Care Transitions and Addiction Recovery: Avoiding Data Gaps and Communication Silos

I remember arriving at the ER with my dad, afraid. Not afraid of the swelling in my throat and difficulty breathing, but of the possibility I could relapse. I was newly sober–4 months–and had been down this road before. This was my second time getting sober, and I knew my disease needed very little reason to rear its ugly head. Good, bad and middle-of-the-road days had all been reasons to drink or use heroin in the past.

When we arrived at triage, I answered all the nurse’s questions while a flow of secondary thoughts ran through my head. Should I tell him I was a recovering heroin addict? What if he judges me? Or treats me poorly? What if they give me something with an opiate that sets off the familiar craving and I’m once again “off to the races?”

“Do you have any allergies?”

My face got red and I stammered, “Umm, I… I… I can’t have opiates.”

He sighed and looked up from his computer. “Excuse me?”

“Umm, I’m allergic. Allergic to opiates.”

“No, you’re not. You can’t be allergic to opiates.”

My face got more red. “Well, I’m in recovery.”

I desperately didn’t want to say the words out loud. I had gotten comfortable announcing I was an alcoholic and addict in meetings, but it seemed an impossible leap to say it to a stranger who was already exasperated with me and who I knew dealt with drug seekers often. My dad saw my struggle and stepped in, telling the nurse that I was a former heroin addict and could not have any opioids. I was 24 at the time, and although I was not a child, I felt very, very small.

We were brought into another room with several beds separated by curtains. The man in the bed next to me was the stereotypical picture of an addict −unkempt and disheveled. I remember overhearing nurses who were frustrated he was here for the second time that week asking for opiates. He was a frequent visitor in this ER, and it didn’t seem like they believed his complaints.

The doctor examined me and diagnosed me with mononucleosis. He sat with my dad and me and said that after the swelling diminished, I’d be good to go home. After he left, a nurse came over with a syringe of medicine. She prepped my arm and was about to give me the shot when my dad stopped her and asked her what was in the medication.

“Morphine,” she said.

A wave of fear and horror came over me.

“She can’t have morphine! She’s a former addict!” My dad was fuming. Drug addiction and avoiding relapse was new territory for us, and we thought we had done everything right to prevent inadvertent exposure to opioids.

My fear finally subsided a little while later, giving way to relief because I had a family member with me who knew my history and had the forethought to question what was in the syringe–even though we had already told the intake nurse that I couldn’t have opioids. Not everyone is that lucky.

I was not treated as an “addict.” I was right that I would be judged–but wrong about how. The triage nurse didn’t communicate to other clinicians that I was an addict. So, they came to my bed and, by outward appearances, viewed me as a having-her-act-together grad student arriving with her father–I “couldn’t” have been an addict. Not everyone is that privileged.

It wasn’t easy for me to share my status as an alcoholic and heroin addict outside of a meeting. I did everything right–I was upfront about my history and yet not only was I still offered opiates, but they were offered without warning. I wonder what would happen if I were put in that situation and there was a mechanism for the triage nurse to collect and share my information with other providers.

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Access to a person’s complete health record, including substance use disorder (SUD) information, is essential for fully-informed diagnosis and treatment decisions. It also helps prevent risk of serious or even fatal drug interactions and unintended prescribing errors due to lack of complete patient information, as in the example above.

Netsmart has been a long-time advocate for updates to federal regulations to allow a person with an SUD or a history of diagnosis, treatment or referral for SUD to easily consent to share SUD-related health data with their treating providers.

The Protecting Jessica Grubb’s Legacy Act, passed by Congress and signed into law as part of CARES Act in March 2020, includes significant statutory amendments that align 42 CFR Part 2 substance use treatment privacy regulations more closely with HIPAA while strengthening anti-discrimination protections and retaining strong penalties for information breaches. Netsmart will continue to advocate on behalf of our clients as part of the the Substance Abuse and Mental Health Services Administration (SAMHSA) rulemaking process related to the Legacy Act in 2021.