Up until that point, clinic staff thought they were doing the best they could and that the challenges patients’ faced outside of the clinic were beyond their ability to influence. “Like so many other programs, we just didn’t think that was in our domain,” says Edward Machtinger, M.D., director of UCSF’s Women’s HIV Program. “We figured we couldn’t relive people’s lives in childhood, couldn’t reduce racism and community violence, and couldn’t control who they picked as partners. I think we thought of all those issues as just the human condition.”
The patient’s gruesome murder prompted them to reconsider. As Machtinger and some 30 people from across the city who’d tried to help her began to dissect what had gone wrong, one of the conclusions was that the clinic needed to do more to address intimate partner violence and the early childhood and lifelong traumas that seemed to draw its patients toward abusive relationships and hold other adaptive but ultimately self-destructive behaviors—including alcoholism and drug use—so firmly in place.
Machtinger and his colleagues began by closely studying every death in the clinic and discovered the majority of women died not of HIV, but of overdoses and suicides, as well as lung and liver disease linked to years of substance abuse. The common denominator seemed to be a long history of trauma, and the program’s research team’s analysis of the national literature on trauma seemed to suggest the same (see box).
The prevalence of trauma in women living with HIV
|Intimate partner violence||55.3%|
|Childhood sexual abuse||39.3%|
|Childhood physical abuse||42.7%|
|Childhood abuse unspecified||58.2%|
|Lifetime sexual abuse||61.1%|
|Lifetime abuse unspecified||71.6%|
|Source: E. L. Machtinger, T. Wilson, J. Haberer et al.,“Psychological Trauma in HIV-Positive Women: A Meta-Analysis,” AIDS and Behavior, Nov. 2012 16(8):2091–100.|
Machtinger and his colleagues found more than half of women with HIV in the U.S. had experienced intimate partner violence, approximately twice the national rate, and 60 percent had experienced sexual abuse at some point in their lives—approximately five times the national rate. Nearly a third suffered from post-traumatic stress disorder (PTSD), six times the national rate.
“It was a huge epiphany for us. It helped explain why our patients were so reactive when we would engage them in simple ways, why so many patients were having a very difficult time with substance abuse despite the availability of what appeared to be high-quality treatment, why so many patients were depressed, and why ultimately so many patients committed suicide or overdosed and died,” Machtinger says. “I’ve [now] come to see HIV—like obesity, diabetes, depression, substance abuse, and the lung and liver disease—as a marker of a high burden of childhood and adult trauma.”
Machtinger and his colleagues used grant funding to convene a group of experts in trauma and HIV from government, academia, and community-based organizations, as well as patients themselves. The group has developed a trauma-informed approach to primary care for women with HIV that includes training for staff and changes to the design of health care settings, as well as new approaches to screening and treatment interventions. It will be piloted at UCSF as part of a demonstration testing whether the model can disrupt the link between recent or life trauma and disease progression, hospitalization, and death.1 Transforming Care asked Machtinger about the approach.
Transforming Care: We understand one of your first goals is to make the clinic more inviting to patients who’ve experienced trauma. How are you going about it?
Machtinger: We want it to feel safe, calm, and empowering. Before we got started, our waiting room was incredibly chaotic and loud. Patients frequently showed up high or late for appointments. They would be inpatient at the front desk or, the opposite, stand there quietly, as if trying to be invisible and our frontline staff—the medical assistants and receptionists—were pretty reactive. They might tell someone who had a history of being incarcerated or being controlled by a partner to “sit down and wait their turn” and they really didn’t understand why patients would react poorly or were behaving the way they did. So a large component of creating a trauma-informed environment has been educating the staff and providers about the impact of trauma on health and behavior. We now have a receptionist walk around the counter and greet the patient and we’re just about to hire a woman living with HIV—a peer—to welcome patients and help them navigate the clinic. We also have a service dog in the waiting room, who has as calming an impact on providers and staff as patients. We’re trying to break down barriers between patients and providers, so we’ve set up a dining area in the conference room where staff and patients can sit together to have a hot breakfast. With just these recently implemented changes, the vibe in clinic now feels more communal, loving, and mutually supportive.
Transforming Care: How do you handle screening?
Machtinger: We have multiple providers ask about intimate partner violence and do it regularly because it can lead to immediate injuries and murders. If someone screens positive, they’re referred to our social worker, who assesses the lethality risk and develops a safety plan. They’re also referred to a therapist who recognizes that patients facing intimate partner violence are likely suffering from PTSD and may have experienced lifelong abuse, which requires more than just supportive therapy. In terms of screening for trauma related to other forms of abuse, our conclusion was that that a discussion of it needs to occur in the context of a long-term relationship. So what we do is screen for the consequences—substance abuse, depression, and PTSD. That’s part of our intake program and at least annually we will repeat it.
Transforming Care: And if you suspect trauma from that, what’s the response?
Machtinger: The interventions we’re developing are based on our observation that trauma ruptures three types of connections. First, connections with others. People who’ve experienced trauma frequently have a very hard time relating to other people and feeling safe around them. Oftentimes this is because the person who was charged with loving them and keeping them safe was the exact person who violated them the most deeply. Second, trauma—especially childhood trauma—also ruptures physiological connections. There is more and more evidence it changes our brains and bodies, changes the way our genes are expressed, and predisposes us to anxiety and different types of adaptive and ultimately unhealthy behaviors like substance abuse. Lastly, trauma profoundly ruptures our connection with our own bodies. Many patients end up very ashamed of them and have really tricky sexual relationships.
Transforming Care: What treatments or interventions will you use?
Machtinger: There’s a variety, some of which we’ll offer in the clinic and others through partnerships with agencies that have specific trauma recovery expertise such as the Trauma Recovery Center at San Francisco General Hospital. There are many evidence-based strategies for ruptured psychological and physiological connections: trauma-specific cognitive behavioral therapy, re-exposure therapy, mindfulness-based stress reduction, and therapies that couple substance abuse treatment with treatment for trauma. There are also medications that can help patients handle intolerable feelings and triggers, and there are treatments like eye movement desensitization and reprocessing, which helps patients identify and re-process traumatic memories. To overcome problems connecting with others, we think the most promising treatments will be peer-based expressive therapy. Ours include the Medea Project, a theater program that was designed to help incarcerated women build a supportive community with women who shared their difficult experiences. Until I saw how effective this program was, I wouldn’t have believed it.
I’ll give you one example. I was talking to a patient the other day about getting into substance abuse treatment. I’d been talking about it with her for a decade and she had been highly resistant. But this time she said yes and when I asked why, she said it was because she had seen Debra driving a car. Debra was a homeless, crack-addicted, middle-aged woman who lots of people in the community knew and thought was a lost cause. Joining the Medea Project helped her come out about her HIV status and begin a process of healing that led to her getting housed, getting off drugs, getting her teeth fixed, gaining weight and dressing beautifully, becoming articulate and proud. This patient saw Debra, the most impossibly traumatized down-and-out-individual you can imagine, looking beautiful and composed and driving around the streets of San Francisco. And she realized if Debra could do this, she could too.
Transforming Care: Other than evidence of impact, what do you think will facilitate the spread of trauma-informed care?
Machtinger: Part of it is acknowledging the reality that hospitals and clinic administrators and primary care doctors, staff, nurse practitioners, and social workers are facing day-to-day. The idea that they can go from chaotic, every-20-minute visits to trauma-informed care practices is often just overwhelming because they don’t feel like they have support and resources to make that change. Partnerships can help a lot. For this new effort, we’ve pursued foundation and federal funding as a collaborative with other agencies, and we decide as a group who is best able to provide the services for our patients.
In the meantime, providers can begin by educating themselves about trauma’s impact. With that, so many mysteries are solved: why a patient has not been able to overcome their obesity for a decade, why a patient is still addicted to alcohol despite what would seem to be good treatment programs, and why a patient is still depressed despite supposedly effective antidepressants. It can change an experience of almost hopelessness, powerlessness, and mystery into one of compassion. And that small change can have an enormous impact on the well-being of that provider and the quality of that relationship and the healing and openness that you can achieve with a patient.
1 E. L. Machtinger, Y. P. Cuca, N. Khanna et al., “From Treatment to Healing: The Promise of Trauma-Informed Primary Care,” Women’s Health Issues, May/June 2015 25(3):193–7.