Some time ago I asked (via Twitter) if people knew of cases where hospice patients were being underprescribed opioid pain medications. Many did. But one story stood out. You'll see why. Meet Laurie Engel.
Depending upon when you are reading this, Laurie Engel, a long-time chronic pain patient, may or may not be alive; she has been given about six months to live because of an aggressive, deadly cancer that has now invaded her spine. This is her story. Medically, if not for bad luck, Ms. Engel would have none at all.
What you will read is both horrifying and infuriating. Given her situation, the very last thing she needed was to suffer from the indignity of being denied pain relief once she chose hospice care, in order to make her last months as bearable as possible. Yet, in today’s upside-down environment, even people who are dying cannot be assured of doing so without undue pain and suffering.
Most of us would be reluctant to share such personal and medical information on the Internet, but this brave woman, who contacted me two months ago, wants her story told. When you read it try to imagine yourself or loved ones in such a situation – a victim of our government-compromised medical system that neither knows or cares about the patients it is ignoring or abusing.
You may find the following interview deeply disturbing.
You should.
JB: Tell us a little about yourself
Laurie Engel: I am a born and raised gal from the land of 10,000 lakes aka Minnesota. I have a BS degree in Animal Science and did one year of grad school in horse breeding, a passion of mine. For 15 years, my mother and I had a business in breeding and showing Morgan horses. Later, I became interested in the dog show world. I have been breeding and showing English Setters for 27 years. I have bred multiple Best in Show dogs, national champions, and breed winners at the Westminster Dog Show. I live by myself with my setters in Minneapolis. I have had the good fortune to have been single my whole life. My dogs are my kids.
JB: The medical records you sent to me read like something from a bad dream. You have had to cope with two serious but unrelated conditions, either one capable of bringing down all but the strongest people. Can you tell us about them?
LE: In 1980, when I was 21, I was working at a sheep farm and injured my right knee. Although it didn’t seem too bad at first, this would change. Two arthroscopic surgeries failed so I went to the Mayo Clinic in Rochester. At Mayo, I had two open knee surgeries over two years but the knee kept getting worse. Hardware that was put in wouldn’t stay put and this caused serious infections. In total, I had a total of 25 surgeries on that knee over the course of eight years, yet I still couldn’t walk and was in constant pain. By 1998 it was so bad that I had to make a decision. My doctor’s goal was to give me as much quality of life as possible as well as the ability to live independently. I was offered the choice of an amputation or palliative care. I chose the latter and started round-the-clock pain clock pain medication – OxyContin – in 1998. (Prior to this I used both oxycodone and fentanyl patches but this combination became ineffective.) I have to walk with a crutch and my leg bows out like an old cowboy’s but I made it work.
(Left) Laurie, February 2024. (Right) With one of her champions, 2022
JB: This is, of course, theoretical but would your decision to choose hospice care have been different if the accident happened more recently and you knew you would probably not be able to find a doctor to give you a sufficient dose of opioid to control your pain?
LE: I can’t really answer this because my situation was complicated by more bad news. In 1986, at age 27, I developed breast cancer. I had a double mastectomy but fortunately, I didn’t need any radiation or chemotherapy. But after this, things went downhill.
JB: You had to undergo 25 surgeries over a span of 27 years because of a knee accident, and spent much of 18 years in pain during which time you were diagnosed with breast cancer. How does one go “downhill” from there?
LE: This past fall I experienced rapid onset shortness of breath. It felt like being kicked in the stomach. My primary care doctor’s office was closed so I went to urgent care. They immediately sent me over to the ER, but I almost didn’t go.
JB: Why not? Surely you know that sudden, unexpected shortness of breath is often a sign of something serious.
LE: Of course. But as a chronic pain patient, I know full well how we are treated in the ER; it is the last place we want to be. Ultimately, I did go because I felt I needed to rule out something like a heart attack or pulmonary embolism. Both were quickly ruled out with blood tests. Was this good news? Not really. Although I didn’t have a heart problem, the diagnosis was much worse. While waiting for the results of blood tests I told the emergency doctor about my history. I asked her if I should get a CT scan, especially since I had one in 2014 (for an unrelated condition) for comparison. Based on my medical history she agreed. Then came even worse news. The scan revealed enlarged lymph nodes and, worse still, cancerous tumors on my spine at both the T11 and L3 levels.
I’ll never forget what the doctor told me: “I have some bad news. It looks like you could have lung cancer which has spread to your spine. We need to admit you to run more tests because your bloodwork is also very concerning. It looks like you have a systemic malignant process going on in your body. I was stunned. How can this be? I’ve never smoked.
Given what I’ve heard from countless chronic pain patients, many of whom have either had their doses tapered involuntarily or cut off entirely because it is nearly impossible to find a pain specialist who will prescribe opioids anymore, let alone large doses of them, this would have been precisely the time that Ms. Engel would run into the juggernaut of the anti-opioid movement. Indeed, this is what happened.
LE: This is when I experienced my first horror of opioid denial. I knew from other chronic pain patients that hospitalists were prone to cutting baseline meds. I asked the doctor if I were to be admitted would I be able to get my pain medication at the dose I am on. She sadly shook her head no, and left the room. I cannot even describe how I felt at that time. I was simultaneously given what was probably a death sentence and told that the medications that have kept me going for 25 years were “unacceptable.”
JB: In your opinion, why do you think she reacted like this?
LE: It wasn’t her fault. I was actually quite thankful the doctor was honest. She came across as very concerned for my situation but she also knew her hands were tied. The following week I had an emergency appointment with an oncologist at the same hospital. He ordered a PET scan, which determined that I did not have lung cancer, yet they kept looking because my bloodwork was still very abnormal. Next up was a bone marrow biopsy of both the lesions on my spine. It took about 13 days to get the biopsy and another five days to get the results. This is when I hit rock bottom.
JB: It sounds like you hit that long ago. Please explain.
LE: During my follow-up appointment the doctor told me: “I have very bad news. You have a disease called acute myelogenous leukemia(AML) and your genetic mutations put you into the worst category possible. The cancer has already invaded into your spine.” A diagnosis of AML is considered to be a medical emergency. Patients who choose treatment get immediately admitted for up to 4-6 months.
I wasn’t even remotely prepared for such an awful choice. If I didn’t undergo treatment right away, I would most likely die in a few months but even if I did there was a 20% chance that the chemo would kill me. I asked, “What about doing nothing?” He answered, “Yes that is an option but you are only 65 and that is too young to take that route.”
After some online research, I found a paper published by the NIH that states that my specific subtype of AML has a very poor prognosis with an expected life span ranging from 100-270 days following diagnosis. Overall worldwide there are only around 5,000 cases; that is how rare it is. Why the hell couldn’t those odds have been put towards a winning lottery ticket? I guess God works in mysterious ways. Yet, in a twisted way I “won” the lottery in getting off the “chronic pain patient merry-go-round.” I would be able to get monthly refills without concerns or restrictions. But I will say that winning the lottery would have been more fun.
JB: Tell us your first thoughts after getting this news.
LE: I was torn between worry over getting my monthly meds and the sheer shock that I was going to die in six months. I felt like I was cheated out of 20 years of life. Both my parents lived to be 85 and all my older siblings are alive. Don’t minimize my concern about getting my pain meds. I was asking myself questions like “Will they be in stock?” “Will Walgreens corporate allow my high dose?” I sat in my car for an hour and sobbed.
I cannot imagine a better example of what harm the war on opioids has done to people like Laurie. She was just given a death sentence but what was on her mind? Whether she be “allowed” to have access to sufficient drugs to control the pain she has been coping with for many years? But there was one more slap in the face awaiting her.
LE: On the advice of the hospital’s oncology office, I chose a particular hospice. An intake nurse got a copy of all my current meds. The medical director then did a chart review of those meds deciding which ones to keep and which ones to throw out. Two days later a new nurse showed up and informed me, they were replacing my OxyContin with MS Contin (a time-release morphine pill). I told her I had previous experience with MS Contin and that I could not tolerate it and asked to speak to the admitting physician. I was told, “No she won’t talk to you; her mind is made up.”
It was bad enough that Walgreens didn’t have the MS Contin in stock but even worse, I was expressly told I couldn’t take any of the OxyContin I had left over. How barbaric! This threw me into withdrawal. The MS Contin finally arrived within a few days, it made me sick, just like it has done in the past. I wasn't able to keep any food down. I again asked the nurse to talk to the admitting physician. This time it “worked,” at least to the extent that she agreed to speak to me. For all the good that did.
JB: Please explain.
LE: I told the doctor how sick I was from the MS Contin and she told me point blank that this didn’t matter that she would NOT prescribe OxyContin. She called it “a terribly dangerous drug because it causes euphoria.” I informed her that I had been taking it for 25 years with not one issue and also asked why euphoria is a bad thing in hospice. Her response was “I don’t care. You’ll just have to get along because I will not change my mind.” That was it. The next day I fired the hospice and found a new one with the help of my insurance company.
JB: Were you treated differently by the second hospice?
LE: It was night and day. The day after I fired the first hospice an intake nurse from the new hospice came to see me and ask questions. The very next day I heard from their medical director that they were appalled at how I had been treated. They immediately restored my OxyContin and have been treating me fantastically since then. My dose never changed between 1998 and 2023. It was about 900 MME (1) then and now I’m taking more than 2,000 MME as my cancer has progressed within my bones.
JB: I’m sure you’re aware that there is a small but influential group of academics and other meddlers, all of whom wish to restrict (or even eliminate) opioid use. Some of them have claimed that long-term opioid therapy isn’t effective and will cause addiction. What would you say to them?
LE: I find it terribly sad that this push to remove opioids has led to the total destruction of the doctor-patient relationship. It has turned healthcare employees into cops. It hasn’t done one damn thing to help end overdoses, in fact, just the opposite has happened, exactly what you’ve written so many times. It was all done to enrich a bunch of greedy lawyers and the people who consulted for them. I also think PROP (Physicians for Responsible Opioid Prescribing) may be even worse. I personally believe that PROP should be registered as a lobbying firm. They set themselves up to get filthy rich off of policies they themselves were directing. Some have served as expert witnesses in multiple bogus opioid litigations, which seems like an obvious conflict of interest to me. It is thoroughly disgusting that people are getting rich from policies that have tremendously hurt the chronic pain community. It’s almost unbelievable that in a little more than 10 years we lost our individualized care that used to be determined by our own doctors. We can thank PROP for this as well.
JB: I am so terribly sorry about everything you’ve had to experience, but I’m also honored to meet and be able to speak with someone who has endured so much with bravery, tenacity, and grace. Although we will probably not meet in person, I know without a doubt you are an amazing person. The people who read your story will probably feel the same. Do you have a message for them?
LE: Yes. If you find yourself in my situation getting hospice care but not getting whatever it takes to make you comfortable don’t accept what they are offering. Ask questions over and over, Make a lot of noise. Switch companies. We must not ever let them get away with ignoring our cries for help.
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So, this is where we stand more than a decade after a mistaken (and I’m being generous here) effort by the CDC, their advisors from the Physicians for Responsible Opioid Prescribing) and all the lawmakers and agencies that went along with the takeover of medicine by branches of government, especially the CDC, and DEA.
The number of deaths has skyrocketed as fentanyl arrived in this country in 2013 to tap into the heroin market, which itself shot up in response to the crackdown on prescription pills. Perhaps worse still is that after our government finally recognized fentanyl as the real killer newer and more dangerous drugs, such as xylazine and nitazenes, are being found in street pills that may look like oxycodone but are far more likely to be fentanyl, now possibly containing something even worse.
And on the other side of this warped coin are Laurie Engel and millions like her, who are trying, mostly in vain, to navigate their way through a system that now treats people in pain – even though they may be dying – like drug addicts, and their well-meaning doctors as drug pushers.
According to countless reports from pain patient advocacy groups, Laurie's story represents just one example of the systemic issues faced by chronic pain patients. At the very least there are thousands of individuals with similar medical conditions who may also be experiencing inadequate pain management and medical mistreatment. This pattern of abuse, they argue, is unprecedented in modern healthcare. I could not agree more.
Although Laurie’s story may sound especially horrifying, there are many thousands more victims of accidents or disease who are also being subjected to outright medical abuse, the likes of which none of us could have even imagined only two decades ago.
Laurie Engel is highly educated and well aware of the pitfalls facing people in pain. Consider the demeaning ordeal that even she had to go through to simply for the right to die without excruciating pain. Laurie, a veteran of the “pain wars,” did everything humanly possible yet was still abused by the system. She is far from alone.
What will you do when your time comes?
NOTE:
(1) The morphine milligram equivalent (MME) unit is a scientifically flawed creation that supposedly compares other opioids to morphine in terms of strength. If used purely as a guide it may or may not be of some use in adjusting opioid doses. But it is no longer a guide. It has been codified in 40 states and, worse, is being used by the DEA to "catch" doctors who exceed a daily limit of 90 MME – a number that was plucked from the air without any real evidence. A dose of 90 MME (supposedly) equals 90 mg of morphine and 60 mg of oxycodone. Laurie Engel now requires 2,000 MME of OxyContin, more than 20 times the maximum permitted dose, because 900 mg (10 times) no longer was effective. Imagine if she was restricted to a "legal" dose.
