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Finding a balance: With hospitals prescribing fewer opioids, chronic pain patients are left in a world of hurt

  • Necia Saltmarsh is in constant pain and her husband Michael can only stand by in their Warner home recently. GEOFF FORESTER

  • Necia Saltmarsh is in constant pain and is confined to her couch in her Warner home. GEOFF FORESTER

  • Necia Saltmarsh, sitting in her Warner home, is in constant pain while her husband Michael can only stand by. GEOFF FORESTER / Monitor staff

  • Necia Saltmarsh is in constant pain and is confined to the couch in her Warner home. GEOFF FORESTER / Monitor staff



Monitor staff
Sunday, January 07, 2018

It was, by all accounts, an unpleasant exchange.

Inside a room at the Pain Management Center in Dartmouth-Hitchcock Medical Center in Lebanon – late in November 2016 – Necia Saltmarsh arrived as she often did, with her husband for her monthly appointment.

Saltmarsh, now 63, of Warner, has suffered multiple sclerosis, fibromyalgia and chronic pain for years; she had come to the Dartmouth clinic since February 2016 to refill opioid prescriptions. Hospital policy required those prescriptions be refilled every 30 days. Meetings generally entailed Saltmarsh reporting the effects of her previous doses of oxycodone, OxyContin, and methodone, with adjustments to future dosages made accordingly.

But this day the trip went differently. An unfamiliar doctor, Gilbert Fanciullo – the section chief of pain medicine at the department – tended to the couple. At the start, conversation was smooth. Saltmarsh told Fanciullo that she had experienced a string of recent days with high pain levels; Fanciullo suggested the Center’s functional restoration program – an opioid-free approach to pain involving physical therapy.

Saltmarsh expressed some doubts. The discussion started to sour.

“I noticed frustration in the doctor, and things got progressively worse,” Necia’s husband Michael, 52, wrote in email to the hospital after the event.

Fanciullo began to take issue with Necia Saltmarsh’s descriptions of her condition – later writing in his progress notes that she said she lived in a perpetual state of sitting or lying down. When Fanciullo informed her he couldn’t prescribe her the opioids if that were her state of being, “she changed the story and stated then that (the pain had been) only lately,” he said in his notes, records of which were made available to the Monitor by Saltmarsh.

By then, the tiff had escalated to outright distrust. Fanciullo told Saltmarsh he suspected that “a large proportion of her disease is psychologically mediated.” In lieu of more medication, he gave the couple a DVD highlighting the benefits of physical therapy; “I think that this is the only thing that I really have to offer her,” he later wrote.

Saltmarsh walked out of the room, accusing Fanciullo of calling her a liar. (Fanciullo, in his write-up, denied he had done so.) “At that point I told them they should get their care somewhere else,” Fanciullo wrote.

“The visit was really a very (challenging) visit I think for all concerned,” he added.

Recalling the incident a year later, Saltmarsh had a less charitable take. She felt, she said, as though she was considered a fraud.

“There was ... an atmosphere of: ‘You’re lying, and we know you’re lying, so we have to do this because you’re lying,’ ” she said. “They used words to paint me in a bad light.”

By December, with this the second of two heated incidents with staff in a year, Saltmarsh was officially asked to seek care elsewhere.

A spokesman for Dartmouth-Hitchcock said the hospital could not comment on Saltmarsh’s case without her expressed consent to do so; Saltmarsh declined to give that consent for this article. Fanciullo, who has since retired and could not be reached, would also be prohibited from commenting under HIPAA, the spokesman said.

But if the specifics remain contested, the broader trend is agreed: As New Hampshire’s opioid crisis heightens, hospitals are adopting more stringent prescription policies for patients with chronic pain, and some are advocating remedies that avoid opioids altogether. Some chronic pain patients see that search for balance as unfair.

​​​​​​The pain begins

It wasn’t too long ago that everything was different for Saltmarsh. In 2000, she and Michael lived in Goodyear, Arizona – she a finance manager at a large company; he an electrical engineer. The two were Granite Staters by birth, but were never content to stay put long – memories of cruise trips and foreign sunsets still adorn their walls.

The pain began in her shoulder, sharp but unending. By 2002 it had spread to her back and extremities. It would take until 2007 before Saltmarsh was officially diagnosed with primary progressive multiple sclerosis. But she knew the mental toll years beforehand; struggling to keep herself sharp, Necia left her company position and the couple moved back to New Hampshire, in part for the health care.

Today, her life is unrecognizable. Whatever Saltmarsh does, the pain tingles – at its best a low hum, at its worst a pounding throb. Even sitting down, her wrists writhe and her fingers tremor; finishing sentences requires feats of willpower, word by word.

There’s no longer any one place to pinpoint each pang – the hurt is simply everywhere, without origin or end.

“It’s everyday, and you spend everyday trying to get it under control,” Saltmarsh said. “Which is exhausting.”

And so, with every second fixated on the hurt, the opioids, to Saltmarsh, are a tool of survival.

“It doesn’t just take away pain,” she says of the drug treatment. “It in essence gives us back our lives.”

Saltmarsh says she works to avoid the pitfall of addiction, requesting reductions or increases of doses only to the level where she can be comfortable, but sharp. But as a surge in overdoses swept quickly through the state, she says prescribing attitudes began to reverse course, and then harden.

Walking into pain clinics, she said, became an exercise in suspicion and shame.

“The air’s different,” she said, describing the clinics today. “The very air. No one smiles. You get the sense of them looking at you like you’re subhuman.”

In February 2016, Necia and Michael decided to abandon a local pain clinic they were dissatisfied with for a provider they held in high regard: Dartmouth-Hitchcock Medical Center.

A different way

To Bruce Vrooman, who took over from Fanciullo as head of the Dartmouth-Hitchcock Pain Management Center in June, the goal of the pain clinic remains as it always has: to improve the quality of life for those suffering extreme pain. He and others say they simply see better solutions to pain than opioids.

To start, he says, the evidence that opioids provide the best relief for pain is thinner than it might seem. A November study in the Journal of American Medicine by the Montefiore Medical Center found that prescription opioids were no more effective than over-the-counter pain killers for certain injuries, Vrooman pointed out. Further research has tended to add weight against the use of the drugs, he said.

The origins of America’s recent prescription craze are rooted in the 1990s, when physicians saw the elimination of pain – at any cost – as a primary objective above all concerns, Vrooman says. But with the growing heroin and opioid epidemic – and the inescapable reality of a vastly oversupplied commercial drug market – public opinion is finally beginning to catch up to the science, and against the drugs, he said.

“The risks for opioid medication have been found to far exceed any proportional benefit,” Vrooman said.

Instead, at Dartmouth-Hitchcock, Vrooman recommends his physicians try newer practices such as the functional restoration program, which attempts to wean patients off opioids.

For those responsibly receiving the benefits of medication, that sacrifice can seem high. But Vrooman insists that the reward – of reclaiming a life lived without opioids – stands on its own level.

“(Patients) say, ‘Doc, thank you for giving me my life back; I feel like I’ve been asleep for 20 years,’ ” he said. Family members are ecstatic.

Meanwhile, policies are changing too. Several years ago, Dartmouth-Hitchcock implemented a new system that mandated patient-physician contracts that dictate conditions before prescriptions are issued. In December, new research by Dr. Richard Barth, Dartmouth-Hitchcock’s chief of surgery, is being applied to optimize (and limit) the number of opioids prescribed after surgeries.

“We have a mandate to take care of our patients’ pain, but we also have a societal responsibility to right size the amount of opioids we prescribe,” Barth said at the time.

And in 2016, the New Hampshire Board of Medicine passed significant changes to its opioid prescribing rules to put stricter limits on physicians generally. For chronic pain patients, the rules included a mandatory contract system, new caps on prescriptions and mandatory urine tests.

James Potter, Executive Vice President of the New Hampshire Medical Society, who helped negotiate the new rules, says overall, the new rules are well balanced.

“New Hampshire probably has the most reasonable opioid prescribing law and rulemaking, and I think from working with the Board of Medicine that they really took that to heart,” he said.

But chronic pain patients, he added, create a conundrum.

“Everyone is very well intentioned and thoughtful and we’ve tried to as best we can take out more than knee jerk reactions,” Potter said of the Board. “But managing chronic pain, it’s challenging.”

For Saltmarsh, meanwhile, the changes are intrusions, not improvements. The extra rules, she says, are simply impeding her ability to manage her condition.

“The people who get their drugs from the street are still getting their drugs from the street,” she said. “It’s not changing. Instead, you’ve created a whole group of people who are one, fighting their diseases, two, fighting their pain, three, fighting the pain clinics, and it would seem now, four, fighting the government?”

Is chronic painunder-medicated?

When it comes to tightening practices, not all physicians have embraced the shift. Dr. David Nagel for one, a Concord rehabilitation specialist, is strongly opposed.

Nagel, who has been a local and national advocate for chronic pain patients for years and wrote a book on the topic – Needless Suffering: How Society Fails Those with Chronic Pain – in 2016, rejects the notion that chronic pain patients should be weaned off opioids.

If anything, he says, many should be given more. “My feeling is we under-medicate chronic pain,” he said.

Nagel says he accepts that when it comes to the measured benefits of opioids for chronic pain, the research has been less than definitive. But he says the same can be said for the physical therapy being championed by Vrooman and others. “Lack of evidence doesn’t mean lack of efficacy – there’s definitely a fair amount of patients that benefit (from opioids),” Nagel said.

Of the roughly 35 to 40 million Americans suffering from “high impact chronic pain,” 25 to 30 percent have conditions for which opioids are “a reasonable option,” Nagel said. Not providing proper treatment can lead to tragic ends; a recent literature review found that chronic pain patients are twice as likely to attempt suicide as others.

But with public scrutiny of the opioid crisis shifting from street dealers to pharmaceutical companies and prescription practices, Nagel says the number of doctors willing to prescribe to patients who need the drugs is dropping.

That in turn is underserving a population in need, he said.

“It’s really important for people with chronic pain to have their pain accepted and viewed,” Nagel added.

For all their differences, Nagel and Vrooman agree on a major point: whatever the rules say, decisions should be made on a patient-by-patient basis.

“You have to be really careful when you take too global a point of view; you have to look at people as individuals,” Nagel said.

Meanwhile, in the medical field, the debate remains fraught; potential liability, whether from over or under prescribing, is real and feared. But with the effects of the opioid crisis fully entrenched in New Hampshire life, what the new policies and rules say is perhaps beside the point: doctors are likely to err on the side of prescribing less anyway, Nagel says.

To Saltmarsh, though, the rules are still core to the problem.

“We are fighting our diseases,” she said. “Why do we have to fight our very government on top of that?

“Why are they doing this to us when they don’t have to?”

(Ethan DeWitt can be reached at edewitt@cmonitor.com, or on Twitter at @edewittNH.)