Category Archives: Patient Education / Self-Care

July 28, 2016

Video on tools & techniques to aid recovery & RTW

You may like watching the video of a group discussion on Tools to Aid Recovery and Return to Work that was presented (and recorded) via Blab yesterday.  It was a stimulating exchange of ideas about both tools AND techniques with my colleagues Les Kertay, PhD and Chris Brigham, MD — as we each sat in our own offices.  Each of us were visible in our own little boxes on the screen.

The session was aimed at professionals in any discipline who want to hone their skills at working with individuals who are having trouble getting back on their feet.  It was sponsored by R3 Continuum and hosted by John Cloonan, their Marketing Director.

The video is now available on You Tube.  There are a few static-y and jumpy spots in the video, but I believe you will find the 60 minute conversation is worth your time.
Here’s the link to the YouTube version:  https://www.youtube.com/watch?v=jAwJFMD0hBo

Afterwards I talked to John Cloonan about Blab.  Apparently it has a built-in link to Twitter, so Twitter users can watch the live Blab video using Twitter’s Periscope capabilities.  Comments from Twitter users are fed to the Blab screen and are visible to presenters, which enables audience participation.  In addition, John was able to simultaneously link the live video to Facebook.   So while we were talking among ourselves, an unknown number of people were watching our discussion via R3 Continuum’s website, Facebook AND Twitter.   If you go any of those places, you can still find it.

Wow, talk about the ability to extend one’s reach and connect with many audiences!   Looks like John Cloonan (as a marketing guy who wants to disseminate messages far and wide) is drawn to Blab because it is possible to attach such a big social media megaphone to it!

As is typical with new technology, there are more challenges than are obvious at first glance.  For example, Blab works much better with a high-speed wired connection.  Some users may find their firewall is blocking it and have to figure out how to unblock it, etc. etc.  I had to restart my silly computer to get the microphone to work.  So having a “tech rehearsal” ahead of time was absolutely essential.

Les, Chris and I are all members of the Praxis Partners Consortium, by the way.


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.


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.”


June 22, 2016

Psychiatrist says we should use food to treat anxiety and depression

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

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

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

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

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

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

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

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


June 17, 2016

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

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

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

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

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

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

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

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

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

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

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


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?


October 19, 2015

WHY would I want to live to 101?

I am a bit upset and depressed because I just learned my life expectancy is 101 — according to the electronic calculator that analyzed my answers on the Health Age Questionnaire.  I found it on the website of the American College of Lifestyle Medicine.  It seems like a good organization aimed mostly at doctors who prevent chronic disease by prescribing and teaching healthy lifestyles.  However, they had better come up with a better argument for lifestyle change than this:   “Wow, if you do everything we recommend, you get to live until you’re entirely useless, helpless, and bored out of your mind.”

After I got the 101 prediction, I redid the questionnaire, this time shading several answers to the “sad” side instead of the “happy” side — and the darned thing STILL says I’m going to live to 94.  Phooey!  Who the heck WANTS to live that long?  NOT ME!   I can clearly imagine my quality of life is likely to be by then. By the time Americans get over the age of 90-something, the VAST majority are demented, frail, and unable to live independently — and I might add have become totally irrelevant in the eyes of the rest of American society, with a status more similar to pets or babies than adults.

That was my dad’s fate.   He died just a few days before he turned 89 — after refusing medical care for a heart attack because he had been WAITING for a way to die.  Before that day, his medical problems were basically age-related degeneration.

A Harvard College, Harvard Medical School grad, former Director of one of the National Institutes of Health, my dad re-invented himself and his career at least three times.   Originally trained as a pediatrician, he spent most of his career focused on child and maternal health, family planning, and other services to facilitate optimal development and health of the population.  At about age 50, he left the pressure of Washington DC, gave up on a difficult marriage to my mother, and moved to the Eastern Shore of Maryland.  He became a county health officer, developed a wide circle of friends and got involved in community affairs.  He was always a kind, optimistic, creative, and positive person, even though he didn’t have much of a sense of humor.  But his fun-loving second wife put him up to a lot of innocent mischief.  We have a photo of him in Florida wearing a lei on his head, a bra made of coconut shells and a hula skirt — and a HUGE SMILE (while stone sober, I may add).

Around about age 80 he “retired” from medicine.  And then, with some partners, he started a Sylvan Learning Center franchise and founded the Delmarva Education Foundation.  He was still in there pitching, though clearly slowing down.

Shirley, his beloved second wife died in May of 2006, the year he turned 84.   A few days after that, he commented to me “I’ll never be the center of anyone’s life ever again.” His zest for life was gone because she was.  She had cherished him and nurtured him — and vice versa.  He was lonely, sad after that, and grew increasingly bitter.  He had zero interest in finding a new companion or keeping up his social life. Treatment for “depression” had no effect.  My sister who lived nearby did yeoman work to be family and provide companionship to him — and do the practical work required to keep him in the housing complex for independent elders where he lives.   By the time she gave up and moved him to assisted living, there were FOUR part-time workers supporting him — plus her.  However, Daddy was right, of course — he never was the center of anyone’s life again.

He had already given me his healthcare power of attorney.  We had explicitly discussed his wish that I protect him from “the medical juggernaut” in case he was unable to do it himself.  He also did done some exploring of ways to exit gracefully.  I sent him an article from the New England Journal about what dying is like for patients with terminal conditions who refuse food and drink as they near the end of life.  But when my dad in Maryland discussed this with his psychologist, the psychologist pronounced the method both a sin and against the law — so Daddy resigned himself to sticking around.   In February of 2008, almost two years after Shirley’s death, Daddy (who could no longer write because of a worsening tremor) dictated this to his psychologist:

Because of my many disabilities – vision, hearing, etc. – I am happy to take advantage of the first opportunity that the Lord provides to join my wife Shirley in heaven.  My daughter Jennifer holds the medical power of attorney for me.  As a physician, she has the knowledge to determine what conditions are most likely to result in death, or result in disability that I would have to live with.  In the former case, I would like medical care withheld if my condition would ordinarily result in death, and would like for hospice to provide palliative care.  In the latter case, I will just ‘grin and bear it’.   I have made peace with the Lord in this decision, and ask that all my children support the decision that I have made.

As he neared 90, the burdens of age had became even heavier.  He still had no “terminal” conditions other than age.  He was deaf, could no longer read or see the computer screen due to macular degeneration, had a tremor, chronic pain due to joint degeneration, and was very weak.   He had lost all of his curiosity and most of his mental power.  At one point, he was on 14 different medications,  most of them with no discernible effect.  I asked his doctors to stop as many as possible because nothing could reverse the progress of aging.

In the end, Daddy handled his exit firmly and gracefully, by himself, when he developed severe chest pain.  He obviously recognized it for what it was — a potential way out.   He told the ER doctor:  “I’m just here to check and make sure it IS a heart attack.  If so, all I want is morphine, no treatment.”   The ER doctor, luckily, had her wits about her and suggested hospice.  He immediately said yes.  He lived less than a month — long enough to have one last Christmas Dinner with his kids and grandkids.  Then he let go and left this earth.

More than twenty years earlier, Daddy and I had completed a multi-scenario medical decision-making worksheet.  It was designed to make us think about and decide what we wanted our caregivers to do in various medical scenarios if we became unable to express our wishes. Surprisingly, that conversation wasn’t a downer at all.  In fact it was the best conversation I think I EVER had with him because we talked frankly and intimately about what made life worth living for each of us personally — and when it wouldn’t be worth continuing.   At the time, he said he wanted to be kept alive until he couldn’t enjoy the day anymore.   Yet as things turned out, he was forced to live four years after he had stopped being able to enjoy the day.  .

We humans have invented ways that are KEEPING people alive longer, but we haven’t yet invented ways to safely and humanely allow those who HAVE BEEN kept alive past the time when they find quality of life tolerable to say they have “had enough, thank you” and move on to the next realm.

I don’t want to share my Dad’s fate.  The idea of being sidelined, trying to think up “ways to pass the time” because I’ve become too deaf and blind to read or interact with others or do anything useful, beset with the chronic aches and pains of aging bones and joints makes me feel YUCK, or more accurately, DREAD.

Even if I were a “hale and hearty” 90 year old, I can’t think of a PURPOSE that I personally would find exciting enough to make life worth living when I’ve been alive that long.  “Smelling the roses” doesn’t do it for me — because I am already starting to feel like I’ve had my fill of a lot of things.  Been there, done that.  Been THERE and done THAT, too.

For the foreseeable future, my current purpose for living are these:
1)  Devote my energy and talents to leaving the campground of life better than I found it.
2)  Enjoy everyday life with my husband, family, and friends — and the outdoor world.
3)  Seek beauty and truth, especially in music, opera, theatre, dance, the visual arts, and spiritual practice.
4)  Grow in wisdom and kindness.  A VERY COOL thing is that personal growth & development in these two areas are available to all ages, including the very old (ahem, until dementia sets in).

What does this mean for you — if anything?   Maybe you could think about what makes life worth living for you.  It will make you feel STRONG and GOOD to do it.    Fill out a Five Wishes living will from Aging with Dignity that gives your caregivers instructions for how to care for you in case you can’t tell them yourself at a critical moment.   And, do think about what you want the quality of your life to be like and how long you DO want to live.   Do YOU really WANT to live to 101 or to 120?  Why?  What FOR?


October 14, 2015

Let’s stop using words with a “nocebo” effect!

I hereby nominate the first three candidates — the terms “I can’t”,”injured worker,” and “injury”– for elimination from the lexicon of workers’ compensation because they are causing harm.  After having talked with Kristina Phillips again about her trouble with her workers’ compensation claim, I see the negative impact those three terms have had on her life.

Kristina’s had a very rocky course with initial denials of coverage for some parts of her injury, long delays of authorizations for specialty as well as rehabilitation care, unhelpful advice from the state’s ombudsmen, an unresponsive attorney, multiple court hearings, etc — all while she has been living with ongoing pain and limitation of motion.  She’s better, but not ALL better yet — and it’s been 18 months since she was attacked on the subway.

As we talked, she remarked that she finally woke up and realized that in order to get better she HAD to stop using the phrase “I can’t” and replace it “HOW CAN I do this?”   Every time she said “I can’t”, her world got smaller.   She was becoming a hermit.  She had stopped leaving the house whenever it rained or during commuting hours because she was avoiding the New York subway system.  Because they are so crowded, Kristina was concerned about being jostled which causes her pain.   She was unwilling to explain her situation to strangers and ask them not to lean into her or push her, much less ask them to move their stuff so she could sit down.  Shortly after she swore off “I can’t”, she realized she also had to start asking for help.  Once she became comfortable with telling people she has a problem, it has been gratifying to see how kindly most of them respond. The new approach has allowed her to expand the times when she can use the subways — which means she is out and about more frequently now.

That got me to thinking.  I had heard Kristina mention her “injury” several times. She kept talking about it as though her wounds are still present, despite the fact that her injury occurred 18 months ago.  In fact, those injured tissues have probably been healed for more than a year.   What she’s actually dealing with are the consequences of the injury, not the injury itself.

Calling oneself “injured” is similar to calling oneself “sick” — in a vulnerable state with life disrupted, out of commission, off on a sideline away from the regular rhythm of life.  Someone who describes themselves as “recovering” or “dealing with the aftermath” may be struggling, but it’s because they are wending their way back into the mainstream of life.

I suddenly realized that the WORD “injury” has probably been intensifying Kristina’s distress and symptoms, and delaying resolution of this episode in her life.  That is by definition the “nocebo” effect — the evil twin brother of the placebo effect, in which words or beliefs or sugar pills relieve symptoms and allows healing.   So, I recommended that “injury” should be the NEXT term she stops using to describe her current situation.   And on the spot, I educated her about the basic biology of how fast tissues heal.

It depends on the type of tissue.  Generally speaking, the cornea of the eye heals in about 24 hours; a simple skin wound usually takes 7-10 days; bones and muscles often take 6 weeks, sometimes 8 to 9 and occasionally 12 weeks.  Nerves can take months (and sometimes years) to regrow.  But as a rough rule of thumb for most injuries, all the tissues have usually healed by 90 days — no matter what happened.  Additional gains may be made slowly for a year or more, often as the result of rehabilitation and reconditioning.   Function and comfort often continue to improve after healing is complete.

One way to see this clearly is to take the case of a person who suffered a major body burn — a widespread and deep one that went down into the muscle.  The burning itself was over in minutes.  Some areas of skin and underlying tissues were destroyed and other areas were left damaged and weeping.  The tissue healing process was in full swing by 7 days and by the time it was complete, had produced extensive scar.  The skin was as healed as it was going to get, but it left behind stiff and painful scar.  The scar is a CONSEQUENCE of the injury, not a sign that the burn injury is on-going.   Rehabilitation for burn patients focuses on minimizing the impact of scarring on appearance and function.

Kristina listened hard and seemed to “get it” – but not completely.  She is still in the habit of viewing herself as “hurt” (fragile).  When something happens and she feels pain, she may be interpreting it as a sign she is being damaged or re-injured further – rather than seeing herself as a person who is stuck living with the painful (but harmless) consequences of a previous injury.

So, in my view, the most accurate way to describe Kristina’s situation is that she HAD an injury and is still dealing WITH and recovering FROM its effects.  The injury is in the past.  It is not accurate to say she still HAS an injury.  The choice of words make a real difference.

And lastly, the term “injured worker” has got to go because those words communicate no possibility of either recovery or a positive future.  How can people who’ve had an accident at work ever consider themselves well as long as they are being called by that name?  That term doesn’t even hint at the fact that the vast majority of people who have an injury recover promptly and heal completely.  The unlucky people who don’t end up fully healed are left with things like scars and stiff joints, not unhealed wounds.  The previous term “claimant” was discredited and abandoned because it was too impersonal — but it did not doom the person to a negative and unchanging future.

All along, Kristina has been strongly motivated to get better and get back to earning a good living.   She has been doing everything she can to get herself better and to advocate for herself in the “systems”.  Imagine the “nocebo” impact of these three terms on a person without the inner resources Kristina has brought to bear!

What does this mean for you?   If you are involved with the workers’ compensation system, please abandon the term “injured worker” and “injury” when discussing events longer than 3 months ago.  Talk about “recovery” or “recuperation” instead.  And maybe we should go back to “claimant”, or an even better term.  For now, a few of my colleagues and I have started saying “affected person”.   And if you are a person who had a musculoskeletal work-related injury more than 12 weeks ago, please assume that your tissues are healed.  And, like Kristina start saying “how can I do this” instead of “I can’t.” It is time to start dealing with the consequences of that injury and get the whole thing behind you.   Focus on accepting what you’re stuck with (at least for now), rehabilitate yourself, get back in the best shape you can — and focus on minimizing its impact on the quality of your life and your future!


October 8, 2015

Dan Siegel says I can use my mind to reshape my brain — or YOURS!

I’m in the middle of taking an on-line course by Daniel Siegel, MD.  I hope you do, too.   It’s called “Practicing Mindsight” — 6 hours consisting of 32 video mini-lectures delivered live to an audience of about 240 mental health professionals, physicians, educators, as well as organizational behavior and social policy wonks.   (I’ve also  heard a great TED talk by this guy).  He’s a famous psychiatrist, trained at Harvard Medical School and UCLA, now clinical professor of psychiatry at UCLA, an award-winning educator – and expert researcher in the emerging field of “interpersonal neurobiology”.

It’s on a website called www.Udemy.com.  I’ve listened to the first 9 mini-lectures so far.  He began by asking how many of the professionals in the audience think the mind is important in everyday affairs — and in their practices/organizations.  All hands went up.  Then he asked how many had any instruction on what the mind is?   Five percent raised their hands.   He says that the proportion has been similar in 85,000 professionals he has asked.   He  says the purpose of the course is:  How to see the mind and make it stronger.    I say the course is focused on STRATEGIES for changing the STRUCTURE of the brain (one’s own and that of one’s patients/clients) by using the mind.   Think of that:  USING the mind as a tool to INTENTIONALLY remodel circuits in the brain.

Here are three big points I have heard in his lectures so far:

(a) Key definition:   The mind is a PROCESS not a thing.  It REGULATES (monitors and directs) the flow of energy and information both within an individual and between people.  (Energy is roughly defined as stuff that makes things happen.  Information is both data and meaning or story.)  As part of his grant-funded work, he had put together a group of 40 researchers in a wide variety of fields who were all (eventually) able to agree on this definition.

(b) “Attention” – which is where the mind focuses, what it is paying attention to  – is what CREATES new neural pathways, and STRENGTHENS either existing or new ones by reinforcing the pathway.  As the saying goes: “neurons that fire together wire together”.  For example, the more we pay attention to our pain (assessing it, worrying about it, “fighting” it), the deeper we are carving that channel.  Common sense, grandmothers, and “New Agers” have been telling us for years to focus on what we DO want instead of what we DON’T want  — and now science is confirming it.

(c) Humans are genetically programmed to AUTOMATICALLY create internal experiences and capabilities that mirror or incorporate things they see or feel during interactions with others.  As we watch someone else raise a glass of water to his lips, the cells in our brains that move our own arms light up.  We sense his intention to drink, we may experience thirst, or the sensation of water or of refreshment.  We feel sad when someone cries, and are happy at their joy.  Others’ brains shape what goes on in ours —  what circuits are firing and being reinforced — and vice versa.  Simultaneous mutual (interpersonal) experience is a KEY part of the “social” in our “social species”.

So I got this:  The techniques we use to SHIFT our attention (or another person’s attention) away from bad stuff and towards more productive ways of thinking are actually MODULATING neural circuitry in the brain (which is neuroplasticity in action).  This has now been confirmed by rigorous research on techniques such as mindfulness, CBT, etc.   (I personally remember reading a study which showed that SIMILAR changes in the brain can be observed after either medication OR “talk therapy”.  In that TED talk by Siegel that I watched, he asserts that much of the circuitry in our frontal lobe is created and shaped by everyday INTERPERSONAL INTERACTIONS which DEVELOP it – and of course it is our frontal lobes which make us uniquely human.)

The takeaway for us as physicians in tangible organ-system-focused specialties is there is POWER TO HEAL in our words —  and in the human quality of our interpersonal interactions.  We have an opportunity to INTENTIONALLY HARNESS that power and explicitly add it to our therapeutic armamentarium.

Although the mental health professions already are aware of the power of words and relationships, physicians are on the front-line dealing with patients with PHYSICAL complaints and distress.  We are in the best position to use the power of words and relationships to start relieving those symptoms and easing that distress — even if all we do is alert the patient to the healing power of the mind and persuade them to accept help from a mental health professional.  Apparently, the only specialty these days that requires training in patient communication is family practice.  Thus, this appears to be a neglected skill area in all of the other medical specialties.

Those of us who have accepted the idea that sickness and disability are the COMBINED product of bio-psycho-socio-economic factors, and who are setting out to reduce the disruptive/destructive impact of injury/illness on quality of the patient’s everyday life and future – especially in at risk cases and “heartsink patients” — MUST master this stuff.  We need to practice the SCIENTIFIC ART of empathic therapeutic interaction.  We must learn how to effectively redirect the patient’s attention into more appropriate channels so they develop their own capability to adapt to / cope effectively with their own situations.

The tuition for the Siegel Practicing Mindsight course is usually $137, but if you follow the directions below, you may be able to get a $39 special rate.  It supposedly ends TODAY — although it supposedly ended yesterday, too.  Some people don’t seem to be able to find the $39 offer.  There’s probably a glitch of some kind that is making it show up only when you wend your way through the electrons a particular way.

Here’s how I found it again just now:  I use Firefox.  I entered  “daniel siegel mindsight” in the search box, then I clicked on the link for an Udemy ADVERTISEMENT that appeared in the top left corner of the search results.  The website that appears says the rate is $39 again today (coupon valid until October 8).   But when I went STRAIGHT to the udemy site, the cost is $137.

Go for it — fool around, and then REGISTER!   But bring your brain AND appreciation for quirkiness with you.   This is  fascinating material taught by a deep and independent thinker, serious expert and experienced researcher.  And, Siegel is a character with really colorful personal stories:  so far we’ve heard tales of misfittery in medical school, salmon fishery, dance, nudity in Greece, etc.


August 12, 2015

Who will address working people’s reasonable concerns when illness or injury disrupt their lives?

What do working people wonder and worry about when their lives (and work) have just been disrupted by a new illness, injury, or a change in a chronic condition?

While creating a course to train doctors how to meet their patient’s needs, we realized we had to know what those needs were.  It seemed obvious that patients would want to know what is wrong with them and what kind of medical care they need.  But beyond those things, we came up with a list of predictable and totally reasonable issues:

How long am I going to be laid up (out of commission)?
How long do I have to take it easy?
When I can go back to doing my usual stuff?
In the meanwhile, what can I still do? What shouldn’t I do?
What can I do to speed my recovery?
If I can’t work, how will we pay our bills next month?
When will life be back to normal? …..if ever?
What does this mean about me?   My future?
What is this going to do to my livelihood?  What will this do to us financially?
Who will help me?  Who can I trust?  Who has my best interests at heart?

I often show this list when I am speaking to groups about how to improve outcomes for people with common health conditions like back pain.  It always rings true with the audience.  After one presentation, an influential executive (in a wheelchair with quadriplegia) told me that she had had all of those concerns immediately upon awakening after her accident.

Here’s my question:   How are people getting these questions and concerns answered — when and by whom?  The standard design of a medical visit (memorized by all physicians during our medical training) DOES NOT include a time for doing it.  There is no sub-heading in our report format called:  Patient Education,  Instruction, and Guidance.  If it is happening, it is spotty at best.

So if most doctors are not answering these questions, who is?   Which of the other professionals who are responsible for responding to life & work disruption in working people IS going to address them?   Unless one of these “experts” does so, the people will have to come up with their own answers.  Yet how many are prepared to do that?   They will come up with their own best guesses (which may be wacky) or may turn to their family, friends, co-worker, neighbor, union steward, or a lawyer for answers (who may or may not give them a bum steer).

What does this mean for you?  If you are committed to better service (and/or want to avoid the trouble caused by bad advice), figure out a way to meet people’s totally reasonable needs for information and advice.   If you are a treating clinician, consider making a revision to your standard visit protocol and report templates by adding that missing section:  Patient Education, Instruction & Guidance.

Another simple idea for healthcare providers, employers or insurers is to create a standard operating procedure to mail out or hand out a brochure.  The 60 Summits Project developed a fact sheet for employees whose health conditions have just started to disrupt their work — and a fact sheet for supervisors on how to manage the situation in the workplace..  Feel free to use these sheets as is, or remove the 60 Summits logo and revise them to suit yourself.  But please do SOMETHING!