The recent discussion on chronic pain and suicide on the National Pain Report has elicited some significant and candid responses from our readers. The temptation is to look at the issue in a binary way—people are being denied care and many are choosing to either contemplate or actually take their own lives.

But there’s more—as Dr. Terri Lewis asked on Twitter recently–Are policy makers, clinicians, patients, and payors sharing the same mental models?

The answer is most assuredly not yet.

That’s why Lewis has been leading a conversation about suicide with our readers and the pain community. People have been reaching out to her—and we caught up with her over the weekend to find out what she’s been learning—and what she plans to do with what she’s learning.

National Pain Report: “You have received a lot of responses from people who either have actively contemplated suicide or loved ones who shared their stories about people ending their lives. What are all those responses telling you?”

Dr. Terri Lewis: “These responses are telling me that the health care system that serves persons with multiple chronic conditions is not working. And it sure isn’t working for effective governance either. Whether by policy design or through overspecialization, the lack of adaptation to the needs of persons at whatever life stage they find themselves operating within has created significant disruption in ways that are not good for communities, health care systems, government services, or families.”

The words folks use to describe their feelings of helplessness and disempowerment to regain control over the quality of their days are consistent, palpable. I have several longer-term objectives that include documenting that suicide is often (not always) a considered choice in this underserved population of people, and that this choice is being made against transformative changes within our health systems across the nation.

These transformative changes amount to serious encroachment by the legal system into the practice of medicine through the application of surveillance tools that are engendering decisions which reallocate resources away from health care and toward enforcement controls processes that are unrelated to managing health outcomes. We need to seriously examine the costs to the system that this is inserting into the entire system and the long-term impacts of building to a system that has so little positive return for communities. The current course is unsustainable. It prematurely moves people into positions of disability and reduced economic circumstances. This has all kinds of downstream consequences.

National Pain Report: “You have gathered an unbelievable amount of information through the survey—What are you going to do with it and how will you distribute it?

Dr. Terri Lewis: “I’ve concluded that I’m engaged in a process of studying the intersection of social justice and healthcare anthropology. The current medical, social and cultural context is very impacted by political influences working on changing population characteristics. These exert a large, and under-addressed influence on policy development.

If our system is being transformed in ways that have negative consequences, we need to understand what that might mean for those who are affected so that they can become more informed and can advocate for more participation in personal choices and public processes. The information gathered will be shared with respondents, advocates, public officials using a variety of push techniques. Above all I want it to be accessible and to help us push toward asking the right questions, allocating the right decision resources.

The emerging patterns reflect enough data to support inquiry in several areas:

Who are the people affected by this problem?

What are their characteristics?

What are the characteristics of the context in which this problem is occurring?

What role do various parts of the system (government, medical professionals, insurers, law enforcement, families, community) serve in contributing to the overall observable problem?

How should this information inform the decisions we make to manage our systems?

National Pain Report: Final question—it feels to me in reading the conversations that our stories inspire that there are so many things that need to happen–more patient centered care—more access to mental health services–affordability—It feels to me like for the first time in a long time, federal policy makers are beginning to realize “Houston We Have a Problem.” How can we create more momentum around that?

Dr. Terri Lewis: “The large problem of social justice research in this area is confirming the personal voice. We’ve all been trained to shield our privacy which means we have lots of layers of profoundly ‘ableist’ designs that get in the way of figuring out what we are dealing with. We have to ask ourselves who is affected? How? Are there harms and what kind of harms? What are the systemic barriers that are getting in the way of choice-making and control of personal resources? What works and what doesn’t work? What other actions influence outcomes of decisions made within multiple political processes? How can we use this information to inform public policy decisions while breaking down faulty beliefs? Person centered policy requires us to ask these questions and design systems which continuously assert the rights of full participation by persons who are most affected by the outcomes.

Importantly, how does the individual with limited resources influences processes in their own communities using the tools at their disposal? They can do this with their voices and by working with others who share their needs and concerns. They have to be informed, they need to understand that they can make a difference by speaking out and by giving notice that they expect to participate and to be accounted for.

I’m really excited by the people who have responded to this tool. They are frustrated, brave, and have just had enough. They seem to fully understand that their future and the future of their children are in serious trouble. This is moving them to action. And we need to magnify their voices.

I’m in the same boat. It has moved me to this course of action. So I intend to keep paddling. The alternative is to do nothing, and that makes no sense to me.”

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