The final panel was charged with thinking about what could be. It presented three perspectives ranging from the direct patient experience of systems of care and outreach to the design of behavioral health systems at the state and city levels. It included people who represented different facets of the problem and who have crossed multiple boundaries themselves.
OUTREACH AND CONNECTION
Marcus Lilly is an outreach worker for Concerted Care Group (CCG) who educates the community about the services and goals of CCG. These services include a comprehensive approach to substance abuse treatment and mental health services, with the goal of treating a person’s entire life and not just a person’s addiction. CCG seeks to link potential clients to comprehensive substance abuse treatment and mental health services. As an outreach worker, Lilly deals with people on a day-to-day, person-to-person basis.
In Baltimore, a city that has been called the U.S. heroin capital, Lilly routinely encounters individuals who are on the verge of despair and despondence. Many people in the community suffer from mental illnesses, and suicide is highly associated with substance abuse issues, psychological disorders, and mood disorders, he noted. In addition, drug abuse can often bring about symptoms of mental illness, and mental illness can lead to drug abuse as individuals self-medicate.
One of the biggest roadblocks to improving suicide prevention, he said, is raising awareness that services exist and making clients understand that they need these services. Sometimes his clients laugh at him. “When you’re going through withdrawal, you’re poor, you’re unsafe in your own community, sometimes it’s hard to see beyond those issues and realize that you need treatment.” People who have been helped can then go on to become
advocates for these programs in an “each one teach one” model. “Someone who has been directly impacted by a mental health illness, or a substance abuse issue, or has had suicidal thoughts in the past, is in a better position to reach more people that may be suffering from those same illnesses.”
He works from experience, having had suicidal thoughts himself when he was young. “I felt like my life wasn’t worth living at one point in time. And, at the same time, I didn’t want any treatment. I didn’t know I needed treatment, and I didn’t have any access to services in my community. I was in my own bubble.”
Lilly noted that many people who died by suicide had already reached out to health care providers. Providers therefore need to make suicide prevention a medical priority by providing better awareness and treatment for people who are at risk of suicide, he said. Treatment facilities and medical facilities also could help each other with training, information, and identification.
For many such populations, not many treatment facilities are available. Partnerships between health care providers, mental health services providers, and community-based, self-help groups could increase the availability of suicide prevention services and provide for long-term comprehensive treatment. Also, increased investments in the quality, expansion, and advertisement of these mental health services is needed, he said. Educating church leaders, community leaders, and others in the community about people who are at risk of suicide would help them understand the issues better on a day-to-day basis, including the treatments that are available.
Those at risk of suicide need to believe they have the ability and power to organize and execute plans that would produce positive results in their lives. Creating self-efficacy “is the smallest thing we can do as individuals. Especially as an outreach worker, I try to build on the assets of the people that I encounter.”
Lilly also promoted a civic engagement concept that he calls public sociology. This would connect academic universities with everyday citizens to empower members of the community to become co-creators and co-agents of change. Together, researchers, service providers, and community members could “sit around the table and cocreate solutions that will improve suicide prevention.” This would help create unity among health care providers, mental health services, and people in the community, he said. It also would empower people in communities to be more proactive in their own treatment processes.
THE DIVERSITY OF AVAILABLE INTERVENTIONS
Julie Goldstein Grumet, director of health and behavioral health initiatives at the Suicide Prevention Resource Center and director of the
Zero Suicide Institute at the Education Development Center, focuses on embedding evidence-based suicide care practices into health care systems. Many resources are now available for health care systems and providers to use that are effective, comprehensive, and directly target people at risk for suicide. But a lack of awareness of these resources is one of the biggest roadblocks to suicide prevention, Grumet said. “Safety planning, screening, treatments like dialectical behavior therapy, cognitive therapy for suicide prevention, follow-up during times of care transitions—despite the fact that the evidence exists to use these, they are vastly underutilized in health care systems.” As just one example, she said that she is often astonished that her center does not receive more phone calls from primary care practices. “We know depression is one of the leading issues that people come into their primary care physician to talk about. Yet, frankly, they rarely reach out and say, ‘What do you have for me? And please partner with us.’”
Training in suicide prevention is a serious problem, she said. Health care providers are not required to learn about suicide-specific treatment practices in graduate school, and continuing education requirements exist in only a few states. Grumet said:
Yet, we send our loved ones to get care by providers who we expect are going to be well trained and competent and confident—and the workforce isn’t. We have many surveys to attest to the fact that the workforce does not feel comfortable and confident. We don’t tolerate that in medical care. We would never send our loved ones to a surgeon who said, “I don’t really have any training, but I’m going to try my best.” But we do that in behavioral health every day. We send our loved ones to providers who we think are well trained, and they are doing their best, and they absolutely are incredibly caring individuals. But they don’t have the skills. They haven’t been trained in suicide-specific practices.
Grumet said that she would love to see the Zero Suicide approach adopted throughout health care. “We believe it really is transformative in the health care systems that have adopted it.” In the meantime, the National Action Alliance for Suicide Prevention has released recommended standard care practices that health care providers can adopt. National organizations should endorse and distribute these standard care practices, said Grumet, and health care providers should be familiar with them.
Health care systems could be better partners in reducing suicide by critically examining and sharing their data on rates of suicide by those for whom they care. Today, health care systems are not required to share these data, so no benchmarks exist. Such sharing may happen informally, but many systems still do not know how well or poorly they are doing. Making these data publicly available would enable systems to improve.
That has been one of the advances fostered by the Zero Suicide movement, she added—that health care systems are starting to share their outcomes. “But we’re at the beginning of that, and we can’t take 15 or 20 years to get farther down the road.”
Another roadblock is reaching individuals who are not seen in health care. More than half of the people who die by suicide do not have a mental health diagnosis, according to data from the Centers for Disease Control and Prevention. The data also reveal that those who die by suicide, such as middle-aged men, share many characteristics even without a known mental health diagnosis. These shared characteristics provide an opportunity to involve new and nontraditional partners, Grumet said. “We have to be much more creative in thinking about paraprofessionals and peers and other types of community-based efforts.”
People also need to be reached in culturally appropriate ways, Grumet said. If they are not going to engage with a health care system, then ways need to be found to reach them where they are more comfortable seeking care.
Despite the challenges, “hope prevails,” Grumet observed. With the recent suicide deaths of Anthony Bourdain and Kate Spade, the media ran fewer stories that focused on their traumatic lives or concluded that “they needed to die by suicide.” Many more stories focused on where to find help and on how many people have thoughts of suicide but do not go on to kill themselves and live meaningful, quality lives. Grumet said:
The media is beginning to get it right. This way of communicating about suicide offers hope that those who are at risk for suicide can begin to feel less judged by others, less ashamed, [that they can] come forward with their stories about their suicide experiences or good experiences that they have had.
Such stories help empower the public to know what to do and where to look for help. They break down barriers that can help prevent suicide.
Investments are needed both upstream and downstream from suicide prevention, she observed, which has the effect of linking public health and mental health. Downstream efforts are things like Zero Suicide, the use of robust electronic health records that can capture the work that health care systems are doing, well-trained staff, 24/7 crisis services, and psychiatric emergency rooms, which can reduce the burden on emergency rooms and provide better and more timely care to people with mental health needs. Upstream efforts recognize and address the risk factors that contribute to suicide, including economic despair, lack of connectedness, and exposure to trauma. “We need to work much more closely with the nonprofits, the national organizations, and the organizations that work to address these
types of issues,” Grumet said. “We work in silos frequently, and we can’t expect that things are going to change if we’re in silos.”
Technology will help. Apps for safety planning or to push out messages of thought and hope and caring for loved ones make a difference. Predictive analytics can target those who might be at greater risk. Social media can lead people to resources and perhaps make it possible to identify people who are at risk of suicide. “There’s a whole field still available to us with regard to technology that I imagine will continue to emerge.”
Grumet closed with a short-term recommendation and long-term recommendation. The short-term recommendation is that all organizations, from the local level to the state level to the national level, need to know who is dying by suicide and implement interventions to target the highest risk populations. “In the short term, I hope that people will use data and then share their data.”
Her long-term recommendation was that organizations collaborate across the different types of challenges in society, whether opioid misuse, domestic violence, or childhood trauma. With the grave public health issues facing Americans today, collaboration will yield faster and greater results.
PREVENTION AT ALL LEVELS
The best way to help people with serious mental illness, said Arthur Evans, chief executive officer of the American Psychological Association and previously the commissioner in Philadelphia for the Department of Behavioral Health and Intellectual Disability Services, is to begin with the entire population. Many people with serious mental illness who are also suicidal are not in position to get help, in part because one of the risk factors for suicide is isolation. If interventions are considered as primarily clinical, without also considering the support services that are needed, “we are missing an opportunity.”
The system needs to be aligned with the research, he said, and today it is not. For example, most systems deal with suicidality as a binary issue, but thinking in this way is inadequate. Suicidality exists along a continuum. That is why good transitions are critical, which is a major issue for most systems of care.
Evans often talks about treatment as a black box. “When people have a diagnosis, or need help, they have to come to us, and to our black boxes, to get the help.” People are then released back into their communities with little or no help, care, or support. “There are so many problems with that paradigm,” Evans said. One of the biggest is that the people who need help often do not come to treatment programs. Therefore, “if all of our efforts are directed at treatment, we are going to miss a lot of people.”
Health care systems and service providers need to think outside the box to what is happening to people in their communities, he said. Evans thinks about contexts in terms of three concentric circles. The first includes the professionals, including mental health professionals, who see people who present for treatment and the treatment approaches they use. These people often are not trained to deal with patients who have suicidal thoughts. Nor are many of them trained to deal with substance abuse, which significantly increases the risk of suicide. “There are a whole host of things that we can do in that innermost circle to increase our ability to effectively deal with those people who have suicidal ideation,” Evans said. In addition, he pointed out that there is “a big gap between what most treatment programs are doing and what the science says around what works.” Substantial investments of resources will be needed to implement evidence-based treatment programs, including provider training. “We are not making the kind of investment that we need if we really want practice change to happen.”
The second circle includes the institutions that serve people at risk of suicide who have serious mental illness. Many people with serious mental illness are involved in the criminal justice system, the child welfare system, the health care system, or other societal institutions. Strategies exist to help those systems identify and address mental health issues, but these strategies are not always used. In the criminal justice system, for example, people with serious mental illness are at high risk for suicide. The people in these institutions need training, as do the people in such organizations as churches, synagogues, and mosques. “That’s often where these issues start to emerge. Those are the people who are going to provide help and support.”
The third circle is the broader community. Clinical care and public health are not mutually exclusive, Evans said. “A good clinical system is the foundation of a good public health approach.” At the community level, several things need to be done. One is to reduce the stigma associated with mental health challenges, as other presenters at the workshop noted. “We can build the best treatment programs in the world, have the best outcomes in the world, but if people don’t go to them because they are embarrassed, or they are ashamed, or they don’t know how to get there, it doesn’t matter.” This generally requires focusing on things outside health care as well as inside. As an example, he cited community participatory art projects to try to change the narrative—“using storytelling and getting people who have lived the experience to talk about their stories.” He has sent outreach workers to community health fairs to perform mental health screenings right next to the person taking blood pressures. “When we first started doing that in Philadelphia, people said, ‘People will never come to a table about mental health and start to talk to you.’ Turns out that people do. In fact, they are glad we are there.” Furthermore, in almost every set-
ting, someone approached the outreach team who was suicidal. “That made me think, what if we were not there?”
THE INFLUENCE OF RESEARCH
In response to a question about the influence of research on his work, Evans said that as an administrator responsible for a system, he relies heavily on research but also understands that people cannot wait for all the research to happen in order to act. For example, evidence exists for what works in particular cultural groups, for people with serious mental illness, and for people demonstrating suicidality. “We have to be able to take all of that and to essentially cook. We have to put things together using our best judgments because we won’t always have the studies for the very specific individuals we’re working with.” In Philadelphia, his department worked with a large immigrant population that did not even have a word for mental health. “We know that there weren’t any studies that were done for this population, and we couldn’t wait for those studies to be done.” At the same time, many things do not translate, and policies are not always implemented effectively. “Even when we know what works, it’s really hard to get those things to work in real-world settings.”
Grumet addressed the difficulty of maintaining fidelity when small programs are scaled up while maintaining enough flexibility to meet the needs of the targeted population. Fidelity often suffers so greatly that programs are abandoned after a few years and new programs are adopted. Research on how to implement programs with fidelity could help address this problem. “Which part of the recipe can you change, and which part needs to be faithful to the model?”
THE LINK TO INCARCERATION
Lilly, responding to a question about the barriers he faced upon coming out of the criminal justice system, said that he was released from prison less than 1 year before the workshop after being incarcerated for 13 years. “My reentry process was very difficult,” he said. His record of being incarcerated and the associated stigma made it hard for him to find a job, housing, educational opportunities, and other resources. What helped him was access to community-based self-help programs as well as to CCG. “That helped connect me to different associations and different institutions within my community, to help support me and help me stay focused on my goals, as well as, of course, being employed. This is a very purposeful feeling.” In helping other people, he has been able to help himself. “Helping them talk through their problems, you gain new perspectives on your own problems.”
CCG has invested in Marcus to become an advocate on issues that have affected him. Similar investments could help many other people, he said, “with employment, education, vocational training, and a sense of fulfillment. . . . That would help other individuals transition a little more successfully.”
Ostrovsky noted that his board was initially opposed to hiring Marcus. They are thoughtful people, he said, but they did not want to have the liability of hiring someone with a history of involvement with the criminal justice system. “They didn’t have the benefit of the data of actually interacting with Marcus and going through a rigorous interview process.” His hiring has not only brought a valuable skill set into the organization but has contributed to the largest revenue growth in this organization’s history. “If Marcus didn’t have that background and ability to empathize with our patient population, we wouldn’t have had that revenue growth.” Employers need to be educated about the immense benefits of hiring people with criminal justice backgrounds, said Ostrovsky. “That’s a barrier that needs overcoming.”
Evans spoke of a similar experience with health care providers in Philadelphia, where hiring people with lived experience led to greater engagement with patients and greater resources for the program. “The economics worked. To me, that’s very strong evidence.” The city of Philadelphia ended up creating a toolkit to facilitate the hiring of peers, including people with lived experience.
CHANGING THE COMMUNITY NARRATIVE
In response to a question about changing the community narrative about suicide prevention, Grumet recommended such actions as going into churches and working with other community groups to reach people where they are most comfortable receiving care. This enables reaching out to people even before they have mental health issues. “We want people to feel connected, because then we know . . . if they’re struggling, whether financially or workwise or relationship-wise.” Community programs also can be replicated rather than invented anew in each community. “Part of the challenge is figuring out the scalability of really effective interventions,” said Grumet. She recommended getting stories like Lilly’s into national publications and broadcasts so people can hear how peers can make a difference, “because otherwise it feels very challenging for systems to know where to begin. We have many best kept secrets that we don’t do a good enough job promoting.”
Evans broadened the conversation to include the social determinants of both health and mental health. He noted that most treatment programs do not deal with social supports, even though many studies show that social
supports are a strong determinant of health status. “Health care accounts for only 10 percent of our health status,” he said, adding:
The mindset shift that we have to make is to understand what those [other] things are and then use our best judgment around how we can affect those things and collect the data to make sure that what we’re doing is actually effective.
He reiterated that one of the biggest challenges for treating people with serious mental illnesses is that they are often isolated and disconnected from people from communities:
Our experience has been that when we help people to make those kinds of connections, it makes a big difference in their clinical outcomes. . . . It’s not all about symptoms. It’s about these broader issues that affect our health.
LINKING SUICIDE PREVENTION TO THE TREATMENT OF MENTAL ILLNESS
Finally, Nadine Kaslow, professor of psychiatry and behavioral sciences at the Emory University School of Medicine, pointed out that the workshop has been about both suicide prevention and serious mental illness. “We need to pull together those worlds much more,” she said. Professionals tend to work in siloes that do not interact with each other much. “But people don’t live in those silos,” said Kaslow. She explained:
Part of my response to the social determinants is that we need to sit at tables where we’re all together to talk about this, because part of that gets to the prevention issue. If childhood maltreatment is one of the biggest risk factors for deaths by suicide in virtually every population and every age and every gender and every race and ethnicity, but we’re not doing anything to prevent that, and then we get this downstream issue, there’s an issue. We all need to work together on this.