Severe incurable chronic pain: who decides when it is

Last updated: 05-17-2020

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Severe incurable chronic pain: who decides when it is

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Imagine that, like me, you have a serious, incurable medical condition. If left untreated, this condition could kill you or at least have a devastating, permanent effect on your ability to work, enjoy yourself, and function independently. There is a treatment available, but it’s not totally guaranteed to work. It will probably at least help, but it doesn’t actually cure the condition. It also causes serious side effects and carries high risks of long-term problems. You even might end up needing further treatment to manage the effects of the first treatment.
What do you do?
Here’s another complication—the risky, expensive treatment makes a lot of money for the pharmaceutical companies who produce it. That leads some people to claim that the treatment is a sham and you shouldn’t accept it—instead, you should “learn to live with” the consequences. But your doctors say that despite the risks, this is your best chance of living a full, long life.
Now what do you do?
Well, if the medical condition is cancer and the treatment is chemotherapy, then most people, including me, take their chances with the treatment. Some go into remission. Some don’t, or their disease returns. Many people with stage 4 (or metastatic) cancer that has spread throughout their body are given chemo indefinitely as a way to try to manage and control the cancer for as long as possible.
But what if the condition is severe incurable chronic pain, and the treatment is opiates?
It’s not a perfect analogy. It’s not supposed to be. But the reason most people recoil instantly at that comparison is because most people don’t see severe incurable chronic pain as an illness in the same way that cancer is. Sure, everyone needs an ibuprofen at some point in their lives, and sometimes if you have a serious surgery you may need Percocet or codeine, but to most people, pain is not in and of itself a medical condition that merits treatment.
People are rightly suspicious of opiates because ever since the days of morphine, pharmaceutical companies have mislabeled opiate medications and mislead the public (and even doctors) about their addictive properties. (That’s one point at which the analogy with cancer and chemo breaks down—as far as I know, we’ve always known that chemo literally destroys the cells in your body.)
Doctors used to prescribe opiates without warning patients about the potential for addiction and the importance of taking appropriate doses, tapering down when needed, and complementing the opiates with other, non-addictive methods of pain relief.
However, none of this negates these facts: 1) many people suffer from severe incurable chronic pain, and 2) opiates are the only drugs that allow some of these patients to achieve anything resembling a livable situation.
Opiates are sometimes the only drug that reduces severe incurable chronic pain
Now that politicians are once again yelling at each other about “fixing” the “opioid epidemic,” I’m seeing a lot of pundits and public figures carefully dancing around the inconvenient and messy reality of pain. “How do we get these people to stop abusing opiates?” they moan. “Maybe if we ban doctors from prescribing them.”
They’ll go on to qualify. “We’re not saying nobody should ever get them. But it should be harder to get them, and it should only be for people who really need it.”
You know what that reminds me of? “We’re not saying nobody should be able to get an abortion. But there should be a waiting period, and you should have to hear the baby’s heartbeat, and any doctor performing them should also have admitting privileges at a nearby hospital in case something goes wrong, and definitely not after 20 weeks, and—“
In both cases, the “guidelines” and “restrictions” and “regulations” may seem like they’re there to prevent “abuses of the system” or people getting medical care they don’t really want/will regret later. But really, the goal is pretty clear—sharply reduce the frequency with which this type of medical care is being provided. [1]
And the reason that’s the goal isn’t just because they believe that this type of medical care is harmful to patients. It’s also because they believe that it’s ultimately immoral and harmful to society.
If that wasn’t already painfully (heh) obvious from talking to doctors and politicians about pain management, it’s also obvious when you look at the type of research being done. In a Vox article about the issue, German Lopez cites a study about what happens when doctors are informed when their patients overdose on opiates they prescribed:
The results: Clinicians who got the letters prescribed nearly 10 percent fewer opioids than those who did not receive a letter. The letter-receiving clinicians were also less likely to start patients on opioids and less likely to give patients higher doses of opioids. [2]
This is being presented as a successful outcome. Why? How do we know how exactly these doctors decided whom they were going to deny opiates to? What if some, or most, of the patients who made up that 10% statistic were patients who really needed these medications? How many of those patients might go on to overdose on street drugs that they sought out because of unmanaged pain?
And that’s how we get to opinions like these, from a Vox article by Sarah Kliff, who cites the article above:
But there is one quote in German’s piece that stands out to me the most, from drug policy expert Keith Humphreys: “Something needs to be worked through the culture as well about how pain is part of life. If you’re in excruciating pain, it sucks. And I’ve had pain conditions myself. But not all pain is intolerable or needs to be pushed down to zero with an opioid.”
This, I think, is the hardest part of backing away from opioids: admitting that medicine doesn’t have a perfect cure for pain — that for some patients, zero pain isn’t possible. [3]
Here’s the problem, though. “Not all pain is intolerable” means acknowledging the fact that some pain is intolerable, and anyway you slice it, you have people other than the patient determining if their pain is tolerable or not. And not only that, but this decision-maker is essentially serving as a gatekeeper to effective pain-relieving medication, placing them in opposition to the patient, who wants access to that medication.
There is absolutely no way for this not to become medical gaslighting , and no way for it not to become yet another stage on which our cultural biases play their well-worn roles. It’s a known fact that African Americans are considered less sensitive to pain, while women and Jewish people are considered weak and prone to complaining. (Somehow, despite the opposite stereotypes, all of these groups are similarly denied pain care.) These stereotypes appear in current medical textbooks. [4]
Caption:
This page is from a 2014 nursing textbook titled Nursing: A Concept-Based Approach to Learning. After this photo went viral on social media in 2017, the publisher, Pearson, apologized and released an updated edition of the textbook with this section removed.
The other problem with “not all pain is intolerable” is that, while pain usually has physiological causes, its perception is subjective. Feelings of pain are processed in the brain, so all pain, by definition, is “all in your head.” That fact is often used to gaslight people , but if anything it should be the other way around. That pain is subjective means there’s no way to know if someone else’s pain is “that bad.” Every method that’s been created to try to objectively rate someone else’s pain is a dismal failure, because you simply can’t.
Opiates have high risks, especially when mismanaged. But lots of important medical treatments have high risks. Besides its serious short-term side effects, chemo has a high likelihood of causing at least a few of the following permanent effects: neuropathy of the hands and feet, cognitive impairment, bone and joint pain, elevated risk for various cancers, heart disease/failure, lung damage, infertility, hearing loss, and osteoporosis.
Can chronic pain kill you?
“But wait!” you may say. “Cancer kills, but chronic pain doesn’t!” You got me there. Except not really, because first of all, not everyone agrees that a lifetime of excruciating pain is better than death. For instance, I don’t. Second, severe and untreated chronic pain absolutely does kill. It can increase the risk of suicide and actual opiate abuse and overdose, as well as alcoholism and complications thereof.
People who become sedentary due to pain have a higher risk of dying of heart disease, diabetes, and literally any other disease for which being sedentary puts you at risk. People with untreated pain may be unable to work, and their ambiguous medical status can make them ineligible for Social Security. Poverty is itself a risk factor for just about everything.
Which brings me back to my opening analogy. Who decided that the risks of living with severe pain are preferable to the risks of taking opiates? Why do they get to make that decision for patients? What the fuck happened to informed consent?
Opiate addiction is obviously a very serious health issue, but it’s not untreatable. Most people with addiction recover. Many of these other potential risks I described, both of chemo and of untreated chronic pain, are permanent.
Caption:
"Most people think they know pain. Everyone's done something: broken a limb, been stung by a wasp, recovered from an operation or rammed a baby through their birth canal. But chronic pain is different. It isn't just pain that lingers; it's pain that dominates. It swaddles you in its gloom and slips blinkers on you until everything you see, and everything you experience, is filtered through that pea soup of pain." Julia Buckley
Credit:
[4]  https://www.insidehighered.com/news/2017/10/23/nursing-textbook-pulled-over-stereotypes
[5] The full story of my surgery and its aftermath is something I’ve addressed elsewhere on social media, and will be discussed in the book I’m working on. But the nutshell version is: I had a double mastectomy with reconstruction and was afterward denied almost all but the weakest prescription pain medication, and gaslit and condescended to when I asked to be given proper pain management.
Article by Miri Mogilevsky
Miri Mogilevsky is a writer, teacher, and practicing therapist in Columbus, Ohio. They hold a BA in psychology from Northwestern University and a master’s in social work from Columbia University.


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