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Seeking A Second Opinion On Pain Podcast

Mar 15, 2019

Late last week, NPR's Invisibilia podcast released a new hour-long episode on the topic of pain. True to the show's mission to examine "the invisible forces that shape human behavior, our thoughts, our emotions, our expectations," the episode was a complex and thought-provoking exploration of how pain, in the opinion of some, might be related to the attention we pay to it.

A vocal group of listeners, who reached out largely on Twitter but also in emails to NPR, found the episode to be something different. To quote one: "This story has done irreparable harm to the disabled community and the chronic pain community." And another: "Your podcast is strengthening a culture that does not believe in women's/girl's pain."

I'll start with my conclusion: I don't think the episode disrespected or discounted the experiences of those who live with chronic pain. And I did not find it unethical, as some charged, or that it promoted "pseudoscience" or "child abuse." (NPR's standards editor, Mark Memmott, reviewed complaints and backs the reporting.)

But I did find some flaws in both the editing and some of the language that left misimpressions. The promotion on social media was problematic, adding to confusion about what the episode was — and wasn't — about. A note from the staff that was appended to the top of the digital report responds to some of the criticisms that were raised. You can read it here.

Conflating a specific diagnosis and a general symptom

There are two versions of the reporting, the audio podcast (with transcript) and a digital summary for NPR's Shots medical blog.

The audio podcast, which was reported by co-host Alix Spiegel, is titled "The Fifth Vital Sign." The opening section (also the subject of an All Things Considered piece) recounts a 50-year history of how some in the medical community fought to get doctors to take more seriously patients' concerns about pain, even though the sensation cannot be measured in the same way as the standard vital signs, such as body temperature and blood pressure. It also explores a link to a possible contributing factor in the opioid epidemic.

The online Shots version carried a different headline: "For Some Teens With Debilitating Pain, The Treatment Is More Pain." That's because the majority of the story is given over to the specific experience of one teenager named Devyn. Under care of Dr. Cara Hoffart at Children's Mercy Hospital in Kansas City, Mo., she took part in a program where, after a diagnosis of what's known as "amplified pain syndrome," she was treated with a punishing three-week combination of intense physical therapy and psychotherapy. That's the "more pain" part.

The thread between the two themes — and ultimately a source for some of the confusion, I think — is a Philadelphia pediatric rheumatologist, Dr. David Sherry. In the words of the podcast:

"He thinks the more attention you pay to something, the bigger it becomes — because the very act of paying attention to something reinforces connections in the brain.

So to help kids like Devyn, Sherry and a handful of other doctors with this approach want to teach them to stop paying so much attention to pain. Which is why Sherry has concocted an unusual treatment for these kids: 'Put them in pain to get them better.'

If you force the kids to push their bodies until they are in tons of pain, over time, their brains can learn to ignore it, according to Sherry's hypothesis."

So, the narrative starts with a general discussion of pain and evolving medical attitudes. Sherry himself is quoted a number of times talking about chronic pain generally. (For example: "I think there's some suffering that people just need to live through.") And interwoven throughout is the story of Devyn, whose treatment (variations of which are offered at about 10 hospitals across the country) is specific to teenagers, mostly girls, who are diagnosed with what's variously called "amplified pain syndrome," "complex regional pain syndrome" or "amplified musculoskeletal pain."

As critics of the podcast pointed out, women's pain is often not taken seriously. There's a long history of doctors telling chronic pain sufferers, particularly women, that what they are feeling is all in their heads. It can take years for some patients to get a solid diagnosis.

Nowhere does the podcast indicate or even suggest that Devyn's pain was not real or that all chronic pain is the same. (Spiegel told me, "I genuinely feel that we said the opposite of that many, many times.") As the editors' note now says: "Chronic pain is a wide umbrella term that encompasses a huge range of conditions and our episode was not meant to serve as a commentary on all chronic pain experiences." Nor did the episode indicate that Devyn's treatment is meant to apply to adults or applicable to anyone with chronic pain.

Yet it's understandable why a casual listener would come away with that impression: The podcast is looking at the general connection between pain and the attention paid to it, but the only personal story is Devyn's. The episode doesn't say that or even address whether the experiences of teens such as Devyn are applicable to adults — but nowhere does it say that they are not, either. Nor did it acknowledge the established gender bias in pain management overall, although in the history section it did reference the history of ignored pain and how medical professionals tried to change that.

Controversial treatment

A second thread of concern about the podcast is the aspect of the treatment itself. Other news organizations have written about these treatments before, seemingly without raising much brouhaha. The treatments, which vary somewhat in their approaches, exist in plain sight, based at respected hospitals and medical centers (including the Mayo Clinic) and presumably are subject to institutional oversight. (The podcast only briefly alluded to the treatments at other clinics.)

Spiegel told me, "The fundamental building blocks of their program are not very far away from what is considered standard practice" in other pain programs, including physical therapy and psychotherapy.

Part of the reaction to the NPR piece may be visceral; it's one thing to read about a harsh physical therapy regime, and it's another to actually hear a teen vomiting.

As Spiegel indicates several times, Devyn's treatment was uncomfortable for her to observe; at one point she says "it looks like straight-up torture." Invisibilia also acknowledged that the approach (which was developed by Sherry, although the podcast is about the Kansas City program) is considered a "last resort" and "hasn't been backed up by double-blind studies, which is an important way that researchers prove something works."

That's a necessary disclaimer but it may have unwittingly provoked some of the concerns. The producers told me that treatments like these, whose components include psychotherapy, can't easily be put through a double-blind study in the way that drug therapies normally are, nor do doctors want to withhold treatment from some children while providing it to others, which is another aspect of typical research studies. But that was not explained in the episode.

Nor did the audio episode indicate whether the producers had talked to others in the medical field about whether the treatments were generally accepted or controversial, or if there was harder evidence about their effectiveness. A podcast is not a medical journal report, of course, but even a tiny summary of the bigger universe of patients would have provided needed context for listeners.

Some of that context is found in the Shots version of the story, which quotes another pediatric pain specialist who runs a program with an approach that has both similarities and differences. There's also a link there to small studies that have looked at the efficacy of the programs (the conclusion is that there is preliminary evidence that they bring results but that more study is needed). The newly added editors' note has more links to existing research.

Although the Invisibilia narrative did not say so, the team said its reporting did not turn up criticisms of the Kansas City program (the ratings that I saw for Hoffart on various medical grade websites are all very positive). As critics have pointed out, Sherry's online reviews include some highly negative patient reports — but they also include glowing endorsements of his work, which the critics did not acknowledge.

Asthma or a panic attack?

One serious concern I had is about the moment during Devyn's treatment when, with the journalists in the room and a close-up microphone recording her labored breathing, she believes she is having an asthma attack.

Here's the transcript of that moment:

SPIEGEL: Devyn starts out fine, but about 30 seconds in, she starts having an asthma attack. Her breath gets more and more labored until she's gasping, struggling to get the air she needs.

UNIDENTIFIED PHYSICAL THERAPIST #2: Ten seconds — you got it, Devyn. Push, girl. Push yourself. Come on, girl. Breathing, remember — good.

DEVYN: This might be an inhaler moment.

SPIEGEL: Devyn wants her inhaler, but the therapist tells her that actually, this isn't an inhaler moment. Inhalers are medicine and therefore discouraged. The therapist tells Devyn to just walk around the gym and calm herself down. Devyn does take a lap. Then she does timed frog hops around the gym, after which she realizes that her nose is bleeding.

As Twitter commentators pointed out, asthma attacks can be fatal. Denying an inhaler could be considered medical malpractice.

Was Devyn actually having an asthma attack, as the script asserted? Here's part of the editors' note, which leaves it unclear:

NEW RESPONSES FROM DR. CARA HOFFART:

QUESTION: IN THE STORY DEVYN THINKS SHE'S HAVING AN ASTHMA ATTACK AND IS COUNSELED TO WALK AROUND THE GYM RATHER THAN USE HER INHALER. WHY WASN'T DEVYN GIVEN HER INHALER IMMEDIATELY?

ANSWER: "Therapists are directed to try some relaxation breathing or other calming activity for 30-60 seconds IF we suspect panic attacks or vocal dysfunction might be in the mix. If symptoms persist beyond that timeframe, increased coughing or wheezing, we make sure the patient uses the inhaler. We also have medical providers available to assess any patient with concern for an asthma attack. We have several patients we've been able to discontinue use of asthma medications because they learned through this process they were not actually having asthma attacks, rather [they were having] panic attacks. We monitor this very closely and would not withhold medication for asthma."

Calming exercises are indeed sometimes part of asthma treatment, and panic attacks sometimes present similar symptoms. Either way, the podcast language was problematic. Hoffart's response implies that Devyn was having a panic attack, not an asthma attack. Cara Tallo, the executive producer of Invisibilia and the producer of this particular episode, told me, "We definitely could have said Devyn felt like she was having an attack."

I also think a line should have explained that inhalers will not be denied for actual attacks. Asthma is not an obscure disease, and an editor should have flagged this for more attention before the episode went out. And while the Kansas City program is unusually strict about prohibiting pain medication specifically, as the podcast notes, it would have been helpful to make clear that the prohibition does not extend to medical conditions unrelated to the amplified pain, such as diabetes.

Social media

Some of the social media promotion of the podcast and the more limited Shots piece compounded the confusion, referring to Devyn's treatment as a "cure." One tweet suggested these treatments could help solve the opioid crisis, which is not addressed by the podcast.

Trust us

I have complicated feelings about podcasts. It's precisely the personal storytelling and relaxed narrative techniques that draw in so many listeners. Not every form of journalism needs straightforward recitations of facts.

On the issue of narrative, Spiegel makes this point: "The reason that we tell stories the way that we do is because we feel that this kind of storytelling reaches people at a deeper level: allows people to understand — in a visceral and emotional way — the import of the incredibly complicated (and often abstract) concepts and systems that we are trying to cover. By using these methods we believe we provide access to ideas and stories that many of our listeners probably wouldn't have access to otherwise."

But as I've written before, the beautiful storytelling — and I think Invisibilia falls in that category — brings with it a heavy burden to be doubly buttoned down when it comes to those facts, as well as the nuances. The storytelling sucks people in, and they are not listening for the subtle caveats. Moreover, while there may be deep reporting underpinning the narrative — and in the case of this episode of Invisibilia I am satisfied that there was — the final product, in the service of the narrative, often leaves out the recitation of the evidence used to build the story. The producers are essentially asking listeners to trust them, which is potentially problematic at a time when the public has plummeting trust in journalism.

The Invisibilia team, in fact, does take fact-checking quite seriously. Spiegel told me that, among other processes, "We hire independent fact-checkers to review every sentence of our work, and we also get our work reviewed by internal, NPR fact-checkers. Typically, we also bring in outside listeners (at three specific points in the editorial process) so we can get a clearer picture of what we are missing, and what we don't understand about how our story is hitting people." She added, "We recognize that those processes can always be improved and we are committed to improving them."

To circle back to the listener concerns: I don't think the report glamorized Devyn's treatment or promised that it was something for everyone suffering from chronic pain; there were caveats throughout. But the overall tenor of the piece left an impression about the effectiveness of this treatment based on evidence from just one case. In an hour-long piece, there should have been time to add even a modest amount of information about how similar treatments have or have not worked for other patients.

On the broader issue raised by critics, that the podcast played into damaging narratives about women's pain, I feel strongly that there should be room in the journalism world for stories that explore provocative ideas, as this one did, without an immediate backlash from those who disagree or who may have had a personal experience that leads them to different conclusions. In this case, more precision and making time for a few contextual inserts could have helped listeners come away with a clearer understanding and perhaps avoided provoking a backlash to begin with.

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