Dr. Edward Machtinger, director of the Women and HIV Program, front row, center and clinic staff
To the casual observer, the offices of the Women and HIV Program at the University of California San Francisco look like any other primary care clinic. There’s a waiting room with vinyl-covered chairs for the clinic’s patients. Staff check in patients from a non-descript desk ringed with a bank of computers. A video screen promotes the clinic’s services.
But as you make your way further into a second waiting area, you might meet Pepper, one of the clinic’s volunteer therapy dogs, a black and white border collie mix angling for a petting or food from a patient. Or you might see a patient sitting in a chair with her eyes closed and her head bowed forward as a massage therapist kneads tightness out of her shoulders. Or further in, you’ll see patients and providers at a table mingling over breakfast before appointments begin.
The dogs, the massage therapist, the breakfast area and even a more private seating area away from others are intentional. It’s all part of a plan to provide the clinic’s 200 patients with trauma-informed care based on the science of adverse childhood experiences. It goes beyond treating an HIV diagnosis to recognizing that healing also includes helping patients dealing with childhood and current trauma.
In its previous incarnation, the waiting room could best be described as chaotic, said Dr. Edward Machtinger, the clinic’s medical director.
“We had patients who would come in high and they’d be reactive. The frontline staff would be reactive in response. They felt attacked and unsafe physically and acted accordingly,” he says.
On the other hand, the clinic’s healthcare providers had a different take on the clinic’s energy. “We thought we were thriving on chaos and that’s what it meant to be on the frontlines. It was only much later that we realized that the chaos was a reflection of our patients’ trauma and our own trauma as providers,” says Machtinger who has served as director of the clinic since 2004.
It was the murder of a beloved patient in 2010 that was the major turning point for the clinic. The death devastated the staff. It propelled them to a long exploration into what it takes to heal people with profound histories of trauma.
“It really woke us up,” says Machtinger. “It made us take a deeper look at what was actually happening in the lives of our patients.”
The Women and HIV program was well regarded as a model of care for treating HIV patients. It had developed and implemented practices that reduced the viral load of HIV in the majority of its patients to undetectable levels.
Although the clinic did an excellent job of controlling HIV, “way too many of our patients were dying,” Machtinger says.
But an analysis showed that they weren’t dying from HIV. They were dying from a lifetime history of trauma.
“The vast majority of deaths were related to trauma – either directly through murders or indirectly through substance abuse, overdose, depression and suicide,” he says.
The staff was clearly missing something. A closer look at the lives of their patients revealed that 40 percent were using hard drugs – including heroin, methamphetamine and crack cocaine — says Machtinger. Many were experiencing violence in their relationships. Half of them suffered clinical depression, and the majority had isolated themselves due to deep shame associated with having HIV.
This led the clinic to do a more intentional exploration of implementing practices and policies based on the science of adverse childhood experiences (ACEs). ACEs science explores the lifetime toll on physical, emotional, social and economic health linked to childhood experiences of everything from physical or sexual abuse to living with a mentally ill parent or witnessing violence outside the home.
ACEs comes from the CDC-Kaiser Permanente Adverse Childhood Experiences Study (ACE Study), groundbreaking research that looked at how 10 types of childhood trauma affect long-term health. The types of trauma include: physical, emotional and sexual abuse; physical and emotional neglect; living with a family member who’s addicted to alcohol or other substances, or who’s depressed or has other mental illnesses; experiencing parental divorce or separation; having a family member who’s incarcerated, and witnessing a mother being abused.
Subsequent ACE surveys include racism, bullying, witnessing violence outside the home, losing a parent to deportation, living in an unsafe neighborhood, and involvement with the foster care system. Other types of childhood adversity can also include being homeless, living in a war zone, being an immigrant, moving many times, witnessing a sibling being abused, witnessing a father or other caregiver or extended family member being abused, involvement with the criminal justice system and attending a school that enforces a zero-tolerance discipline policy.
The ACE Study is one of five parts of the ACEs science framework, which also includes research on how toxic stress from ACEs damage children’s developing brains; how toxic stress from ACEs affects health; and how it can affect our genes and be passed from one generation to another (epigenetics); and resilience research, which shows the brain has plasticity and the body wants to heal. Resilience research focuses on what happens when individuals, organizations and systems integrate trauma-informed and resilience-building practices, for example in education and in the family court system.
Among the first things Machtinger did was hold training sessions about trauma that Dr. Allison Briscoe-Smith, a trauma specialist, psychologist and professor at the Berkeley-based Wright Institute, did for the entire staff. The first training was about trauma, post-traumatic stress disorder and common reactions to trauma. She used a metaphor to describe a patient who had been triggered, and who might be screaming at a staff member as a “horse without a rider,” recalls Machtinger. When you see someone who is in fight, flight or fright mode, attendees were counseled, recognize that the way the patient is interacting with you is not personal; it’s just that their rider has come off their horse.
Intriguingly, one approach to dealing with a patient in crisis that was offered to staff in that first training was based on a unique customer service model used by the online shoe retailer Zappos, says Machtinger: “The person on the other end of the line will always validate the problem, give you support and will attempt to solve that problem collaboratively.”
For that approach to work, Machtinger says, the person solving the problem has to have the power to solve it. So, the clinic leadership were told that for frontline staff to be able to defuse an escalating encounter with a patient, for example, the leaders had to give them that power.
“They have to be able to change an appointment, or walk in the back to get [a patient] seen or get the person who could solve the problem,” says Machtinger.
At the beginning of the process of switching to trauma-informed practices, Machtinger says, the frontline staff didn’t feel as if the providers and leadership listened to their complaints. “So, we made a much more conscious effort to meet with them every afternoon for a 10-minute huddle,” says Machtinger. The idea was for the nurse manager to check in with the nurses and frontline staff to see what happened that day. The nurse manager and staff would then discuss ways to problem-solve to help them decompress from any stressful interactions.
Machtinger and his colleagues also knew that the clinic’s patients had to have a central voice in how their care was delivered. The clinicians posed questions to patients through focus groups. Their responses sometimes pushed the clinic’s health care providers out of their comfort zones.
For example, providers wondered what was the best way to ask patients about substance use without stigmatizing them. “They said ‘We don't want you to ask us about our substance use,’” recalls Machtinger. “That was hard to hear. We really felt like we needed to ask about substance use, because in many circumstances it was obviously killing the person.”
But, says Machtinger, further discussion with patients revealed that they didn’t mind being asked about it. “They just wanted to be asked about it in a conversational way,” he says, “without judgment by a provider they trusted, not while they were being checked in.”
The patient focus groups morphed into monthly gatherings the staff call “stakeholder” meetings. As it turned out, those meetings also fulfill the needs of other staff who had felt slighted by Machtinger. He points out that while researching what to introduce into the clinic’s offerings to make it trauma-informed, he didn’t handle a situation very well.
“With my boyish enthusiasm, I announced to the staff that we were going to collaborate with San Francisco General Hospital’s Trauma Recovery Center,
so our patients could have trauma therapists,” he recalls. The social work staff and case managers, he says, felt they had been doing trauma therapy for years, they just didn’t call it this, and it wasn’t organized into a system.
"They were deeply offended,” he says, “I should have said we were expanding trauma therapy.”
As Machtinger contemplated a number of new services that would be offered to patients related to trauma, he also hired Katy Davis, a trauma therapist to manage the implementation of the clinic’s trauma-informed practices.
All of the staff wanted to be involved in decision-making around how the new trauma-informed services were to be offered, explains Machtinger. Besides what happened in the clinic, these services include a leadership and empowerment project led by the Oakland-based advocacy group, the Positive Women’s Network U.S.A.; support groups; and existing programs, such as the Medea Project, pioneered by Rhodessa Jones, which began as a theater project for incarcerated women who write about their lives and perform in public. It now also serves patients at the Women’s HIV Program to aid them in overcoming feelings of shame about being HIV positive.
Machtinger says the changes in his patients who participated in the Medea Project that first year in 2009 were profound.
“It was the first experience that showed me that people can heal from even the most terrible, dramatic wounds of trauma and go from being a crack-addicted homeless mother who lost custody of her kids to getting new teeth, to stopping drugs, to regaining custody of her children,” he says.
To give every group working at the clinic and the patients a chance to participate in the stakeholder meetings, one doctor, nurse, social worker, medical assistant, case manager and four patients meet monthly. The patients apply for paid, six-month terms. And, Machtinger notes, they intentionally select patients who have greater needs.
“We pick patients who are struggling with substances and who are really in the midst of active PTSD, or who are missing appointments, so we can better understand from them what they need,” he says.
There’s good reason to select those patients, says Machtinger. “They’re the people who really need services tailored to their needs, because they’re the patients most at risk of dying.”
Machtinger says that they were surprised to find how seriously these patients took their role: “They would show up on time, dressed really well and they participated in these meetings.”
In his 17 years working at the clinic, Machtinger says, he hasn’t seen anything like it.
“These groups have been the first time where I’ve been in a room that’s bustling with energy, ideas and interactions that have patients and every member of the staff collaborating together to provide the best possible care,” he says. “And how radical that feels in our state-of-the-art HIV clinic just shows how disconnected we’ve been from having patients’ voices guide the care in our clinic.”
Katy Davis, the trauma therapist who facilitates the stakeholder meetings, says the meetings indeed are a forum for the staff and patients to hash out their differences. A good example was disagreement over the height of the front desk. Patients wanted it to be lower, so it was more open and welcoming. Frontline staff wanted to maintain the height. It made them feel safer, says Davis.
“We work very hard so that no group's perspective is privileged over another,” says Davis. “So, even if a totally open desk might seem like the most welcoming and trauma-informed design for patients, it won't work and isn't truly trauma-informed if the front desk staff doesn't feel safe.”
The ACE Study found that the higher someone’s ACE score – the more types of childhood adversity a person experienced – the higher their risk of chronic disease, mental illness, violence, being a victim of violence and a number of other consequences. The study found that most people (64%) have at least one ACE; 12% of the population has an ACE score of 4 or higher. Having an ACE score of 4 nearly doubles the risk of heart disease and cancer. It increases the likelihood of becoming an alcoholic by 700 percent and the risk of attempted suicide by 1200 percent. (For more information, go to ACEs Science 101. To calculate your ACE and resilience scores, go to: Got Your ACE Score?)
The patients learn about their own ACEs in a couple of ways. Of the approximately 200 women the clinic serves, 104 thus far have elected to be part of a study of trauma, which includes them answering the 10 questions from the original ACE Study, the 14-item Trauma History Screen test and two additional questions about current trauma – whether they’ve been coerced to have sex or have been abused, threatened or a victim of violence in the last month.
The study is ongoing. Patients are only asked the ACEs questions during the first interview. They’re about to begin their third round of interviewing patients. The final round of questions will be asked some time in 2019. In the second through fourth round of questioning, patients are asked to respond to the Trauma History Screen questions based on their experiences since they were last interviewed. At each interview they’re also asked about current trauma.
“Because the interviews could be a little heavy at times – with all of the questions about trauma, depression, PTSD – at the end of each interview we asked participants whether they wanted to check in with one of the clinic social workers before leaving,” notes Yvette Cuca, a researcher who interviewed patients for the study.
The results of a separate study of the trauma history of the providers and staff will be completed this spring.
In October 2017, with a grant from the federal Substance Abuse and Mental Health Administration, the clinic brought in psychiatric registered nurse, Rosalind De Lisser, whose expertise is in medication-assisted treatment for substance use, severe mental illness and trauma. She’s the other way that patients learn about how their ACEs have affected their lives, and continue to impact their reactions on a daily basis.
De Lisser sits in on patient visits -- a necessity, explains Machtinger, especially for patients who come in high on drugs, are in pain and wanting opioids, or are at high risk of death because they’re not taking HIV medication. He has experienced first-hand De Lisser’s skill at turning a patient visit from one where he would typically be overwhelmed to a productive meeting.
On a recent visit, for example, Machtinger told a patient he would continue to prescribe pain medication, but she started yelling at him demanding to know why he wouldn’t deal with her pain.
“It really started escalating,” Machtinger says. “Roz said to the patient ‘Whoa! Stop, look what you’re doing. You’re totally overwhelming Eddy for no reason. You’re pushing him away, when you just got what you need. And you’re going to undermine his ability to take care of you, because of the way you’re acting right now.’”
“This is someone who has had adverse childhood experiences and cumulative trauma over her entire lifespan,” explains De Lisser, adding that the patient expresses it in her hypervigilance and combativeness.
“She was so stuck on thinking that he’s trying to take something away from me, that she literally couldn’t hear,” says De Lisser. De Lisser says she told the woman to take a deep breath and told her that she was being mean to Eddy.
“I showed her how her hypervigilance was directly impacting her access to care,” says De Lisser. “And then she said, ‘Sorry, that’s not what I meant.’ And Eddy and I both knew, of course that’s not what she meant.”
De Lisser has also been working with the patient one-on-one to educate her about her reactions. “We talk about her triggers: When do I need to react to it and when is it coming from the past and I just need to take a deep breath?”
De Lisser says that one way she’s able to make inroads to patients who are hesitant about treatment or therapy, but have experienced severe trauma, is by offering them tips and medication to help them sleep. Nightmares and interrupted sleep, she said, are common.
“I’ve had people say to me, ‘I haven’t slept in years.’” To get buy-in from patients, she says, “My carrot is: Imagine if you could start sleeping well.”
Making that kind of connection between trauma and how it manifests can be revelatory for the clinic’s patients. “As soon as you say ‘When we as human beings experience trauma, this is how our mind, our body and our spirit react to it, so what you’re feeling is your personal response to trauma,’ it’s like a light goes on and the person goes, ‘Oh! And there are other people like me?’” That understanding, explains DeLesser, helps lift the burden of self-blame.
Machtinger says that the process of convincing patients who are resistant to treatment to accept it takes time. The bottom line in getting there is not passing judgment even when patients come in high. “My first and favorite question to ask a patient who comes in high, who trusts me enough to reveal that,” he says, is: “Tell me in what ways crack cocaine helps you.’”
They may tell him, he says, that they’d be stuck in bed otherwise or they suffer from social phobia.
“I like to stop there. I don’t tell them to stop. Then they feel that they have space to feel comfortable, to think I don’t have an agenda to take away something that is necessary.”
And, he says, it paves the way for continuing the conversation.
As for the health care providers, Machtinger realized some years back that because so many of their patients suffer from continuing life trauma and are at greater risk of dying, the clinic’s health care providers also feel burdened by making decisions in isolation. He believes that health care providers who are drawn to working with highly-traumatized patients often themselves have significant histories of trauma So, he began holding weekly pre-clinic interdisciplinary meetings that include providers and staff.
“Many providers are terrified that their patients are going to die and they’re not going to be able to do anything about it. It's the secretary that feels that way. It’s the administrative staff, too. By having this meeting, it provides staff space to bring up issues about patients that they’re most concerned about, so people on the team can own that together and can conclude ‘you’re doing everything possible, that you’re not missing something,’” says Machtinger. Or someone on the team with different expertise will offer suggestions. “Addressing that isolation, creating community, I think is the most important intervention for patients who are in the midst of impacts of lifelong trauma and I think it is crucial for providers who are taking care of them.”
Machtinger is well aware that Women’s HIV Program’s move to a trauma-informed primary care practice is a work in progress.
“The amazing opportunity we’re afforded right now is to develop the best trauma-informed primary care clinic we can think of, because we have a small patient population, and we’re lucky to get a few key grants,” he says.
“We’re really aspiring to create a clinic that’s as responsive, as healing in the deepest most possible way for what is driving the illness that the women in our program are experiencing,” he continues. “What we’re seeing incrementally is that it’s working. We still lose people through addiction and suicide. We still lose people through preventable illnesses, but we have just as many if not more stories of people who are healing, and who are coping safely in more effective ways, because of the interventions that we never have had before.”