Supportive Care for Lung Cancer Patients: Living and Feeling As Good As Possible

Published on

Topics include: Treatments

What is supportive care? How does it align with palliative care?  Join “The Conversation, Lung Cancer Edition” with host Meg Maley, Founder & CEO of CanSurround and experts Dr. Eric Roeland, Director of Clinical Research in Symptom Intervention of UC San Diego Health;  Niki Koesel, Director of Palliative Care at Carolinas Healthcare System, Levine Cancer Institute; and Randy Broad, 7-year stage IIIA lung cancer survivor and author of “It's an Extraordinary Life, Don't Miss It” as they discuss what supportive care entails. Listen as they speak candidly about “Living as long as possible, feeling as good as possible.”

To watch more of “The Conversation, Lung Cancer Edition.” Click here.

View more programs featuring , , and

Produced in association with

Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.   

Meg Maley:

Hello everyone and welcome to The Conversation, Lung Cancer Edition.  We are thrilled to be here today and joined by a panel of esteemed guests.  We have with us Dr. Eric Roeland, Director of Clinical Research and System Intervention and the Assistant Clinical Professor of Medicine at UC San Diego Health.  Welcome, Eric. 

Dr. Roeland:

Thank you. 

Meg Maley:

We have with us Niki Koesel, a nurse practitioner and Director of Palliative Care for the Carolinas Healthcare System, Levine Cancer Institute.  Welcome, Niki. 

Niki Koesel:

Thank you. 

Meg Maley:

And we also have Randy Broad.  He is an author, a speaker, a board member at the Patient Empowerment Network and a seven?year stage IIIA lung cancer survivor who also does a lot of other work with advocacy organizations.  Welcome, Randy.  

Randy Broad:

Thank you.  Glad to be here. 

Meg Maley:

So today we're going to talk about supportive care in lung cancer treatment, and I think for our audience the first thing that we might want to try to do is define supportive care.  What do we mean by that?  How is that different from what someone might call treatment?  And is supportive care in your views the same thing as palliative care, which also comes with a range of definitions these days. 

So I thought, Eric, I'd open with you answering your thoughts about that, and then, Niki, to you as well.  

Dr. Roeland:

So there's a lot of discussion about palliative care versus supportive care and what it is, and there [are] a lot of people who feel very heated about this and the definition, and I think it's actually quite confusing.  What it means to the patient and what's important to the patient is there's an added layer of support that's available to the patients and families to help maximize quality of life so that patients can live well, have their symptoms controlled and live as long as possible feeling as good as possible. 

Niki Koesel:

I would agree with Eric.  I think it goes on debated right now across the country, and people that have their certain opinions about supportive versus palliative care are very committed to their views object that.  In the institute that I'm at we are—are department of palliative care, and I really see that as a part of supportive care. 

One of the areas of culture that we're trying to change at our oncology center is to make sure that, quote, best supportive care, which historically used to be used at the end of a treatment option, is now—really should be offered the entire spectrum of a cancer diagnosis and course.  Palliative care defined and recommended by ASCO, by NCCN really makes the recommendation that at the time of advanced illness diagnosis or at the time of high symptom burden that palliative care becomes integrated in someone's—in someone's course. 

So I agree with Eric.  It is something that really is looked at as an extra layer of support.  As I tell my patients every day, we're here for walking the road with you regardless of the terrain that you may hit, whether it's up or down or sideways. 

And then I do, I do still continue the conversation about differentiating palliative care from hospice and end?of?life care.  That's an ongoing topic of conversation across our medical professionals as well as our patient population.  One thing that we always say is hospice is always palliative care, but palliative care is not always hospice.  They do share the same philosophy around the whole person and in quality of life, definitely a different time frame of access, so there is a definite differentiation. 

Meg Maley:

Niki, could you give an example of how a palliative or supportive care program might get involved with someone who is newly diagnosed? 

Niki Koesel:

Absolutely.  The way that we have defined our program here at my site is at the time of certain diagnoses around high?risk—what we would consider high?risk cancer diagnoses, so a patient with unresectable pancreatic cancer or a patient with advanced?stage lung cancer, that is anticipated to have multiple symptom issues to deal with, we actually get involved very early.  And the way that that happens is the treating oncologist can offer this level of service to their patient as a consultation and just as part of the medical team. 

I think it has to be truly imbedded to be integrated.  I think when patients feel that they have to go to a separate team or a separate set of—a separate institution, per se, it may not feel like—like truly part of the medical—the medical plan of care.  But what I've seen the most success in is patients that have access to a palliative care consulting team that is truly imbedded within their treatment facility.  

Meg Maley:

Great.  And, Eric, do you find that your program gets involved with patients across the continuum of care? 

Dr. Roeland:

Yes.  So I—the challenge here is waiting for a medical oncologist to recognize that people have needs or symptoms out of control, and so I really encourage patients to advocate for themselves and independent of their stage cancer diagnosis.  If they have symptoms that are out of control or they're not achieving their quality of life, they should have access.  They should have access to palliative care. 

Yes, I agree, ASCO has defined our service by Smith and colleagues as all patients with advanced cancer should have access to palliative care, but they also highlight that anyone with symptoms out of control or who is not achieving the quality of life should also have access. 

So I have patients, for example, with breast cancer who are going through curative chemotherapy that may not be tolerating their chemotherapy well because of nausea or neuropathy or what be it, and we are—we have the expertise to make that experience better.  There should not be suffering during that journey, and really the best way to make this change is for patients to advocate for those changes. 

Meg Maley:

That's great to hear, and it's bringing up a point that we discussed in advance of this a bit, but the concept of physical pain versus suffering, which can be layered atop the pain, right, the emotional burden that accompanies physical pain, and also the concepts of healing versus curing.  And you both walk very directly down the path, the path like you said, Niki, goes forwards, backwards and upside down sometimes.  Patients are sometimes juggling those concepts as they travel their cancer journey. 

Eric, do you have any thoughts on how you would position yourself in the space of healing versus curing, or how you approach patient care from that perspective?  

Dr. Roeland:

Well, I feel like Randy could help us out more here as a patient because the patient's perspective is actually what it's all about, and until we recognize and focus on the patient and put them first, we're never going to really understand what healing truly is.  So, Randy, do you have thoughts on that? 

Randy Broad:

I have many thoughts.  Thank you for asking.  One of the challenges when we're first diagnosed—I'm going to start there because we talk about the journey, and a journey has to obviously start someplace—most cancer patients that I have talked to are a deer in the headlights when they hear those words "you have cancer."  And so with that we don't even really know what questions to ask, and it's really challenging, you know.  From finding the right doctor you want to be treated with to understanding what the treating protocols they're prescribing and the steps that are going to take place is a very challenging and a daunting experience because there's so much anxiety and emotional aspect that's already underlying that when you hear them—you know, when you hear them say what they're going to prescribe, you hear—it's like having a bad cell phone reception because you hear like every third word because your mind goes elsewhere. 

So it's, you know—but to your point, it's very important for patients to advocate for their care.  I push for this all the time whenever I'm addressing a patient audience and/or any healthcare community.  I believe that that is at the first and foremost area that we need to start.  

Dr. Roeland:

Yeah.  So I think one thing that you're describing, Randy, as really important is oncologists, we're under incredible pressure to not only deliver bad news but also develop a plan and describe the risk/benefits and alternatives associated with that plan, usually imbedded within a 30?minute appointment.  Sometimes we get an hour for a new patient, but it's a lot to cover. 

And I've had patients describe kind of what I would say as like being hosed down with a fire hose with all this information and not being able to really catch a sip of water of any of it. 

Randy Broad:

Mm?hmm.  That's a really good an analogy.  

Dr. Roeland:

Other patients say, you know those characters from Charlie Brown, they hear that wah?wah?wah, that sound is—that's what the oncologist sounds like after that word "cancer."  

Randy Broad:

Right.  No, it's very true.  It's—again, I don't think I was atypical at all.  I think that this is—it is a challenge.  I made a point of always taking somebody with me to these appointments so I had an extra pair of ears, so that I could ask them afterwards, did I really hear him say I'm going to die in the next year or two, and that was what one of the early doctors that I fired told me. 

And again there's—every doctor is different.  I can't imagine doing your job because of what you have to see and tell people every day.  I mean, it's a very—it's really—it's challenging on both sides.  There's no doubt about it. 

Dr. Roeland:

Yeah.  So what I do with our trainees, so both the oncologists and palliative care providers, is based off patients’ experiences.  What we encourage and train our trainees to do is after you deliver a message such as "you have cancer," that's the point where you're supposed to stop speaking and listen.  And then… 

Randy Broad:

Yeah.  I remember asking my doctor later on in the process how much time he was given—or how much training he was given in college during his medical degree to learn his bedside manner, and he held up his hand and he goes (indicating) like that.  So I think that is probably—I mean, he just happened to be somebody that got it and was good, but I certainly had to go through—I had to go kiss a few frogs at the beginning to learn who he was. 

Meg Maley:

Well, and certainly, you know, "you have cancer" is a particularly poignant point in time, but those points of heightened vulnerability don't occur just once on this journey, right?  So the end of treatment for many can be a time of high anxiety.  A point where you're told maybe your cancer has returned can bring a flood of emotions as well.  

And, Niki, I wonder if you can speak to that a bit, you know, in the context of this idea of healing versus curing.  

Niki Koesel:

Absolutely, and speaking from the old nurse's textbook that—you know, the theory of total pain I believe in a hundred percent, which is, of course, means pain that comes from the physical being, emotional, psychological and spiritual.  And one of the roles that I see for myself and my team in palliative care is really around coaching our patients and helping to empower them with what questions to ask when they go to their medical oncologist. 

I can share certain things with them, but as all patients would want, they want to hear certain details and options from that treating physician.  And so I think when it comes to that healing—I'll get back to that for a second around this total pain—it really is about, like Eric said, kind of shut up and listen.  We have to truly get to what's important to our patient as a human being, not necessarily always as the patient with lung cancer, the patient with cancer, but what means healing to you because it is probably going to be different than what healing means to me. 

And some people may think cure is healing, some may think that something totally different is what would heal them.  Many times I find in that type of high—that time of high vulnerability that healing represents, you know, family relationships coming to fruition or to enclosure, and really the cancer journey becomes almost a symptom.  

So if we do have the time to stop and listen to what they're actually going through, I think that helps us understand what their goals are and what healing means to each individual patient.  But I agree that you really—patients don't know what to ask.  They—I tell the students that I teach, I always say respect the crisis. 

Every time a person walks into a building with the word "cancer" above the door, there's some type of crisis going on inside for them.  It could be following a scan, it could be a first time of infusion, it could be afraid that they've had a recurrence after being, you know, no evidence of disease, and so we have to be able to respect that and normalize it to some extent and be empathetic.  So it's all about what it is for the patient.  We can't define it ourselves.  

Randy Broad:

I was fortunate in my first meeting with my oncologist who I chose, I had an hour with him, and I remember at the very end he says, “Do you have any questions?”  I said, “The only question I have is the questions I don't know how to ask.”  And he said, “That's a good question.”  And so that's really important because we really—I think most patients that hear those words have no clue what—where they're at or where they're headed. 

Dr. Roeland:

Absolutely. 

Meg Maley:

Kind of taking us a little deeper dive into the actual patient experience, could we talk a bit about the challenging symptoms and side effects that people with lung cancer experience, maybe identify those first, and then talk about treatment and what's happening for people in the world these days. 

Eric, I really loved what you said about some people still believe they should have to experience nausea, and it's just not true anymore.  I think that's so empowering for people to hear.  So maybe starting, you know—let's start with nausea and vomiting and work through them, and I ask you both to just comment from your different disciplines and organizations.  But what's happening with symptom management these days?  

Dr. Roeland:

So there's a lot.  It's actually quite exciting, and I think we can start with the two most common concerns that patients have who are going to receive chemotherapy.  And we should be clear that there [are] some patients that don't need chemotherapy because they're in a more—an earlier setting, and we have cancers treated by surgeons, treated by radiation oncologists and then, of course, medical oncologists. 

But for those patients that do require chemotherapy the two biggest concerns are hair loss and nausea, which is I think based off of history where we've done [poorly] at treating nausea.  But in the last 30 years, we've developed evidence?based guidelines where we give medication prior to patients receiving chemotherapy to avoid the experience altogether. 

And so what we do is we've placed chemotherapy into three risk groups, and based on what chemotherapy you get they're either at high, moderate or low risk of developing nausea.  And then if you are at high risk, you get three drugs before chemotherapy.  If you're at moderate risk, you get two drugs before chemotherapy.  And then if you're at low risk, you may or may not need something. 

I want patients to know that we have new, effective treatments that continue.  In fact, there's a recent one—there [are] two drugs that were recently approved in the setting in the last six months.  And I also want patients to recognize that there are individual risk factors outside of the chemotherapy itself that places specific patients at higher risk than their peers. 

So a couple things.  Just because your friend or relative got chemotherapy and got nauseous doesn't necessarily mean you will, because their chemotherapy may be different, and their personal risk factors are different.  In general, the patients that get nauseous with chemotherapy are young women who don't drink and have a history of motion sickness or history of sickness with pregnancy. 

If you have those risk factors, you need to let your—your oncologist know because it might be that instead of treating with you only two drugs before chemotherapy we might use three instead.  And, interestingly, this is the only time where a little bit of alcohol consumption, and I stress little, may actually protect you from getting nausea.  

Meg Maley:

That's fascinating.  That's on my note pad.  Do tell more. 

Dr. Roeland:

The other drug that recently has been evaluated and has wonderful evidence, which is now part of our NCCN guidelines, the national guidelines in terms of antiemesis prior to chemotherapy, is a drug called olanzapine.  Olanzapine is also called Zyprexa, and people when they hear this drug get very concerned, because it was initially studied as an antipsychotic. 

I want patients to recognize that if they have bad nausea that they should not be afraid of this drug.  It's available in smaller doses than we use for patients with psychosis, and because it hits multiple receptors in the brain it's actually very effective at treating—not only preventing nausea but treating it when it occurs. 

So if you're having very bad experience despite all the guidelines that we have and are receiving appropriate pre?treatments and your providers mention that they want to use olanzapine, don't be afraid of it.  It can be very helpful.  

Meg Maley:

The way you're saying that gives me confidence. 

Dr. Roeland:

Yes.  

Meg Maley:

If I was a patient and you told it to me that way, that would be powerful. 

Dr. Roeland:

Well, the problem is they go home and then they read the back of the box, and then they freak out.  But I will tell you, we have actually studied this in thousands of patients in Phase III studies, and there's better data on this than a lot of the things that we do, so I just want people to know that there are tools out there, and our arsenal for antiemetics continues to grow.  And just be sure to tell your provider if you're worried about it and if you have risk factors, and then have them explain what their plan is to prevent you from having that experience. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on January 30, 2018