Join Dr. Ben Caldwell as he speaks with a panel of cancer care experts Caitlin Minniear, LMFTA, MDFT, Alison Tierney, MS, RD, CD, CSO, and Emily Roll, MS, CCC-SLP. Each coming with their own specialty and diverse background, they discuss everything from cancer prevention to supportive care for cancer patients and their families.
These experts offer a holistic and positive approach on what may seem like a heavy topic. They answer questions on how one might initially get involved, how different nutrition and lifestyle changes can have big impacts, and building up a network within your private practice that incorporates different providers.
Most importantly, they offer courage and reassurance—because even though this can be hard work, you can definitely do this. If you’ve ever been interested in working with cancer patients, this panel of experts has the knowledge and insight on what to expect, and the best advice on how to get started in this line of work.
- Tell me about your work with families and support systems.
- How have each of you pivoted your work during COVID to still provide care?
- How important is working with other specialties and backgrounds when working with cancer patients? And when should you refer to those particular specialties?
- How do SLPs get started working with cancer patients?
- What positive outcomes can cancer patients see from working with a dietician or nutritionist?
- What are some of the most effective behavioral health interventions to use with this population?
- Do you recommend any special trainings for those wanting to work with cancer patients?
- Anything like that that you’d like to add before we call it an afternoon?
Ben Caldwell: Good afternoon and welcome to today’s Ask the Experts Webinar from SimplePractice, a collaborative look at cancer care. We are honored to have you with us this afternoon. We’ve got a great panel of experts to talk about their work across disciplines. We’ll be together for about an hour today. And just as a reminder, there will be a recording of this webinar that is sent out within the next 24 hours after we’ve concluded this afternoon.
I’m Ben Caldwell. I’m the education director here for SimplePractice Learning. I’ll be the facilitator of our conversation today. And we’ll spend a couple of minutes starting with introductions of our panelists. We’ll get into some presubmitted questions that our panelists have lots to say about. And then we’ll close with some final thoughts before the hour.
To start with, let’s introduce our speakers. We have Alison Tierney. Alison is a registered dietician and board-certified in oncology nutrition. She’s multi-passionate in nutrition. Her expertise goes beyond cancer and involves helping others with the management of chronic diseases, with a focus on a whole food plant-based diet. Alison, we’re happy to have you with us. You want to talk a little bit about your work?
Alison Tierney: Thanks so much. Yeah, I’m super happy to be here and among the other panel experts as well. So my work currently is in my own private practice of Wholesome LLC. And previous to that experience, I was at two different cancer centers, one nationally well-known and then a more local academic center. And when I transitioned to the local academic center, we built the nutrition program from the ground up to where it exists now, which is something that’s really cool because I got to see that insight and be able to build where there was no pre-existing nutrition cancer center program.
So that’s really cool from that standpoint, and to be able to collaborate with other disciplines to figure out, how is nutrition care going to work in together with the already existing program? So I still do some work at that cancer center, but then I do primarily the biggest amount of work in my own private practice, where I see primarily cancer patients, whether they’re going through the course of treatment or they’re actually into survivorship as well and how we can help reduce their risk of recurrence using diet, nutrition and healthy lifestyle. So that’s kind of where I’m at right now.
Ben Caldwell: Wonderful. Thank you, Alison. Next we have Emily Roll. Emily provides in-home speech therapy services in Houston. Emily has a specific interest in treating adults with dysphagia secondary to a variety of etiologies, including cancer. Emily is passionate about evidence-based treatment and patient education. Emily, you want to talk briefly about your work?
Emily Roll: Yeah, sure. So I have experience treating patients with head and neck cancer and other cancers in the home health industry and at the hospital. I still work PRN at local hospitals, but then the majority of my work is through my private practice. So typically I get patients that might have voice or swallowing difficulties, either not usually immediately, but at some point later on, whether that’d be like three to six months after treatment when some of their difficulties have set in. So yeah, it’s an area that I enjoy and I’m happy to get to be a panelist here.
Ben Caldwell: Great. Thank you very much, Emily. We’re happy to have you with us. Then we have Caitlin Minniear. Caitlin is a mental health clinician in Seattle with a passion for helping people understand and cope with the myriad of mental health issues associated with chronic illness. She works with both patients and caregivers as they navigate the medical world and the sacred work of making meaning out of a serious or life changing diagnosis. Caitlin, you want to talk briefly about your work?
Caitlin Minniear: Yeah. Thanks, Ben. Hi everybody. I’m definitely a relational therapist, so I help… My work right now is within a group practice and I work with adults across the lifespan developing and really understanding their sense of self, how that identity shifts when it comes into contact with trauma or grief or chronic illness. In my previous work, I was within a cancer center that integrated health care center, working with oncology patients, either with an active diagnosis of cancer or in the post phase of survivorship phase and really working with them to understand how their identity has shifted and to really make meaning out of just the chaos that can come out of cancer treatment. This work is really near and dear to my heart. So I’m grateful to be here today.
Ben Caldwell: Well, thank you so much, Caitlin. We’re very lucky to have all of you here with us. This should be an interesting cross-disciplinary discussion today. With that, let’s dive right into our questions. The first one comes from Brooke, and Brooke asks, tell me about your work with families and support systems. This is a question to everybody. So Caitlin, why don’t we start with you, and then Emily, and then Allison.
2. Tell me about your work with families and support systems.
Caitlin Minniear: That’s a great question. And in all of my work, I try really hard to use all of the support systems around my clients to help them reach their treatment goals, to find support and to really find healing in those relationships. And I believe with cancer care, often the support systems, the spouses, the children, the extended family can often be overlooked. All of the focus will go to the patients.
And so my work with caregivers is often to provide them support to help them have a space to explore those harder emotions that come with taking on maybe the branch of parenting, the branch of being maybe the main bread winner now and really helping that. You can see a lot of distress in couple of systems when one partner is undergoing treatment, and that has a lot to do with just the shock of the emotions and just this year with having a spouse or a partner that is going through such an incredible treatment.
And so providing couples counseling to help support them in that as well as parenting. And I think it’s important to know that kids are going to all act differently in terms of who has the diagnosis? If it’s a parent, if it’s a sibling or if it’s the grandparent, you’re going to see a shift in their behavior. So it’s expected that they might not do well at school, that they might act out and that’s just their way of processing not having the right tools. So I believe that family sessions are incredible, even if it’s just to break down what cancer treatment might mean to them in smaller terms. And yeah, I believe holistic care is really attacking the whole family and holding them through the experience in whatever way they need.
Ben Caldwell: That’s great. Thank you. Yeah, certainly a cancer diagnosis is a family event as well as an individual medical condition. Emily, tell us about your work with families and support systems.
Emily Roll: Yeah. So kind of like what Caitlin said, each patient and family vary in their individual needs and it also depends on where they are with their treatment. Those needs are going to be very different coming into it, just getting diagnosed and then as they’re going through it. And then afterwards as well into that survivorship, like they were talking about earlier. I find that families are very supportive when it comes to my treatment recommendations and diet modifications. And that burden might be harder on individuals who don’t have someone close by the help.
Specifically head and neck cancer, it’s devastating. You can have your teeth extracted, you can maybe lose your voice or have voice problems, swallowing problems. And so what I see a lot of the times is that so much of our quality of life, our livelihood, our social aspects involve using our voice, communicating to our loved ones, eating and drinking around meal times or at work or for happy hours. So there’s definitely a lot there. And so I would say that SLPs should have resources available to patients and family members should they want it.
I try to keep an updated referral list for counselors and support groups to refer by patients to. They might not be ready for it, but at least they know it’s there. And I have patients that maybe immediately are like, “Yes, I want to talk to someone,” or “I want to be involved with this group.” And I have other patients that might come back to me later and be like, “Yeah, you know what? You had mentioned that some people benefited from this.” So helping them build their support system through referrals too.
Ben Caldwell: It kind of reminds me, we did an Ask the Experts webinar not too long ago about working with military populations. And I remember one of the points of emphasis with military populations is that you don’t force anybody to a particular type of treatment or particular referral, but you let them know what resources are available to them so that people can sort of when they are ready, make use of the resources that feel most relevant to them. This sounds like a close parallel.
Alison Tierney: Yeah, I absolutely love hearing from Emily and Caitlin because even though we’re in different disciplines, it is kind of a similar thing. And I think we can all relate across the board that it’s a very individualized approach and knowing their families and their support system is really important for their own individual care. So for example, it does differ for me, especially when that individual is in treatment versus maybe into survivorship.
So when they’re in treatment in particular, especially as it relates to like, for example, fatigue, which is the number one side effect related to cancer treatment across the board, fatigue, one of the biggest things that’s going to affect their eating is that, do they have the energy to be able to cook a meal? And if they don’t, do they have a support system around them, someone that lives with them, whether it be a spouse, a family member to help them cook a meal? That’s super important to be able to understand. But if that individual lives by themselves, they don’t particularly have that support.
Then we have to work around that. Okay. What can we do to help this individual be able to make sure that they have meals available to them and easy access so that they are eating, they are getting their nutrition. So that definitely plays a huge role. And as you can imagine, some families are more involved than others. And I think Caitlin had mentioned this too, and I know it applies to Emily, but when you kind of have those family sessions, I love when the whole family or even just part of the family is there so that we can kind of like get an idea of what is happening at home versus sometimes the patient likes to exaggerate a little bit about maybe how much they are actually eating or not. So it’s nice to hear a little bit of both sides so that we can really put together what that bigger picture is.
Now, into survivorship, a little bit of a different example, I’m working with a lot of individuals who are looking to just improve their nutrition and overall healthy lifestyle to reduce their risk of development of cancer. And I have a lot of individuals who say, “My spouse is not on board with this,” or they might have kids and, “My kids are picky eaters.” And I often have to talk to people and remind them that the people around you and how they’re eating, especially kids, can drastically influence how you eat as well.
So if you have kids at the table and they’re picky eaters, you get a little bit of frustrated maybe in how that works and sometimes you just go, “Okay, whatever.” Right? And so even with like the moms that I’m working with, or the dads or anything, sometimes we’re talking about pediatric nutrition so that that can help them improve their own relationship with food at the table. So one of my patients just yesterday, we were talking about how to feed her kids because it was truly affecting how she ate her meals too.
So it is that whole person approach in terms of, what does this individual have for them, going for them, and sometimes going against them? I kind of mentioned in one of my bowels that I focus on a plant-based diet. It doesn’t mean that I work with people only plant-based, by any means. But oftentimes people will say, “But my husband wants to eat a ton of meat.” And it’s like, well, we didn’t say that you couldn’t have meat or anything like that.
And so it’s kind of hitting some of those objections of, “well, the biggest thing, the biggest barrier for me to make these changes is my family or whatnot. So taking all of that into account is super important. And it’s amazing the support system in terms of how it can benefit or really hurt somebody too in their progress.
Ben Caldwell: Absolutely. Well, thank you. It’s kind of a nice segue into the next question. Because when you’re talking about what people are doing nutritionally, certainly since the pandemic, people’s habits have changed, their behaviors have changed. And sometimes people who were not ever at home or dinner are home for dinner now every night of the week. So it’s had an impact on family dynamics. It’s certainly had an impact on people’s nutrition behavior. Our next question here is how have each of you pivoted your work during COVID to still provide care? Alison, I’ll start with you, just to kind of follow up on that topic here. And then we’ll go Emily and then Caitlin.
3. How have each of you pivoted your work during COVID to still provide care?
Alison Tierney: Yeah, absolutely. Food has totally changed for a lot of people. Kind of how it relates to how we help that individual, the other thing that I need to take into account is, where does that individual live? What access to food do they have? What availability? We were talking about this earlier at the panels. I live in Milwaukee, Wisconsin, where it’s 18 degrees today, and it’s really cold out. And I live in more of not a rural area, but that definitely affects where people can get certain foods and certain availability, where for a lot people that I know that live in California, they have way more options and availability to them depending on where they are.
So that has made a bigger impact in people in terms of their nutrition and their food choices based on where they live and what’s available to them with COVID, especially. I feel like COVID has made a bigger impact in that. And then you do find that people are eating at home more, and some people are like, “I hate to cook. What do I do?” And so now I’m getting bored of these meals because maybe we’ve been eating at home for so much longer. So it’s really being creative and then encouraging the patient to be creative at the same time, but you have to help them through that process.
Sometimes people often think that really good nutrition you have to have this like amazing recipe that you put together. So sometimes it’s just telling people that you can keep it simple and it can still be delicious and it can still be nutritious and help you meet your goals, whether that’d be during the course of treatment or into survivorship. The other thing that we sometimes take a little bit more advantage of right now is some of the home delivery services in terms of meals.
If somebody is having that fatigue or those issues, if they can get a meal that’s already cooked and delivered to them, or the ones that they kind of come with the ingredients and you only a little bit of cooking, we try to take advantage of those if the individual has access and ability to be able to choose those types of products. Now, otherwise, like in my practice, we’re definitely doing everything virtually. In a way, it has actually helped a little bit because when I’m seeing a patient virtually, most of the time they’re at home.
Sometimes they’ll be sitting in their kitchen and I’ll be talking about certain things that they have, and they’re like, “Oh, let me go get that and show that to you.” And I’m like, this is perfect. So I get to see what they’re actually talking about. So there have been some really great advantages from that standpoint of COVID. I would say that our thought process is still similar, we just have to think about it differently for families and what access they have and so forth. So it has impacted, but in a way it’s almost a good impact for us because people are eating at home more.
Ben Caldwell: That makes sense. And what about you? How have you pivoted during COVID?
Emily Roll: Yeah. So as an SOP, I had never provided teletherapy, so I had to learn pretty quickly about all the different platforms and staying HIPAA compliant and all that fun stuff. But yeah, COVID made teletherapy happen rather quickly for my practice. But I did continue to see patients in their homes. Kind of like what Alison talked about, not all of my patients have like a webcam and wifi. So as much as it can make access to care easier, not necessarily for everybody.
But I’ve also had to get really creative in the home, not just on teletherapy, with how I provide therapy, especially when I have a mask. I may be trying to work with someone on their speech, their voice, or their swallowing. Voice therapy, we’re often using tools we have to put into our mouths, which we can’t really do that anymore. Or I might be eating with the patient, now I have a mask on. I did buy clear masks, but I only use them with some of my patients, but I still can’t like touch my mouth or I’ll forget. I’m like hitting my mask.
I think overall I just had to get really creative with how I do my therapy, whether that’d be online or in person. I’ll say one win, kind of like similar to Alison, that I felt like maybe made me a better clinician is I have been trying to get better at the coaching model rather than like, okay, here, I’m coming into your home and I’m going to do this for you. And with teletherapy, since I can’t be there, that coaching has gotten better at that. So it’s made me a better clinician in that way.
Ben Caldwell: That makes sense. Caitlin, you and I are both family therapists. And as Alison was saying, it’s been, in the time of COVID, interesting that you maybe have more of a window into people’s homes than you otherwise might do in-person services. So there’s been maybe some level of advantage here. But how have you pivoted in the time of COVID here to continue providing care?
Caitlin Minniear: Yeah. I think I agree with everybody that COVID hasn’t been fun, but there has been a slight advantage to providing telehealth to people that perhaps it’s harder for them to commute all the time. And in the context of cancer, I can see my cancellation rate and my no-show rates have kind of dropped in that case because in the past, cancer care comes with so many appointments. You’re spending several hours a day in different places at different specialists, just really caring for your body and trying to fight this.
And so when you look at physical health and mental health, if you have to choose between one, mental health is probably going to be the one that you cancel. And so it’s interesting being able to provide more flexibility in terms of hours, in terms of some people just do not have the energy in their day to drive across town to come to your office. And I believe that providing mental health care for this part of your life is so important.
So it’s been kind of incredible to be able to provide more hours for people, maybe like really early hours or late hours where they don’t have to commute and where I can see them in their homes. And the benefit from that is that they’re not having to commute. They’re not even having to walk across the parking lot, which sounds silly, but is sometimes really hard for people to do, to get up the stairs to come see you.
Because sometimes I can just see people at home in their most comfy chair, in their bed where maybe they are eating, maybe they are doing something like that, that they’re actively taking care of themselves and we get to meet and we get to work on the mental health aspect of it. So it’s been really nice. Again, just the family sessions, it enables more people to come.
We don’t have to have so many corresponding schedules to get all the kids in or to get the spouse in or to get the extended family. We can have everybody that’s available in the house sit around you in your bed or your favorite chair and we can talk about the kind of things that will help your mental health, talk about the lifestyle changes that everybody can participate in such as diet. There’s OT exercises. So I’ve appreciated it in that sense.
Ben Caldwell: Yeah, makes sense. My next question comes from Whitney, and it’s for Alison. Why is nutrition not a more popular treatment for cancer or a preventative strategy for that matter?
Alison Tierney: Yeah, that is a really good question. And it is definitely multifactorial. There’s lots of reasons behind that, in my professional opinion. And I think part of it is that there’s just a lack of education about what dieticians can do and what they can help with. And even in my opinion, I think even the other disciplines that are here, like SLPs and mental health therapists, sometimes we don’t actually understand what they can do to help our patients as well.
And we’ll talk about that interdisciplinary approach. But I think sometimes it’s just a lack of education, whether it is to the other providers or to the patients. And so for example, at the cancer center, when someone’s in treatment, they would get a referral to the dietician and then they have the ability to decline my services or not. And then with that being said, I would go and see a patient.
And sometimes I would hear them say, “I know that fruits and vegetables are good for me. I just really don’t want to talk about that right now.” And to have to describe to them like, yes, I understand that dietitians love fruits and vegetables. We do. However, but in cancer care, it’s a very different approach because if somebody is having bowel changes, if they have food aversions and all these other things that could be going on, most of the time we’re actually not recommending fruits and vegetables and those types of things, or we’re going to provide them in different recommendations.
So I think sometimes it’s the mindset of what a dietician is and what a dietician does. But just like so many other disciplines, there are so many different types of dietitians. There are some that are maybe weight loss dieticians or renal dieticians. Our role as oncology dieticians is truly to help somebody improve their quality of life, be able to tolerate more food as they go throughout the course of treatment. So I think it’s sometimes that misconception of what people think dieticians are for.
But when it comes to the preventative side of things, we actually do know from research that having a healthy diet and other lifestyle factors around that, because although I’m a dietician and I’m a food nerd, a hundred percent, I love all the research about it, I’m a big believer that there are so many other pillars of health, just like mental health, physical activity, all of these other things that come with it. And I think sometimes it’s often forgotten that the things that we do at least three times a day, choose the foods that we’re eating actually have such a huge impact in our role of disease.
And again, sometimes that comes from education. I have some people that come to me that have very good knowledge already about how food can either positively or negatively impact a chronic disease. And then I have some people that have not the slightest clue that food plays any role in the development. So for example, most people are very familiar that smoking can be something that drastically increases one’s risk of lung cancer and other types of cancer.
But research shows that only a third of cancer deaths are related to smoking, whereas there is actually a third of cancer deaths that are actually related to diet, healthy lifestyle and overall lifestyle as well. So I think oftentimes there are some things that are very obvious like smoking about the preventative side, but there’s not enough education going around about how we can actually do things in our life every day or just try to improve that can help reduce our risk of developing cancer. And its recurrent.
I’ll be the first to tell you that someone unfortunately could have a perfect diet, they could have perfect physical activity. And I don’t even like to use the word perfect because I don’t think anybody is. I don’t have a perfect diet. But when we really strive to do all the right things, there’s still a possibility that we can develop cancer. So it’s a matter of trying to educate people of the things that are in your control versus the things that are not necessarily in your control to see how we can reduce your risk over time to help.
So I think there’s more situations other than that, but I think the education and just like the lack of understanding of what dietitians do and the availability of research related to nutrition is something that’s really important. And I do think, somewhat unfortunate, but I also understand it, physicians, it’s not even a requirement to have a nutrition course in medical school. Whereas dietitians, most of us all have master’s degrees. We have an undergrad in nutrition.
We’ve been studying nutrition and just nutrition for so long, but yet many people still find that their physician is their primary source of nutrition education when most physicians, unfortunately, aren’t educated in nutrition. And I don’t necessarily blame it on that. I think it’s more of the fact like they’re excellent diagnosticians and treatments and stuff. So it’s kind of again, using that interdisciplinary team appropriately to help really focus on that whole person. So hopefully that helps.
Ben Caldwell: Yeah, that’s really interesting. So it sounds kind of like, for at least some of the who either do or would see a nutritionist, there’s this reluctance out of the expectation it’s almost going to be like going back to childhood and having that unpleasant experience of hearing over and over again, eat your vegetables, eat your vegetables. It sounds like that’s what some people expect out of visiting a nutritionist and you’re saying, “Well, it’s not really like that. That’s not the only thing that we recommend.”
Alison Tierney: Yeah, absolutely. And I think the other thing too is like in overweight and obesity, some people think we’re just going to come and tell them that they need to lose weight, but that’s not the case at all. We actually want them to maintain their weight during the course of treatment because that improves tolerance of treatment. So I think it’s those expectations. And I do think some of it, just kind of like you, Ben, where you go back to your childhood, or maybe people go back to either current experiences or past experience when it comes to their weight or their lifestyle, that they don’t want to be negatively talked about those choices when really we don’t focus on it like that. We figure out, okay, what can we do now to help you improve? And go from there. So I think that’s what’s really hard, is people just have that thought process of what a dietician does. And honestly, before I was a dietician, I didn’t realize all the different avenues and types of dietitians that there could be.
Ben Caldwell: Well, and you all have talked about the need for care to be kind of coordinated. So that takes us to our next question, which comes from Paula. How important is working with other specialties and backgrounds when working with cancer patients? And when should you refer to those particular specialties? Caitlin, I’ll start with you here. And then Alison and then Emily.
4. How important is working with other specialties and backgrounds when working with cancer patients? And when should you refer to those particular specialties?
Caitlin Minniear: Okay. It’s a really good question. And I think the ease with which you refer to other specialties is kind of based on the setting that you’re in. So if you’re within like a cancer center or an integrated healthcare place, usually the referrals are around you and it will be easier if we’re using the same EHR system. You can consult, you can like walk next door and it’s easier that way. But it’s also very doable if you’re in private practice. It just takes a little more light work, but it’s really important. It’s kind of like building a care team. I like to think of it like a superhero team, like they all have like different powers and different focuses. And what that does for the patient is it really enables them to focus on different parts of their health, mental health, physical health, diet.
I really love referring to music therapists and art therapists because it’s such a different way to interact with the experience of illness. You can look at it a different way. And we’re not just talking about anxiety or depression or pain. We’re thinking about creativity. We’re thinking about seeking relaxation and calmness in a different way. I love that. I think the referrals that I use the most would be dietitians. I think it’s incredibly important to nourish yourself. And so I love everything that you’re saying, Alison. It’s just I feel a resistance there too, so I understand exactly what you’re saying. But it’s something that I use. And I consult with medication prescribers. I think it’s really important to be able to understand the side effects and the combination with oncology medications, as well as like antidepressants or anxiety medication, how that presents in your clients.
And I think the other part of it is not just referring out but being able to consult between people is the best way to talk about how your client’s presenting to bring in your client’s culture, their beliefs and really how they’re interacting with their illness. So that everybody’s van have the same perspective and we can support the client or the patient in the best way that brings them their knowledge, and then leveraging their knowledge, their values, and using all of those resources that they already have within them. So very important, to answer that question.
Ben Caldwell: Yeah, absolutely. Alison, I might ask you to focus on the last part here. When should you refer to those specialties? I think this is not just a challenge within cancer care, it’s a challenge in a lot of other sort of areas of health and wellness care as well that you as a practitioner might have a good, clear sense of the other kinds of disciplines and specialties that might be helpful to this client. But it’s a different thing knowing that versus convincing the client to go and being proactive and making those referrals versus kind of waiting for the client to bring up a particular need. How do you draw that distinction? When do you make those kinds of referrals, or is it just automatic?
Alison Tierney: Yeah. The referrals for me are not automatic and I think kind of because just from that individual approach. I think it was Emily who mentioned that cancer patients have so many appointments. So we don’t want to overload them in terms of appointments and so forth. But what’s actually interesting is I refer to mental health very frequently in my private practice and SLPs primarily with my head and neck cancer type patients for the most part.
Now, when it comes to mental health and when I think that it’s a proper referral, it’s just based on talking to that individual. I think actually something that’s really helpful, to be transparent, is that my own personal experience with mental health therapists has been something that’s been eyeopening for me, for my patients. And I think it’s getting an understanding of what they truly do and what they can truly help with.
So for example, there was a patient who was kind of interested in working with nutrition, but kind of talked a little bit about that she has kind of a severe history of emotional abuse in her childhood that drastically affects her eating and her emotional eating. And when I talked to her a little bit about it more, it’s really important to know like, can I actually, as the dietician, help this patient move beyond her food addiction type if she hasn’t seen a specialist for her mental health portion of it? Because I have seen a couple patients before where I just see that block and that barrier that their mental health is blocking them from being able to be successful in their nutrition.
So I think it’s a very much understanding that you have to be able to have that relationship with the patient where you get to know them, you kind of understand what are those things that are going on for that individual and then know that it’s time to refer if you can’t help them anymore. And I think one of the biggest pieces of that, whether it be a mental health therapist, an SLP, a physical therapist, you name it, knowing what those people do in their role and how they can help their patients is super important.
And I think that’s one of the best things that has helped me in my career and in my practice is just really taking the time to learn what other providers do. For example, I work with a lot of females and they’ll have questions to me about maybe their bladder and issues that they’re having there. My experience working with physical therapists is, after I address the nutrition part of it, I can say this isn’t a nutrition problem. This is a pelvic floor or a PT issue. We need to make a proper referral.
But without truly understanding what those providers do, I would never know when to make that referral. And we used to have a program in our cancer center, it no longer exists, but it was a program that was specifically designed for teaching people how physical therapists can help your cancer patients and when to make the proper referral. So we had training in it and I personally seek out, hey, what do you do? How can you help my patients?
And just building that network, especially in private practice, and knowing now with COVID and how our practices often work, I have the blessing to be able to work with people across the country, where if I know that I need specific Wisconsin people or specific states, I need to know how that discipline works for those people too. Does that help answer that question?
Ben Caldwell: Absolutely. Yeah. Thank you. Emily, what about you? How do you draw the… Draw the line is a weird way to put it, but how do you distinguish between when a referral is necessary when it’s going to be offered versus those times when you might kind of wait for the client or the patient to be more ready?
Emily Roll: Yeah. So I think Caitlin said it really well with it really depends where you’re getting those patients at. For my practice, I’m really not seeing patients right at the onset of diagnosis. They are probably going to MD Anderson. But for those SLPs that maybe are in these more rural areas where there’s not a cancer center and they can’t commute there, I mean, I have had that before, where I am seeing the patient in home health and they’re not going to that cancer center.
So if this patient is just beginning on their journey, I would say yes, it’s going to be very, very important for them to get that initial referral to the dietician, that initial referral to behavioral health. You should try to build that team early on, maybe not necessarily later when they beat their cancer and right now we’re just dealing with like a swallowing problem because of fibrosis. That might just be like as the symptoms come up.
But I think, yeah, it’s really important to collaborate with members of the team. Especially if it’s early onset, you’re going to want to make sure that you get the medical records. If you see them in their home, like from the oncologist or PCP, to understand what kind of cancer that they have, that that’s going to impact your treatment plan. So that’s like the most important thing.
You might make referrals to a certified lymphedema therapist. You might make referrals to the dietician, behavioral health and so forth. I have a couple of examples. I’ve worked with counselors and they might’ve told me that a patient had a little bit of anxiety because she didn’t understand exactly why it was telling her something. And so then I’m able to go back to that patient and make sure that I explain that to her in a way that she understands.
Or maybe the dietician might inform me that my patient isn’t meeting their nutrition and hydration by mouth anymore because they’re avoiding swallowing, but maybe the patient didn’t feel comfortable telling me because they know that prophylactic swallowing for head and neck cancer is so important. I know Alison talked about that. That’s why it’s so important that we talk and communicate with each other so that way we can get the full picture about what’s going on with our patients.
Ben Caldwell: Yeah, that makes a lot of sense. excuse me. Our next question, Emily, also comes to you. It is from Arjin who says, for those of us in speech language, I assume that means speech and language pathology, how do we get started working with cancer patients? So for somebody who’s in the field that maybe has been more used to working with other kinds of clientele, really interested in helping patients, what’s the pathway in?
5. How do SLPs get started working with cancer patients?
Emily Roll: Yeah. So later on we have some questions where we’re going to get into like special recommendations for trainings. So I’ll hold off on that. But the most important thing with anything that we decide to specialize is you have to build your competency first. So taking those courses and that way, whenever you speak to other members of the team, you’ll earn their respect and referrals when it’s clear that you understand why you’re making the recommendations and referrals for your patients.
Once you build that competency, at that point you can provide in-services to doctor’s offices, reach out to the nearest cancer center and let them know about the services you provide, especially if there’s a speech pathologist that works there. You can speak with him or her to discuss your trainings and they can maybe refer patients to you that can’t commute to that cancer center. And once providers see and hear about your results, your business will grow from there.
Ben Caldwell: So it’s a matter of building your skill set as well as once you have that competency in place, kind of building your network among this population?
Emily Roll: Exactly.
Ben Caldwell: Cool. Thank you. Alison, our next question is to you. It comes from Wayne, who asks, what positive outcomes can cancer patients see from working with a dietician or nutritionist?
6. What positive outcomes can cancer patients see from working with a dietician or nutritionist?
Alison Tierney: Yeah, this is such a great question. So of course, I believe there are so many great benefits. I’m a big evidence-based individual, and what does the research say? Now, when we’re talking more specifically about cancer patients going throughout the course of treatment, what we really do see in terms of improvement is that nutrition intervention with cancer treatment can help reduce side effects related to treatment.
So for example, if a certain type of cancer treatment is known to cause mucositis or mouth sores, what are things of the dietician can do to help compliment some of the other things that are being done in medical oncology or radiation oncology to help reduce that mucositis or mouth sores so that the patient can feed better? So another example that I’ve given people too is that let’s say someone has diarrhea during the course of treatment.
Now, we know that can result in loss of nutrients, dehydration, et cetera. And sometimes that can result someone to going inpatient, which most people do not want to have to do. So I always encourage people, if I can help you make the right food choices, the right hydration choices, that we can help reduce your diarrhea and get back to normal and prevent inpatient stays, the patients are all for that.
And we also know that nutrition can really help prevent weight loss and malnutrition. Unfortunately now, nutrition, depending on the cancer site and the type of treatment they’re undergoing, malnutrition can be more possible with certain types of like head and neck cancer treatment patients, for example. They’re at much higher risk related to malnutrition risk.
And in fact, like 40% of individuals that have cancer that are going into their cancer treatment might already present malnourished. And malnourishment can worsen side effects, but it can also reduce the amount of treatments that that patient is able to get. So our goal is also to help patients be able to complete their treatment protocol at the dose that it’s recommended for them, because anytime we reduce those doses or have pauses in doses can reduce the prognosis or the ability for that treatment to be able to be effective.
We also see fewer hospitalizations, as I mentioned before, and just overall improved quality of life. And if I can explain that even to a patient, like we’re here to help you live better throughout this course of treatment. It may not be a breeze by any means, but if we can help make you feel better, help you participate in what we would consider normal life activities as much as possible, then that’s a huge win.
And I think about that from personal experience. My mom was a breast cancer survivor and she just wanted to be as normal as possible. And nutrition can help that process and that patient. When it gets into survivorship and so forth, it’s a totally different game, but it’s very similar. We can help people live better quality of lives, improve their energy, how they feel, reduce their risk of recurrence. There’s a lot of great things that can be done in both avenues of nutrition when working with cancer patients.
Ben Caldwell: Our next question comes to Caitlin. It’s from Ellen who asks, what are some of the most effective behavioral health interventions to use with this population?
7. What are some of the most effective behavioral health interventions to use with this population?
Caitlin Minniear:I think it just reminds me of everything else and the things about improving quality of life. And that’s kind of where most of my behavioral intervention from is, first of all, how do we understand what the meaning of cancer is for you and how do we improve your quality of life? How do we increase your cooperation with treatment and just get you through that so that we can take care of the other aspects of your life?
But I think the most useful one is motivational interviewing. And it goes at a long setting because that’s what physicians usually use, is when they give you lifestyle changes, diet changes, and treatment regimen, they often use MI when they’re talking about how to implement this into your life. And so I use it with clients when they come in and they are experiencing resistance or resentment or are just feeling unheard.
So how do we break down these lifestyle changes into smaller chunks and connect it to their values and their motivation to live better and to improve their quality of life. So I find that really effective. I also use a lot of mindfulness and meditation. Using like two to three minutes of mindfulness at the beginning of a session creates kind of a different atmosphere for patients.
A lot of their appointments are hectic or painful or uncomfortable. And so creating that kind of ritual at the beginning of the session gives them just like a sense of calm. It also enables them to use that practice at home. So they consistently do it in each session. It enables those to take mindfulness or small moments of meditation and be able to use it at home, they can use it when they can’t sleep, when they’re feeling really anxious, or even when they’re experiencing a lot of pain. And also relaxation to ground themselves can be useful.
And even in the hospital setting, when they’re sitting there getting a treatment, being able to pull on those skills that you practice in a session is really useful. When I first get to know patients, I use something called an illness story. And it’s basically an intervention of learning about illness and how that is in their family. We basically make a genogram, extend it out about three generations and we just track illness in there. And that includes mental and physical illness.
And we just track, who had what? Who had depression? Where did diabetes pop up? Did anybody have cancer? What were the deaths that were strange in your family? And we track it. And then we can also connect where the messages came from. So if you experienced your grandfather having cancer, what was that experience like for you as an eight year old and how do you see that now that you have cancer?
How did your spirituality fit? Where are your beliefs on the meaning of life, on quality of life, and how does that fit into this whole story? And it’s a wonderful tool to help people not only understand their story, but to reframe their story to really understand who they were before the diagnosis and what this means for them now. It helps them cope with the changing of roles and responsibilities that happen especially when they’re in treatment, when they kind of have to let go and some of the things that brought them strength, that touches their job, like just being a parent. Sometimes they have to let go of that and that can be really painful. So how do we restory that in a way that brings those strengths and uses really their strengths and their values.
And then I think emotional therapy is incredibly helpful for couple distress as well as parent-child distress. So I use that with family sessions. I use that especially with couples. The thing that is overlooked and especially I think in breast cancer survivors is the changing of sexuality and the body. In some couples, it can cause a huge risk. So using emotion focused therapy and really helping each person within the system understand their experience and express their experience can be just so beautiful in helping people understand how they’re changing and who they’re going to be and who they want to be. Yeah, I hope that answered your question.
Ben Caldwell: Yeah, that’s great. There are a number of really good suggestions there. I particularly liked the attention to how patients and their families are making meaning of the diagnosis and the treatment and the transitions in their families that are happening as a result. That’s great. Our next question. I think, Alison, you already answered this one, so I’m going to skip this one and go to the training question, because I’d like to hear from everybody on this one before we run out of time. Do you recommend any special trainings for those wanting to work with cancer patients? Alison, I’ll start with you, and then Caitlin, and then Emily.
8. Do you recommend any special trainings for those wanting to work with cancer patients?
Alison Tierney: Sure, absolutely. So at least in the field of nutrition and dietetics, it kind of depends on where somebody is in their path to becoming a dietician or how long they may have already been a dietician for. So for example, I actually went back to school to become a dietician after a different degree and career. And I went for the purpose of wanting to be an oncology dietician.
So when I went to school, I told my advisors and my professors, like I want every experience possible in oncology, because oncology nutrition unfortunately it is definitely a specialty where there’s not that many of us. So I wanted to get that right on the books, like this is what I want to do. I’ll take any experience. And then I was actually willing to drive for that experience too during school. So that helped.
So getting every experience possible, especially if you’re still in that path of becoming a dietician. But to be honest, a lot of my learning in oncology was actually self trained. So if someone specifically is a dietician, there’s a book from the Academy of Nutrition and Dietetics that’s called Oncology Nutrition for Clinical Practice, and that’s available to really anybody but dieticians it’s focused on.
And I kind of just studied that book back and front and was able to thankfully be in an internship with oncology and then also transitioned into an outpatient oncology dietician right from that internship. So I was able to apply the things that I was already studying on my own to be able to do that. So if somebody is already a dietician that wants to get cancer experience, what I would really recommend is if they have a current job, I mean, asking their supervisor to get some experience, either in an outpatient cancer study or getting an experience when they’re inpatient in that oncology ward, that can be super helpful.
But the Oncology Nutrition for Clinical Practice book is a really great place to start and it’s the most effective way to study for what’s called the CSO exam or the Certified Specialist in Oncology. But you definitely have to be motivated to seek out your own opportunities if it’s something that you really want to do.
Ben Caldwell: I appreciate that you said the name of the book again, because I know people always say, “Wait, what? What was the name? I want to get that down.” So one more time for the people who want it.
Alison Tierney: So it’s Oncology Nutrition for Clinical Practice and it comes from The Academy of Nutrition and Dietetics.
Ben Caldwell: Excellent. Thank you very much. Caitlin. What about you? Any special trainings for those wanting to work with cancer patients?
Caitlin Minniear: I feel that cancer care sometimes sounds scary to people because you feel like you need to understand everything about the process and the treatments to be able to talk to your clients, your patients. But I think that everything that we learn is very translatable and useful. The only thing I would say reach chains, and not as specific reach chain because it’s definitely specific to the person that you’re talking to.
I’ve seen wonderful transformation in the end of life people where they interact with their spirituality and whatever that is. And so I believe taking a very client-led approach and being comfortable talking about grief is important. And one note about that is that something that I’ve often heard is that people are just frustrated with everybody in their life wanting to make it positive.
And that’s natural, that’s human. We want our loved ones to get better and to feel good. And sometimes people just need to be sad. And so being able to sit with those really hard emotions and interact with their specific spirituality, whatever that is, is important. So being comfortable with grief. It also recommends being really comfortable in calling and learning how to do mindfulness with clients.
It really models it for them and they can really sense it. And it’s so helpful for anxiety and for pain management. So any type of training, I would say, just practice. There are so many cool YouTube videos, and after you could just turn it on and just practice doing it for two minutes a few times a week. It’s really easy and it’s so helpful.
Ben Caldwell: Sorry to interrupt. Is there any particular grief training that you would recommend?
Caitlin Minniear: I would say no, not off the top of my head. I think A Grief Observed is something that has hit me as a book and also at use for clients. I’ve also used Oregon’s grief model with clients. But again, I feel like a lot of people come to me and they’re exploring this part of their lives, often when it’s a terminal illness. And so they often bring me things and we go through it together. Even if it’s not something that fits with my values, we explore together and we make it work for them. And then I think the last thing I would say is any type of training that you can get, which is kind of a hard one to say, but where you understand the experience of physicians in the medical world.
So how physicians speak, how fast their days are and really understanding that can help you translate that to your clients and build advocacy and self agency for them. And so that can be just consulting with other physicians, asking them explicitly, how do you want me to communicate with you and how are you seeing the client’s problems? So that you can go back to your client and help them build that self agency. There’s a book called Models of Collaboration by David Seaburn and many other wonderful writers that really goes into the different kinds of settings that you could be in with healthcare and how you can collaborate with both physicians and patients that I have found really helpful.
Ben Caldwell: Excellent. And that book again was Models of Collaboration, right?
Caitlin Minniear: Yeah.
Ben Caldwell: Excellent. Emily, what about you? Are there any special trainings that you would recommend for those wanting to work with cancer patients?
Emily Roll: Yes, definitely. I have quite a few. Going back kind of to that question before for those willing to get started working with cancer patients, there’s lots of CEUs, just general CEUs. You should start taking anything related to oncology and in that cancer, laryngectomies. But specific courses that I would recommend is the Preparing SLPs for Tracheostomy and Ventilator Care by Dr. Jamie Fisher.
The CEUs that are going to be training you in respiratory muscle strength training, also known as RMST. I’m sure lots of SLPs here, anyone listening has heard of RMST. And then definitely getting certified in the McNeill Dysphagia Therapy Program, also known as MDTP, to treat dysphagia for swallowing problems. The amplification resistance and kinetics of the jaw, also known as the RKJ program to help treat trismus.
And lastly, lymphedema therapy. I know the Norton School has one specifically for head and neck, but you can also get certified as a certified lymphedema therapist. So yeah, there’s quite a few, but I think that all of those specific ones would make a provider or another speech pathologist in a cancer center really comfortable with sending patients to you.
Ben Caldwell: That’s a wonderful. Thank you. I know we are just about out of time for today. You all have had wonderful comments, suggestions, recommendations. So I’m really, really appreciative. Caitlin, Emily, Alison, thank you once again for giving us your time, your expertise today. In about 30 seconds for each of you, is there anything that we haven’t covered yet today that you want to make sure people are aware of, either about kind of coming into cancer care, collaborating across disciplines, working with your discipline? Anything like that that you’d like to add before we call it an afternoon? Caitlin, I’ll start with you, and then Alison, and then Emily.
9. Anything like that that you’d like to add before we call it an afternoon?
Caitlin Minniear: I would just say take care of yourself. This is really hard work. That it’s important. And as I mentioned before that illness story, try it on yourself. See how you interact with illness and how that’s shown up in your life and it will really help you sit with those really hard sessions. So just take care of yourself, and everybody can do this.
Ben Caldwell: That message that everybody can do this I think it’s a really important message. I’m appreciative that you’re mentioning it. It’s probably worth reinforcing here. There’s some reluctance among practitioners sometimes to get into this kind of care and there’s certainly ample need there. I appreciate the reminder. Anybody can do this kind of work. And taking the recommendations we’ve talked about today can help people to kind of find their way in. Alison.
Alison Tierney: Yeah. I actually really want to kind of piggyback off of what Caitlin said, because I think it’s important to understand how you go through your emotions as that provider. Because there are some really hard things that you might experience with patients as you develop a relationship with them, and it’s a fine line of that relationship. And if you hear of someone’s passing or you hear of maybe progression in their disease, sometimes it might hit you pretty hard too, but you also have to be that strength and know that mine. So I think that’s super important. But when it comes to cancer care, obviously I mentioned like that’s what I wanted to do. I was dead set on it. But it’s also so joyful because you do get to see a lot of amazing things that happen.
Even people that take their disease, their diagnosis, and like turn it into like this amazing thing afterwards. And they change their own life and the lives of others around them. So there are some really, really beautiful things that happen within it, although there are hard times. And then the only other thing that I wanted to interject is keep learning the people around you and your interdisciplinary team, because I couldn’t imagine where my practice would be if I didn’t have those individuals around me and to teach me and to grow. Especially when I was a brand new dietician, I learned so much from the other disciplines to help me in my own practice.
Ben Caldwell: Thank you so much, Alison. Emily, we’ll give you the last word here.
Emily Roll: Yeah. So kind of just going off of what Alison just said, one thing I found with my practice to be really challenging but also extremely rewarding is looking up other providers in your area, whether it be physical therapists, dietitians, anyone at the behavioral health realm, because it will surprise you how much you can learn from each other. It will surprise you time and time again when you hear back from them and how eager they are to tell you about what they do and how they can help your patients. It’s a lot of work, but when you finally build that team of professionals, it’s very rewarding for you and your patients.
Ben Caldwell: Well, thank all of you very much. It’s been wonderful having you here with us today. As a reminder, this recording will go out to all of our registrants in about 24 hours. And on behalf of all of us here at SimplePractice, we just really appreciate all of our panelists time and expertise. And those of you who have joined us this afternoon, we appreciate your joining us today. We look forward to seeing you again soon. Take care.