Category Archives: Patient Education / Self-Care

April 17, 2020

Stop COVID-19: Get a mask on every face!

If you’d like to pitch in to help stop COVID-19, we’ve just launched a new website called Everyone Gets a Mask! that has all the stuff you need to do these things:

  1. Organize a team project to make and distribute large numbers of high quality homemade cloth masks to everyone in YOUR community* (in coordination with other local groups as necessary), OR ……
  2. Find and join an existing group doing something similar, OR ……
  3. Make a few masks for you and your family.

Q: Why is NOW the right time for you to take action?
A: It is now clear that COVID-19 is often spread by people who feel fine and don’t even know they are infected — and who are simply breathing, talking, laughing or singing! None of us want to be unwitting spreaders. On April 3, the US Centers for Disease Control (the CDC) recommended a step-up in protection in areas where there is COVID-19 activity: wearing cloth face coverings when out and about (in addition to social distancing, hand-washing, surface-cleaning, and covering coughs and sneezes).

Q: What needs to happen?
A: Over the next few weeks, our country needs to get cloth masks on the faces of almost everyone in every community* affected by COVID-19. Some people can’t wear masks, so we’ll never get to 100%. Experts predict that when 60% to 80% of us are wearing masks, as well as doing the other preventive practices, we will be able to slow or even stop the pandemic.

Q: Why cloth face masks?
A: Homemade cloth masks provide a lot better protection than none at all! As long as there is a shortage of manufactured surgical masks and N95 respirators, they must be saved for healthcare and emergency response workers. High quality cloth face masks filter much more effectively than poor quality ones. Everyone Gets a Mask! has technical specifications to guide you.

Q: Can masks do more than prevent infection?
A: Yes. They are a visible signal of unity and good will — concrete evidence that the wearer is caring for others in these hard times: “I am protecting you; you are protecting me.”

If you like these ideas, please check out the Everyone Gets a Mask! website then help this concept go viral by passing it along to people of good will – in your community* AND all around the country. The website was created as a gift to you, your family and friends, and your community* by a three-person team: Claudia Hix DO, David Siktberg MBA, and me, Jennifer Christian, MD.

* When we say your community, think of everyone in it:
• All the people in your family, neighborhood, company, club, congregation, civic organization, town or even county, including those who will be heading back to work in the next few weeks;
• Plus those who come to work in your area — especially those who provide essential services (who work in healthcare facilities, public safety and emergency response, grocery stores and pharmacies, delivery services, utilities, etc.), as well those who will be heading back to work;
• And the elderly or other individuals with risk factors that put them at higher risk of severe COVID-19 illness.

Remember: Over the next few weeks, our country needs to get cloth masks on the faces of almost everyone in every community affected by COVID-19. So please pass along this posting — or just the link (Everyone Gets a Mask! or www.webility.md/masks) — to as many colleagues, friends, family and organizations as possible in communities around the country. This applies – to those in areas that are experiencing the full fury of COVID-19, and those where the curve is clearly rising or may still rise.

And please tell us if you see something that could be clarified or improved – or share a story about what you have done with the website or the kit itself! We’ve already made a lot of changes based in input from others. Email us at masks@webility.md

1 Reply

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.

2 Replies

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

1 Reply

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.

2 Replies

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.

Leave a reply

June 28, 2016

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

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

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

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

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

BACKGROUND:

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

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

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

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

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

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

MY SIMPLISTIC ANALYSIS OF THE REASONS FOR LOW USE

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

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

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

GOTTA FIND A WAY TO MAKE THIS WORK

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

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

Leave a reply

June 22, 2016

Psychiatrist says we should use food to treat anxiety and depression

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

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

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

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

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

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

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

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

Leave a reply

June 17, 2016

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

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

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

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

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

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

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

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

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

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

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

Leave a reply

June 7, 2016

Enigmatic 4 minute video of boy and puppy

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

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

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

What did you see in it?

Leave a reply

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?

1 Reply