Says Who??

Verstehen, through shared perspectives


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RESPONSE TO DR. JEFFREY FUDIN’S REQUEST

In Dr. Fudin’s post today, comPASSION Fatigue https://t.co/rilJGgQxFG , he defines Compassion Fatigue as “essentially a form of burnout common to those of us who actually care.” He and his co-author explain the problems of advocating for good care for chronic pain patients while navigating the endless stream of misinformation, outright lies, overreaching legislation and its advocates, and the inability to understand the differences between the illnesses of substance addiction, and the suffering of chronic pain patients. “[W]e continue as a society unable to hold two thoughts in our heads, the suffering of the addict now that rules the day and the suffering of the pain patient has been relegated to a bottom dweller,” the article states.

Since most fail to listen to anyone they do not agree with, and no one seems to care about truth in advertising, chronic pain advocates and their physicians (and pharmacists) grow disillusioned and weary of the task. I urge the reader to use the link above to read this very relevant article, where the authors make a much more articulate argument for the case than I have made here, as well as reporting important new information.

However, it is not my intention to simply report on the article or its excellence. The authors realistically ask a very relevant question: Is anyone out there still playing the game? Are we still actively advocating for chronic pain patients? My answer is difficult to write.

Having been an undertreated chronic pain patient for well over 40 years, as well as a nurse in a county jail who worked with police, substance abuse addicts, and drug dealers, I believe my claim to a broad understanding of the situation to be credible. I am also well trained in both statistical and qualitative research as a result of my graduate degrees. Yet I am repeatedly called out as ignorant, as a probable drug seeker, or as simply being wrong about everything. I do have pretty thick skin, having been an academic dean for several years, and while friends compliment me on my ability to persevere, my parents called it “stubbornness.” But so far, it has served me well.

Again, I hate to quit, or to give up on a good cause. But at my age I have learned to pick my battles. I have only so much energy, thanks to my years of pain and the many disease processes that have resulted from that pain.

At the same time, that last sentence explains exactly why I have chosen THIS battle, and I will not give up or shut up. You may not see me in writing as often, because I am tired and ill much of the time. But I will write, and I will talk, and I am definitely still in the game—just benched to rest a little more often. I am far from being alone in this situation, and I no more want to see hundreds of thousands of others suffer than I wish to suffer myself.

Meanwhile, here is a thanks to Dr. Jeff, and to all the compassionate pain management physicians (especially mineJ) who stay in the game despite all the prejudice, dishonesty and even the honest ignorance and misunderstanding that muddies the waters and stains our souls. Then too, the devastation of the lives ruined and lost unnecessarily because of undertreated or ignored pain, and the new rhetoric that is based on the notion that we are all alike and our pain should be treated the same, accordingly. And let us not forget to acknowledge those compassionate physicians who have lost so much after being targeted and charged by federal agents with no accountability for their actions when they were wrong.

I am beginning to ramble, so I end with this statement: The pain of burnout and the pain of disability cannot end this battle. It is too easy already for many to forget or deny the reality of our existence. Our voices must continue to compel the truth into being.

Talmud quote


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I AM NOT A ROBOT (not a Luddite, either)

robot pt

Last summer my beloved Mercury Milan decided to give me mechanical problems, for the first time in the five years I had owned it. It simply refused to start occasionally, without any causality that my mechanic or I could discover. After several nerve-wracking months of this (along with the inevitable and infuriating responses from mechanics: “It starts just fine for me”), I was ready to drive it into the Ohio River. It probably would not have started so I could get it there, though.

I finally convinced a mechanic at the dealership to put the car on the computer for diagnosis. As both a former nurse and present patient, I liked that word diagnosis, and had no qualms about using it for the vehicle I had anthropomorphized by naming it Mahitabel, projecting both positive and negative emotions and reactions on its “behavior,” and more recently developing a love/hate relationship with it. The diagnosis, according to the computer, was that on several occasions in the past few months someone had tried to start my car with a key that did not belong to the car. Therefore, it did not start.

It took about ten more minutes of questioning by the mechanic, who proposed the possibility that someone was trying to steal my car, and answers by me insisting that this made no sense at all, before he looked carefully at my car key. It was bent, and one tiny place may have been chipped. He made me a new key and my buddy Mahitabel and I have traveled together predictably and smoothly ever since.

My point? The computer (a machine) understood more about my car (a machine) than both the mechanic and the owner. Yet both the mechanic and the owner had to engage in some research and analysis on the human level before the “diagnosis” could be corrected and treatment applied. The computer supplied data based on its programmed knowledge of the vehicle; the humans provided the ability to utilize both inductive and deductive reasoning, applied to real-life, present-world situations, to ascertain the actual problem.

This brings me at last to the reason I am writing this post. Two years ago, I posted “The Healers,” in which I compared the observations and insights of an African traditional healer with the best of today’s physicians, noting that in each case the healer was most effective when working as a caring and observant human healer to a human patient. I concluded that computers could not take the place of any physician true to his or her calling https://www.maryleejames.com/2014/08/08/the-healers .

Two years later, I have more reason than ever to challenge the efficacy of computers in the exam room of a physician’s office. In fact, I would go so far as to say that along with insurance company rules and overreaching legislation intended to make physicians toe the (sometimes contradictory) lines drawn by groups of people who lack the training and calling of the physician, the present demands of computer program doctoring have the capability of being the last straw that finally destroys medicine as we know it.

As the title to this article insists, I am not a Luddite. I love technology, especially when it works. I love the capabilities of the internet, and the ability to keep up with friends and relatives both far and near. I enjoy being able to get online on a busy day and save myself hours of shopping, and have the desired object delivered to my door within 24 hours. I love needing an answer quickly, and finding it; needing an outline of resources for research, and locating them with ease. But it is also these answers and resources that become the problem. I have to exercise my ability to discern the junk from the credible; the scams from the honest reports, because all that this wonderful piece of machinery can provide me with is the data that has been entered, just like my experience with the computer at the car dealership. It can’t make human judgements for me. Without my education and my experience, the overwhelming amount of unquestioned data could get me into a lot of trouble.

Therefore, I am concerned about the time my physicians must spend entering data about me into a limited machine. I am a sociologist, after all, and acutely aware of the reality that whenever humans are the subject of analysis, results are immediately complicated by a lack of predictability, and of psychological understanding; accuracy is also complicated by the uniqueness of every human being and his or her response to a given situation, whether physical or otherwise. And no situation for any patient is completely within the realm of any one discipline. We are affected by more than our pain—we are emotionally affected by its consequences, or by outside considerations that have nothing to do with the pain, but that affect our lives. We are affected intellectually by our understanding of the meaning of the pain, and what it may mean for ourselves and those closest to us; this translates again into emotional effects, which may or may not complicate the situation of the pain and therefore any understanding of the real diagnosis and best treatment.

That only considers the tip of the iceberg. It is dehumanizing to both doctor and patient to reduce medical practice to the inadequate data that can be acquired from, or placed into, a machine. It is dehumanizing to try to explain one’s most frightening and intimate problems to someone who may never look you in the eye, or ask a question not required by the computer program. Especially when that computer operator is frustrated because he or she is not familiar with the program, or because it is not working properly. How do you know if the diagnosis or treatment is going to be safe and effective under these circumstances?

Worse, how do you trust that the information entered into that computer is correct? I can’t tell you how often I have read reports of my office visits only to wonder whose record has been confused with mine. I have read “patient states” something I not only did not state, but that wasn’t true. I have read reports of findings of physical examinations that never took place….and also failed to accurately reflect my physical condition at the time. Yet in years past—even after computers were commonplace—when doctors simply dictated their reports of office visits the results were informative, correct, and usable. I know, because for years I used to type up those dictated reports, and saw letters of thanks from recipients like other physicians, insurance companies, and physical therapists who were able to understand and make use of them.  I even learned a lot of medicine from their logical presentation of cause, effect and treatment.

Even more important, however, is the effect of human touch: The caring hand on a shoulder while explaining a difficult prognosis; the gentle holding of the hand of a terrified patient. The healing effects of caring human touch cannot be measured, and certainly cannot be replaced by a machine of any kind.

I do not propose to take computers away from medical practice, but only that the computers not take the physician away from medical practice. We were intelligent enough to invent computers, and I would hope that we would be intelligent enough to discern the times when their data gathering and sorting capability can be used to best advantage, while the very human, intuitive and caring abilities of our physicians remain in the human realm where they are most effective. Perhaps then physician suicides might drop from more than 400 each year, and more brilliant young people might consider the medical field desirable.

 We need human physicians, because we are not robots.

robot doc


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EXPECTATIONS: Helpful and Otherwise

OLYMPUS DIGITAL CAMERA

Overheard in a college hallway: “I am who I am! I cannot be responsible for his expectations of me.”

The tone of voice was stressed, angry. The speaker was obviously struggling in some relationship where she felt the pain of believing she was expected to measure up to some standard with which she did not agree, or believed she could not meet. Her anger at not being accepted for that of which she felt capable seemed fed by her guilt that she had not measured up to the standards of someone important to her.

Or, was I projecting? Was I reading too much into a simple declaration, simply because it resonated so deeply? Who among us has not at some time felt the pangs of inadequacy, having somehow failed to be the person that a parent, teacher, friend or spouse thought us to be? More important, who of us is not guilty of verbally projecting our expectations on another in a judgmental fashion, capable of stripping the other of self-confidence and a sense of belonging.

Strange Family

Strange Family

As the Academic Dean of a small college in an rural area where students received a suboptimal education, as both student and faculty advocate I was often called upon to mediate the issues arising when faculty from more cosmopolitan backgrounds failed to recognize the intelligence and potential of their students, judging them only on their failure to have been adequately prepared for college level work. Faculty would often disparage the students publically, claiming they would not work, could not learn, and should not be in college. Their expectations of the students were as low as their claims, and the relationships between those faculty and their students were broken and painful. Neither group expected anything good to come from the other.unhappy 1

Yet my own experience with these students was that on the whole (of course there were exceptions – there always are) the more I expected from my students and the more I recognized their exceptional qualities, the harder they worked and the more they succeeded. Further, they returned my love and respect for them, and for each other. The same was true for my students in Africa, as well as for my students in a large city-based university.

The principle, I believe, crosses cultures and generations. I first heard it stated from a young OB-GYN physician who had been charged with overseeing residents, interns and patients in a central city hospital clinic. I had the privilege of working for him as he changed the appearance, the attitudes, and the quality of care at that clinic. Where it had been said patients were “herded like cattle” into the clinic area itself, and then into exam rooms where they were prodded, talked about over their heads between the teaching and learning physicians as though the patient was a dumb animal, where the environment itself was dirty and depressing—there was change. In an attractive, welcoming environment where every patient was treated as well as paying patients in a private doctor’s office, we were able to observe the change from surly, quarrelsome and often unwashed patients to patients who were no different from those in any doctor’s office, where they trusted their caregivers and returned the respect they were given.

What that young physician believed and lived by, and helped everyone around him to emulate, was the statement he always made: “People will respect themselves and act accordingly if they are treated with respect and dignity.” Most did just that.

What I told my faculty members was “These students will live up to—or DOWN to—your expectations. Either outcome will be elicited by your treatment of them.”

Expectations make us or break us. Expressed in love as realistic possibilities that honor and dignify the humanity of the other, they can inspire. Expressed as a judgment of the failures of the other, or as a goal absolutely not in accord with the dreams and goals of the other, they are destructive. And that includes the expectations we have of ourselves.

self-confidence


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OPEN LETTER TO MAYORS, GOVERNORS, AND MEMBERS OF STATE AND FEDERAL GOVERNMENT

I don’t understand it. In fact, I find it deeply painful and disturbing. For months now, I have experienced the reluctance of most officials to hear the requests of chronic pain patients—and even of their care providers—to officially proclaim a Pain Care Providers Day on March 20th. They seem unable to open their hearts and minds to the reality of the huge difference between people who actually constantly suffer in pain, and people who use drugs recreationally whether or not they become addicted to them. They do not see the hundreds of dedicated men and women of great integrity who practice medicine with honesty and skill, because they are focused on the tiny percentage of people who obtained MD degrees for the sole purpose of opening up yet another pathway of delivering drugs illegally.

Historically and cross-culturally, recreational drug use has existed since earliest human history. Drugs and wine have been consumed ritually in religious and cultural traditional performance. Drugs and their use exist, and as we learned repeatedly throughout history, prohibiting them only results in increasing their illegal presence and use.

In contemporary experience, other countries have decided to legalize and regulate drugs, just as they have done with prostitution and other vices that disrupt societal stability. And it has worked great improvements, where carefully planned and executed!

Even in America, we are at least learning that addiction is an illness of the brain, and that it is less likely to occur in elderly people, or with people who suffer severe chronic pain. This is a huge step in our understanding, and if nothing else the campaign to acknowledge and show our gratitude for our pain care providers has helped to advance research in this area, and publicize the results. That is REAL progress!

Before I write another word, however, I must also state my profound gratitude to those officials who HAVE supported and proclaimed Pain Care Providers Day. The day will be observed by those of us (and we number in the millions!) who have benefitted from the patience, skill and dedication of physicians, pharmacists, physical therapists, physician’s assistants, nurse clinicians, nurses, EMTs, medical techs in all areas of medicine, nurse’s aides, and especially those who sacrifice many of their own needs to care for chronic pain patients in their own families or neighborhoods. What they do is life-giving, needed, and produces results that range from easing intolerable pain and/or doing for us what we are no longer able to do for ourselves, all the way to helping us regain the ability to be a productive member of society. Though it is insufficient to truly acknowledge the huge debt we owe you, we do say THANK YOU, AND MAY GOD BLESS YOU ACCORDINGLY!

IT IS NOT TOO LATE. FRIDAY, MARCH 20TH IS PAIN CARE PROVIDERS DAY. If you are an official with the power to proclaim the day, please…please have the compassion to do so. If you have not asked your mayor, governor or representative to proclaim the day, please take the time to think about your friend or relative who cares for someone in pain. Remember the medical professionals who care for these patients under great pressure from drastic regulations that threaten their very lives. And remember to thank those officials who have already had the courage and conviction to proclaim this day.

And don’t forget – on Friday, March 20th, the first day of Spring, do something special for your pain care provider. Send them flowers, or a thank you note, or just give them a hug! Let them know how very special and necessary they are to you and to all of us.

The US Pain Foundation has provided a sample proclamation for Pain Care Providers Day.  It can be found at http://goo.gl/qPsfCL.


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PERSPECTIVES ON PAIN CARE PROVIDERS DAY

As I write this post, the date is February 1st. When I noted the date this morning, my reaction was “Finally! February is here. What a relief!” I surprised myself. The first 28 years of my life were spent in western New York State, so I can assure you that this is not my normal reaction to the first day of February – or any other day in February, for that matter. February was always the month when Seasonal Affective Disorder (SAD) reached its peak: Gray days, dirty gray snow, cold days and colder nights, chapped skin, shoveling snow day after day – by the second month of the year the reality of winter was enough to send me into at least a minor depression.

…Until recently. Chronic pain has for years held an even greater power in my life for bringing on depression, especially after a few long months of winter weather. However, once I had become convinced that my thought patterns and beliefs could actually make my pain even worse, I decided to try an experiment. Last year, I decided that instead of suffering through the blues of February – or grays, if you prefer – I would welcome the month as a certain sign that we were on the downside of winter, and better days were ahead.

That was actually true for me in several ways last year. I did concentrate on thinking positive thoughts about February, which was no small achievement. I also met my pain management physician that month, and had two epidural procedures which alleviated my pain enough to allow me to manage several other medical problems over the following months. I didn’t think any more about my experiment until this morning, when I surprised myself by welcoming the thought of February. My perspective has certainly changed.

All this soon led me to thoughts of chronic pain, and the Pain Care Providers Day campaign. I thought how over this past year I have watched and read about chronic pain patients who have joined their voices and efforts to bringing about national awareness of the hundreds of thousands of people who exist with daily, even constant, severe chronic pain. I thought of those professionals and clinical personnel who have joined to champion the cause of those people that they care for, day in and day out. And I remembered the families, and friends, and neighbors who join in to assist people who cannot always manage on their own, and who have also supported this campaign.

As I looked back over the year, I realized that attitudes are changing. Perspectives are changing. Many people who have been victimized by both their own bodies and by unreasonable laws and regulations regarding their care have refused to be labeled victims. They have found their voices, and are speaking out, demanding to be heard and treated fairly. And they are being supported by the voices and efforts of their caretakers.

Physicians are pushing pharmaceutical companies to produce medication that will not harm their patients. Medical societies are pushing for multidisciplinary approaches to treatment for chronic pain patients that will be more effective. During the month of September 2014 we celebrated Pain Awareness Month, and more people joined the efforts to bring new resources to the treatment of chronic pain.

So now, on March 20th, 2015, we will celebrate Pain Care Providers Day (PCPD).

What is this day all about?

It is definitely NOT about drugs. It’s not even about chronic pain patients, per se. It is about celebrating the steadfast and selfless gift of presence and help by all those who have cared for us all these years when we have generally been thought of as malingerers, hypochondriacs, drug seekers, or worse.

Admittedly, we chronic pain patients are not always easy to deal with. Sometimes it is difficult to discover what has caused our pain. Sometimes we are cranky, angry, depressed, uncooperative, or downright mean. Sometimes we are hopelessly fatalistic. Sometimes we are suicidal, because the pain and isolation is winning out over any potential for loving life. Yet our caretakers and providers are still there.

But there is hope—which for many of us, is an entirely new perspective.   Awareness is happening throughout the nation, thanks to the campaigns, and more changes of perspective are taking place in unique places. Some people are actually changing their opinions about pain care providers and their patients. Of course, it takes longer for government agencies to adjust their perspectives, but with all our voices together, we can and will be heard. And those who have cared for us will still be right there, working alongside of us. And on March 20th, the first day of Spring—a day of hope—we want to celebrate their presence and work in our lives, and what it has meant for us.

 For our pain care providers, and for those who will join their ranks in future generations, I offer the following statement in support of these achievements, and these changes in perspective. It was written by Henri J. M. Nouwen, and I have borrowed it from his delightful book Bread for the Journey:

 Joy is hidden in compassion. The word compassion literally means “to suffer with.” It seems quite unlikely that suffering with another person would bring joy. Yet being with a person in pain, offering simple presence to someone in despair, sharing with a friend times of confusion and uncertainty…such experiences can bring us deep joy. Not happiness, not excitement, not great satisfaction, but the quiet joy of being there for someone else and living in deep solidarity with our brothers and sisters in this human family. Often this is a solidarity in weakness, in brokenness, in woundedness, but it leads us to the center of joy, which is sharing our humanity with others.

 

Please join us in celebrating Pain Care Providers Day on March 20th. Tell your friends and neighbors, and encourage leaders to proclaim the day. It is our day to share our humanity with others. It can be a day of joy.

justinhighrock


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BLESSED ARE THE CAREGIVERS….REALLY!!!

I cherish the caregivers in my life:

A family member who would drop everything a week before Christmas and fly hundreds of miles to be by my side when I undergo a difficult medical procedure;

 The physicians who might dread to see me coming (but nevertheless try everything in their power to help me) because first of all, I have severe chronic pain, and second because I cannot tolerate most of the medications that would provide me enough relief to cope;

 The pastors and fellow members of my church who comfort me, get me back and forth to medical procedures when I cannot drive myself, and hold me up in prayer;

 The pharmacist who takes the time to go over my medications with me to try to discover which ones are interacting in ways that increase my problems;

 The employer who knows of my disability and my age, yet values my skills enough to hire me anyway;

 Friends near and far throughout the world who immediately respond to any hint of a problem with their words of comfort and care;

…..and this is only part of a long list that comes to mind today. There have been so many in my life through the years, and even now there are so many others.

I cherish these all the more because through the actions of many legislative bodies and a large percentage of law enforcement agencies, many perfectly legitimate physicians and other medical personnel who care for those who daily suffer chronic pain are being targeted, their patients ostracized, labeled “drug seekers” and/or hypochondriacs, and malingerers. Physicians who try to help me and other patients in pain are labeled “pill mill operators” even though they do nothing to break any laws whatsoever, yet in some places they face threats of incarceration, even death.

I am neither ignorant (unknowing) or unteachable. I have graduate degrees in four disciplines. Before retirement I was a full professor, and for seven years the vice president for academic affairs/academic dean of a college. I have lived and worked in another country, and traveled to many places on this planet. Before all that, as a nurse in a county jail I regularly came into contact with drug and alcohol addicts, dealers, and both straight and “dirty” law enforcement officers.

I have also been subjected to chronic illness and chronic pain since the age of 4 years, and have often been confined to bed, once for a period of two years. As a former nurse, and as a member of a family whose history and present lives include chronic illness and chronic pain, I am also one who fully understands the freely given sacrifices made by those who care for people who are too ill to care for themselves. Although people in pain often feel isolated and alone, the truth is that their pain affects a large network of caregivers who support them in many ways.

I am convinced that it is therefore also long past time for us as a nation to be educated about the differences between addiction (a disease of the brain that can only be managed, not cured), medication dependence (I depend on a medication when I need it, and my body may need to be carefully weaned off when I no longer need it), and tolerance (over time I may need more of that medication because my body learns to tolerate it—this, too can be carefully managed).

Bottom line: Opiates are consumed as a source of pleasure to illegal drug users and addicts, and used as a source of income to their dealers from all walks of life. For the former group, opiates ultimately decrease the quality of life. But opiates are also a source of life-sustaining relief to patients in pain, and when that pain is chronic rather than acute, the correct management of opiates may allow relief enough for the patient to cope and to have an improved quality of life.

We need to understand the difference, and not add to the problems of legitimate pain patients and their caregivers.

If anyone can understand the difference between illegal drug activities and the care of patients who require medical assistance at least to survive and perhaps be productive citizens, I am one who can, because of my own experiences and education.  I have been fortunate, despite being unable to tolerate medication, to have received enough support and alternative treatments to lead a productive life.

Chronic pain, untreated, destroys life. Brain research studies show deterioration in brain function where chronic disease goes untreated. That deterioration is very similar to the effects of taking too much medication, and in part also to that of addiction. Through all of this, families and other caregivers also suffer, along with the patient. Much is required of them, and it may also be difficult for them to cope. But they do it, day after day, year after year. This is my way of saying thanks to my caregivers now and through the years.

What we who share this situation ask of you is to proclaim one day: March 20th, the first day of spring, to honor the dedication and love shown by these heroes. To honor those who willingly give of themselves and their resources to make life possible—even bearable—for those who daily suffer in pain.

During the month of September we celebrated National Pain Awareness Month. Let’s now look forward to the end of the long winter months when pain and the difficulties involved with treating it seem so much worse. Let us have a day of new hope, of renewal and light in the former darkness of cold and pain. Most of all, a day to support those who give their lives to support others.

March 20th, 2015. The first National Pain Caregiver’s Day.

Please join us!