Shannon Phillips, MD: Good afternoon. This is Shannon Phillips, Intermountain's Chief Patient Experience Officer. I have the opportunity today to spend time with Dr. Todd Allen, who's the Medical Director of Intermountain's Healthcare and Delivery Institute, and with Jorden Saxton Hackney, who is a Patient and Family Advocate, that we have the privilege of spending time with today. Our topic is the opioid epidemic, which is crushing the United States, and in fact, in Utah, 24 people are dying each month from the epidemic. Dr. Allen is one of our leaders in this space. Todd, I'd ask you maybe to share what got Intermountain's attention and what are we doing to be part of the community and address the epidemic?
Todd Allen, MD: Yeah, thanks Shannon, and thanks, good to be here with you, Jorden, and both of you, talking about this really important topic. Pain Management has always been so central to our work in healthcare, and taking care of patients. It represents suffering, pain represents suffering on behalf of patients. I don't know that there's anything that moves us more as human beings really, than to try and alleviate suffering. There are lots of good tools out there to do it, and the tools have advanced over the years. The challenge is, some of these tools have real downsides. The downsides, boy downsides undersells it a little bit, some of these things cause people to die. I think we under-appreciated that for a long time because we sought to rescue and we sought to alleviate suffering.
Once we finally understood, through the science, the magnitude of the problem, I think it was a shock. It was to me, when I realized this. I was taught in my residency you had to take care of pain. You had to get pain down. You had to get pain to zero, to no pain, and that was the essence of living life. No pain, and therefore we use these medications to get there.
When I saw the effects of these medications, it was a slap in the face, and when I saw that six people a week, a week in Utah, were dying from this, we had to do something. I think that was the reaction of Intermountain Healthcare, from the very top levels of our leadership. We've got to figure out something. Now that something is complex, because we didn't walk into this problem overnight, didn't happen overnight. It's caused by a whole host of things, including challenges in our society that we, as a hospital system, fundamentally don't reach to and touch, so fixing it, trying to fix it, trying to make it better requires really hard solutions. Glad to say we're working on it through a lot of ways, and maybe making some progress.
Shannon Phillips, MD: Just to reflect that zero pain piece, I reflect as a doctor on did we have unrealistic expectations of ourselves? Did we create part of this problem, and obviously, I think you said, it's multi-factorial, but at the end of the day many of these drugs are prescribed right, and what are we doing to bring attention to that in our providers, and contribute to, if you will, reducing healthcare's responsibility in this epidemic?
Todd Allen, MD: Yeah, well first of all I'll say we did have unrealistic expectations. I bought into the idea that it could be a pain free life. I think the public bought into that a little bit. I don't want to get into the blame of that particular thing, but it certainly happened, and again, like I said, kind of had consequences, so what we're doing, once we sort of got this sense at least from the provider side, number one, we thought we had to make as many providers as possible, from as many specialties as possible, aware of the issue, aware of alternatives, and help them have actionable data that could fundamentally change their practice, number one.
Number two would be to help give them best practice guidelines around the use of these medications. Nobody at Intermountain Healthcare is going to say for opioids, "We're walking away from opioids. We're turning it off right now." There's people with cancer out there. There's people with chronic pain out there. Properly managed we can do this right, but we have to give clinicians guidelines, help, assistance on how to use these powerful medications in the right way, and that was not done in residency. The science isn't really there, so as a learning health organization we really kind of almost have to develop that ourselves, number two.
Number three, partner with all parts of the community, all parts of the State, people like Jorden, families like Jorden's family to get out there, and be part of a solution. It involves work with our schools. It involves work with the media. It involves work with the justice system. It involves with state agencies, with community based services, things that aren't naturally in our wheel house as a health organization, but that's part of how we're going to have to do to get it, what we're going to have to do to get it done.
Shannon Phillips, MD: Todd, there are so many alternatives to medication, and you mentioned interfacing with the community, which is so critically important. What are some of those things, as you've talked to providers, that we maybe didn't get in medical school? We didn't figure this out, it's like, "Hey, yes, there's medicine and what else?"
Todd Allen, MD: Yeah, so just on the medicine side of it first, the thing I didn't learn in medical school was how to talk to patients and families about the alternatives. We learned the pharmacology, and then they said, "Go out and do this." When I talk to my clinicians, the thing they most wanted was a tool, an aid, something that they could give to patients of family members to say there are alternatives, just something to open the door for the conversation. We fundamentally didn't know how to do that. One of the tools we first built was that conversation starter.
Now what are those alternatives? Obviously there's non-opioid pain medications, number one. Number two, we're working really hard on, in Intermountain Healthcare, our mission to help people live the healthiest lives possible, on places, alternatives that we haven't been involved with before, mindfulness, meditation, yoga. I think we're doing a pretty good job. We're not there yet. Most organizations aren't there yet, and building up pain clinics who can deal with these types of modalities, massage, to add to that. We're working on disposal. We're working on, even in the worst cases, providing Naloxone for patients who need it when they could or might get into trouble.
Shannon Phillips, MD: To save a life.
Todd Allen, MD: Yeah.
Shannon Phillips, MD: I think we know in healthcare that a lot of the way we make an impression on our caregivers is by capturing their minds with data, can't get past six people a week, right? That's pretty awful, and we want to catch their hearts as well, so have we used stories well enough in this yet?
Todd Allen, MD: I don't think we have. My first experience with stories was really with Jorden and with the film that she produced called, Dying in Vein. I think it was a powerful, powerful vehicle. It taught me, reminded me again of how stories, properly supported by relationships, can be an immense tool for change. We in healthcare, we tend to think of ourselves as scientists and so, and statisticians, so we tend to use a lot of numbers, and I certainly started there as well, increasingly using these important moments to help drive the imperative for change. Improvement, that's what it's about.
Shannon Phillips, MD: Right, so nice segway, thank you.
Todd Allen, MD: You're welcome.
Shannon Phillips, MD: We're really privileged to have Jorden here today.
Jorden Saxton Hackney: Thanks for having me.
Shannon Phillips, MD: You bet. Your brother, Chase, died.
Jorden Saxton Hackney: That's right.
Shannon Phillips, MD: In this opioid epidemic.
Jorden Saxton Hackney: Yeah.
Shannon Phillips, MD: Why don't you share a little bit about that story if you wouldn't mind.
Jorden Saxton Hackney: Sure, where to begin. Chase died in 2014 of a heroin overdose. He had been using heroin for four years, to my knowledge. Started in 2010, when he was a senior in high school. He started experimenting with prescription opioids at that time, and from my understanding, within a period of four months, so very quickly, he graduated to heroin. Started smoking it initially, that's initially when we found out that he was using heroin. We found multiple, just used tinfoil, pieces of tinfoil with the heroin that had been smoked, tracked along it. From that point, I think it was only a matter of months as well that he then graduated to IV use, so it seemed like within a six to eight month period, from starting with prescription opioids, he had graduated and escalated to using heroin with a needle, so relatively quickly.
Chase had struggled since he was a sophomore in high school with substance use. My parents had sent him to a wilderness therapy program when he was a sophomore. He was abusing cocaine at that point. Then went to a residential therapeutic boarding school, after that, spent about six months there, and came back and did his senior year of high school. For all intents and purposes we thought that he had figured it out and was well. He went to treatment and he came back, and we were in the clear. That wasn't the case. From what I understand, even after he came back, he started experimenting again within a couple of months upon his return.
To me it was clear that there was something that was happening with Chase, that you know, he wasn't getting help with. He was seeking something else, some sort of management for his suffering, and from what I understand, it was emotional suffering. Chase was a sensitive guy. He was super funny, intelligent, kind, but he was also really sensitive, and just as a young boy, in our culture, I don't think he had a lot of outlets for expressing that sensitivity, and felt like he had found something really powerful in his drug experimentation, to sort of alleviate some of that suffering.
From my perspective, it seemed like he struggled with some depression and some social anxiety. He didn't have a lot of friends, but he did have close friends, and he would, you know, sometimes isolate himself, and so even though it wasn't diagnosed, just looking back it seems like there was just some emotional suffering that he was experiencing, that he was medicating with these substances. One of his journal entries that I reviewed after his passing, he expressed just how incredible heroin and opiates were at alleviating that, that he felt like just the most euphoria and peace, that he didn't know how to find elsewhere. We didn't know how to help him find that either.
Shannon Phillips, MD: It sounds like, both in his sophomore year, and again in his senior year you all could see it, so it was happening. Did you all reach out for help? Was the healthcare system or any community system helpful to you all, that you'd say, "Yes, I want people to know about that," or " You know what, you guys let us down. It could have been better."
Jorden Saxton Hackney: That's a great question. Thanks for asking. The treatment system, then and currently now as I see it, is very difficult to navigate for families. There are a lot of different treatment options out there, but it doesn't seem like there's a way for them to sort of be regulated or accredited, and so it's hard to navigate which treatment facilities are good, and effective, and what options are even out there.
Chase got into treatment through a recommendation through our school, but then when he was out of school and he was in college, and we found out that he was using heroin, we only were able to get him into treatment after his first overdose. We only ended up taking him where our insurance covered, and that ended up at the time being McKay-Dee. Chase didn't stay there for very long. I don't think he was, at that point, really ready to engage in treatment. The only really successful time that he had in sobriety during his four years of heroin use was when he actually ended up going out of state. I think that was effective for him because it got him out of his known environment, out away from a lot of his triggers that he had, and he was able to start establishing a sober life, and a healthy life for himself, but I would say that it is challenging to navigate.
I still get a lot of people calling, asking, "What should I do," and it's tough because I still don't have a lot of good answers, I feel like, to give people. "Look to your insurance. Look to see where they will cover," and then there's a whole other population of people who don't necessarily have insurance, and have the funds to get treatment. I don't think there are a lot of good options for people in that situation either, and so it is a big challenge right now, I think.
Shannon Phillips, MD: Sure. Did Chase want help?
Jorden Saxton Hackney: At points, so from what I understand within the treatment realm, and someone with a substance use disorder, there are windows of opportunity, and so there were times, and I saw this with Chase when we would come and we would have an intervention, and we would sit down and everyone would cry. Chase just wasn't ready to hear it, and it was devastating because we really didn't feel like we could do anything because until he was ready to go in and seek treatment, there honestly wasn't a lot we could do. There were points when either Chase would come to us and ask for help, or we would sort of come together, and there were just those windows of opportunity, but it's hard to say what initiated those, unfortunately, but it would have been, I mean hindsight, you know, it's hard, but it would have been really nice for us as a family to have had a conversation about what we wanted to do when those windows of opportunity presented themselves, so we would have been ready.
Shannon Phillips, MD:You were ready to go.
Jorden Saxton Hackney: Yes, and jump in, really maximize those windows.
Shannon Phillips, MD: Yeah, right.
Todd Allen, MD: You know, Shannon, too that's really important for providers to hear. In those moments when the patient gets ready, we have to be ready, the system.
Shannon Phillips, MD: Are we ready to serve them?
Todd Allen, MD: I think, Jorden, it was terrific to hear you say what you said a moment ago, I don't know that we are always ready. When I work in the Emergency Department, folks come in and we sort of line them up for evaluation, and we line them up to see what insurance they have, and sometimes you say they don't have insurance, and sometimes unlike, the truth of it is, in this country today, even in this country today, unlike Diabetes, unlike Hypertension, unlike Heart Disease, unlike anything else, the insurance matters on what treatment we give, and how we allocate that treatment, so we need to be ready when those moments arise. Otherwise, we'll never fulfill our aim.
Jorden Saxton Hackney: We may miss them. I think also too, what's also important, and just for me thinking about with my brother is, also if there's, if they're not in that window of opportunity, where they're ready and they want to access treatment, I think also looking at it in terms of a harm reduction model of saying, "Okay, you're not ready. You may still be using. How can we help you use in the safest way possible," and whether that's a needle exchange, I know this is sort of controversial here in Utah, but keeping someone alive and healthy until that window of opportunity presents itself.
Shannon Phillips, MD:No, that's fair. You and your family made a very bold decision to be very public about this and it's inspiring, frankly.
Jorden Saxton Hackney: Thanks.
Shannon Phillips, MD: To be able to, at his passing, have the strength to call out what happened. What was behind that decision, and all I can do is, as I said, honor that and be grateful because there's somebody you know, there's more than one somebody who read that and said, "Oh, but that could be me. That could be my family," and calls them to action, so where did you find that strength?
Jorden Saxton Hackney: I think you summarized our hope and intention really well in that we wanted to speak out about our experience so that in the hopes of saving a life, of encouraging families to speak out more, to do more if they can, to just increase their awareness to have more conversations about it. I think that we, throughout his addiction, felt incredibly paralyzed by fear, by stigma, by not knowing what and how to help him, and just after he died, I think we really wanted to speak out about that, how we didn't know what to do. There weren't a lot of resources. We didn't have a lot of support, just as a family, and we, a lot of the time, didn't really do a lot to help him. I think that we wished that we would have done more, said more, reached out more, reached out to him more, to each other, to our community, in hopes of helping him and helping others.
Shannon Phillips, MD: Really hard to hear you say, as thoughtful as you are in the efforts that your family put forth, just in this short conversation to hear, to feel you didn't do enough, and I think this is a bit like grabbing at a cloud sometimes, right?
Jorden Saxton Hackney: Yes.
Shannon Phillips, MD: If I could only get my hands on that and take care of it, and it's a lonely place, I think, for a family and so it's really important to think about who you can reach out to. Who do you think is that person, that place, the circumstance that you should be able to reach to, or you want families to know, "Hey you know what? If you're in this situation, go here."
Jorden Saxton Hackney: Yeah, so for me personally, I started attending ALANON support groups. ALANON is sort of the brother or sister to AA, or Alcoholics Anonymous, and it's for family members who have a loved one with an addiction, or some sort of substance use disorder, and so I started going there. I really wanted to be around other people who were in a similar situation, and just to hear what they were doing, and what I could be doing, and really a lot of what I learned there was that, like you were saying, sometimes there's not a lot that you can do, but what you can do is take care of yourself and learn how to communicate with your loved one in a way that is supportive towards their sobriety, so getting away from enabling, and really looking at, "How can I interact with you and still communicate that I'm there, and that I love you and support you, but I support you toward sobriety.” That was really helpful for me.
I also did seek the support of a therapist, individually, in sort of that spirit of taking care of yourself, you know, you can't help somebody else if you're freaking out internally as well. Then, I've partnered recently with USARA, and I've started facilitating another support group. It's a psycho-education and support group for family members, who have a loved one with a substance abuse disorder and it's called, CRAFT, and it again teaches some fundamental skills around taking care of yourself and learning how to communicate with your loved one in a supportive way. I would definitely say those were successful for me, seeking the support of a support group, and getting my own help through just a personal therapist, someone that I could talk to and work the situation out, but also just connecting with other people who were in the same boat. There's something really cathartic about that.
Shannon Phillips, MD: Right, it's pretty powerful.
Jorden Saxton Hackney: Yeah.
Shannon Phillips, MD: You also went the distance to participate in the film, I think that Todd mentioned, Dying in Vein.
Jorden Saxton Hackney: Yeah.
Shannon Phillips, MD: Share a little bit about that, what connected you to it, what void is that filling, maybe for you personally, and probably for the community, I'm confident, so share a little bit.
Jorden Saxton Hackney: Jenny Mackenzie, the Director, contacted our family because one of her daughters when to school with Chase, and was fairly close with him, and when he died, she let her mom know that he had passed, and so Jenny, you know having some experience with addiction personally as well in her life, with her family, felt really connected to the story, saw the problem nationally, and wanted to make a film about that. After Chase died, she actually reached out to us pretty quickly, within 24 hours, and was able to come to the funeral and do intimate, personal interviews with myself and my mom.
I think our reason to be involved with the film was the same as being very open with how he had died in his obituary, in that we just wanted to share our story and see if there was any way that we could have an impact on this issue, and prevent others from experiencing the pain of losing a loved one like we had. What else did you ask in that question? What impact is it having for me?
Shannon Phillips, MD: Yeah, what it did for you, and I mean obviously, you just said, community wise you don't want people to live this, right?
Jorden Saxton Hackney: Yeah.
Shannon Phillips, MD: You want no one else to walk in your shoes.
Jorden Saxton Hackney: Yeah.
Shannon Phillips, MD: Yeah, and what did it do for you?
Jorden Saxton Hackney: Definitely, so I'm actually still involved in the film. Since we completed filming, I've started working with Jenny Mackenzie as the outreach coordinator for the film, and so we actually partnered with Todd and several other physicians, community members, therapists, advocates, legislators, and developed a 39 page discussion guide that accompanies the film, and so now, my job as the outreach coordinator, is to connect with high schools, with advocacy groups, nationally to get the film into communities, to get people talking about this issue, asking questions, looking to see where they can make an impact. And so for me, I feel as if I am honoring my brother and his life by telling his story, and our story, and really just it's important for me to sort of take on an advocacy role, and really try and, in an active way, also by telling our story, but also by reaching out to communities, and getting this into communities. It really feels powerful for me to be involved.
Shannon Phillips, MD: Since this is all audio, I have to color it now that she's beaming from ear to ear. You light up. This is a calling for you, it feels like.
Jorden Saxton Hackney: It does, yeah.
Shannon Phillips, MD: Not going to happen to anybody else on your watch. Starting the uncomfortable conversation in communities, with kids, with communities to talk about, it's real. There's no community untouched.
Jorden Saxton Hackney: Yes.
Shannon Phillips, MD: To give them a framework, a facilitator's guide to have what is an uncomfortable discussion is a very powerful gift, so thank you for that.
Jorden Saxton Hackney: Thanks.
Todd Allen, MD: You know, Shannon and Jorden, you should both know that I had the opportunity to get to know Jorden through the film and participate in the film, but as you probably know Jorden, we used the film as a tool to catalyze some of these discussions for clinicians, as well after it was done, and some of my most powerful learning moments came from sitting in those screening auditoriums, you know, with the next version of the film, screening it for a bunch of clinicians, and then having a discussion afterwards. Jorden, as part of her outreach, also made sure that clinicians were invited to the screening, but community members, other employees of the hospital, and families typically showed up, who had been affected, so many families have been affected by this. It was a terrific discussion. I learned as much in those discussions about the imperative to think hard about what could be done to improve, as in any other place. I think those moments and some moments with some of my colleagues, one to one, the catalyst to help us as a group, really think harder and work faster towards the issue.
Jorden Saxton Hackney: That's so great to hear.
Shannon Phillips, MD: If you were sitting in front of, which it sounds like you've done, but many of us as healthcare providers in the state, what do you want us to do differently?
Jorden Saxton Hackney: Well I think it's like we spoke about earlier in terms of maximizing those windows of opportunity, being ready for them. Also, if someone's not ready, looking into adopting a harm reduction model of, "Do we need to prescribe Naloxone for someone to take home to give to their partner or their family member? Is there a way to get them access to clean needles in case they are still using?" At least that reduces the likelihood that they'll come in with abscesses associated with IV use, and just provide more resources for family members, if they're there and interested in being involved of, "Here's how you can help yourself, so that you can help them," so just being ready with that information, and that knowledge so that if people come in and they're ready for that, it's available.
Shannon Phillips, MD: Anything else you'd like to share, we haven't touched on?
Jorden Saxton Hackney: I don't think so, I just want to thank you so much for providing me the opportunity to come and share, once again, my story and my family's story, and continue to honor my brother.
Shannon Phillips, MD: Jorden, you are inspiring.
Jorden Saxton Hackney: Thanks.
Shannon Phillips, MD: Your brother is touching countless lives because of the work that you're doing, and so however we can help share that journey with you, we will, and I know we'll share this and other things along the way, so thank you for everything you're doing.
Jorden Saxton Hackney: Thank you.