At age 81, I am one of “the old guys” who writes in online chronic pain support groups. I get a lot of emails from people in pain. One recent inquiry was from a lady named Marisa, who asked questions that are combined in the title of this article. The following is my response to Marisa and others.
My wife is a chronic pain patient who has multiple medical issues. I began researching medical literature on her behalf 27 years ago.
I had some unusual advantages in this research. I am trained as a systems engineer, technology analyst, technical writer, and data analyst. I can decode papers that to most patients and even some doctors might as well be written in ancient Greek. I’m also a trained public speaker with 50-plus years’ experience before highly partisan audiences. I also have a finely tuned nose for mythology masquerading as science, and zero tolerance for the darned fools who publish such nonsense.
I doubt that there are 100 working health care writers in the U.S. today who bring my kind of background to the work.
Very few working writers or clinicians — and almost no patients — have the combination of backgrounds and special circumstances that allow them to be effective. My personal circumstances include a forgiving spouse who is willing to tolerate my 60-hour weeks in patient advocacy; we also don’t have to work for a living, as we have a secure retirement from multiple careers.
People who have never suffered with severe pain may forget that pain can be profoundly disabling — physically, emotionally, and in families. Patients have written to me from public library computer terminals, after sleeping overnight in their cars. I hear from people who lost their homes and were deserted both by doctors and their own spouses. This doesn’t count the thousands who can’t write because they have committed suicide. Patients are not suffering from over-prescription of opioid pain relievers by their doctors. They are suffering from UNDER-prescription that destroys quality of life.
Many of the reasons why patients feel unable to act in their own behalf may boil down to what are called “the ten spoons.” Each day, a person with chronic pain or illness starts with a set number of energy spoons (for example, ten). Every activity — such as getting dressed, making breakfast, or going to work — costs a certain number of spoons, depending on its difficulty and the individual’s health on that day. When all spoons are used up, the person has no energy left for other tasks. Pushing beyond this limit can worsen symptoms or lead to exhaustion. Lots of people reach that point before noon each day.
Patients aren’t the only ones who are exhausted.
Clinicians who treat pain also face exhaustion — caused by unreasonable government policies and a punishing professional environment. Most doctors know that they are being targeted unfairly by federal and state regulators, state boards, and prosecutors who falsely blame them for having created what is called “the opioid crisis.”
Doctors know that when they prescribe opioid pain relievers to any patient for any reason, they risk being investigated or charged with professional misconduct. Even a successful defense from such actions can bankrupt a practice — especially if a prosecutor prominently advertises their pursuit of the doctor before trial. Many lawyers won’t even consider defending a doctor who can’t pay an up-front retainer of at least a half-million dollars. Such cases are time-consuming and complex. Lawyers have to pay off their educational loans too.
We should feel real sympathy for doctors who are leaving pain management practice or even medicine altogether. They face huge financial resistance from insurance companies that don’t want to pay the bills generated by chronic patients who won’t get better. These companies post profits in the many billions of dollars every year. The total annual revenue of all U.S. health care companies is projected to reach $7.7 trillion by 2032.
It is not accidental that insurance companies are among the largest political campaign contributors in the U.S. They want to prevent single-payer insurance being enacted — ever!
In politics, there is a tried and true saying: “Money talks.” And big money talks loud enough to drown out most protests.
We should also not be surprised that the volume of money floating around in health care litigation today has attracted clinical predators willing to commit perjury before a judge, in order to cash in on the largess. When one is pulling down $750 dollars per hour for their testimony, it seems ever so easy to conveniently forget that absolutely no science supports one’s declarations.
Prosecutors or judges eager to be seen as tough on crime may also refuse to seriously examine qualifications of so-called “experts.” Is a clinician whose practice has focused on plastic surgery and who has never published a single peer-reviewed paper even remotely qualified to evaluate if a defendant is practicing good pain medicine? I have read at least one court transcript where this is exactly what happened.
It’s fair for readers who are in pain to ask, “What can I do about this mess?” My answer is that there are real answers “moving in the wind.”
The number of writers willing to contradict the lies being told by insurance companies, state medical boards, attorney generals, CDC, Veterans Administration, FDA, and DEA bureaucrats isn’t large — yet. But we have science and facts on our side. Some of us are teaching those facts to clinicians and others who must take a certain number of units of Continuing Medical Education each year. I am one of those teachers, in courses accredited by the Postgraduate Institute for Medicine and funded by the U.S. District of Columbia Department of Health.
If you are a pain patient, I urge you to spend one of your spoons and forward this article and the last link in the paragraph above to your doctors or a local TV station newsroom. You can tell your doctor “You need to read this — it could keep you out of jail.” You might also expend another spoon calling a newsroom director to say that “There is a Pulitzer Prize waiting for you if you cover this story … and if you won’t even read five minutes, then shame on you!”
Richard A. Lawhern is a patient advocate.