Patient Knows Best

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Patient Knows Best, Robin McIntosh Co-Founder of Workit Health

My experience with traditional, authoritarian addiction treatment convinced me that the patient knows best about their own care and goals.

I am twenty-one years old, and every day I drink a fifth of vodka and multiple bottles of cheap wine. Breakfast, lunch, and dinner consist of saltines and olives (later a friend in recovery explains this is due to exorbitant sugar intake). Each morning is the same: I awaken with bloodshot eyes and take a shower that feels like needles pricking my skin-and-bones body. I scavenge the house I share with four roommates for remnants of alcohol from the night before. Due to malnutrition, my hair will not grow past my chin, and my skin is a pallid grey despite the strong summer sun. 

It is in this state that I call my father—drunk—and request to go to a treatment center. He’s waiting for the phone call, and asks if I’d like to be admitted immediately. I say, “Yes. Yes, please,” and then I go back to drinking.  

The doctors in charge of my treatment talked over me and disregarded my goals and decisions

Day one of the treatment center, I sit in a windowless room, facing a bespectacled PhD peering at me from behind a heavy desk. “Robin,” she says, “Robin.” My name drops like a boulder between us. “Let me explain. You developed an eating disorder when you were ten, and that morphed into alcohol abuse. Thus, your primary diagnoses are anorexia and bulimia nervosa. Accordingly, we’ve decided to move you from the alcohol to the eating disorder track. You need to get a handle on that first.” 

I am dumbfounded. My eating issues weren’t on the table when I decided to come here. “I need help with my alcohol use,” I say, “I need to get it under control. I’m in college, I’m young, and I just want to learn to manage it.  In fact, I shouldn’t be here if I can’t work on that, I’m not ready to look at my eating.” 

She shakes her head, folds her hands in front of her. Her eyes narrow; she’s visibly angry. “No. You need to trust us. We know best. You don’t have a snowball’s chance in hell of staying sober if you are still struggling with eating. If you decide to leave, that’s your choice, but it will be against medical advice, and your insurance will not cover the bill.” 

Sixty-five thousand dollars later (out of pocket, I might add. Insurance never did cover the bill.), with a landslide of eating disorder therapy in my head, I am on a flight home to Ann Arbor. The flight attendant approaches and asks for my order. “Two bottles of wine, please,” I say without hesitation. I don’t stop drinking until many years—and institutionalizations—later. 

When the doctor is an unquestionable authority, the patient suffers

Fifteen years ago, the Doctor Knew Best, and it nearly cost my life. My care was determined by intimidating, paternalistic professionals, and was dictated by what my health plan would and would not pay for. The institutions I entered preyed upon the fears of those suffering, and refused to release clinical outcomes to validate outrageous prices and inconvenient, indefinite inpatient stays. 

My story is not unique. Kali Lux, our VP of Marketing at Workit Health, shares a similar experience. “I went to rehab for the first time when I was 21. I was terrified, exhausted, and underweight from heavy drug use,” Kali says. “My only issue around food was losing all interest in it after nights of snorting cocaine, but I was still placed in an eating disorder support group with a group of other young women. Instead of being heard when I suggested eating wasn’t an issue for me, I was told I was in denial and urged to get honest.”

So often we, those who struggle with substance use, are treated more like criminals atoning for transgressions, than human beings experiencing a harrowing brain disease. 

Unfortunately, this top-down, “doctor as deity” environment still exists in many parts of the world. Here at Workit, it is not uncommon to hear horror stories from our members about having to endure prejudice, blatant disrespect, and abhorrent clinical negligence just to access life saving anti-addiction medication like Suboxone or Naltrexone. “Cold turkey” abstinence is still largely favored over harm reduction ones, and the rule, rather than the exception, is treating substance use disorders with a faith based approach. 

“So often we, those who struggle with substance use, are treated more like criminals atoning for transgressions, than human beings experiencing a harrowing brain disease.” 

A review of healthcare professionals’ attitudes towards people with substance use disorder revealed those feelings to be largely negative, with violence, manipulation, and poor motivation to be primary concerns about delivering treatment. In a study of 500 patients done by Columbia University, 50% said their doctor failed to address their substance use disorder.

Workit’s mission is to democratize treatment and to center the voices of our members

Lisa and I created Workit Health to change this. Our core mission is to democratize access to addiction treatment by making it health plan-covered and on demand. Democratize means to “make something available to all people,” and we’re achieving this by offering an evidence-based, gold standard program that puts our members at the center. 

A few simple beliefs guide our work. One, we believe that members not only should but need to own and take part in their healthcare for it to be effective. Two, our members know what’s best for their bodies, their minds, their lives. We are here to support their chosen paths. Three, Workit members deserve a complete assurance of privacy. We do not sell data, nor do we misuse or manipulate it for our own gain. And finally, we believe in representation of our member population among our staff. We are people who have lived the status quo and lost people along the way. Every single Workit employee is screened for values of respect, compassion, and personal experience with addiction. 

All this being said, we of course are not perfect, and often fall short on delivering on this ideal. We ask that our members give us clear feedback about how we might improve, and that they ask questions and express opinions without fear of retribution. 

Paul Leonard, Chief Medical Officer of Workit, says, “As a clinician, I cannot emphasis enough how critical it is for patients to invest in themselves. The first step to that is to be an active participant in their care. We can provide the tools, coaching, and support but only you, the patient, can take the steps.”

It is only with this type of equal footing between patient and doctor that we will truly drive better outcomes for all stakeholders.

Patient Knows Best: Why Workit is Democratizing Access to Addiction Treatment

The post Patient Knows Best appeared first on Workit Health.

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