Building a Recovery Affirming Care System on a Foundation More Solid than Stigma
Over the course of my decades of work in the SUD field and as a person in recovery, I can honestly say that I have tried as hard as I can to do my very best to serve people in need of help with a substance use condition. I suspect most others in this field share this same ethic. I would also tell you that despite this level of dedication, over the years I have occasionally found that I harbored deep-seated, hard to spot, negative views about people with addictions. They came out in ways that I was not always able to recognize at the time. I suspect I am not alone in this either.
Recently, I worked with a group of researchers in a focus group examining barriers and strains on addiction treatment at the national level. There were other people from across the United States on the call with truly horrific experiences in our service system. An unfortunate yet far too common experience. For readers, please know that there are a lot of caring people who do their best with all the limitations faced to serve people. However, it is also true that one does not have to dig very far to hear horror stories of poor care and punitive treatment posing as help. As the discussion ensued, we agreed that if we ended up getting rid of our entire SUD workforce and care system and rebuilding it, we would likely end up in the very same place. The changes we need to make are more foundational.
There are bodies of research on how even people in recovery look down on ourselves and each other as a result of the all-encompassing stigma in our society. These hidden attitudes are known as implicit biases, and they are everywhere. We really do not know what we don’t know, and they influence everything we do. We must do a better job of identifying it and addressing them to move forward. Anything less simply will not work.
Over the course of my decades of work, I have consistently found that the root cause of most of our challenges is the deep negative perceptions in America about addiction and recovery. The widely held and far too often verbalized belief that we are “those people who did this to themselves” and that people like me ultimately do not deserve help. It is why we provide care at shorter durations and lower intensity than needed and fail to invest in authentic recovery supports in our communities. As a result, fewer people than should find recovery. This is a negative feedback loop that validates to a relatively hostile society that we do not actually get better, leading to even more suboptimal care.
The unblemished truth is that many people in our society openly look down on us. As I have noted in past writings, my organization, PRO-A did a large survey on perceived stigma nationally with RIWI and Elevyst. Our report, HOW BAD IS IT, REALLY? Stigma Against Drug Use and Recovery in the United States examined perceived stigma and found that 71% of Americans believed that society sees people who use drugs problematically to be outcasts or non-community members.
Three out of four respondents perceived that society sees us as outcasts. I see it with my own eyes. I have heard people around me say horrific things about people like me. Consider “take the drug addicts out to the hospital parking lot and shoot them.” People die every day from these attitudes. We found somewhat lower rates of endorsed stigma on a more recent study of medical stigma in the US, but much higher than we would like to find. These attitudes are everywhere.
They can be very subtle or in your face. It was what Kristen Johnston spoke about when reading the epilogue of GUTS ten years ago when a friend told her to stay silent about her recovery because it made people uncomfortable. It can look like punishing a person for not responding to the limited services offered. Medical staff who call someone who has experienced multiple overdose reversals a “frequent flyer” and families told to practice “tough love.”
To see implicit bias in action we need to look no farther than a service system that offers less care than the evidence has shown time and time again people need to get better. As Nick Hayes notes in his recent STAT News piece, For addiction treatment, longer is better. But insurance companies usually cut it short. These same systems hammer providers to offer evidence-based care and then, despite the evidence fund services in such a limited fashion that they can’t help. This results in poorer outcomes, which validates the belief that people like me do not heal, resulting in more of the same.
While it is clearly our biggest barrier, the pathway forward is murky. As psychologist Anthony Greenwald explains in making people aware of their implicit biases doesn’t usually change minds. We really don’t have much in the way of evidence-based practice to effectively address implicit bias. He suggests that leaders of organizations need to care enough to track their data to identify where disparities are occurring. Then they need to make changes and examine the next cycle of data to see if things improve. Practices that take commitment and long-term effort.
It is vital that all of us, and all of our institutions, particularly those dedicated to helping us examine how their internal negative perceptions about people who struggle with substances influence policy and practice. Subtle or not so subtle beliefs rooted in moralism, racism and a host of other “isms.” We make it hard for people to get well because of these deeply seated and pervasive negative attitudes. We are often not even aware of these subtle beliefs influences everything we do. These are the foundations are whole SUD care system is built on and it is why over time we tend to set up the same punitive processes over and over across history.
This article, Implicit bias in healthcare professionals: a systematic review. found that healthcare professionals exhibit the same levels of implicit bias as the wider population. We are increasingly focusing resources on integrating SUD services into institutions that harbor deeply held negative views about us. It is clear it will fail unless we reduce the underlying biases and change the culture.
Work is being done within the National Institute of Health to explore effective efforts to address implicit bias. We have a long way to go as noted in this 2021 NIH document, Scientific Workforce Diversity Seminar Series (SWDSS) Seminar Proceedings – Is Implicit Bias Training Effective? It suggest comprehensive approaches must be used and that compulsory single episode trainings are largely ineffective. This may seem prohibitive until we consider that it is virtually certain that if we do not do so, nothing will change.
We must commit to over the long-term to getting rid of the negative perceptions that exist nearly everywhere about addiction and recovery. An example of a place to focus such efforts is the work towards developing recovery-oriented systems of care. Legitimate work in this arena would dedicate resources to finding and addressing implicit bias against persons who experience substance misuse and those of us in recovery at all levels. This would include how such programs are designed and implemented or they will invariably become tools of oppression, because that is how powerful these forces play out across every corner and crevice of our society.
As Wellbriety elder Don Coyhis noted, “all organizations are perfectly designed to get the results they get.” if we want different results, we must redesign the system. This is profoundly challenging. Even systems that do not work offer benefits to those vested in keeping it just the way it is.
To build a system of care that gets more people into wellness, we must dig down deeper and put our institutions on foundations firmly anchored on the bedrock of positive regard. To build a system with recovery at the center. To set up checks and balances to ameliorate the profound impact of these negative views within us all. Not a new concept, just one we have never implemented perhaps because it seems hard thing to do. Instead, we keep trying to build programming on the shifting sands of implicit bias that then erode our capacity to heal.
Processes that perpetuate the system we have:
- Ignoring disparate and discriminatory processes within our systems.
- Lack of transparency in system design, implementation, awarded funding and evaluation.
- Only including impacted recovery communities as proforma participants or not at all.
- Developing programming that ignores feedback from negatively impacted groups.
To move things forward we would need to have:
- System leaders who openly look for blind spots and seek feedback on remediation.
- Disparities in system design and implementation openly acknowledged.
- Systems that develop and fund services transparently.
- Processes in place to identify and address biases within every institution.
- Impacted groups invited and engaged in resolving disparate policies.
- Open cultures dedicated to reducing negative perceptions about persons who misuse substances.
- Diverse communities engaged at all stages of care system development, deployment, facilitation, and evaluation.
Millions of Americans have found recovery. Recovery has profoundly improved our lives and helped us to be better family and community members. All of this has occurred within a system of care that is built on a foundation of stigma. It speaks to the power of recovery that people heal, often despite the system of care rather than because of it.
Imagine what we could accomplish if we addressed the underlying biases in our society that make it hard for people to heal. They are present everywhere, but it is most likely that if we started to address them in our systems of care, we can start to effect change and build a better care system.
The stakes are high. The hard to argue truth is that unless we do so we will keep rebuilding flawed care systems. It may be hard, but not nearly as hard on our society as not doing so.