Melanie Cole, MS (Host): Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole. And today, we're highlighting management of patients with advanced signs and symptoms of heart failure or the COMPASS HF program at Northwestern Medicine. Joining me is Dr. Sarah Chuzi, she's an Assistant Professor of Medicine and Cardiology at Northwestern Medicine; and Courtney Bartelstein, she's a Physician Assistant in the Bluhm Cardiovascular Institute in Comprehensive Palliative and Supportive Services for Individuals with Heart Failure, or the COMPASS HF Program.

Thank you both so much for being with us today. Dr. Chuzi, I'd like to start with you. What inspired you to create this program? What is the main objective of it?

Dr. Sarah Chuzi: Thank you for having us on the show. So as you said, I'm an advanced heart failure cardiologist. And one of the things that I noticed early on in my training and during my career as a heart failure cardiologist was that patients with heart failure are very unique in terms of some of the challenges that they face. These patients have a lot of symptoms, both cardiac and non-cardiac. They have a lot of psychosocial challenges and they often face very complex decisions, including decisions at the end of life. And I always thought that it was interesting how different they were from other patients with other advanced illnesses such as cancer.

And I've always been interested in palliative care and palliative medicine, which is really medical care that seeks to support patients who have serious illness in decision-making and symptom control and support and end-of-life care. And so, I've always wanted to combine those interests and develop a program that really supports patients with advanced heart failure as they face these unique challenges, especially at the end of life. So, that is how and why I developed this program.

Melanie Cole, MS: Thank you so much. So Courtney, we're speaking to other providers here, and not everybody always understands the differences, the nuances between palliative care and hospice and even patients listening to this. So, can you please give us a little bit of a differentiation between these two things?

Courtney Bartelstein: Yeah, absolutely. It's something that I feel like I didn't fully understand the difference before I joined the COMPASS team and I was really working on the Galter 10 Cardiology Floor. Palliative care I think of as like the big umbrella and hospice could be one part of it, but it doesn't have to be. So, palliative care goes alongside treatment of the underlying disease. So, it's really just an extra layer of support for patients dealing with serious illness and their families to really help relieve suffering. So, really, all patients should be receiving palliative care because we should be also focusing on the relief of suffering alongside the treatment of the underlying illness.

Hospice comes into play when patients are really nearing the end of life and all hospice is is it's an insurance benefit for patients with a life expectancy of six months or less. And it really allows patients to get extra support and resources when we're really focusing on symptom-focused care at the end of life. So, hospice is amazing when we have the right patient for it, whether it's they want to be at home and avoid being in the hospital, they feel like their suffering is just too much at this point and they really want to transition to really focusing on those symptoms. Hospice could be a really great tool for us, but we're trying to really change the culture on our heart failure team to really differentiate between palliative care and hospice because I think we have a great opportunity here to intertwine palliative care earlier on in patient's heart failure journey.

Melanie Cole, MS: Well, it's certainly about quality of life, really, whether you're talking palliative care or hospice. It is about quality of life for the patient, for the caregivers. Such a difficult time. And thank you so much, Courtney, for really explaining the differences here. So, I'd like you each to tell us about your specific roles within this program, the day-to-day management of the COMPASS HF, what that looks like. So Courtney, why don't you start? What's your specific role?

Courtney Bartelstein: So as the PA on the team, the team right now is just me and Dr. Chuzi, and I spend half my time seeing consults for patients admitted to the hospital, really for goals of care conversations and complex medical decision-making. So whether it's deciding does the patient with advanced heart failure want to start an inotrope? Or does this patient with advanced heart failure want to pursue LVAD? Or sometimes it's having conversations about is it time to consider enrolling in hospice? So, I assist the primary team in having those conversations. And really, I'm an extra layer of support for the patients, but also for the primary team who have a lot going on taking care of their whole list of patients admitted to the hospital.

The other half of my time is spent in clinic. So, I see patients for routine heart failure care with a palliative care lens is what we like to say. So, we're doing medication titration of their GDMT for heart failure, adjusting their diuretics, checking labs. But also, at the same time, building rapport with patients and their families, getting to know them better, getting to understand how they make decisions, really building prognostic awareness so they know what to expect as their heart failure progresses, and helping them be prepared for the future. So, we can really outline values and make decisions when we're not in a time of crisis.

Melanie Cole, MS: Dr. Chuzi, why don't you tell us where you fit in here?

Dr. Sarah Chuzi: So, I'm very grateful to Northwestern for funding this program. And the initial concept and design of the program was my ideas, just based on many years of clinical observations and trying to figure out where the gaps in care were for these patients. And so, I initially developed the program and the components.

Courtney is amazing, and she is the one who's providing most of the clinical care. So, we meet every other week and review patients and clinical scenarios and try to figure out if we can optimize the program. And I also try to educate my colleagues in the advanced heart failure space about the benefits of this program. You know, I think a lot of physicians go into Cardiology, because they want to help people live longer and healthier lives. And of course, that is always our main goal. But I think helping patients navigate the end of their lives with dignity and in a way that aligns with their goals and values is just as important. And so, I really try to share with my colleagues the benefits of this program and help them figure out how they can use this program to help them in their clinical care and their patients.

Melanie Cole, MS: Such important points. And Dr. Chuzi, speak about patient selection. Who's eligible for this program? And as far as referring physicians, what can they expect when they're referring their patient to the COMPASS HF Program?

Dr. Sarah Chuzi: So, we want to target patients in this program who have heart failure and who have high risk features. So, patients who may be struggling with symptoms or complex decisions or who may be nearing the end of their life, but who may not know that, we really want to help these patients navigate this really important and critical time and support them on this journey and make sure that they have all of the information to make these really important decisions and to ensure that they are in control of this critical stage of their life.

And so, physicians. especially within the heart failure group can refer to our program either from the inpatient setting or the outpatient setting and we really want to be a partner with those physicians, right? Many times these patients have been following with these heart failure physicians for many years and they have a really strong relationship with them and we do not want to detract from that at all. We more just want to use our skill set to help these physicians, especially heart failure doctors, take care of these patients during this important time in their life. And so, Courtney will see patients in the outpatient setting in between visits with their routine heart failure clinician. And often, she will report back to the physician, things that the patient shared with them or any change in goals or values that may be important. And so, it's really we try to create this team-based effort to provide really patient-centered care.

Melanie Cole, MS: Courtney, as we talk about patient-centered care, another important aspect of palliative and hospice care are the caregivers because it's tough time on them as well. How is this program really benefiting, as you see it, patients, but also their caregivers? In what way is this program so unique in that way?

Courtney Bartelstein: I think that it really gives an opportunity to educate caregivers and patients, but a lot of times the conversations I have are more so with the caregivers, especially as patients are getting sicker and maybe they're not able to meaningfully participate in some of these goals of care conversations. But really, we tell patients they have heart failure, but patients don't always know what that means. What can you expect when you have heart failure? So, telling them about a lot of patients have repeated hospital admissions to pull extra fluid off. We talk about disease progression and signs to look for that your disease might be progressing. So, really empowering caregivers and patients of what could the next few years living with heart failure look like and what supports are out there available for them is kind of where I see most of our benefit coming in.

I think that one of my favorite parts about this program and what makes it unique is that it's important to us to keep our patient panel a good size. We don't want to expand too quickly because we want to make sure we have enough time and energy and space to really accommodate all of our patients needs and the caregiver needs as well. So, I'm seeing some patients who have really bad symptom burden and are making hard medical decisions. I'm seeing them weekly for telemedicine right now until we're able to get things to a more stable point. So, I think my ability to increase access for these patients as the disease is progressing, it's great.

And then, another unique part is our partnership with the community-based palliative and hospice agencies. So, you know, a lot of these agencies, a big portion of their panel is cancer patients and they're not used to taking care of heart failure patients, especially in hospice and the nuances that go into that. So, we've been able to partner with these agencies and provide them education and have actually changed some of the practices that they do when caring for heart failure patients in hospice. So, our partnership with them has been super helpful as well.

Melanie Cole, MS: That's so interesting and comprehensive, Courtney. Thank you for that. And I'm so glad you partnered with those community hospice workers because it's great and educational and really is helping so many patients. Dr. Chuzi, last word to you. What do you hope the long-term impact of the COMPASS HF program will be. Do you have any advice for physicians providing palliative care for patients with heart failure? Just as Courtney was just saying, educating people, because it is different than we think of as end-of-life for cancer care. Just give us your best advice and summary and what you're looking forward to in the future.

Dr. Sarah Chuzi: I think the program has already had an impact on the culture of our heart failure group here at Northwestern, even in understanding that palliative care does not mean end-of-life care. It doesn't mean that we are directing patients to hospice if that's not in line with their goals. It's an extra layer of support that can be provided even alongside aggressive medical care. And so, I think that bolstering these concepts and this program and really just talking about it and educating our group has already created a culture change that has benefited, I think, both patients and physicians.

And then, the other thing is just recognizing that patients with heart failure are so unique, just to emphasize this point again. The clinical trajectory for patients with heart failure is very unique from that of patients with cancer. Oftentimes, patients with cancer have a very linear decline, which is predictable. Whereas patients with heart failure, they often have a lot of ups and downs and that can make it really difficult to know when to talk about end-of-life decision-making or care with patients. And often, those conversations get delayed or kicked down the road when really we have an opportunity to have those conversations earlier in a patient-centered and sensitive way. And so, I hope that just by investing in this program and talking about these topics more with clinicians and with patients, we can begin to create a culture change and an environment where we can really take care of these patients as best we can as they near the end of life.

Melanie Cole, MS: Thank you so much for joining us today. Thanks so much for joining us today and telling us about this program at Northwestern Medicine. 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 joining us today.