When I shared with my clinician that I had previously been a heroin user, she made me feel ashamed. This taught me the importance of listening to patients with nonjudgmental curiosity.
Lifelong Learning in Clinical Excellence | April 14, 2022 | 3 min read
By Kirsten Elin Smith, PhD, National Institute on Drug Abuse
My new general practitioner looked up from typing and I wished I had lied. That pause. That look before hunching back over the laptop. I should have known better than to share my history of intravenous heroin use. The fear set in. Fear of judgment. Fear of how this could affect my future medical care.
This encounter occurred after I moved to a new state and medical system. I thought since it had been 14 years since I met diagnostic criteria for substance use disorder (SUD), and since I’d earned a Ph.D., reached an attractive socioeconomic class, and worked on the same campus as the doctor, that I wouldn’t feel the deflating combination of embarrassment and anxiety when disclosing behaviors undertaken during my youth.
I felt foolish for sharing a part of my history that I know the literature suggests is still stigmatized by medical students and professionals. The literature converges with my experience and that of others. Too many people I know, either personally or when I was caring for others, have experienced SUD stigmatization. Many have chronic pain, infectious disease, or psychiatric comorbidities. The literature further suggests that people with SUDs and comorbidities are underdiagnosed and undertreated.
The physician told me that I wouldn’t receive the controlled substance that I’d been prescribed for years because, “We don’t give controlled substances to addicts.” My stomach turned. I said nothing. If I had, would that be labeled “drug-seeking” or “doctor shopping?”
That moment hit hard since I objectively knew more about addiction and recovery, by training, than the practitioner. I knew more about myself and my health needs. I knew that the evidence-based medicine process should consider patients’ goals, values, and wishes. The wishes of a person with SUD matter as much as those as a patient without SUD. The judgment and autonomy of a patient with SUD history shouldn’t be scrutinized more than a patient without.
That people with SUD histories are treated differently reveals a misunderstanding pervasive in medicine and culture: that “once an addict, always an addict.” As someone once addicted to illicit drugs but now remitted and as an addiction scientist, I can attest that the phenomenology and neurobiology of drug use, addiction, and remission isn’t tidy. It’s nuanced and varied.
We can’t expect clinicians to be SUD experts, but we should expect that they ask questions that probe deeper when it comes to complex neurobehavioral phenomena that can affect the care patients receive. We should expect that they understand that pathologies change, that people change.
As the U.S. drug epidemic continues, clinicians will increasingly meet people with SUD histories and complex healthcare needs. Clinicians need to be prepared. My professional training and personal history suggest the following points to remember and questions to ask when interacting with a patient with active or remitted SUD:
1. Patient history matters but understanding who the patient is today matters more.
2. Patients with active or remitted SUD may be reluctant to disclose out of fear, not mendacity.
These people experience stigma, and their autonomy is often diminished after disclosure.
3. Express empathy and compassion.
Instead of attributing behaviors to stereotypes about drug-using people, ask questions. Start from a place of credulity until you have reason to be skeptical.
4. Use discretion and authority to prescribe justified medications.
A patient’s SUD status doesn’t automatically discredit their wishes or disqualify judicious use of medications.
5. When helping a patient with SUD history make decisions, ask yourself how you would behave if the patient didn’t have a SUD history.
Informed consent and shared decision-making are for all patients. Ensure that patients with SUD histories understand treatment options and are equal partners in their health-related decision-making.
6. Don’t assume that patients with SUD histories know how to advocate for their health needs.
Most patients do not. Patients with SUD histories belong to a vulnerable and disempowered population. Help them advocate as they navigate. Be an advocate when necessary.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.