HCP Roundtable: Optimizing Shared Decision-Making and Communication in Small Cell Lung Cancer Care

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients EPEP program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc, and the host for today’s program. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers.

Today, we are discussing optimizing shared decision-making and communication in small cell lung cancer care. We’re going to discuss how healthcare providers can foster shared decision-making and improve physician patient communication in the management of small cell lung cancer, as well as strategies that healthcare providers can implement to enhance patient-centric care and drive better outcomes in SCLC treatment. 

It is my privilege to be joined today by Dr. Jacob Sands of Dana-Farber Institute. Dr. Sands is the Associate Chair of Thoracic Oncology at Dana-Farber Cancer Institute and an Assistant professor of medicine at Harvard Medical School. Dr. Sands conducts clinical trials with novel treatment options with a particular focus on small cell lung cancer and antibody drug conjugates. Thank you so much for joining today’s EPEP program. Dr. Sands.

Dr. Jacob Sands:

Thank you so much for having me happy to be here.

Dr. Nicole Rochester:

It is also my pleasure to be joined by Ms. Stephanie McDonald, a nurse practitioner in the thoracic oncology program at Dana-Farber Cancer Institute in Boston, Massachusetts. Ms. McDonald’s clinical interests include targeted therapy for lung cancer, immune checkpoint inhibitor toxicity management and streamlining chemotherapy, education for patients and families, providing an individualized plan for support, guidance, and education to prepare patients and families for their cancer journey. Thank you so much for joining me today, Ms. McDonald.

Stephanie McDonald:

Thank you so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

So let’s start our discussion today by looking at the obstacles that surround provider-patient communication and shared decision-making in small cell lung cancer care. Let’s start with some facts that might help frame our discussion. And I’m going to start with you, Dr. Sands. There is a lot to unpack given small cell lung cancer is often diagnosed at advanced stages, often requiring rapid decision-making due to its aggressive nature and limiting the time for in-depth discussions. Can you speak to some of the unique obstacles you faced in your own practice around patient-provider communication and shared decision-making?

Dr. Jacob Sands:

Well, I think this is something that’s applicable across all tumor types. Although then I’ll get to the fact that I think to some of the things that I think are more common when in the small cell lung cancer space. First of all, we now live in an era where information is out there, and patients will go looking for information. They’ll come in with an array of things and varying levels of confidence in what they’ve read about online as well. And I do not discourage that. I think I’m different than some other providers and I say, great, you want to read about things, read about them. If there’s something that’s really compelling to you, bring it in and let’s talk about it.

Now, if there are things where you’re like, gosh, that doesn’t sound right, but I’m going to ask about it, then ask about it. Let’s make sure we go over everything that you want to discuss. And I really make an effort to address every question that patients have. Now a lot of times, there are things we can’t know the answer to, But I don’t discourage them asking. And I also will say to them, I am going to try as best as I can to really directly address any question that you have.

And sometimes there’s not a solid kind of short answer. And so we’ll talk about how it’s hard to predict that. But I encourage people to ask questions. I want to make sure that patients know everything that they want to know, and I want to make sure that they’re engaged in their own care and that they feel empowered around everything within their care. Sometimes I think it can be easier for patients to feel lost within the system or kind of feel like they don’t have enough. But if people feel pressured in time or limited in what they can ask, then they just don’t know as much of what’s going on. So I encourage it. I directly answer everything that I can.

Now within small cell lung cancer specifically, with this being such a high smoking prevalence cancer where we know that cigarette–or any kind of smoking essentially–increases the risk within this population, within the lung cancer space, especially where there is this direct correlation that is widely known, I think that stigma can get in the way for a lot of people. And I’ll say off the bat that I know of patients who tell people publicly that they have breast cancer instead of lung cancer so that they don’t get the questions about, oh, did you smoke? Of course, we know that there’s a large population of individuals with lung cancer who never smoked.

And it’s often very surprising for people to hear that, that anyone with lungs can get lung cancer, as we often say, but small cell lung cancer is far more common in a population of patients with a heavy smoking history. That’s not 100 percent. I know patients who never smoked, they got small cell but overwhelmingly. And so a lot of the communication in small cell lung cancer, I try to gauge from the start how much is this kind of impacting their mental space around it and how do I do the best that I can to like, remove that guilt.

And hey, we’re starting from here. Let’s take this going forward. Now, for some people, it is a big space. For others, you know, that’s just not in their mindset, or it’s just hard to tell. So I try to gauge that oftentimes there can be kind of family conflict around this or someone still smokes. And I really try to remove guilt of still smoking as well. Because if people with decades of smoking history feel guilt, they’re actually more inclined to keep smoking, because that’s how that then helps them handle those feelings, those like, negative feelings. And so I think that is tied into this discussion in the small cell space that it’s not in all tumor types.

Dr. Nicole Rochester:

Thank you so much for sharing that. Dr. Sands. You said three of my favorite E words, which are educate, engage, and empower. I really appreciate you sharing your approach. I’m going to go to you, Ms. McDonald. What’s your perspective as a nurse practitioner, and what are the primary obstacles that you face regarding shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I often think that small cell lung cancer is diagnosed in advanced stages, and treatment decisions sometimes need to be made pretty quickly. So from the time that a patient has their initial consult with their medical oncologist, they may be starting their first-line therapy within a week, sometimes a couple of days. So I think it limits the opportunity for a really thorough or in-depth conversation with patients and families that you do. They do happen in the initial consult, but I think these patients really need, you know, follow-up visits and frequent check-ins to be able to fully digest the information that they’ve been receiving.

I think there are also kind of obstacles in patients’ emotional response to their diagnosis. I mean, given the aggressive nature of small cell lung cancer, I think many patients and their family members tend to be overwhelmed by the news, and this can really impede their ability to engage in decision-making fully. I think that patients’ ability to process and understand details in this scenario may be limited, and often the first visits tend to be pretty overwhelming. And I think that patients don’t always remember what was discussed in great detail with their provider.

So I think it’s a great opportunity for advanced practice providers to be able to implement or provide a different setting, separate from their initial consult with their medical oncologist in a slowed down setting, separate from going over all that initial information to really reflect on what was reviewed with the patient, go over what their care plan is and answer any questions that them and their…both the patient and their family have. I think that is super important.

Dr. Nicole Rochester:

I appreciate you sharing that. I can only imagine how emotional this must be for families and like you said, they’re going to need that time to process. So this team-based approach sounds phenomenal. Staying where you just left with this degree of urgency, how do you balance the urgency of starting treatment with this shared decision-making? And are there any tools or any tactics that you can share with the audience?

Stephanie McDonald:

So first of all, I think being honest and having transparency with our patients, I always really try to aim to provide really clear, open communication about their diagnosis and or summarizing their treatment options that were reviewed with them. I think, you know, I’m sensitive, but I want to be really honest in explaining kind of the nature of their illness and really that urgency to start treatment. But like I said, I also want to give space to be able to ask questions and express concerns.

I’m also open about the, you know, the advances in treatment associated with small cell lung cancer with, you know, improved response rates and a variety of clinical trial options. I know Dr. Sands could probably speak to that even more. But I really do think it’s important that we have these discussions with their patients, because it really is a different field now than it was even 5, 10 years ago when patients are diagnosed with small cell lung cancer. And so I think it’s really important to have a conversation with these patients about balancing treatment with their goals of care and really understanding what their goals are, what they find as kind of important to them, and what’s important to their family.

But to be able to just speak with patients, it’s not always like a tool but just having a listening ear and letting patients ask questions and being with them to be able to answer all their questions that they have. I feel like that builds a very trusting relationship from the get-go, which I think is crucial, especially with this diagnosis, when things can change pretty rapidly.

Dr. Nicole Rochester:

Thank you so much. Yes, Dr. Sands.

Dr. Jacob Sands:

Oh, I mean, to that point, the two visits can be very, very helpful, where when I’m talking with patients, I will often call out. I mean, frequently I can tell, like, hey, someone. They lost the whole information we’re discussing. Like, they went into their own head. It’s natural. The situation often just feels surreal with people. They were fine, and now all of a sudden, they’re in an oncologist’s office talking about having small cell lung cancer. It’s disorienting.

And I’ll often acknowledge that for people, I’ll say to them, hey, I usually find that people just feel the room spinning around them in the middle of a discussion like this. And if you feel that way, it’s totally natural. And I’ll often say that when I can see that someone has lost me, or it doesn’t seem like they’re tracking everything I’m saying. And usually people say, yeah, I don’t know what you said, but I think in doing that one, my goal is to essentially relieve any pressure. Like, hey, if you’re not catching everything I’m saying, it’s okay. We’re going to come back to it, because you’re at the center of all of this.

And I’ll call that out. Sometimes when discussing treatment options as well, I’ll call out common misconceptions. Oh, people usually come in here thinking that if they get chemotherapy, that means they’re going to be laid up in bed vomiting without hair. And almost always people go, doesn’t it? And thankfully, nausea is not nearly the problem. It used to be the first-line regimen for small cell lung cancer. People do lose their hair. And I try to really be very up-front about the things I expect, but also being very up-front about the things I don’t expect. Yes, they can happen, but I don’t expect that.

People often come in thinking the worst of everything, that a lung cancer diagnosis means that at any moment they can just drop dead, and any treatment is just going to cause a whole bunch of toxicity. And thankfully, that’s not actually the equation. And if that were the equation, then being an oncologist would essentially be torturing people, and that’s a horrible job, and we wouldn’t do that. But the goal in all of this from the beginning, most people want to be very clear their goal is prolonged quality of life. And so I will frame the discussion around that goal and make sure that we’re on the same page about the reason that we’re doing any of this, the reason we’re discussing it, and also making it very clear that they have a choice in all of this.

But I think some of that is also framing it in a way that feels right where it can be hard sometimes to make a decision. And I’ll say it’s normal to not be sure what to do sometimes, because there is not an option here that’s appealing. There is no option that’s like, oh, that sounds great. We’re choosing between two things we don’t want. So let’s kind of anchor around what is going to drive those decisions. Usually for the first treatment, that’s not such a dilemma.

I mean, this is an aggressive cancer that the first treatment often works great, and it has the real potential of working for a very long time. This is wonderful. Our first-line treatment really is very effective. And it’s exciting that we do also now have other often effective treatments that we can discuss. And so I know we’ll kind of get to that a little further down the line. But essentially what I’m highlighting is anchoring around what the patient is emotionally experiencing, because we all know it’s tough. Like, we work in an intellectual space, but we all live our lives in an emotional space. And so that’s where there can really be a big disconnect.

If we’re just talking, like, computer. But people are living their lives emotionally. You flip the script, and all of a sudden the healthcare practitioner is the one that’s disoriented. If it’s like our own lives, that someone else is interacting with us. So we have to be attentive to that and kind of, what are the beliefs coming in? Okay, what is the reality of those? And how much of a factor and how much do we really expect in all of this as a way of balancing this out?

Now, that being said, even with all that effort, the room spins around people. And so for them to then have a separate visit with Stephanie where she’s going to go through things in a different way, and then that ends up being another way. Like, okay, they got all that. They’ve maybe processed some of that. It’s impossible to process everything but some of that. And now they’re meeting fresh again and going to go through things in a different way then I think people retain quite a bit more. It’s also really important because Ms. McDonald and them are going to interact a lot as well. We’re a care team and so I often say to them, hey, I really want you to meet her, because she’s an important part of the team too. And that way she knows you. You know her because we work together.

Dr. Nicole Rochester:

I really appreciate how both of you really focused on humanizing the patient and normalizing the overwhelm and the confusion and all of the emotions that go along with a new cancer diagnosis. Well, we’re going to shift to practical tools and resources to empower patients and enhance long term outcomes in small cell lung cancer. As you both have discussed, there are some challenges with survival outcomes, particularly for extensive stage small cell lung cancer. Dr. Sands, I’m going to start with you. What are the most significant advances in the current treatment landscape for small cell lung cancer? Five years. And how are they impacting patient outcomes?

Dr. Jacob Sands:

Well, thankfully, you know, there’s a lot to talk about in this space, especially if we’re including current clinical trials, because there are a lot of drugs in development that have shown really exciting results. But aside from that, I’m going to stretch a little more than five years, because it’s so meaningful. Is the immunotherapy drugs that are now part of our first-line treatment. These are drugs that, unfortunately, probably work well for maybe 20 percent of individuals. But amongst those in whom these work, they can work amazingly well. We have patients that are more than five years out from their initial diagnosis with widespread small cell lung cancer that have never gotten another treatment. They got chemotherapy and immunotherapy and that’s it.

They’ve not yet had another treatment. Their disease is controlled. Now this is an, unfortunately, smaller subset of patients that this is working like this for. But I mean, I’m stretching to say that we might actually be curing some people of their incurable disease with the incorporation of these immunotherapy drugs. So first-line setting chemo plus immunotherapy has been the standard of care. Now more recently we’ve seen the ADRIATIC trial. This was a trial in limited stage after chemo-radiation that now uses durvalumab (Imfinzi), one of those immunotherapy drugs after chemo-immuno it actually had a pretty impressive impact on survival on the time to the disease occurring as well as overall survival of patients made a really quite a big difference.

So that’s now the standard of care after chemo radiation for limited stage to then get immunotherapy for two years. But five years ago, also saw lurbinectedin (Zepzelca). This is another chemo agent, got a publication from that study that led to approval. This was 105 patient cohort within a basket trial. So single arm. That led to FDA approval of a new drug for small cell lung cancer. Lurbinectedin is a once every three week drug. It’s pretty well-tolerated. I think as far as chemotherapy drugs work, it does not have a lot of the toxicities that people worry about.

There are some things to monitor, but generally it is a manageable side effect profile as a new drug. More recently, we have tarlatamab (Imdelltra). This has made big headlines and it was a trial that enrolled in the third line and beyond. But the data was so good it got approved in the second line. So, you know, I often quote that about half of patients that get the drug benefit from the drug. It’s 40 percent that have a response–response meaning that it shrank by more than 30 percent. And amongst those individuals, 43 percent of patients were still on the treatment at the time of the last data kit.

And that’s beyond a year of ongoing treatment and some quite a bit more. So we don’t yet know the ceiling as far as how long this drug can work for. When it’s working. I mentioned about half of patients benefiting, but the response rate being 40 percent. That’s because even with stable disease, meaning that it could have shrank by less than 30 percent or grown by less than 20 percent. But in that range we see disease control and some portion of that out beyond six months, which I think is meaningful in the third-line and beyond setting.

Now, of course, what patients want and what we want for them is for something to work for years, not just for months now, you know. But if something works for six months even, and then you have something else that works and then something else that works and something else, then you can string that out to a much longer timeframe. But it’s exciting to see potentially years of benefit from another immunotherapy drug. Now, with that being said, there’s a lot going on in clinical trials that’s quite exciting too. And I’d say one of the benefits at Dana-Farber as well as some of the other bigger academic centers is that we have multiple trials for small cell lung cancer.

One right now is CAR T. So this is essentially collecting the immune cells from patients. We send those off and process them so that they are trained essentially to recognize small cell lung cancer cells. And then we infuse those back into patients. So patients get their own cells back, but now are essentially trained to find small cell lung cancer cells and kill them. So the treatment is essentially training someone’s own immune system to do the work. And it’s exciting. We’ve enrolled patients on that now and to see that technology now coming into the space on top of multiple drugs, which we call targeted chemotherapy.

These are essentially chemo that is bound to an antibody, so that goes and finds a certain receptor on the surface of cells where it then pulls that compound into the cell. And so the chemotherapy is delivered into the cancer cells instead of just going everywhere. And that’s another whole class of technology that’s happening in clinical trials. Now, that’s a bit of scratching the surface as far as clinical trials. There are multiple other things that I could go into, but trials options, I think, are a really important consideration in the small cell space.

I’d say, at this point, especially if you combine what I just said about the past five years now with what’s going on in available clinical trials, there is more happening in the small cell space of novel, effective treatment options than the history of everything up to this point. And so it’s really exciting to see that as an option for patients and to see people do well for such extended periods of time.

Dr. Nicole Rochester:

Wow, that is extremely exciting. When you talked about curing an incurable disease, that’s when you really got my attention. So, Ms. McDonald, I want to go to you, because Dr. Sands just described some very exciting treatments with very promising results. And I can only imagine that this information, while great, is also overwhelming to patients when they’re presented with all of these options? So are there specific decision aids or tools that you use when you’re talking with patients and families to help them understand the risks and the benefits of the different treatment options as they’re making decisions?

Stephanie McDonald:

So, yes, there are a lot of different treatment options. And with that, you know, we need to be aware of the potential toxicity associated with the treatment that patients are getting, which don’t come without risks. Right. Most patients do pretty well on immunotherapy, but there definitely are toxicities, you know, as far as, like, colitis or pneumonitis and rashes. There are things that are going to be education points that need to be made with patients to know what to look out for depending on what treatment they’re getting.

So I think it is incredibly important not only to provide education sheets to patients to reinforce these discussions, but like I spoke to earlier, I have a separate visit with the patients to be able to spend at least an hour the first time they are given a treatment plan, to be able to feed through all of the potential side effects. And I don’t want to overwhelm patients because you could be a bad, you know, commercial going over every single side effect. But we do need to be realistic with patients about what to be on the lookout for, what might come up, when to call if something does occur.

So I think the most important thing is breaking it down for patients to really easy-to-understand information and you can really gauge. I prefer to see patients in-person or at least have a virtual encounter with them over like a telephone encounter, because you can really gauge how a person might be responding to what you’re teaching them.If someone’s a deer in headlights and they’re overwhelmed by the information that you’re sharing, you need to be able to stop, take a few steps back, and break it down to easy-to-understand information for not only them but for their family members.

I think it’s really important that we also care for the family member as well. IWhen you walk into the room, you’re not just taking care of the patient, you’re taking care of every single person that is in their life. Like they have supportive families who are coming to these appointments who are equally as overwhelmed, or maybe there’s a shift in their role. And now that maybe somebody was a primary caretaker, very active and matriarch, or a patriarch in the household, and now there’s a shift in a whole role and dynamic for how these patients are going forward along their journey.

So we need to be able to spend time to unpack all of that to really understand how we can best support these patients. So besides just education tools, which I think just help reinforce the information that we go over with them as far as breaking down what are the side effects of treatment, how often will you be coming into clinic? People want to know simple things like what do you dress comfortably to come into clinic? What does the infusion room look like? It’s things that maybe as providers we don’t take a moment, because it’s second nature up to us to know kind of the…what the logistics are to somebody’s day in an infusion center.

But this is brand new information for most patients, and that can be incredibly crippling and overwhelming. So on top of providing concrete information as far as what side effects to expect, I also want to be doing a real time evaluation about what their supports are, what their needs are, are they losing weight, are they coming in and need help right off the bat with a dietitian? Are we assessing for their nutritional needs? Are we assessing their psychological needs? Because we know that anxiety, depression, fear of the unknown are very common emotions as a part of a cancer diagnosis and especially one as significant as small cell lung cancer.

So we really want to be talking to patients about the resources that we can encourage them to tap into or think about and talk with their family if they think they would benefit from these. I think one referral that I think often goes later in offering to patients is referral