SLPs Role in Palliative Care and How to Have Serious Illness Conversations

SLPs Role in Palliative Care and How to Have Serious Illness Conversations

[00:00:00] 

Intro

Kate Grandbois: Welcome to SLP nerd cast your favorite professional resource for evidence based practice in speech, language pathology. I'm Kate grant wa and I'm Amy 

Amy Wonkka: Wonka. We are both speech, language pathologists working in the field and co-founders of SLP nerd cast. Each 

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Kate Grandbois: Welcome to SLP nerd cast. We are so excited to welcome today's guest. Welcome Megan Holmes. 

Meghan Holmes: Hi, guys.

Thanks so much for having me. I'm so excited. 

Amy Wonkka: We're excited, too. Uh, you're here to discuss the SLPs role in palliative care. But before we get started, could you please tell us a little [00:02:00] bit about yourself 

Meghan Holmes: or I graduated from Northeastern University in 2016. I did the accelerated bachelor's masters there.

Um, and since then, I've worked exclusively with adults and geriatrics kind of across the continuum of care. I've done skilled nursing facilities, home health, uh, a long term acute care hospital. And I'm now working in an acute care hospital in central Massachusetts.

Kate Grandbois: We're really excited about this. We had a lot of really, um, interesting conversations before we hit the record button about how. This topic of palliative care might not be obviously related to what we do as speech language pathologists, but as you're going to tell us soon, this is much more related to the role of the speech pathologist than you might think.

So there's a cliffhanger there, and I'm looking forward for you. I'm looking forward to you filling in more information. But before we get there, I do need to read our learning objectives and our disclosures. I will get through those quickly, and then we'll get on to the good stuff. Learning objective number one, [00:03:00] define palliative care.

Learning objective number two, describe knowledge and skills specific to the SLP role that can benefit patients, caregivers, and clinicians navigating serious illness. And learning objective number three, identify at least one communication tool that uses patient tested, person centered language as a framework for discussion around serious illness.

Disclosures. Meg's financial disclosures. Meg received an honorarium for participating in this course. Meg receives a salary from UMass Memorial Health and Worcester State University. Meg's non financial disclosures. Meg has personal experience with palliative and hospice care. Meg is also a member of ASHA SIG 13 and a member of the Dysphagia Research Society.

Kate, that's me. My financial disclosures. I am the owner and founder of Grand Bois Therapy and Consulting LLC and co founder of SLP Nerdcast. My non financial disclosures. I'm a member of ASHA SIG 12 and I serve on the AAC advisory group for Massachusetts Advocates for [00:04:00] Children. I'm also a member of the Berkshire Association for Behavior Analysis and Therapy.

Amy Wonkka: Amy, that's me. Financial disclosures. I am an employee of a public school and co founder of SLP Nerdcast, and my non financial disclosures are that I am a member of ASHA. I'm in Special Interest Group 12, which is AAC, and I participate in the AAC Advisory Group for Massachusetts. Advocates for children.

All right, Megan, as Kate mentioned, before we hit record, we talked a little bit about the audience for this specific episode. And like, in my mind, when I think about palliative care, I'm thinking about geriatric clients, but it turns out I'm not super correct in that thought. Um, so could you start us off just by telling us a little bit about how, if you're an SLP and you're listening and you think this topic doesn't apply to you, In fact, it probably does.

Meghan Holmes: Yeah, I think, you know, palliative care is just an extra layer of [00:05:00] support that can be, you know, given to a patient at any stage of a serious illness. But realistically, it's just those are your big picture doctors. And so they provide what the healthcare system and what, uh, the overall school system, I think, claims to provide, which is person centered or client centered or student centered care.

And so if you are an SLP and you work with people and patients and clients, like those tools that we're going to talk about, I think are going to be helpful for you. 

Kate Grandbois: And to sort of start us off with defining palliative care, you've just given us a generally a loose description of what it is. It is different than hospice care, or it is not different than hospice care.

I feel like I've experienced some confusion around that delineation just in my personal life. Can you explain a little bit about the difference between those two 

Meghan Holmes: things? Yeah, so palliative care is not necessarily end of life care in the way that hospice is [00:06:00] hospice in order to qualify for hospice. You know, you need to have a terminal illness with less than six months of life expectancy.

Whereas palliative care is focusing on symptom management and quality of life. And so that can be initiated at diagnosis. Um, and so I think that the current model And, you know, the United States healthcare system is exactly the way that you currently understand it where palliative is like this bridge to hospice, but that's not necessarily true.

Amy Wonkka: So, does the role of SLP. The role of SLP who are working to support palliative care is that does that look different depending on the setting that you're in like we I know we've talked about nursing homes we've talked about schools. Um, I know your experience is primarily with geriatric clients, but, uh, do you, can you give us sort of a view of how that might look depending upon the setting that you're in?

Yeah, 

Meghan Holmes: I think that, um, [00:07:00] specifically with adults, you are going to be working with patients who are at very different stages of their illness. Um, like my job is working in the acute care hospital. And so oftentimes that I see them when they've had an exacerbation of their serious illness, they've had some sort of setback.

And so that's kind of. a prime opportunity for them to step back and be like, Oh man, like this is going to keep happening. What do I want next time to look like? Um, if you're working in a skilled nursing facility or home health, I think that you are seeing more of the day to day, like more stable and controlled symptoms of like, Hey, are you happy with how this is going?

Um, I know. You know, 60 percent of adults have some sort of chronic illness and what blew my mind when I learned that fact was, you know, when I am reading a history of a patient, I'm like blowing past all of these [00:08:00] illnesses that are listed on my go. congestive heart failure, diabetes, hypertension, hyperlipidemia, not super related to dysphagia all the time.

And so I'm like skimming it. I'm like, Oh my gosh, this person has four chronic illnesses that they have to manage every single day. And, you know, I think that remembering that we are treating an entire person and not just, Hey, I actually only care about the part of you that is relevant to me is really important.

And just 

Kate Grandbois: going back to what we said at the beginning, having now a better understanding of what palliative care is, this could absolutely be part of what an SLP in a school needs to be aware of, or in a pediatric setting outside of what you've listed, you know, still nursing facilities, acute care, all of those kinds of things.

Because if you're really trying to support a family or a child or a person with a chronic illness, People live with chronic illnesses and in many places in many, [00:09:00] they experience treatment in many settings. Is that a fair assumption? Oh, 

Meghan Holmes: absolutely. Yeah, I think, you know, remembering that everybody that you're interacting with is dealing with more than you can wrap your head around makes you a better clinician.

And so, you know, having the ability and the tools to remind them that they do have more control than they think and kind of empower them to say hey what's been given to you so far is a recommendation based on this goal. Is this your goal also? And making sure that you're You know, advocating that their care gets adjusted appropriately in that way.

So you've 

Kate Grandbois: mentioned, you've already started mentioning, or you've touched on some of the things that an SLP might need to do in terms of skillset to support someone with a chronic illness. I'm assuming that counseling is also a piece of this. Can you tell us a little bit more about the knowledge and skills needed for an SLP [00:10:00] or even an SLP who might be listening and thinking, I work in an elementary school, but I'm already thinking of my My little client who's in kindergarten and kindergarten, who's living with a chronic illness.

What kinds of knowledge and skills do we need when we're, when we can identify that we're working with someone with a chronic 

Meghan Holmes: illness? Um, I think the quickest and easiest answers are of course, you know, compassion and patience and knowing that. Anger is never anger, right? Anger is often like fear or sadness or a lot of things and being able to take a step back and remember that, like, in this conversation, I am the face of a problem.

I am not the problem, but I am like the person that this family or client or child is interacting with who, like, if they're mad at this situation, like. I'm here for that. And trying not to take that [00:11:00] personally, remembering to breathe, and I think using some sort of structured interview strategies has really helped me pull myself out of it, because I think You know, while empathy is important, leading a difficult professional conversation with empathy is too emotionally draining to be sustainable.

And so the kind of framework that I fall back on a lot is the, from the Ariadne labs, the serious illness conversation guide. Um, and I can email that to you guys so that your listeners are able to have, um, a copy of it, but it's available online. Um, And it basically is intended to be not a script, but just a framework like training wheels of, Oh my gosh, we have this super tough thing to talk about.

Where do I even begin, and how can I possibly as an SLP as you know, not the doctor as not the [00:12:00] whoever, what am I supposed to do about this, but you know, we still have a lot of value as clinicians. Because. We especially in the adult setting are working with communication and thinking and eating. And those are really, really important in terms of quality of life.

Um, and so I do think that it's important that we insert ourselves into those conversations because Probably nobody else is going to 

Kate Grandbois: You mentioned an interview or using a structured interview. Is there a format for a structured interview?

That's specific to supporting someone. In palliative care, or are you referencing just using structured interviews in general to make sure you're providing person centered care? What does that interview process look like? 

Meghan Holmes: Um, I think. What I'm referencing is using, um, that particular framework that breaks a [00:13:00] conversation kind of into steps.

Um, and, you know, the first step is just to kind of announce like, Hey, I want to talk about this today. Is that okay? Like, um, And, you know, for somebody who, let's say they have Parkinson's disease and their Parkinson's has really started to advance to the point that they're having trouble swallowing. I'm like, Hey, you know, I want to talk about how your disease has impacted your swallowing.

Are you up for it? Is that okay? You know, you can pick language that feels natural to you. Again, this format is not intended to be a script, but you know, and then you check in with the family or the patient or the client and you're saying like, tell me what you understand about where we're at with your swallowing and why we're talking about your swallowing and what we're worried about so that you can kind of hear what they have retained, what over the course of what you have hopefully already educated them about at least a few times, [00:14:00] so that, you know, if you are just monologuing at them and telling them something that they already know, they don't have any buy in into that conversation and they think that you're not going to listen to them.

And so opening the conversation by saying, tell me what you know, tell me what you think, that can be really important and really helpful and really valuable and people are going to really appreciate it. Um, and so I think I'm just trying to open the guide right now so that I can make sure I'm not skipping any steps or anything.

Um, but I think that, you know, people freeze in these tough people being SLPs and clinicians freeze in these really tough conversations because they feel like they don't know what to say. Um, and they don't want to say the wrong thing. You know, it's coming from a. Kind place and so, you know, if you have tools to be able to navigate it, then that helps a great deal.[00:15:00] 

Kate Grandbois: In thinking about working with someone and supporting someone who has chronic illness and understanding that there might be caregivers involved, or as you mentioned, grief or anger, um, moving through those conversations with sensitivity is so important. And. I love the idea of a framework. We love a good framework here on the nerdcast.

We talk about them all the time. Um, but knowing that there are frameworks or structured components out there to help with that is incredibly helpful. So we will make sure to link that reference in the show notes for anyone who is listening. 

Meghan Holmes: Perfect. Yeah, I totally agree. And I think it, I have gotten better at it, but I still stumble, right?

Like these are really, really hard topics. Um, and you know, you mentioned grief and one of the topics that comes up a lot in the acute care setting is anticipatory grief, which is either, you know, the [00:16:00] loved ones grieving before somebody is gone, or even just like, if you have a progressive illness, you're kind of.

Preemptively grieving the loss of functions that you know is coming. Um, and, you know, trying to navigate grief in an SLP role and not like a social worker role or, you know, we have some amount of counseling training like that's heavy and I do think it's important that we, you know, have. Tools to help us.

We have frameworks to guide us and we know when to back off and when it's not our place anymore. You know when it's going to potentially cause more harm, either to us or to the family because we're out of our depth. So, I do definitely want to make sure people are. careful and checking in with themselves, make sure that they're not going to overstep and cause themselves any harm.

[00:17:00] Um, cause burnout is very real and compassion fatigue is very real. And, um, if it can be avoided, it should be. 

Amy Wonkka: I, I a thousand percent agree. And I think, you know, we've had some other folks on the podcast in the past talking just about. How really, really important that is that self care and that self awareness and those strategies for ourselves to be able to check in with ourselves and monitor ourselves, and make sure we're taking care of ourselves so that we can effectively do our job for our clients.

So that's, that's a very important point that I think we can't emphasize enough. I guess I also had a question. Connected to what you were saying in terms of like, we're not social workers, and we're not, you know, these other types of providers, how do you collaborate in your role, at least with other health care professionals, like physicians or nurses or social workers or counselors?

Do you collaborate? Is there room for that kind of in providing wraparound [00:18:00] service? And what What might that look 

Meghan Holmes: like? So I am definitely very spoiled to be in the acute care setting because palliative there's a palliative team, right? Like there are dedicated providers and social workers who like this is their whole jam.

And so, um, they are a consult service that the primary medical team can engage. And so, like in some of these, yeah. You know, big family meeting type situations, they are guiding it and so I get to sit there and like, wait to be called on to say my piece instead of leading, you know, hospice is covered by most insurances and palliative care is not.

And so I do think that, you know. SLPs who are not in the acute care setting or not working in an outpatient clinic that has access to a palliative team are a lot more on their own with this kind of thing. And so they need to be [00:19:00] collaborating with the primary medical team and the social workers to be like, hey, this patient told me this.

And this is how our conversation went. Do you want to come with me next time this comes up? Or, um, do you feel comfortable calling this patient's family about this thing? Like, should I do it? And kind of figuring out who's taking lead on this, um, because I think what I realized, you know, the acute care setting that I work in is also a teaching hospital.

So I'm working with a lot of interns and residents who are like, yeah, yeah, you do it. Like, I don't know. And, and I appreciate that because I, you know, they want to learn and they want to be able to offer this service and. They feel out of their depth. And so they're turning to me. And so I would encourage your listeners to also when they feel out of their depth, think about who on that interdisciplinary team they can turn to, to take lead and what they could offer.

Kate Grandbois: And that also sort of makes me think about the role of the [00:20:00] SLP, because I have to presume if you're Lucky enough to be able to work as part of a team and have other disciplines at your disposal, you're bringing a wealth of knowledge related to, as you mentioned, communication, swallowing that the other professionals may not have.

How do you tailor some of these skills to? Individuals with different skill level. I'm just sort of bringing this back to this concept of person centered care and interviews. So for example, if you're working with someone who's in cognitive decline, but has palliative, but is in palliative care, how do you approach and adapt your person centered care interviews or your communication style?

How does that change how you approach a case? 

Meghan Holmes: I think you're bringing in. More stakeholders, I think, to somebody who has experienced [00:21:00] cognitive decline, um, you know, one line that I think it's very important for SLPs to draw is, you know, I have often been asked, Hey, can you do a cognitive evaluation on this person to figure out if they have capacity to make medical decisions?

No, I absolutely can tell you information about this person's attention, memory, all of these types of SLP related things. But capacity, the ability to, you know, Make a decision like that has to be determined by a physician. And so I think that if everybody on this interdisciplinary team is like, Hey, you know, Mr Smith here might not be able to make his own decision.

You know, you're having these conversations, maybe still including Mr Smith. but probably focusing more on the health care proxy and the health care agent, the person who is going to ultimately make that call. Um, I'm thinking of specifically [00:22:00] patients with dementia. Um, you know, the overall goal of palliative care is to improve the quality of life and I think that there are definitely stages of dementia where being a part of those conversations is more distressing than it is helpful because they are confused and so they're hearing for the first time it feels like I'm dying.

What? And so that is not going to be, first of all, productive or kind like you are causing undue stress. to your patient, your client, the person that you are allegedly caring for by involving them in something that they don't have the capacity to do. So you're shifting this kind of framework to be targeted more at family members and or you hope family members, but healthcare proxies in general.

Um, And I think that, you know, that adds almost a new [00:23:00] layer because every family has very different dynamics, and it's, you have to come into those conversations without judgment. Especially me in the acute care setting, I'm often meeting somebody for the first time and interacting primarily with like their spouse or their child or somebody who has known them for longer than I could ever imagine.

And so I say, listen, like my expertise is in swallowing, but your expertise is in your mom. And so we have to kind of work together so that we can make a plan. Um, and you know, Reminding them that we're on the same side here and we absolutely have the same goal, making sure that they feel heard. 

Kate Grandbois: That brings me to a question about how you communicate and support the family.

So if you are dealing primarily with, uh, a spouse, a partner, a caregiver, a care partner, I recently [00:24:00] learned that that's a preferred term care partner or their, or their children, their adult children, how are you? Counseling them in terms of how to support them in palliative care, because I have to assume in your setting or in any setting, you know, we're allotted one visit a day.

I don't know what your service delivery models look like in acute care because I've never worked in acute care, but thinking of any speech pathologist, we're not with these families all day. How are you providing education to the care partners in these, in these instances? 

Meghan Holmes: It's certainly easiest when they are visiting the patient and they are in house and I can just be like, hey, I'm the SLP.

However, that's certainly not always the case. And so I spend a good amount of time on the phone in these types of conversations specifically, especially when The medical team has asked me to because in the acute care setting, you [00:25:00] know, the point family or the primary care partner is usually updated at least once a day.

And so, you know, whether that be a nurse or a doctor like. That person is expecting a phone call from the hospital. And so if I'm like, Hey, when you talk to this care partner, do you want to bring this up? Or do you want me to make a separate call? And then, um, that's kind of what the plan ends up being. I think that the bigger meetings where like a palliative provider is present or, and a social worker and a case manager and the primary team and me and anybody else, those are usually.

Scheduled separately. And so, you know, that is all right. I know that on Friday at 10. I'm going to be in this meeting. Um, and Having that conversation

Amy Wonkka: about assessment, can you help us at least within the like acute care environment? [00:26:00] Like how, how does your assessment change with the incorporation of a palliative care component or how might it change over time with the same client? Um, what might that look like? 

Meghan Holmes: Sure. So my, you know, primary focus in the acute setting is swallowing.

It's dysphagia. And so, you know, I think that because I'm so passionate about palliative care, I've started to incorporate this in pretty much every assessment. So they don't look super different, but they do look different than past Megan's assessments. So I can talk to that. So I think that There is a lot heavier focus on education where you're saying, Hey, like, you know, we're worried about swallowing because we're worried about potentially pneumonia when you're in the hospital already.

Or if your immune system is battling other things, you might not be very good at fighting off a pneumonia. Um, and I have found that it's [00:27:00] important to say the word fatal and like. You have to make clear, like, hey, when you are making decisions for yourself and your own body and your own life, like, I do need you to understand that potentially you are making a life limiting decision.

Um, so I do think that saying like, hey, I have concerns about the safety of your swallowing. I have concerns about your ability to meet your nutritional needs. Um, and so. I had heard I'm not going to be able to remember who I heard this from, but I heard a quote that was basically if you don't provide choices, then you can't get consent.

It's just coercion. And so I loved that, especially in the dysphagia world. And so I'm like, Hey, I Based on this goal of making you live as long as possible, recommend that you don't eat or drink anything and get a feeding tube. However, your other option would be [00:28:00] to eat and drink, even though we're acknowledging that you're probably going to aspirate sometimes, even though we're acknowledging that that aspiration could lead to pneumonia, which could ultimately lead to your death.

And like, being delicate, but clear about the way you're presenting that. I love that 

Amy Wonkka: quote, by the way. I'm sorry. I just jumped in front of Kate. I see you unmuting, but that, that is such a great point, right? We're not, we're not providing options if we're not providing all the options. And I think also. I, I'm going to ask you to circle back on the, on the, on the difficult conversation matrix and tell it or framework and tell us a little bit more about that.

But I think something like that must be very helpful in having those types of conversations where you do use words like fatal and we don't kind of dance around the topic. And I'm thinking, you know, I'm, I'm not in a position where I'm having those conversations. I don't work in dysphagia. Um, [00:29:00] However, I think a lot of these ideas are broadly applicable to all of this.

We talk in euphemisms all the time, you know, I mean, even in special education, you know, we being able to come out and be transparent and provide actual options, like actual choices and be clear about what we're really talking about. Has got to be only beneficial, but also stressful to begin having those conversations in that transparent manner.

Kate Grandbois: I want to piggyback on that. I want to piggyback on that quickly because I, you've just made me think of something else in, in terms of that transparency. I think one thing I have experienced a lot in my career and that I have seen a lot is. Our hesitancy to provide clear prognosis. And I think, you know, because it's because it's bad news, you know, no one what, in your example, we don't want to hear that, [00:30:00] you know, you can aspirate and die in pediatrics, outside of something medically.

You know, medically threatening or life threatening, we might say, you know, you're the likelihood of you developing oral speech is low based on X, Y, and Z. I feel that as clinicians. And maybe this is my professional culture. You guys could correct, you could, you could disagree with me completely, but just the, the willingness to be clear and provide information about a less than favorable prognosis, something that I am realizing right now that I have avoided my entire career.

I mean, it's, and I have watched other people avoid it 

Meghan Holmes: too. Yeah, I think that the best again I will come back to the framework I promise, but the best tool, or the best little clip it that I got from there is the phrase, I wish I worry, or I hope I worry. And so it's like, I hope. that you [00:31:00] do develop oral language someday.

However, I'm worried that you won't because of XYZ. And so you are joining them in some of the grief of like, this is a bummer. Like, I know that this is what you wanted and I wish that I could tell you that it was possible, but I think we need to manage expectations so that we can set goals together. And so, you know, from a serious illness perspective, you're like, I hope that when this infection clears, then your swallowing improves.

But I'm worried that because the swallowing difficulty is because of a progressive disease, that this might be as good as your swallowing ever is. And so, you know, using that, I hope, I wish it's like, yes, I, I hear you. That you want that, and I want that for you too. And I'm so sorry. But making sure that they understand kind of what the situation is so that they also know where you're coming from when you're potentially bringing up, like do you wanna consider.

Non curative types of [00:32:00] treatment now. Um, like that's really hard to hear if you're not in a spot where you are ready to be like, Yeah, this progression that I have been afraid of is here. And now I have to like make some choices. I think that the SLP is who are focusing on dysphagia with a lot of these.

you know, chronic, progressive, especially neurodegenerative diseases, swallowing is kind of like the crossroads where if that starts to become a problem, oftentimes that is the stage of disease that patients are ready to be thinking about hospice, where they're like, Oh, hold on, this is close to the end.

But I think it's extra hard when, if that's one of the first functions to be impacted. And it's like, hold on, like, if you didn't, um, like I think they, they're less prepared for that type of conversation when diagnosis is really new or something like [00:33:00] that. I think that the clients and families that have An easier time with these types of conversations and are more ready to hear it.

Or it's like, yep, like they were diagnosed with dementia 20 years ago and we've been told to expect this day and I hate that it's here. And it doesn't make it better or less hurtful that they were ready, but does start the conversation more easily.

All right, so I can talk a little bit, uh, have it up now, the Ariadne framework now, if you want me to go right into that. Yeah, I would love you to. Okay. 

Amy Wonkka: Just because I feel like it's, it's going to be very broadly applicable. This is my, like, projected, 

Meghan Holmes: projected view, but we'll see. Okay, perfect. So again, this is from the Ariadne labs.

They focused on, you know, they tested all of this language with patients to make sure that it was clear and like agreeable to patients. They were coming at this specifically from serious [00:34:00] illnesses, but Amy, spoiler, you're right. It's applicable to a lot of people. So the first step is set up the conversation.

That was kind of what I had started talking about, where you're introducing the purpose and asking permission. It's like, hey, I'd like to talk about what is ahead with your illness, do some thinking in advance about what's important to you so that I can make sure we provide you with the care you want.

Is this okay? And they have the is this okay, bolded because everything leading up to that point is not supernatural. Like I am consider myself to be fairly well versed in these types of conversations, and I would never talk like that. And so, you know, you do want to take the step and take the principle and put it in your own words.

Because you're a human having a conversation with another human and you want to make sure that other human knows that that is happening. And so once you have set up the conversation, you know, everybody who's present is aware of what is about to be discussed. That's when you're [00:35:00] assessing understanding and preferences.

You know, what is your understanding of where you are with your illness? Tell me what you know about why we're here today. Tell me what you know about, you know, the concerns that we have so far. Um. And then the other factor that they recommend is how much information do you want to be given today? Like, you're kind of checking in and saying, what, what kind of headspace are you in?

Are we having like big talks or do you want to just kind of gloss over this? And both are okay. I think when I've. I learned a lot about this particular topic, palliative care in general through, uh, actually a nursing education program through my hospital that's interdisciplinary. And so the palliative doctor who was giving this presentation, she was like, just because the conversation didn't go the way that you wanted doesn't mean it wasn't productive.

This is supposed to happen over the course of many, many [00:36:00] conversations, you will have this exact framework, many times, you know. Especially in the hospital. Maybe this is the first exacerbation of their illness and you're like, wait, hold on. Like, I'm not ready at all to be talking about the end when we just got here.

And like, that's okay. But maybe next time they're hospitalized hopefully years from now they're like, Oh, I remember like we did start to talk about this and over time, you know, they have it kind of. That seed planted in their brain of like you get to pick like you don't have any control really over your illness in the course that this takes but you do have control over where your life goes in this point and so reminding them continuously like this is about you we're here for you you get to choose um is very very important very powerful um and the third step is sharing prognosis and so when you're in The hospital.[00:37:00] 

Again, I'm a spoiled brat because I get to sit back and say, I'm going to defer to the medical team to let you know about the overall medical picture, because I do also firmly believe that that is not my role. I am not a neurologist, I am not, you know, a pulmonologist, I don't know enough about the disease to be able to give a life expectancy.

And so like, you know, I don't think that SLPs should feel pressured to make that kind of claim because that's not within our scope at all. And so what we can do is share prognosis about something that we can diagnose. And so we can diagnose dysphagia. And so I'm like, you know, I can say, I wish I worry. I hope that I'm worried.

And You know, one family meeting that I had somewhat recently was, um, I had a patient who had Parkinson's that was [00:38:00] fairly advanced, and he fell and he hit his head and so the like acute issue was that he had. A subdural hematoma because he fell and hit his head. And so the ICU team was very much like, well, like once this gets better, then he'll be back to his baseline, but that's not really how chronic illnesses work.

And I suspect that they know that also, but it's like, you don't go back to your, the baseline you were at where I have a new baseline. And so in talking to this patient's family, I learned, oh yeah, he's been, you know, He's been hacking his brains out for meals for like weeks and weeks and I was like, it's interesting.

Okay. And then they're like, yeah, he, I think he's had pneumonia. What is it? Is it six times in the past couple of years? And I'm like, okay. Okay. So like maybe this isn't a subdural hematoma issue. Maybe this is a Parkinson's issue. And so the, I hope I worry that I got to use was like, I hope that as he gets some strength back after this injury, you know, [00:39:00] He does feel strong enough to eat again, but I'm worried that these exact examples that you told me, you know, the coughing during intake, he's already had pneumonia a bunch.

We know that Parkinson's impacts is swallowing. I'm worried that all of the things. That preempted this fall are working against him. Um, and it did kind of shift the conversation a little bit to be like, Oh, okay. So like, yes, this is one isolated incident. Anybody can fall and hit their head. But the person who fell and hit their head is somebody with an advanced chronic disease.

And so that's kind of what we need to be talking about. Um, so I do think that a sharing prognosis ends up being Yeah. The scariest part. Um, and my advice for the students that I take in the hospital is silence is your friend. Like you need to let the people that you're talking to process what you've just said.

Um, I [00:40:00] still actually from this palliative care course. The nursing education course at the hospital, I stole an activity and used it when I was teaching this Asia, where it's like partner up, and one partner has to say, talk about something that's important to them for five minutes, and the other partner can't say anything.

And it's a really cool exercise because you realize how often you want to jump in and be like, I. Oh, I agree with that, or, oh, I have a thought, or, oh, I, because you're like seeking connection, and especially as SLPs, I feel like we're a chatty bunch, and so to realize how much more information comes out if you're silent was really powerful.

You're like, oh, the people who are sharing were like, I probably said more than I would have to this classmate if I, you know, had the opportunity to stop talking or re evaluate, and, you know, it, As I'm saying this out loud, I'm like, sounds a little manipulative, but I promise it's for the greater good. And so, [00:41:00] um, I think the fear of not knowing what to say can be squashed.

If you are okay with silence or you're like, give yourself a minute too. Right. You know, you don't have to have the perfect thing to say, because oftentimes it's better not to say anything at all. And I 

Amy Wonkka: think it's a way that so many of us kind of deal with our. anxiety and uncomfortable feelings around having difficult conversations with clients.

Um, I think back to particularly when I was earlier on in my career. Um, I sort of just tried to fill the space because I was feeling uncomfortable and I could see that my client or their primary care person partner was feeling uncomfortable. And so rather than. be present with that uncomfortableness together.

I was like, ah, 

Meghan Holmes: I'm just going to get through this. 

Amy Wonkka: Um, I wonder if, if you, I mean, you just gave us a really great [00:42:00] example, but I wonder if you had any additional reflections just on how your practice has changed and how your interactions with your clients have changed in terms of your dysphagia service provision from when you first started out to now that you're sort of incorporating this palliative care approach for all of your clients?

Meghan Holmes: Yeah, I think, um, it definitely has reframed how I think about alternative nutrition. Um, you know, I wholeheartedly stand by the no advanced dementia, the ethic statement that came out can put it better than I ever did. And I think that that is so important, but to kind of look at each patient case individually and be like, will their life be improved by this feeding [00:43:00] tube?

In a lot of cases, yes, like, yeah, we do anticipate that your swallowing is going to take a long time or the improvement of your swallowing is going to take a long time. And so we want you to be out of the hospital and getting the calories that you need so that you can rehab so that you can eat safely, or, you know, you need to have this kind of backup plan because eating is so difficult for you and you might not be able to sustain yourself.

Um, but. I think having this I approach every single recommendation I make as choices makes me think, Okay, what, where do I see this patient in six months, and, you know, I think every person has a different reaction to the overall medical world, and you know there are some [00:44:00] people who are going to take your opinion as fact.

So I think you need to know what your opinion is when you're walking in and making that recommendation so that you can make sure that you do not share it. I think that the The question that I get all the time in these family meetings is like, if this was your mom, what would you do? Like, if this was your spouse, what would you do?

And my response without fail is the only reason I know that answer is because I know what my mom would want. You know, we're asking you because you know what your mom would want. And so just kind of like, I hear you, flip it back. And so, I don't know, it's people are tough and I think, you know, you want. to be somebody who can support them.

And I think that being the person who delivers tough news doesn't feel very supportive. Um, but you SLPs do have [00:45:00] knowledge that medical professionals that they have interacted with so far don't have. Um, and I think that we, in some cases, Also have more time than some other medical professionals to that we can spend with these patients and their families to have, you know, lengthy conversations.

Um, the area me labs who've made this framework. Um, they also really specify that This type of conversation is its own billing code for physicians, and so it's like, nope, this is still worth your time physicians, because, you know, you can bill for these hours, having this specific type of conversation, because I think it's a tougher sell for somebody who feels very.

you know, stressed and like they're in a time crunch to really sit down and have this conversation. So they have a big reminder, like physicians, you can, you [00:46:00] should. And, um, I thought that was very cool and very helpful. Um, 

Kate Grandbois: Ashley, if you're listening, if you could please do some advocacy work to get us some reimbursable indirect service codes, that would be great.

Thanks so much. Anyway, as you were 

Meghan Holmes: saying, Meg. Oh, I wholeheartedly agree. Uh, I know. I. I'm very conscious as I'm speaking that I am spoiled in the acute care world. Like I am not as bound by insurance limitations as some other settings absolutely are. Um, and I think, you know, a quick tangent that's important about that is if you're in home health and if you're in skilled nursing facilities, if you're, you know, you are so conscious of my goals have to be achievable, they can't be for maintenance.

And so you. have to kind of get creative with your goal setting when your patient has goals that are not necessarily curative or rehabilitative [00:47:00] or life prolonging because We are still providing skilled services that are defensible, but you have to make sure that you are protecting yourself. Um, one of the best ways that I would recommend doing that is to use patient reported outcome measures.

You know, there are some for dysphagia, there's some for aphasia. Um, the ones that I turn to. Most often in the hospital setting is going to be the eat 10 and the MD Anderson dysphagia inventory. And so if you have a goal documented that you want the patient reported outcome scores to improve, then That helps you provide the quantifiable data that the insurance would need in order to justify the education and the strategy training and, you know, the time spent checking in with your patient, um, and using those to bill.

[00:48:00] Um, I know that it shouldn't be like that, but it is. And so, you know, you have to get creative sometimes to provide the person centered care that we are. Billing for

 so the fourth section of the framework is explore key topics. Um, and so that's kind of their overall goals, their fears and worries, their sources of strength. Um, and I think that I have seen this done more often by the palliative team, but I think that, you know, some ways that we can incorporate this into a more natural conversation is you're like, what are your biggest worries about what the future holds?

And, you know, if your situation were to worsen, what is, what do we need to focus on the most? Um, I think incorporating how much does your family know how much do you want your family to know, um, who can we talk to about this if you're not up for it kind of making sure [00:49:00] that you are checking in and getting permission and remembering who you're focused on.

The heartstrings to hear is like if you become sicker, how much are you willing to go through for the possibility of gaining more time. And so you're asking the person to examine, these are the treatments that are being offered to you. These are the benefits, but it's going to come with a burden as well.

And like, where are you kind of in that benefit versus burden spectrum? And I think that that particular question is also where I, as the SLP, maybe just Megan as the human, tend to insert my own opinion the most often and so that's where I have to be the most careful about judgment. Because, you know, I can think of patients who are so confused, they are not their own [00:50:00] decision maker.

And you know they're in the hospital and you can hear them down the hallway screaming, screaming, let me die, let me die, let me die, and then the You know, healthcare proxy is doing and full court press on whatever illness they're battling. And that feels gross as a human, but I think that what's important to remember is that this healthcare proxy was tasked with making the decisions that.

This person who's yelling would have made in their right mind. So maybe she would have gone through absolutely anything for more time with this family member. And like, maybe, um, what I see is just the surface level of the worst day of both of their lives. And I need to pull my own judgment back and just be like, I have to present options.

I have to provide support. I do not have to make decisions. And that is so freeing. And so if you can take the step [00:51:00] back to just be like, that's what's happening. And because this decision maker has told me what the goal is, that's what my goal is to, um, you know, It is, it can feel gross. And I think that the moral distress that can come from that where you feel like you're being asked to provide a service that you don't agree with can be very difficult, but reframing it in your mind to be this is still person centered care.

This is what the voice of the person that I'm caring for has said that they want. Um, of course there are ethical dilemmas at play that we do not necessarily have to get involved with. Um, and those, thankfully, are rare. So I think that remove yourself from a position of decision making as often as you can and just [00:52:00] The, you know, right alongside them.

Um, the very last of section is just to close the conversation. So summarizing it, making a recommendation, um, you know, affirming that you're there for them. So saying like, oh, I've heard you say that X, Y, Z is very important to you. So keeping that in mind, the plan that I think we've agreed on is this. Is that correct?

Um, you know, how does this plan seem to you? And then, you know, promising what you can promise, which is I will do everything I can to help you through this. Um, I think the behind the scenes self care is like everything you can stops earlier than you think it does. And so it is very tempting to overextend because of shortcomings In institutions and you know systems that we are chosen to work in, [00:53:00] but you can't continue to be a provider if you overextend all the time.

If you burn out you're good for nobody. Right. So, you know, I will do everything I can to help you through this is I will do everything within my power. That I can safely do to help you through this. 

Kate Grandbois: That brings me to a question. I wanted to ask you about our third learning objective and, uh, the different tools that you use in your setting.

But since you've brought up our own, the intersection of our own compassion and empathy and, you know, acknowledging that we're not a limitless amount of emotion, that burnout is real. How do you take care of your own emotional wellbeing in this role? 

Meghan Holmes: I like therapy for everybody. I don't know if I can say that, but everybody should go to course.

Yes, it's definitely important. Um, and I do think that. Having these kind [00:54:00] of training wheels of like a framework like this of a conversation like this, um, has made a world of a difference for me in a prior job, I was working, and I didn't have a lot of physician or administrative support. And the compassion fatigue became very overwhelming to the point that I.

Had to leave that job with no backup plan and was like briefly unemployed because I was just like, I am X number of years into my career and it hasn't been that long I told you all I graduated in 2016. So I'm like, I can't believe that I already feel like this, how can I, you know, continue to work. And so finding a new setting, you know, asking in interviews.

You know what types of supports are available to employees and like, what kind of experience do you guys have with these types of tough conversations and who takes lead on this type of thing. I think, can give you a lot [00:55:00] of information about whether or not that spot is going to be a good place for you.

And I. I hope that there are SLPs out there who are ready and prepared to be the ones to take lead on this right out the gate, but I certainly wasn't. And so this is something that has come over time. So I think, unfortunately, being kind to yourself and giving yourself the grace to bumble through a lot of these really tough conversations is also what can help.

Um, and. Yeah, I think it's mostly been a lot of boundary setting and like one other piece of advice that I got from the palliative team at our hospital. They actually they published an article about this and I think the Journal of Social Work for palliative care. They had a buddy system [00:56:00] throughout the pandemic, where they would, you know, have kind of check ins with.

Hey, how are you doing? How are you, how are you taking care of yourself? And so just that kind of accountability buddy of, uh, I'm going to have to have something to say in this stupid weekly meeting, like of how I'm taking care of myself. Um, and they also, they opened every one of those meetings, um, with a moment of silence for the people who have lost that they lost.

And so I think that that really helped me too. And that's something that I have done myself where you're like, Death is inevitable, but it's awful still. And so, you know, to understand that, you know, like, I hate that we're here, and I hate that I was, um, you know, that I do have to feel this, but like what a treat it was to like feel like I was able to.

make the end of this person's life as comfortable [00:57:00] and pleasant as possible. Um, I think this job stops being fun if you to become jaded or, you know, disillusioned by how serious this is. And so, you know, you need to make sure that you're able to show up as your best self every day. So, I don't know if that was anything concrete, but that's what I do.

I think 

Amy Wonkka: it's very helpful. I mean, I think all of those. All of those tips and like strategies are important, um, therapy for everyone. Totally. But yeah, I mean, I, I think it's, it even just hearing you talk about it, it's, it's such a heavy. It's so heavy. It can be so heavy that I think having an active plan and being thoughtful about taking care of yourself sounds like it's almost required.

Um, and I also think you [00:58:00] made a great point about work environment. I, I get on my soapbox of like part of the only way we're going to make our work environments better is by pushing for them to be better. And that includes choosing. To work in places that are more supportive, right? Work in the more supportive place.

Be kind to yourself and like vote with your job, right? Um, in, I know we don't have a ton of time left, but I know we talked a lot about the framework tool in terms of, you know, a tool that you're using a lot in your work. I just wondered, are there any other formal or informal tools that you're using that you want to kind of give a shout out 

Meghan Holmes: to?

Or, yeah, I think, um, I used some of the, um, honeycomb therapy, motivational interview cheat sheet, I thought was really helpful, um, just to, again, help you realize that this conversation [00:59:00] that is probably going to take a long time, right? And this is at least, we'll say 10 to 30 minutes. And you're like, Okay. I have no idea what I'm even going to say.

Okay, let me break this into how can I establish what this conversation is about. Um, how can I, um, make sure that this patient feels heard? I think one of the,

one of the most helpful pieces of advice that I got from that Those principles was to reassure whoever you're talking to that, you know, they're doing their best. And it's like, it's clear that you've been working really hard to follow our recommendations. Um, I've said it to family members and like, it is clear that you have been taking excellent care of him.

Because I think that a lot of the hesitation for, you know, palliative treatments, treatments focused on quality of life requires people to feel like [01:00:00] They are giving up on their loved one, or we, you know, we still have more to try. And you're like, yes, you absolutely have more to try and we still can. And also add this thing that focuses on their quality of life.

This is not an either or this is an addition. Um, and so yeah, the honeycomb speech therapy, motivational interviewing. Um, I listened to, I don't. I have some counseling, um, CEUs, um, that are on another platform. I don't know if I can say that name or not, but yeah, okay. The of course you can, I'm like MedBridge has a bunch of, um, counseling courses that are very helpful.

I think, um, it's funny, not with those specifically, but I think that in a lot of counseling CEUs, you start to. Or at least I kind of started to tune out too quickly because you're like, yeah, yeah, yeah, I know. And then you get into this [01:01:00] conversation. You're like, I did not know. And so you're like, listen to the whole thing.

Make sure that you are practicing kind of in your head sometimes, um, that Ariadne labs framework. I also use with. You know, interdisciplinary team members and providers because I think that there is a lot of hesitancy to incorporate palliative care when the goal is life sustaining and curative treatments because, you know, the medical teams don't want to feel like, um, or the medical teams don't want to anything to interfere with the ultimate goal of that patient getting healthier.

You know, kind of regardless of the cost and the lack of acknowledgement of the limitations of medicine or that there are some horrifying side effects to some of these medications that might not be worthwhile. So saying the I wish I were a [01:02:00] statement, even to Doctors has been really helpful for me where I'm like, Oh, yeah, you know, I hope they leave this hospital and we never see them again, but I'm worried that they're not going to follow this recommendation when they leave because it's so unpleasant and kind of helping to have the doctors join you in that conversation.

The I wish I worry is my ultimate tool. I think that that's the most important thing that I hope your listeners take away from this is you have the power to be clear and direct and kind also, and that is the best way to do it. 

Kate Grandbois: Didn't know how to do that. I am personally very much looking forward to incorporating that into my practice.

Thank you so much for that list of references. We will make sure that there is a link to all of these in the show notes for all of our listeners. You've spent already a whole hour with us today. Thank you so much for being here. Are there any words of wisdom that you would like to leave our audience with before we say 

Meghan Holmes: goodbye?[01:03:00] 

Um, I think just be kind to yourself and whatever stage you're at with these types of tough conversations, you know, they will feel easier. They won't get easier, but they'll feel easier. I promise. Thank you 

Kate Grandbois: so much for all of your time. This was really 

Meghan Holmes: wonderful. Thank you. I had so much fun.

Outro Sponsor 2

Kate Grandbois: 

Thank you so much for joining us in today's episode, as always, you can use this episode for ASHA CEUs. You can also potentially use this episode for other credits, depending on the regulations of your governing body. To determine if this episode will count towards professional development in your area of study.

Please check in with your governing bodies or you can go to our website, www.slpnerdcast.com all of the references and information listed throughout the course of the episode will be listed in the show notes. And as always, if you have any questions, please email us at info@slpnerdcast.com

thank you so much for joining us and we hope to welcome you back here again soon.[01:04:00] 

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