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Patient Care

Not In Her Head Part 3: The Letter A

Over the last two months we’ve shared the incredible story of EMS World Expo keynote speaker Anne Montera. Her tale continues here.

“When an uninstructed multitude attempts to see with its eyes, it is exceedingly apt to be deceived.”

—Nathaniel Hawthorne, The Scarlet Letter

He finds her sitting on the middle of the kitchen floor, glasses off, nauseous and disoriented. Inherently exhausted, nurse Anne Montera had been waging a battle against her chronic pain for decades. It can be easy to forget that the term battling an illnessisn’t just a euphemism—there is true physical and mental struggle.

Chris, her husband and ally in her constant fight, is no stranger to picking up the pieces. It’s the holidays, they’ve recently moved, and everyone is operating under a lot of stress. Anne’s carefully regulated pain regimen is suffering. He helps her to bed, removing her fentanyl patch and getting her medicine for her nausea. Making sure she’s settled and comfortable, he leaves the room momentarily. 

When he returns the room is eerily quiet. “It just didn’t feel right,” he says. An experienced paramedic and CEO of the local EMS agency, Chris knows immediately what he’s sensing. Only the dead obtain that absence of animation. Throwing on the light, he finds Anne cyanotic, with a few agonal respirations. He flips her over, opening her airway—then the medic inside him disappears, and the husband takes over. He screams her name, yelling for help from others in the house. 

They pull her to the floor. He feels for a pulse, finds nothing. Starting compressions, he sends their teenage daughter out to his response vehicle for the defibrillator. 

1 and 2 and 3 and 4…

With the assistance of a family friend, they continue their resuscitation and call 9-1-1. Chris grows frustrated with the dispatcher, who is using the CAD script to walk him through CPR. They know who he is—why don’t they realize he knows what he’s doing?

1 and 2 and 3 and 4…

He turns his EMS radio on so he can listen to the response and issue instructions such as gate codes and a description of his new residence. Ironically both he and Anne realized when they moved into the community that the gate could present access issues for emergency responders. Just a week earlier they were working on establishing an official process to ensure it would not delay help to people living there. 

1 and 2 and 3 and 4…

“I can’t believe I’m doing this to my wife!” he cries out. “I know,” their friend replies. “Just keep going.” His cadence never wavers, but for a fleeting moment Chris acknowledges a brutal truth: that the excruciating pain that had been his wife’s daily companion of years would finally be gone. 

1 and 2 and 3 and 4…

Their daughter arrives with the AED. No shock advised. A firm, steady beat meets his fingertips at her throat. Chris continues to bag her, processing everything as he watches her chest rise and fall. She stirs beneath the mask, trying to speak—and the tension wire that’s been holding them all together in this ultimate caregiving act finally snaps. Their daughter starts crying as Chris sags in relief. Firefighters make their way into the room, and Chris backs out. Time to let them do their job. The entire incident has taken maybe 6–8 minutes, but for the family it was an eternity.

The Scarlet Letter

Anne’s memories of the event are patchy at best, filled with sensory recall. The first thing she remembers is the mask—the plastic mask from the BVM “smelled disgusting.” Then there were bright lights, Chris yelling her name, and her daughter squeezing her hand. 

The highly driven caregiver in her had returned by the time she was being wheeled through her kitchen. She remembers telling a paramedic in back with her to buckle up, as she and Chris had been part of a recent ambulance safety initiative, and it was important to her. 

The hospital was a series of more bright lights and intense discomfort. Her chest ached from the compressions, and her chronic pain flared. She was restless and still disoriented, unable to keep still or lie down. Her regimen was very specific to timing and dosing, and all of that was now out the window. She struggled with the assessment, the CT scan. Her pain was increasing.

The ER staff worked to establish a timeline regarding what happened. Her pain was religiously regulated, but the Lyrica had been causing memory loss—was it possible she inadvertently doubled her Lyrica? Her Oxycontin? Her fentanyl patches were a different brand from a different pharmacy, leaving her open to fluctuations in absorption. She was in precipitous menopause from recent surgery, her entire chemistry different. Whatever had happened, for the first time in decades of medically directed pain management, she had overdosed, and it almost killed her.

The hospital recommended admitting her. Chris was reluctant but agreed it might be prudent. She was moved to the telemetry unit for two days. 

The hospitalist came in for a cursory interview. She told Anne, “You don’t need all these medications, so we’ll just see how it goes today.” She then cut Anne’s regimen by 75% without any discussion. She took hours to respond back when Anne’s symptoms escalated, then told her, “Honey, you can do other forms of pain management too, like hot packs or tea.” Anne produced a hot pack from under the blanket and stared back at her. “Like this one?” 

The hospitalist left the room, leaving Anne without relief and a large red on her medical record—for addict. That would follow her through the rest of her stay.

Unmanaged Care

“[The scarlet letter] had the effect of a spell, taking her out of the ordinary relations with humanity and enclosing her in a sphere by herself.”

—Nathaniel Hawthorne, The Scarlet Letter

Anne’s memory remained spotty. When she mentioned her chest pain, the nurses reminded her that her husband did CPR on her the night before. At first it filled in the gap, but as the day wore on it became an accusation. Every time she’d ask for relief, she would be reminded about her husband having to do CPR on her. One even said, “You can’t die from too much pain.”

This wasn’t medicine, it was penance. She didn’t need absolution, she needed treatment—yet the staff seemed unwilling or unable to acknowledge her pain. They did not want to manage her pain but were unwilling to treat her withdrawal or menopausal symptoms. Her pain scale soared, as did her vital signs. When her blood pressure escalated to 200/114, they attempted to treat it with IV medications. Anne explained to them that this happens when her pain goes unmanaged, but all they wanted to do was treat the number—she had to formally refuse the antihypertensive meds. She was on Glucophage for her ovarian cysts; instead of asking why they gave her a diagnosis of diabetes and performed repeated blood glucose checks, even when she explained what it was being used for. Nobody contacted her primary physician about any of this. They were alone.

She felt lost, as if there was no one at the facility willing to advocate for her. They kept treating symptoms but never the actual problem. Chris struggled to help, but despite both of their backgrounds, the staff consistently treated them like they were unable to comprehend what was going on. When they tried to sign out, they were told that if they did, insurance would hold them liable. They were prisoners of the very system they worked for and trusted with their health.

With the label came the stigma and the loss of identity. They would ask Chris how he was doing, but not once did anyone ask Anne how she was doing mentally or if she was able to process this near-death experience, regardless of cause. Anne struggled with this, being around so many people in the same profession as she was. Perhaps that’s what part of the problem was: She wasn’t a patient, she was a mirror of what could be.

Substance abuse in nursing, especially as a negative coping skill, is not a new subject. Twenty years ago researchers found that the prevalence of substance use of all kinds, from cigarettes to cocaine, was as much as 32% in nurses. ER nurses were 3.5 times more likely to use marijuana or cocaine, oncology and administrative nurses were twice as likely to binge drink, and psychiatric nurses were most likely to smoke. No specialty differences appeared for prescription-type drug use.1This was all before the prevalence of opioids and ease of access to them. Though Anne’s case was not the result of abuse, she was still a nurse who had overdosed. 

The staff routinely spoke about her as if she was not there. They would exchange reports right outside her door. She would have to listen to the nurses tell each other about her “huge problem with addiction,” but that her husband is the CEO, “so we have to be nice to her.” She wasn’t a person anymore, she was the sum of her medication list. 

Anne’s experience occurred right at the cusp of national recognition of the opioid crisis. Narcan kits were not regularly available. Both Chris and Anne say it never occurred to them to have the drug at home. They were so meticulous with following their doctor’s orders, they’d never considered it. 

They realized there was no reasoning with the hospital staff, and Anne was continuing to go unmanaged. Nobody listened when they explained how carefully regulated Anne was, how they were already de-escalating her from her meds, safely and slowly. They didn’t have the expertise to manage her complex case and were unwilling to go further. Chris and Anne agreed to whatever discharge instructions they were given just to escape.

In retrospect Chris says he would never have agreed to have her transported if he’d known what kind of care they’d get from the medical community. 

Healing vs. Correcting

This is an important statement coming from a leader in EMS, someone whose bread and butter is being a component of this care system. Chronic pain patients routinely suffer from stigmatization.

According to research, the trust relationship between patient and clinician must exist and be reciprocal, and it’s more important in the management of pain than perhaps any other specialty.

Failure to reach that accord results in iatrogenic suffering by the patient, because the physician is unable to move from previous negative experiences and projects them onto the patient. The negative stereotype causes the clinician to assign the patient less credibility, resulting in testimonial injustice.

“The ethical implications of testimonial injustice are pertinent to those with stigmatized identities such as patients with chronic pain and addiction. Individuals with stigmatized identities are often victims of negative attitudes and assumptions, and their testimonies are frequently seen as lacking credibility.”2 

The nature of EMS allows us to develop a huge negative bias toward overdose patients, who statistically result more from abuse scenarios than anything else. For many providers a constricted pupil can mean an entire sequence of depersonalization in their head. It is crucial that we regain and promote the perspective of healing versus correcting. 

There was no ombudsman, no active advocacy. Even when Anne completed a painful detailed “patient experience” survey, there was no follow-up of any kind from the facility. 

That slash of red ink followed Anne home, haunting her family. Her daughter, emotionally exhausted, reported the event to a teacher at her school. Not knowing the background and acting on school protocols, the teacher notified the school counselor, who felt the girl was being neglected and might not be in a safe environment. This triggered a social services investigation, subjecting Chris and Anne to further scrutiny by the public safety system. It would even be used against her in child custody discussions.

Chris had to return to work, facing an entire department that had by now likely heard some piece or version of events. HIPAA notwithstanding, providers are still human and have vivid imaginations. Chris and Anne were private people, and this had ripped a gash in their shield. How much do you share?

With Anne’s consent Chris decided to be as transparent as possible with his staff. He crafted an e-mail that was as factual as possible, detailing Anne’s medical struggle and what occurred on the night of the arrest. They felt at least this way they were controlling the flow of information and could better prepare for repercussions. And instead of pushback they found support. Most of the staff had no idea about Anne’s history and were overall very supportive of the couple. It had been the right call.

Back under the care of her primary physician, Anne labored to rework her plan and get things back under control. Sleep was scarce for both of them. Anne lay awake at night, writhing quietly with pain and hot flashes, afraid if she fell asleep it might be the last time. Chris’ sleep was broken by the need to check on her breathing.

A Return to Roots

How does the Monteras’ experience translate to out-of-hospital care? It provides stark reminders that every facet of care, no matter how small, has the capacity to reach much farther into the future than we like to imagine. We are the ghosts, the special forces, the ninjas that strike with our needles and airways and run away before we can be ensnared into meaningful interaction with patients—leaving us vulnerable and increasing our emotional risk. Yet every lack of a kind word, every roll of the eye or dismissive comment, lingers on the psyches of those who have asked for our help. 

Yes, there are a lot of people out there who struggle with drugs and alcohol, and the reality of our job is that the ones you encounter will be far more results of abuse than chronic pain. The decision to weight every interaction against the idea of abuse will prevent you from being an effective clinician. You may be able to treat the symptom but will completely miss the problem.

The very first lessons in EMS involve learning your ABCs, where meant airway,not addict. It’s time to return to our roots: look, listen, and feel.

Look past the constricted pupil to see the person, the situation, the history. Take the time to move past the easy assumption to make sure you aren’t missing source material that points to additional issues.

Listen to what they say. Take a comprehensive history whenever possible and do not assume you know more about their experience over the course of your 10-minute interaction then they’ve learned in 10 years.

Feel some compassion for the person and their situation. Consider that they aren’t deaf. Don’t depersonalize them or speak about them like they aren’t there. 

can also stand for aftermath. Remember that not every bystander is going to be a healthcare provider. Lay family and bystanders usually have no experience to draw from, no context for the care they’ve just provided.

Take the time to coach and debrief them through what just happened. If the resuscitation is unsuccessful, they may carry that burden of guilt unnecessarily, additional casualties of a war on drugs that nobody ever wanted to fight. 

Join us next month for the final installment of Anne Montera’s remarkable story. And if you catch her keynote address at EMS World Expo, no spoilers, please!

References

1. Trinkoff AM, Storr CL. Substance use among nurses: Differences between specialties. Am J Public Health,1998 Apr; 88(4): 581–5.

2. Buchman DZ, Ho A, Illes J. You present like a drug addict: Patient and clinician perspectives on trust and trustworthiness in chronic pain management. Pain Med,2016 Aug; 17(8): 1,394–406.

Tracey Loscar, NRP, FP-C, is chief of operations for Matanuska-Susitna (Mat-Su) Borough EMS in Wasilla, Alaska. She is a member of the EMS World editorial advisory board. Contact her at taloscar@gmail.com.

Comments

Submitted byblanchets@aol.com on 10/04/2018

Wonderful series of articles.

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