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Verstehen, through shared perspectives


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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!

 


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FIRST DO NO HARM

First do no harm. Immediately our minds turn to physicians when we read or hear this phrase, yet the reality of “Pill Mills” in our cities and neighborhoods is one factor fueling the present crisis of faith in our health care system for many people. We are a nation that labels and stereotypes with great abandon, and with the numbers of criminals using an MD degree to illegally provide narcotic prescriptions for the price of an office visit, the negative label on the entire pain management profession was no doubt inevitable.

I was guilty of supporting that label, myself. For sixteen years I lived in a region where in the beginning, alcohol and marijuana were the primary recreational drugs. Over the years, however, I saw many beautiful, bright and charming young people become addicted to narcotics, and the drugs became easier and easier to obtain even in that isolated part of the country. A few years back, I learned about growing numbers of pain clinics in the region, and that students were “safely” obtaining legal prescriptions for their recreational drugs. The words “pain clinic” became anathema to me.

After I retired and moved close to a city several hours from where I had worked, my back pain was so severe and disabling that my primary care physician told me he was going to refer me to a pain management physician. I was stunned, then just plain mad. “No, thanks!” I told him, and he may have understood the unspoken question “Have you lost your mind,” though I tried to hide it. It took some time for him to convince me, first that the physician in question was highly skilled in interventions like epidural nerve blocks for the pain, and second that he was completely legal. Even so, I did not hesitate to inform said pain management specialist that I did not need his services except for the epidurals.

I like to think that I am a fairly open-minded person, and six months later (and in much better health largely as a result of the care received from my pain management physician) I am now a patient in the pain management clinic, where my physical intolerance of narcotics and other medications is taken in stride. That is to say, I finally remembered my sociological training (to say nothing of my own teaching on the subject) and realized that no matter what my experience was in my former place of work, it did not come close to describing an entire branch of medical expertise and practice.

First, do no harm. But physicians are not the only group that should make decisions with this caveat in mind. I, for one, had to accept that the caveat applied to me, as well. How much harm did I commit in my righteous indignation over the felonious pill mills? I hope not as much as our legislators and law enforcers have done by tarring innocent physicians and patients with the stereotypical labels of pill pushers and drug seekers.

Legislators can bring about costly changes in the way that laws are made and enforced, resulting in potential harm to many people. The current “war” on opioids is a prime example.

Lawmakers are subject to pressures from the press, from their financial supporters, and their colleagues. Faced with the need to satisfy so many groups with vested interests, to first do no harm often seems to be the farthest thing from these officials’ minds. However, a few states have passed legislation designed to protect both patients with chronic pain and the physicians who prescribe for them. Indiana is one such state.

In 2012, an Indiana Senate committee introduced a bill that would become IN SB246. The final version of this bill http://www.in.gov/legislative/bills/2013/SB/SB0246.2.html was passed in 2013, based on advice from a panel that included physicians and the Medical Licensing Board.   The Medical Licensing Board then enacted an Emergency Rule effective on December 15, 2013 http://www.IN.gov/mlb . The Emergency Rule established standards and protocols for physicians who prescribe controlled substances for the treatment of pain.

You will note in reading the rules that there is a clear separation between medical license regulations, and activities termed felonious that must be prosecuted. The law covers the latter category only, and leaves control of errors in staying within the bounds of regulations to the proper authority: the Medical Licensing Board. This is precisely where many other state, local and federal government bodies have gone overboard, causing unnecessary pain and grief – even loss of life—to innocent persons by including professional regulations with actual laws. As a result, people have been needlessly targeted – “profiled,” to be exact—as living outside the law. People such as respectable physicians, living within the law, as well as persons who have been non-addicted, chronic pain sufferers, trying to manage their suffering “just enough to cope,” to remain productive. All have suffered needless, devastating, harm.

To some, the Indiana Emergency Rule seems very strict. However, given the reality of drug abuse, illegal drug trafficking, accidental and purposeful suicides using opioids, and the growing number of people misusing a medical degree to set up “pill mills,” I choose to defer to the wisdom of the Indiana Senate and the advisory committee that worked with them. I believe they tried to first do no harm. In actuality, the Emergency Rule does not prevent physicians from prescribing opioids for chronic pain patients. Both physicians and chronic pain patients are protected when both groups stay within the parameters of this legislation. Anxiety over the new rules should be lessened as prescribers become familiar with the details.

If we are to be successful in striking the balance between battling drug abuse and providing effective pain care, we must begin with education, followed with continuous reassessment of the results of our words, our laws, and our practice of medicine. Succumbing to the hysteria currently surrounding the prescription of opioids for pain care will take away the hope that chronic pain sufferers might find pain relief “enough to cope.” This will propagate a great deal of harm to millions of our fellow citizens. Laws that lead to the arrest of compassionate physicians, who are genuinely attempting to help their patients, create a situation in which great harm could befall upon innocents.

Thanks are due to those state legislative groups who have not bowed to the hysteria that would ban these pain relievers. Thank you, Indiana Senate, for thoughtfully drawing up a law that does not harm the citizens of our state. We can only pray that other states will follow your example; perhaps even improve upon it. As long as they also…

First, do no harm.