Melanie Cole, MS (Host): Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole. And we have two Northwestern Medicine physicians for you today, highlighting the power in our patients' hands, exploring LVAD and suicide. Joining me is Dr. Quentin Youmans. He's an Assistant Professor of Medicine and Cardiology, and he specializes in Advanced Heart Failure and Transplant Cardiology; and Dr. Alyssa Vela, she's the Vice Chair for Equity in the Department of Surgery and an Assistant Professor of Cardiac Surgery specializing in Cardiac Behavioral Medicine.

Doctors, thank you so much for joining us today. What a topic we're discussing here today. Dr. Youmans, I'd like to start with you. You both recently authored an article, The Power in Our Patients Hands: Exploring LVAD and Suicide. Given that this is a difficult subject, what really inspired you to write this manuscript?

Dr. Quentin Youmans: Well, thank you so much for having both Dr. Vela and myself. It really is an honor to come onto this podcast and share a little bit about our work. We both take care of very complex patients who have advanced heart failure. And unfortunately, those patients carry with them a very heavy burden of disease, which includes disease from their heart failure itself, which can be leg swelling, shortness of breath, and decreased quality of life. And in addition to that, all of these things contribute to poor mental health as well.

And one of the things that we recognize is that mental health is something that we really need to treat for patients who have heart failure across the spectrum of their disease process. This specific manuscript was inspired by a case of a patient who had advanced heart failure and who was hospitalized, unfortunately, many times and developed worsening heart failure over the course of the hospitalization. This patient, unfortunately, had their LVAD. And ultimately, we believe, discontinued their LVAD in an act potentially of suicide. And so, we wanted to bring this concept to the forefront for all of those who take care of patients who have heart failure.

Melanie Cole, MS: What an interesting topic today, and it's not something that we hear so much about, but I bet it's more prevalent than we think when living with a chronic disease and certainly a debilitating chronic disease that gets progressively worse over time. I imagine it's more widespread than we imagined. So Dr. Vela, specifically for heart failure, what are some of the unique psychosocial and emotional challenges that patients face?

Dr. Alyssa Vela: Absolutely. And thank you so much for having me, Melanie. I'm really glad that we can have this conversation today and share this a little bit more with the audience. So, we know that mental health is a huge issue in this population with heart failure and those who go on to receive and live with an LVAD. But more broadly, we know that for patients with any cardiovascular condition, their likelihood of experiencing anxiety, depression, decreased quality of life, worse functional status, et cetera, is greater than the general population. And beyond that, patients with heart failure in particular have more of these conditions and worse quality of life, and even still for those with LVADS.

So for example, we see rates of anxiety for folks with LVADS at anywhere from 30-50% and rates of depression as well from 30-50%. So, folks are really impacted in a quality of life and mental health perspective when dealing with these conditions. And this is related to lots of different things. It is that functional status, how much they can do, the ability to do the things that are important to them, spend time with their grandchildren or work or be physically active. It's the work of managing these conditions themselves, taking medications, doctor's appointments, managing a device like an LVAD. And it's also that constant reminder that something is wrong with our heart, walking around with this device and the batteries, having this as part of their body is this constant reminder that something is wrong, that they're sick. And for all of those reasons, it can be a lot mentally to manage an LVAD and to manage heart failure. And so, we do see even greater rates of these mental health conditions.

Melanie Cole, MS: Dr. Youmans, in the paper, you highlight the importance of shared decision-making goals of care conversations. When somebody knows that LVAD is the treatment approach, can you elaborate further on this vital part of the care journey? Because we're talking about LVAD and these emotional and psychosocial situations that patients find themselves in that make them take it to that next level when you're having these conversations, when they're getting ready to decide on these treatment approaches. What does that look like? And is this something that's discussed how the emotional and psychosocial can really take a toll on the patient?

Dr. Quentin Youmans: Absolutely. And I think it's something that we really need to focus on discussing with patients and having open and honest conversations with patients, really from the beginning of their care journeys.

So, one of the things that we often will talk about is as we're adjusting medications and as we're ensuring appropriate followup to make sure that their heart failure symptoms are appropriately addressed. We also need to explore and address all of the different aspects of their care, including their mental health.

And so, when we bring a shared decision-making paradigm into this care process, we're making sure that we're educating patients about really what's the best case scenario in the setting of something like an LVAD? What's the worst case scenario and what are the things that the patient would need to and would be willing to live with after something like an LVAD surgery?

Our goal with LVADs is always to extend life and to really propel additional quality of life. But we need to make sure that patients understand what are some of the potential downsides or some of the potential things that they would have to get used to in terms of their care if they do move forward with an LVAD.

And I think one of the other important things to recognize is that heart failure in addition to many of other disciplines in medicine is truly a team sport. And so while myself as a heart failure cardiologist, I'll be very much focused on the clinical aspects and ensuring that patients are educated about their choices, we need to ensure that we bring in specialists like Dr. Vela and all of our teams to ensure that patients really are informed about both the benefits and the risks of things like LVAD therapies.

Dr. Alyssa Vela: I appreciate you saying that, Dr. Youmans. And I completely agree, I think it is the diversity of perspectives and of training. And that makes interdisciplinary care for patients with heart failure who pursue LVAD so strong. One of the things I would add is that folks who are pursuing this type of treatment go through a very robust assessment to really get an understanding of those risks and benefits and to really understand who would benefit and in what ways from this type of intervention. And that includes a psychosocial assessment of risk factors and potentially supportive factors. So, we need to understand these factors in terms of folks' mental health history, their current mental health, their social support, their life circumstances, their current living situation. All of that's really important to understand how someone might thrive with an LVAD, but also opportunities for us to provide intervention or to be proactive and preventative from a mental health perspective.

Dr. Quentin Youmans: I completely agree with that, Dr. Vela. And one thing I'll add too is that it's important for us to recognize that when we do these evaluations, they are not just a one-time evaluation. We should continually be assessing and addressing all of these concepts with our patients with every visit, because we know that things like mental health, just like other health predictors and processes can change over time. And so, it's so important for us to continue to reassess these things at regular intervals as well.

Dr. Alyssa Vela: Great point.

Melanie Cole, MS: Well then, along those lines, and Dr. Vela, thank you for outlining basically the framework that you recommend and how you identify these at-risk patients, let's talk about creating a safety plan. And while you're doing that, I'd like you to discuss some of the ethical considerations. What is that safety plan, first of all? And then, what about the ethical considerations if that safety plan involves deactivating LVAD for the purpose of helping that person to prevent suicide? Tell us about that.

Dr. Alyssa Vela: I think that's what this article was really trying to explore and initiate in terms of conversation of should we be talking about this? How should we be talking about this? And should we be developing a safety plan? I don't think that is standard of care here or in general at this point, but I think it is an interesting consideration given the nature of an LVAD specifically.

I think one of the key things that we've touched on a little bit when it comes to this is, again, understanding where folks are at and what their experiences are, what their risk factors are. And a huge part of that when it comes to safety is understanding their support situation, their support network. We really want our patients with VADs because of the practicalities of managing it to have someone around to not live alone; ideally, to have family involved, to help them with things such as their dressing changes, managing batteries, appointments, all of that sort of stuff. And all of that extends to their mental health as well. So, having that involvement of caregivers throughout the process and throughout the long-term journey of managing heart failure and an LVAD is really essential for physical and psychological safety so that we have a sense of changes over time in terms of mental health, quality of life, functional status, et cetera. And so, some of that safety planning, I think more broadly is leveraging that caregiver support that is such a big piece of that, of this care.

Ethically, I think there's a lot to consider here and I'll let Dr. Youmans add as well. But again, it's thinking about how can we be proactive and preventative while also not withholding or avoiding providing treatment for folks that have any sort of mental health history. And so, striking that balance between providing this potentially life-saving and life-prolonging treatment and also setting people up for success so that they can really live and thrive.

Dr. Quentin Youmans: I absolutely agree with those comments from Dr. Vela. I think the other thing when it comes to shared decision-making and our team-based approach is how can we include our other specialists, including Palliative Care specialists? Because as we recognize patients with advanced heart failure, they will at some point transition to end-of-life. And so, how do we make sure that everyone is aware of and that we're really honoring the wishes of patients when they ultimately do reach the end of life with LVAD support.

And I think our Palliative Care colleagues can be really helpful in discussing some of the challenges related to this and to really exploring what are the patient's wishes. Because at the end of the day, we do want to make sure that the interventions that we're recommending and the care that we're providing is aligned with those patients wishes.

From an ethical perspective, thankfully we have really fantastic colleagues within our Ethics Division and Department, both at Northwestern and at many hospital systems. And I think they can also help us really grapple with some of these issues. One of the things regarding LVAD that I think is a particular ethical consideration is the potential rapidity with which a patient might pass away if they were to try to deactivate their LVAD. And so, that's one of the things that we need to consider and take very seriously when we're caring for LVAD patients. And in fact, potentially even discussing these components of their care prior to an implantation to make sure that patients are aware of really the breadth of responsibility and the breadth of care that we're providing with something like an LVAD.

Melanie Cole, MS: Well, it certainly is a multidisciplinary and interdisciplinary approach. It's very comprehensive when you're working with these patients and certainly with their families. As you said, the importance of that support system is vital here. What further research needs to be done in this area, Dr. Youmans, as we look at all we've talked about today?

Dr. Quentin Youmans: Absolutely. I think one of the major pieces that we understood as we were compiling this manuscript is that there still is a dearth of information regarding how common this is in terms of the prevalence of LVAD and suicide. And so, I think more data to understand that aspect is really important. And then if we do find that this is relatively common, or at least higher rates than the general population, I think one of the really interesting things to look at would be are there considerations around the device itself that might be preventive or help to protect patients in that regard? But I think there's a wealth of information that still needs to be obtained in this setting.

Melanie Cole, MS: That's an interesting point that you just made, is that it could be the equipment itself and what could change with that. That's so interesting. And thank you. Dr. Vela, do you have anything to add to that?

Dr. Alyssa Vela: I do. Yes, very interesting points by Dr. Youmans. And a couple of things I would add in terms of future research, really two main things come to mind. The first is that in addition to anxiety, depression, PTSD that we see in this population, we also see a lot of cognitive impairment. Folks that are experiencing issues with memory, attention, focus, concentration, that sort of thing. And so, I think we need to better understand the opportunity for that to be improved with an LVAD, with blood flow, and to what extent that is related to kind of these other psychosocial issues that we're talking about and some of the suicide risk over the course of time. So, I think there's a lot to explore there scientifically.

The other thing I'd add is I think there's a huge opportunity to then consider how we can support the integration of psychosocial experts and providers, social workers, cardiac psychologists, counselors, et cetera, into interdisciplinary teams more broadly so that we are offering these integrated interventions for these patients who will benefit.

Melanie Cole, MS: I'd like you each to have a final thought here. And Dr. Vela, starting with you, what would you like the key takeaways from this manuscript to be as someone who specializes in Cardiac Behavioral Medicine, which is a fascinating subject of its own right, and I'd love to do a podcast with you on that specific because there are so many Behavioral Medicine avenues with which we can explore when we're talking about that, so what would you like the key takeaways from this manuscript to be?

Dr. Alyssa Vela: It is really interesting. I think the key takeaway for me is that life with an LVAD is it's complex. It can be beautiful and it can be incredibly challenging in that we need to continue to expand our awareness through research, through clinical practice, and through integration of Behavioral Medicine and other disciplines such as Palliative Care that Dr. Youmans mentioned to continue to assess, address, and prevent anxiety, depression, PTSD, and suicide. And so, I think this paper is a really wonderful contribution to the literature to continue to move the needle in this important area.

Melanie Cole, MS: Dr. Youmans, last word to you. What would you like other physicians to know about this topic and the importance of it? And as we look at the larger picture of chronic health conditions and suicide because of those chronic health conditions, what would you like the key summary to be?

Dr. Quentin Youmans: I think we live in a world where we are increasingly devoid of time, unfortunately. We have 10 or 15 minutes to spend with each patient and so much to get through in that time. But as Dr. Vela mentioned, I think really caring for patients requires a very comprehensive approach. And that comprehensive approach does not just rely on the physicians who might be caring for the patients, but really all of the healthcare professionals who have myriad expertise. And so, if we're truly going to care for patients in a comprehensive fashion, then we need to explore really every aspect of their lives, including and not limited to the symptoms that they might have related to their heart failure. But more broadly, what are the experiences that they're having and how are those experiences really shaping how they're living? And I think if we take that really comprehensive approach to their care, then we'll be providing the best possible care for all of our patients. And we don't have to do it alone. That's the key.

Melanie Cole, MS: Very well said. Thank you both so much for joining us today and telling us about this important topic. And to refer your patient or for more information, please visit our website at breakthroughsforphysicians.nm.org/cardiovascular to get connected with one of our providers. That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole. Thanks so much for tuning in today.