(3) When patients are suffering

Health care reckons with pain

Photo by Sean Stratton on Unsplash.

Twenty-five years ago I joined a team, headed by an academic physician, to write a paper to encourage the generous use of opioids. We planned to begin with this quotation:

"Among the remedies which it has pleased Almighty God to give to man to relieve his sufferings, none is so universal and so efficacious as opium."

Thomas Sydenham (1624-1689)

We see opioids very differently today. Their dangers have become glaringly obvious. But Sydenham understood something that we tend to forget: The toll that pain takes. That toll was much higher in his time. Severe pain was common, most of it untreatable. Little could be done for burns, cancer, migraines, wounds. Sydenham understood that pain drains energy, destroys relationships, makes some kinds of work impossible. It eats away at life. It can lead to suicide.

There’s less severe pain today, at least in rich countries. Nevertheless it’s still a common and heavy burden, and can be badly undertreated. (In the mid twentieth century, even patients dying from cancer were denied opioids, for fear of addiction.) By the end of the century, when our writing project began, new research seemed to show that even large doses of opioids, calibrated to the patient’s pain, were not addictive. We wanted to spread the word. We felt evangelical.

But reports of overdose deaths began to arrive, and we abandoned the project. During the years that followed, as addiction, despair, and death became everyday news, I wondered whether disabling pain is again — rather, still — being under-treated. And of course it is.

Why is pain undertreated?

There are many reasons, some new, many old. Many doctors now prescribe opioids only as a last resort (“Avoid that first prescription.”) They fear not only addiction in their patients but punishment for themselves: loss of their license or even prison time. Sometimes opioids are appropriate, but deciding when can be a hard call. To avoid deciding wrongly, some simply flatly refuse ever to prescribe them.

That’s part of the problem. But opioids are far from the only tool we have. One byproduct of the addiction crisis has been research into other ways of managing pain. Nor is pain the only face of suffering. Nausea and sleeplessness, fear and anxiety, existential and spiritual distress all matter. When a colleague wrote “We suck at symptom control,” she meant all the above. Many tools are now available: medication, osteopathic manipulation, physical therapy, acupuncture, mindfulness training, clinical massage therapy, and more. But they’re often underused. Why?

Many new tools are available: osteopathic manipulation, acupuncture, mindfulness training, and more. But they’re often underused.

One reason is history. The professions who use those methods have often been at odds, suspicious of one another’s methods, perhaps competing for patients. It can be hard to learn to work together. There has been real progress; for example, most major cancer centers now have acupuncturists on staff.  Nevertheless, there’s a long way to go.

Another factor, no surprise, is money. Integrating all these techniques takes time. Programs need to be fine-tuned for each patient, over repeated visits and in long conversations. Insurance reimburses clinicians poorly for these things. Nor is there much professional prestige attached. Bioethicist Ann Mongoven remarks that medicine “still has a hero complex —and for reasons I fail to comprehend, providing comfort is not viewed as heroic.” 

She adds another piece of the puzzle: “Patients are not educated to demand better symptom control – sometimes they just think the symptoms must be their ‘cross to bear.’” (Note the religious framing.)

Finally, patients who complain of pain — especially chronic pain — can be stigmatized, thought of as malingerers, attention- or pill-seekers, maybe responsible for their own suffering. Unsurprisingly, minorities and the poor are particularly vulnerable on this score.

Withdrawal and Abandonment

In 2015 Travis Rieder’s foot was crushed in a motorcycle accident. His agonizing pain was appropriately treated with opioids. After some months and many surgeries, he wanted to stop the pills. But how? No one who had prescribed the opioids had any idea how to manage withdrawal. Nor would pain management centers take him on — “We manage pain, not withdrawal.” Nor addiction centers — he wasn't addicted. His four weeks of withdrawal were hellish.

No one who had prescribed the opioids knew how to manage withdrawal.

That was eight years ago. Is withdrawal managed better today? Some places yes, others no. A pharmacist with a palliative care team in the Midwest says the problem remains common, not only for opioids, but also for benzodiazepines, antidepressants, and antipsychotics. Yet a similar practice on the West Coast reports that the issue is rare.

People whose pain is downplayed or ignored, or whose withdrawal is mismanaged, may turn elsewhere for help. “Elsewhere” means the street. Mismanagement of pain and withdrawal not only leaves patients in agony; it also fuels the opioid epidemic. Over-prescribing and under-treatment are partners in crime.

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AfterWords

• This topic gets little public attention. Here, as elsewhere, we have trouble caring deeply about several things at once. Since the opioid crisis began, addiction and death have been, deservedly, headline news. Similarly with the supervillain Sacklers. But not the agony of undertreated pain.

• “Addiction” is surprisingly difficult to define. Reider writes about this (chapter 6). Philosophers would appreciate Sussman and Sussman, “Considering the Definition of Addiction.”

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