Pain Reporter: Practitioner Lack of Education and Compassion Add Up to a Wife in Constant Pain and a Justifiably Irate Husband/Caregiver

A recent conversation was started in our PAINWeek.org info mailbox. Mr. Peter Cholakis wrote to us:

My wife suffers from severe chronic back pain (degenerative back condition). Physicians in Massachusetts will not prescribe appropriate medications due to fear of repercussions from government authorities. Her quality of life has been poor for years, a situation which could have been avoided. The US healthcare system continues its downward spiral. How can you help?

This year, a PBS News Hour noted that “Nearly 40 million Americans offer unpaid care to an adult friend or relative…” Data from the National Alliance for Caregiving, AARP, and other studies show ever growing numbers of caregivers—baby boomers caring for elderly parents, wives caring for husbands, and in this interview, a husband caring for his wife.

Q:  Please tell us about your wife.

A:  My wife is 63. For the past 10 years, with the last 2 being incapacitating, my wife has suffered from degenerative spinal issues and scoliosis, with the lower vertebrae unfortunately being the most severe. She is basically confined to bed for the bulk of the day and has difficulty sleeping at night. She can walk for about 10 to 20 minutes, though in pain.

Q: Did she first explore pain management with her general practitioner?

A: Yes, 10 to 12 years ago.

Q: Was she referred to specialists?

A: Yes. She has seen multiple back specialists, surgeons, and pain management doctors in the Boston area.

Q: Did she receive any relief from her pain?

A: At first. Back injections worked for about 6 months, but that was several years ago. They are no longer effective.

Q: What other treatments were recommended?

A: Physical therapy, which was recommended as late as this spring. I find this recommendation disturbing and demonstrative of the lack of education/capability on the part of the healthcare professionals involved. The best back surgeons and doctors in the Boston area have told us that physical therapy is not only not recommended, but also said it would likely have an adverse impact. She had facet joint injections over the past 18 to 24 months, but without any positive outcome. Also radio ablation, also with no positive outcome. Tylenol 4 provides temporary relief…for 1 or 2 hours, but with expected complications and limitations.

Q: Has she explored complementary and alternative treatments? Have any helped?

A: She had chiropractic treatment very early on—years ago. There was no significant positive outcome.

Q: You mention there were issues with physicians in Massachusetts and their reluctance to prescribe appropriate medications. Please elaborate.

A: A general practice doctor will provide Tylenol 4, but not morphine or solutions that may provide more efficacy. My wife’s doctor is very conservative on Tylenol 4 and he said he is afraid that my wife will become addicted. He also noted that his practice could be investigated. I have had several discussions with him on the topic, and it’s clear that he and most of the doctors I speak with have no concept of bone or nerve pain. Addiction, in my mind, is an absurd concern if my wife suffers pain 24 hours a day. She has talked about suicide on multiple occasions, as the only method to end the pain. Having seen relatives with terminal stage cancer, I can compare her pain level to that at times. I, of course, truly can’t compare the pain as I have not experienced the pain. I can only compare my observations of how people react to the pain.

Q: Did she try other avenues to obtain pain relief? Different doctors?

A: Yes. We even visited a well-known pain clinic referred to us near where we live. A practitioner there at first lead us to believe that he could provide relief and made several statements which turned out to be misrepresentations. Their due diligence seemed poor. They did not contact my wife’s most recent surgeon, review her X-rays/MRIs, and clearly did not have a full understanding of her issues. They wanted her to attend group discussions and also come in every week or 2, and even wanted her to engage in physical therapy. They also required mandatory urine drug testing to be part of the “program.” In short, they demonstrated little compassion, demonstrated no domain knowledge, had clearly low-paid inexperienced staff workers, and seemed to have some alternative agenda—writing technical papers, proving their “approach” and reducing dependency on opioids, etc.

Q: What is your wife’s current condition?

A: Untenable. We are still searching for a solution.

Q: How do you feel about the current state of healthcare in the US?

A: We do not have a healthcare system and sorely need one. The system would require a nationwide database and provide reasonable access to care, as well as assure appropriate competency relative to all medical knowledge domains, including pain management. We do not offer the best access to healthcare, or the best approach to health management in general. The latter is clearly demonstrated by comparing our infant mortality and other significant health indicators to other countries.

Government agencies such as SAMHSA and NIDA are archaic, bureaucratic, and actually problematic…contributing to the problems associated with pain management. They were very slow to pick up on the issues of prescription drug abuse, and then had a knee-jerk reaction that has created an atmosphere in which patients who truly require pain management simply can’t gain access.

Q:  What would you like the painweek.org audience to take away from your wife’s story? How would you like to see things changed and improved?

A: Government policy is like a pendulum without balance relative to prescription pain medication. The vast majority of people take prescription medications responsibly. Unfortunately, due to the media and poor government domain expertise and policy, we now have a situation were needed prescriptions (dosage and type) are unavailable to deserving patients. The medical profession and the US government is literally causing millions of people to suffer needlessly. There is no sugar coating this fact. Furthermore, responsible patients and good citizens are being treated with disrespect and even looked down upon.

Current policies of extreme regulation will not be successful. The “war on drugs” failed, and the war on prescription drugs will fail. The end result will be that people who legally require and attempt to get pain treatment will suffer, while illegal use will continue unabated. One would've thought we would've learned the consequences of irresponsible overregulation from the alcohol prohibition fiasco.

Medical practitioners and all stakeholders, including regulatory agencies, MUST be educated in pain management—they clearly are not. Related to this, statistics are being manipulated by the media and persons with alternative agendas. False statement relative to use or efficacy of opioids are the norm vs the exception. For example, most emergency room visits are due to drug interactions and not due to opioids or other pain medications. Further, the increased production and usage of pain medications is directly relative to an aging population in combination with other factors, not a so called “prescription drug abuse epidemic.” It also is not problem exclusive to the US, as many would have you believe.

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So, how can we help? Continue the conversation here: info@painweek.org.

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Disclaimer: The opinions expressed in The Pain Reporter are the personal opinions of correspondents and do not necessarily reflect the opinions of PAINWeek or painweek.org.

 

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