a sense of SOME control over their recovery and their future —  and thus will be more likely to have a good outcome.

Please let me know what you decide to do and how it goes.

REFERENCE AND LINK

Psychological treatments for the management of postsurgical pain: a systematic review of randomized controlled trials.  Judith L Nicholls,1 Muhammad A Azam,1,2 Lindsay C Burns,1,2 Marina Englesakis,3, Ainsley M Sutherland,1 Aliza Z Weinrib,1,2 Joel Katz,1,2,4 Hance Clarke,1,4   in Patient-Related Outcome Measures, 19 January 2018 Volume 2018:9 Pages 49—64.
DOI https://doi.org/10.2147/PROM.S121251

Authors:   1Pain Research Unit, Department of Anesthesia and Pain Medicine, Toronto General Hospital, 2Department of Psychology, York University, 3Library and Information Services, University Health Network, 4Department of Anesthesia, University of Toronto, Toronto, ON, Canada

ABSTRACT

Background: Inadequately managed pain is a risk factor for chronic postsurgical pain (CPSP), a growing public health challenge. Multidisciplinary pain-management programs with psychological approaches, including cognitive behavioral therapy (CBT), acceptance and commitment therapy (ACT), and mindfulness-based psychotherapy, have shown efficacy as treatments for chronic pain, and show promise as timely interventions in the pre/perioperative periods for the management of PSP. We reviewed the literature to identify randomized controlled trials evaluating the efficacy of these psychotherapy approaches on pain-related surgical outcomes.

Materials and methods: We searched Medline, Medline-In-Process, Embase and Embase Classic, and PsycInfo to identify studies meeting our search criteria. After title and abstract review, selected articles were rated for risk of bias.

Results: Six papers based on five trials (four back surgery, one cardiac surgery) met our inclusion criteria. Four papers employed CBT and two CBT-physiotherapy variant; no ACT or mindfulness-based studies were identified. Considerable heterogeneity was observed in the timing and delivery of psychological interventions and length of follow-up (1 week to 2–3 years). Whereas pain-intensity reporting varied widely, pain disability was reported using consistent methods across papers. The majority of papers (four of six) reported reduced pain intensity, and all relevant papers (five of five) found improvements in pain disability. General limitations included lack of large-scale data and difficulties with blinding.

Conclusion: This systematic review provides preliminary evidence that CBT-based psychological interventions reduce PSP intensity and disability. Future research should further clarify the efficacy and optimal delivery of CBT and newer psychological approaches to PSP.

Keywords: postsurgical pain, CBT, acute pain, chronic pain, chronic postsurgical pain, multidisciplinary pain management

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January 5, 2018

More empathy for suffering improves patient experience

I just ran across the story of Rana Awdish and her sudden, near-fatal medical catastrophe — which put her in the critical care unit and resulted in the death of her near-term unborn baby.  She is a physician and was in specialty training for critical care medicine at the time.  The experience taught her a lot about the nature of suffering.  It also showed her that human caring and empathy is too often missing in hospital care today.  The story appeared on the NPR website yesterday, entitled Brush With Death Leads Doctor to Focus on Patient Perspective. She’s just published a book about the experience and what it taught her.  The title is In Shock.

I found an essay of hers published in the New England Journal of Medicine a year ago entitled “A View from the Edge – Creating a Culture of Caring”. In it, she provides more facts about what happened, especially the way the hospital medical staff and other employees treated her while she was in the hospital.  She clearly had intense emotional suffering at the same time her body systems were failing and she was near death.  Sadly, it is also clear that the people taking care of her did a much better job of attending to her medical problems than her human ones.

In her recounting of the facts, she highlighted specific careless and hurtful remarks that she had overheard or that her physician colleagues had said to her face.  She also highlighted some examples of tender caring others had demonstrated during her hospital stay.  In her new position as Medical Director for Care Experience at the hospital, she has used those specific examples to improve the training for all employees, from physicians to housekeeping staff.

Reading the three paragraphs below transformed the essay for me; it went from worthwhile to sublime.

“Through the training that was developed, participants learn to articulate their purpose as distinct from their job. Transporters hear how meaningful it was to me when one of their own — having seen me break down when questioned by someone in radiology — took it upon himself to warn the technicians performing various tests not to ask about the baby whose small pink wristband was still in my chart. He asked his colleagues to do the same. In an 800-bed hospital, the transporters had united to form a protective enclosure around one patient.

“Similarly, radiology technicians learn what a kindness it was that they stopped trying to awaken my exhausted husband to move him from my bedside for my portable x-ray, instead throwing a lead cover over him and letting him sleep. The power of these stories shows new employees that they have a purpose and that they are valued.

“In addition, new employees are taught to recognize different forms of suffering: avoidable and unavoidable. Our goal is to find ways to mitigate suffering by responding to the unavoidable kind with empathy and by improving our processes and procedures to avoid inflicting the avoidable kind whenever possible.”

I bet every single employee can find a way to share in a purpose like that.  From top to bottom on the hospital’s / corporation’s / our society’s pecking order of life, we have our humanity in common. We all have hearts and the innate ability to attune ourselves to notice another’s need or distress, and then to find a way to express caring for them.

There is an irony in the essay.  Most of the examples of uncaring comments came from highly trained healthcare professionals.  Most of the examples of compassionate behavior came from employees with more humble backgrounds and jobs.

Here’s another example of that, a YouTube video about Carolyn Collins, the janitor at Tucker High School.  The narrator says Carolyn has found her “true calling” — a purpose she finds deeply meaningful.  She maintains an extra “janitor’s closet” full of necessities for the 20 to 30 homeless students who attend that school.  She came up with the idea herself.  And she spends her own time and money to make sure that closet is fully stocked so those homeless kids always have access to free clothes, school supplies, snacks, and emergency food.

Notice again that this big-hearted person is a janitor.  As you listen to her talk on the video, imagine her own background, her educational level, and the size of her paycheck.  The narrator says Carolyn’s young son was killed in a home invasion.  I think Carolyn believes the person who killed her son was a desperate person.  As soon as she realized there were homeless kids attending Tucker High School, she was inspired to act.  She wants them to have what they need so they can go to school, and don’t need to steal or get in trouble — or kill someone.

I find the goodness of people heart-piercingly beautiful. And I’m the one who feels humble right now.

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November 28, 2017

Avoid “one-size-fits-all” thinking in evidence-based medicine

If you feel a duty to avoid “group think” and are not yet a subscriber, I recommend you take a look at this group and their blog:  Minimally Disruptive Medicine.   Today’s posting (What are the risks and benefits of adopting guideline-driven care?)  refers to a remarkable blind spot in thinking that has just begun to be revealed:   the faulty belief that one size fits all in treatment which is based on the assumption that mathematical averages are “good enough” to PRECISELY  describe the care a whole population should receive.   And there’s a link to a VERY COOL Air Force study about “average” pilots that led to a new approach to designing cockpits for them.

Interestingly, a neuroscience researcher brought up this exact problem of variability while discussing neuroplasticity and its application to rehabilitation after strokes in a YouTube I watched last night.    https://www.youtube.com/watch?v=LNHBMFCzznE.  She uses the phrase “personalized medicine”.    The genetics-oriented medical community uses the phrase “precision medicine.”   The bottom line:  people are not biologically identical at birth – and their life experiences after birth only INCREASE that variability.

The definition of evidence-based medicine (EBM) proposed by Dr. David Sackett, one of the original gurus who articulated the concept, DID include patient values and preferences.  (See diagram pasted below and this website:   http://guides.mclibrary.duke.edu/c.php?g=158201&p=1036021.)

Note however that the Sackett definition FAILS to mention variations among patients – their biological idiosyncracies, other co-morbidities, or the context of the illness:  the patients’ life situations.   Technically, one could argue the nature and impact of those variations are all included in the box called Best Research Evidence.   BUT REALISTICALLY, as applied in practice and on the go, the “research” being brought to bear is usually mono-dimensional (the research on a particular test or treatment regimen).

A very bright and ambitious young Air Force physician told me last year that most of the fun is gone from medical practice for him due to EBM and EHRs (electronic health records).  By fun, he meant intellectual challenge and creativity.   In his world, going along with whatever the practice guideline says to do is the easy path.  There is neither encouragement nor reward for taking the extra mental step to consider whether there any reason why a patient might need something else –in addition or instead.   If he deviates from a guideline, he has to spend MANY more clicks and MUCH more  (bureaucratic) time documenting the reason for it.   He has already become cynical and is looking for an alternative to clinical practice.    Apparently the idea of mastering a “population approach” – seeing if he CAN consistently apply EBM across all of his panel of patients  – has little appeal for him.

Definitely a worthy bleeding edge of medical thought.    EBM conscientiously and consistently – but injudiciously – applied by clinical lemmings (imagine little white coats) may help many patients — but will definitely HARM some.

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September 27, 2017

Job loss due to medical care calendar vs. FMLA calendar

Extending medical leave beyond the FMLA period may be an UN-reasonable accommodation under the ADAAA, according to a recent decision of the US 7th Circuit Court of Appeals. The court wrote: “ADA is an anti-discrimination statue, not a medical-leave entitlement.” And it said that since the purpose of reasonable accommodation is to allow an employee to work, which a medical leave does not do, then a leave does not accomplish the law’s purpose. However, the EEOC opposes the position of the court, and is unlikely to change its view that a long-term leave IS a reasonable accommodation when it is: (a) of specific duration, (b) requested in advance, and (c) likely to result in the employee being able to perform essential job functions upon return.

ATTENTION ALL CLINICIANS and CLAIM PROFESSIONALS: Please notice this one key fact in the case before the court. A guy exhausted his 12 weeks of FMLA leave during the “conservative care” phase of treatment for his back pain. In fact, he had his back surgery on the LAST DAY of his FMLA leave — which was protecting his job!

We really have to think more about the intersection between the calendars of “evidence-based medical care” and job loss. For most of the common musculoskeletal problems (like straightforward back, knee, shoulder and ankle pain for example), the scientific evidence says that the doctor should begin by prescribing simple things like aspirin or motrin, ice packs, physical therapy, and exercise.  Unless there are clear signs of a potentially dangerous or progressive problem, the best thing is to wait for 6 weeks and give the patient’s body time to heal itself naturally.

But maybe we should be keeping our eye on the clock, and monitoring progress more actively during that 6 weeks.  When we see recovery not proceeding as hoped, we may need to ANTICIPATE the need for an orthopedic referral, make the appointment for that 6 week mark, and cancel it if things turn out better so it’s not needed.  If not, we may burn through several weeks before the specialist can be seen.

In my experience, it is more typical to see the initial treating clinician SLOWLY notice the passage of time and realize that conservative care hasn’t cut it.  Then they start talking to the patient about a referral to a specialist for consideration for surgery.  Then, when the surgeon sees the patient, they may talk about surgery and wait for the next appointment before requesting authorization from the payer.  They usually wait for a yes before scheduling the surgery — which is often some weeks in the future.   Maybe somebody ought to do a study of the weeks of time lost in this process.

Or maybe you have a better idea? How do we make sure that people’s FMLA clock doesn’t run out because of an ADMINISTRATIVE delays on OUR end, not medical ones on THEIR end? Our goal is to have them NOT lose their jobs – and right now I’m afraid we are really not paying enough attention to that critically important and NEGATIVE result of an injury/illness.

Read more about the 7th Circuit Court of Appeals decision here: https://www.natlawreview.com/article/ada-not-medical-leave-entitlement-seventh-circuit-declares

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January 5, 2017

Why Public-Private Collaboration Is Necessary to Prevent Work Disability

My goal now is to raise awareness about the need for concerted governmental, philanthropic, and private sector action to find better ways to support the millions of workers who lose their livelihoods each year due to injury or illness.  In many cases, this outcome could have been prevented.  And in the New World under President Trump, it will probably be more important than ever to make sure that people get the help they need to KEEP earning a living and STAY in the workforce.

You may be wondering … why work disability is a problem?  Let’s start with the basics. As a practical matter, we already know that lack of work is bad for people and for communities.  Just think about the many millions of dollars the government spends to create jobs and reduce unemployment!  But now, formal research has started confirming how harmful worklessness really is for adults — documenting the consequences for their physical and mental health as well as for their marital, family, social and economic well-being.

Since that’s so obvious…. let’s agree that preserving people’s ability to function and work should be a fundamental purpose of health care services.  Successfully doing so should be seen as an especially valuable health care outcome, second only to preserving life, limb, and essential bodily functions.  And the failure to do so should be called a poor outcome.

Today’s reality is … that whether or not a person with an newly-acquired medical condition is able to function and work afterwards is not even counted as a health outcome!  And there are gaps in our social fabric that are actually creating job loss and work disability.

Here’s one big example of a gap: … None of the three professionals typically responding to workers who are dealing with life disruption due to injury or illness feel any responsibility for actively supporting the workers to keep their jobs or find new ones if necessary. That includes health care professionals, employers, and benefits administrators.  Occasionally, some of these professionals actually advise against work — not realizing the consequences, of course.  The workers are left to fend for themselves;  some lack the confidence or skills to do so successfully.  We need better public policy, stronger governmental efforts, and more support from the private sector in order to prevent this needless work disability.

Do you realize… that roughly half of the people now receiving Social Security Disability Insurance (SSDI) and other prolonged disability benefits started out with very common health problems like back pain, depression, and anxiety?  And do you realize that the vast majority of people in the country who develop those same conditions don’t even take any time off work or are able to return after just a short absence?   So the people who end up on SSDI are members of a subgroup that has had unexpectedly poor outcomes — including job loss.

You might ask …why does this sub-group have such poor outcomes of conditions that normally don’t cause much work disability at all?  It’s logical to assume that these people had the most severe cases of back pain or depression and so on, but in most cases there’s actually no objective data to support that idea.  For every person now on long-term disability there are others who started out with the exact same condition, but are still working.  From the strictly medical point of view, they looked identical at the beginning.  What is different is the way the illness episode unfolded in the two groups:  what happened; how others talked to them and treated them; the decisions they made about the best way to manage this life challenge; the effectiveness of the medical treatment they received; the other kinds of support they got and the opportunities that were or weren’t available.

My personal hope is that … more employed people who are dealing with new injuries or illnesses are going to get what they need at the right time to avoid needless impairment work absence, job loss, withdrawal from the work force, and long-term reliance on disability benefits — which really means a life of poverty.  That would be good for them, for the tax payers, and for our society as a whole.

Now that these issues are in the spotlight …. It is time for policy makers, employers, healthcare providers, health and disability insurers, other service providers, and affected individuals to start talking together about solutions — and then do their part to make those things happen.

For the last three years, Mathematica‘s policy researchers Yoni Ben Shalom, David Stapleton, and I have been collaborating in the SAW/RTW Collaborative sponsored by the Office of Disability Employment Policy in the US Department of Labor.  On September 13, 2016, Mathematica held a forum and webinar during which several speakers presented some actionable policy options that can improve outcomes and prevent needless work disability.

If you want to go deeper … Read my short Work Disability Prevention Manifesto by downloading it from the “Current favorites I’m Sharing” section on my blog homepage.  Or you can look at / listen to the recording of the SAW/RTW Collaborative’s September 13 forum/webinar..  Some of the ideas presented by the policy researchers came from surprising angles — and were quite creative / innovative!

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September 9, 2016

Pithy 4-min Video & 1-page Manifesto for you to use

Mathematica just released a 4-minute video of me pointing out why the work disability prevention model is important — in plain language.  The video was made at the request of the US Department of Labor’s Office of Disability Employment Policy (ODEP).  The main messages in the video are:

  1. MILLIONS of Americans lose their jobs every year due to injury and illness;
  2. Worklessness and job loss have been shown to harm physical and mental health as well as personal, family, social, and economic well-being;
  3. Worklessness and job loss should therefore be considered poor healthcare outcomes;
  4. Unexpectedly poor outcomes can often be prevented and there is good research evidence about how to do that;
  5. Changes need to be made so that vulnerable people get what they need at the time when they need it — and as a result are able to have the best possible life outcome, stay in the workforce, and keep earning their own living.

In addition, the video also explains WHY and HOW some people have unexpectedly poor outcomes of conditions that do not normally cause significant work disruption and job loss.  Unless you’re in my line of work, it is hard to understand why things turn out badly in some cases and not in others — especially if they looked exactly the same at the beginning.

The video is loosely based on a one-page Work Disability Prevention Manifesto I wrote.  I put a draft of it on this blog last spring and got many useful comments.  After many revision cycles, it is now as succinct and compelling as I know how to make it.  ODEP had no hand in the Manifesto; it’s my independent work.

I’m glad I can now share these two items with you because the WORLD needs to know more about these issues—and most PEOPLE in the world have a very short attention span and no interest in the topic to begin with.   I hope you will pass this stuff along to the people whose thinking you want to change or whose buy in you need. Then maybe THEY will pass it along to others as well.  Social norms ONLY SHIFT when people share powerful mind-opening ideas with one another.

Lastly, let’s all stop speaking ABOUT these problems.  It is time for us all to start speaking FOR action and FOR changes.

WORK DISABILITY PREVENTION MANIFESTO
©Jennifer Christian, MD, MPH August 2016

Preventable job loss demands our attention

  • Millions of American workers lose their jobs each year due to injury, illness or a change in a chronic condition.
  • Preserving people’s ability to function and participate fully in everyday human affairs, including work, is a valuable health care outcome, second only to preserving life, limb, and essential bodily functions.
  • A new medical problem that simultaneously threatens one’s ability to earn a living creates a life crisis that must be addressed rapidly and wisely. Most people are unprepared for this double-headed predicament. It can overwhelm their coping abilities.
  • When medical conditions occur or worsen, especially common ones, most people are able to stay at or return to work without difficulty. However, many prolonged work disability cases covered by private- and public-sector benefits programs began as very common health problems (for example, musculoskeletal pain, depression, and anxiety) but had unexpectedly poor outcomes including job loss.
  • Loss of livelihood due to medical problems is a poor health outcome. Worklessness is harmful to people’s health, as well as to their family, social, and economic well-being.

Why do such poor outcomes occur?

  • Medical conditions by themselves rarely require prolonged work absence, but it can look that way. Both treatment and time off work are sometimes considered benefits to be maximized, rather than tools to be used judiciously.
  • Professionals typically involved in these situations (health care providers, employers, and benefits administrators) do not feel responsible for avoiding job loss.
  • Unexpectedly poor outcomes are frequently due to a mix of medical and nonmedical factors. Diagnosed conditions are inappropriately treated; others (especially psychiatric conditions) are unacknowledged and untreated. The employer, medical office, and insurance company (if there is one) operate in isolation, with little incentive to collaborate.
  • Without the support of a team focused on helping them get their lives back on track, people can get lost in the health care and benefits systems. With every passing day away from work, the odds worsen that they will ever return. After a while, they start to redefine themselves as too sick or disabled to work.
  • When people lose their jobs and do not find new ones, they barely get by on disability benefits and are vulnerable to other detrimental effects.

How can we fix this problem?

  • Good scientific evidence exists about how unexpectedly poor outcomes are created, how to avoid them, and how health care and other services can protect jobs.
  • Health-related work disruption should be viewed as a life emergency. Productive activity should be a part of treatment regimens.
  • When work disruption begins, it can be both effective and cost-beneficial to have a coordinator help the individual, treating physician, and employer communicate and focus everyone’s attention on maximizing recovery, restoring function, accommodating irreversible losses, and making plans for how the individual can keep working, return to work, or quickly find a more appropriate job.
  • We must urgently establish accountability for work disability and job loss in our workforce, health care, and disability benefits systems and build nationwide capacity to consistently deliver services—just in time, when needed—that help people stay at work or return to work.
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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 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.”

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