IJLCD - The impact of communication on health care for people living with Motor Neurone Disease

Most people diagnosed with motor neurone disease (MND) will develop speech impairment over the course of the disease. Some will develop cognitive, linguistic or behavioural disturbance. Does this impact their ability to be involved in and make decisions about their healthcare?

In this podcast we chat with Dr Camille Paynter and Dr Susan Mathers about their research into this question.

The paper is:  The impact of communication on healthcare involvement for people living with motor neurone disease and the careers: A longitudinal qualitative study.

Camille Paynter, Susan Mathers, Heidi Gregory, Adam P. Vogel, Madeline Cruice

First Published: 
21 July 2022

 
Useful resources:
Access the paper here: The impact of communication on healthcare involvement for people living with motor neurone disease and the careers: A longitudinal qualitative study.

How people living with motor neurone disease and their carers experience healthcare decision making: a qualitative exploration. Paynter C, Mathers S, Gregory H, Vogel AP, Cruice M. Disabil Rehabil. 2022 Jun;44(13):3095-3103. doi: 10.1080/09638288.2020.1855261. 

Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study. Paynter C, Mathers S, Gregory H, Vogel AP, Cruice M. Healthcare (Basel). 2022 Jul 24;10(8):1371. doi: 10.3390/healthcare10081371.

Communication and cognitive impairments and health care decision making in MND: A narrative review. Paynter C, Cruice M, Mathers S, Gregory H, Vogel AP. J Eval Clin Pract. 2019 Dec;25(6):1182-1192. doi: 10.1111/jep.13219.

NOTES:
For RCSLT members, access this paper by navigating to the IJLCD website from our A-Z journals list here. Also, if you would like further information on the research terms used in the podcast, or many other aspects of research design, please navigate to the ‘Sage Research Methods’ collection from the Research Methods page of the RCSLT website’.

The interview is conducted by Jacques Strauss, freelance producer, on behalf of The Royal College of Speech and Language Therapists.

Please be aware that the views expressed are those of the guests and not the RCSLT.

Transcript

Transcript Date: 

25 September 2023 

Speaker Key (delete/anonymise if not required): 

HOST:                         JACQUES STRAUSS 

CAMILLE:                 CAMILLE PAYNTER 

SUSAN:                      SUSAN MATHERS

MUSIC PLAYS: 0:00:00-0:00:04

HOST:                         0:00:05 Welcome to the RCSLT podcast. My name is Jacques Strauss. Today is another edition of the International Journal of Language and Communication Disorder series, in which we talk to authors about research they’ve published in the I LCD. 

Today’s guests join us from Australia and the paper is entitled, ‘The impact of communication on healthcare involvement for people living with motor neurone disease and their carers: A longitudinal qualitative study’, and it won the IJLCD Editors Prize for 2022. 

I started by asking the authors to introduce themselves. 

CAMILLE:                   0:00:39 My name is Camille Paynter, and I’m a speech pathologist working in Melbourne, speech and language therapist. Although currently, I’m working in a postdoctoral research role that isn’t related to speech pathology. My clinical experience, I’ve got 20 plus years of working as a speech pathologist and primarily with people with acute or progressive neurological conditions, in acute tertiary hospital settings. 

SUSAN:                      0:01:07 I’m Susan Mathers. I’m a neurologist and clinician researcher. I have spent, I suppose, 30 years working predominantly in outpatient care for people with progressive neurological diseases, particularly people with motor neurone disease, and we have a multidisciplinary clinic here in Melbourne that looks after about 350 people with motor neurone disease at any one time. And that was where Camille joined us to do her research. 

HOST:                         0:01:41 So, what clinical question were you trying to answer. 

CAMILLE:                   0:01:45 I should put this paper into context. So today, even though we’re focusing on this paper, this is part of PhD research that I conducted between 2017 and 2021. There were three results papers as a result of that research, and I would like to acknowledge my supervisors, who was Susan who’s introduced herself, Professor Madeleine Cruz from City University of London, Professor Adam Vogel from the University of Melbourne, and Dr Heidi Gregory, a palliative care physician as well. 

The clinical question that we were focused on was really wanting to explore the impact of communication or cognitive impairment on healthcare involvement, and really wanted to look at the perspective of people living with motor neurone disease and their carers. 

We know that MND is a progressive neurological disease, so we wanted to capture the impact of change over time, as people were living with their condition. 

The other clinical question we were looking to answer too was just around providing some advice and strategies for clinicians from the perspective of people living with MND and their carers. 

HOST:                         0:03:03 Could you give us an overview of what the literature says on this topic? 

SUSAN:                      0:03:09 The literature certainly supports that patient-centred multidisciplinary care is best practice for people with motor neurone disease, and there are a number of international guidelines that reinforce that. 

Obviously, engaging patients in healthcare decisions is fundamental to delivering person-centred care. And patients have been well documented in the literature as valuing their ability to continue communicating. One of their greatest fears when they develop these sorts of neurological diseases is that they will lose their voice and lose their ability to communicate with their families but also with health professionals, and that’s a source of distress and fear for them. 

The literature also documents that people can withdraw from social participation because they’re not able to talk so easily, their quality of life will suffer, and also the other members of their family, particularly their partner or spouse, can suffer social isolation because of a) that withdrawal, but also that loss of intellectual and social interaction with their loved one. 

The literature also documents well the mechanistic and pathological changes that cause impaired communication in MND. Obviously, the motor aspects, when the muscles of the face and throat become weak and can’t articulate words properly. There’s also loss of facial expression and loss of hand function over time, so people can’t write or type, and they can’t use gesture as easily for communication either.

But there are also cognitive changes and behavioural changes that affect people with MND. At least up to 50% of people and in varying degree that also impact communication and social interaction. And these, particularly when they’re behavioural, can look like apathy, so a person’s not very keen on communicating will often leave the talking to their spouse. They may be impaired in processing other people’s emotions and not read the room very well. They may suffer from emotional lability in showing appropriate laughing or crying, and that can be very embarrassing, and can occur in people without much in the way of cognitive impairment. 

There are also linguistic changes, so people’s ability to name and spell and sometimes their grammar can be affected, and their verbal fluency is often affected as well. So, it’s quite a complex area. 

As I said, clinics that look after people with this disease and the clinical guidelines that are mainly the UK guidelines that many people have followed over the years, but now there are some new Canadian and New Zealand guidelines, which are a bit more up to date, they don’t give very strong practical strategies for managing these problems in the setting of making decisions about healthcare. But they obviously do recommend close monitoring for changes in communication and changes in cognition when people have motor neurone disease, and the need to discuss ways of getting around them – using assistive technology, digital ways of communicating such as voice banking, as well. Those needs to be discussed with people as early as possible. 

HOST:                         0:06:39 So, we do know quite a lot about the devastating impact of MND on a patient. But I wonder, Camille, if you could give us a sense of what gap your research was designed to address. 

CAMILLE:                   0:06:54 We know that MND is a progressive disease and some of the research tells us how decision making is often a cyclical process for people. They react to change and they need to adapt. So, the studying or interviewing people over time to see how that played out was an important aspect of this study. 

What other researchers have found, and this has come out in one of the other papers that I published as part of this research, was that where people aren’t quite ready to make a decision but from a clinical point of view often they need to make a decision, so there’s some discord often between perhaps what they need to be safe, and also for clinicians to be able to prepare and recommend and get perhaps services into place or communication devices into place and things like that. Often besides people having to react and adapt and come to terms with the change that’s happening to them, the timing of those decisions are sometimes very difficult for them and the clinical team to match up. 

SUSAN:                      0:08:12 I think there’s often a discord between not just the patient and the health professional, but the patient and the carer over certain aspects of information and knowledge. The literature certainly suggests that family carers want more information. They want it earlier because they see themselves as having to plan ahead and want to know what lies over the horizon, whilst they don’t want to burden the patient, perhaps, with that knowledge too early, and certainly don’t want to demoralise them or overwhelm them with too much information too quickly. 

And that’s often what the patient’s tell us is that, yes, they need information but they need it to be given in a measured way at the right time. That’s one of the tricks, isn’t it, how do we necessarily find out that we’re giving information appropriately and that we’re giving patients a chance to say, I’ve had enough now, I’ll come back another day for more. 

But yes, as health professionals we tend to be wanting to be on the front foot. We know how long it can sometimes take for things to get in place and healthcare appointments to be organised and procedures organised, particularly in the public health system. And so, we don’t want patients to miss out, but on the other hand we don’t want to pressure them either. 

HOST:                         0:09:38 Can you tell us a bit more about the study design? 

CAMILLE:                   0:09:42 Yeah, so the research design for this study was a longitudinal qualitative study. For those research nerds out there, it was underpinned by interpretive descriptive methodology. So, we recruited people living with MND and carers from the multidisciplinary MND clinic here in Melbourne, and recruited 19 pPeople living with MND and 15 carers. And we really tried to get some variation in that sample, so we recruited people across a range of MND phenotypes.

We knew that with a progressive disease that there’d be some attrition across the study, and particularly being a longitudinal study. I interviewed people one to three times across that 26 months, and at timepoint three, we had 12 people living with MND and 7 carers who still participated. There were a couple of people that withdrew, and the bereaved carers weren’t interviewed, which is the reason for less carers to be interviewed at that timepoint. 

With the sample, unfortunately, because of lack of funding for interpreters, I had to exclude people that were non-English speaking background, and I didn’t also recruit people with overt cognitive or behavioural issues where informed consent might be a problem. 

As I mentioned, I interviewed people up to three times. And then the interview transcripts were thematically analysed, so looking for themes that were consistent and inconsistent with people, so always looking for things that stood out and looking to see how people’s experiences changed over time, so looking at that trajectory, longitudinal analysis. 

HOST:                         0:11:49 We get to the all-important question: What did your study find? 

CAMILLE:                   0:11:56 It’s probably no surprise to speech and language therapists that communication impairment or, in fact, the anticipation of a future communication impairment did impact healthcare involvement. Our overarching theme for this paper was communicating takes effort. And there’s five sub themes, so I’ll just list those, but we’ll talk more broadly about the results. Dealing with symptoms, circumnavigating the impairment, [being there 0:12:22], healthcare professionals’ accommodations, and good communication equates to good healthcare. 

And the paper really shows some really nice rich quotes that exemplify those themes. But I think one of the things that really stood out was how much effort people living with MND and also carers went to, or had to, to compensate for the impairments that they had. So, the bulbar weakness or respiratory and limb weakness. What that meant was that the effort to talk or to write was just so great that they would avoid it at times, or use it in limited capacity. For example, in healthcare appointments, they might ask fewer questions, or their answers were more restricted, so they didn’t have that opportunity to really fully express their opinions. 

For people that were reliant on high tech communication devices, it’s natural for other people to often second guess what people want to say, and that was that was sometimes frustrating. So, that was that that was what they had to deal with, that often the time taken to respond via high tech communication just meant that it created some incorrectly anticipated responses and some frustration. 

People were ever inventive about the ways that they could circumnavigate some of those difficulties, so they would prepare written questions or responses in advance, or they’d have discussions with their families before clinic appointments so that everybody knew what the person with MND wanted to say if they weren’t able to say it in the appointment themselves. And healthcare professionals often would use digital communication, so they would text or email their patients in advance, and that meant that that allowed that independence for someone who wouldn’t be able to answer the phone and then didn’t need to rely on someone in the family to listen to the voice message and respond to the to the query. 

Interestingly, some people didn’t circumnavigate their difficulties and they continued with speech even though it was really difficult to understand, or the effort to learn high tech AAC was just too much of a barrier and they didn’t want to compensate by using a device. 

What we also saw from this research was how important it was for a reliable support person to be there to support people in and outside of clinic appointments. For example, one of the participants could manage a telehealth appointment, except for he used a digital tablet to write on and the camera for the telehealth appointment couldn’t read that screen, so he had to have a family member there in order to help facilitate that interaction. Lots of little things like that where having a family member became really obvious of how important it was. 

The accommodations that healthcare professionals made made a big difference. These are described by people living with MND. We didn’t interview healthcare professionals for this study, so it’s their perception of what was done. But often, clinics might have run multidisciplinary appointments, so that the OT and the speech pathologist did a session together and that just reduced the amount of effort then and the amount of talking that was required. People in this study found that really helpful.

Healthcare professionals who provided just extra time and quiet spaces for people to talk really made a difference to people’s independence in their sessions as well. And things like having documented care plans from the clinic that were sent to patients, so then that could be shared with the family, and that reduced the need for them to then relay that information verbally. Little things like that made a big difference. 

And then probably the last thing I want to say is just the perception that people had, both people living with MND and carers, around that effective communication equated to good healthcare, and they felt that it was important to be able to explain their care needs. And there was concern about what might happen if they weren’t able to then verbally express what they needed. 

So, that anticipation of a future communication impairment also meant for some people they started organising their medico-legal paperwork in advance, or identified that as soon as their speech started to deteriorate then that would be the time to get on to that. 

SUSAN:                      0:17:24 The things that have been reinforced by this research for me are, one, the importance of preparing for appointments, not just the patient. Camille’s talked about patients often writing things down in advance, so that they can bring that along to an appointment. But I think we as health professionals need to show a somewhat different structure and be in touch with our patients ahead of time, so that we can have early understanding of what it is that the patient wants most to talk about when they come along to clinic or to telehealth session for that matter, to make sure that we’ve got the right people available on the day, and that we’re ready to respond to their priorities.

That’s so important because, as Camille’s shown, people get very tired during these sessions, particularly if they’ve got to speak to a few people in one go. And they may just give up halfway through and so they can’t continue. So, it’s important that we tackle the most important things to them first. 

It also means that, as health professionals, we need to be a lot more flexible in how we run our sessions with patients. Certainly, having more than one professional do joint sessions with a patient and a carer are helpful. People always talk about how much they have to repeat themselves when they go along to hospitals, and so we should try and avoid that. And also, the health professionals learn from one another during those sessions too. 

Not going through things in that kind of rigid way that we are taught at university to take a history, and showing that adaptability so that we can we can focus in on what’s important for the patient and leave other things till another time perhaps. That’s where our expertise comes in; knowing what can be left for another day, knowing what really has to be tackled there and then if it’s vital to the person’s wellbeing. 

The other things I learned from Camille’s research was because we… We structured this all around decision making and asking patients about how they made decisions about their healthcare. The most striking thing that Camille reported back was that patients weren’t too sure what we meant by decisions, and saw them much more often as a recommendation that was coming from the health professional. 

So, if we were talking about, say, a wheelchair – a need to use a walking aid or a wheelchair – then the person would understand the sense in that, but not be ready for it or not feel that they needed it yet. And they would, therefore, tend to reject that offer on the day, much perhaps to the frustration of the physiotherapist who was worried about them falling and breaking their wrist or their leg, because other people have done that before. 

But then eventually, over time, patients would accept these things, when they felt that there was a need. And so, their approach was very much to take on board the recommendation, but only to accept it when they felt comfortable or felt that they were ready. And so, they didn’t really see that as making a decision. 

But if you took a more complicated question, like: Would you like a feeding tube? Would you accept a feeding tube? Then then they certainly saw that as a decision. I think that’s around the psychosocial and more emotive aspects of having artificial feeding. Even those words, I think, are quite emotive, and nobody puts their hand up to say, yes, I’d love a feeding tube, until they really need one. And so, it’s probably one of the areas where health professionals struggle the most to inform patients about the timeframes when it’s safe to have surgery to put these tubes in, if they want them, ultimately, versus when patients see the need for one and will accept that recommendation. 

So, that’s probably the trickiest situation, and I think Camille’s results draw out the difference between those two things, that the general acceptance in time for something like a walking aid versus there’s much more invasive, intrusive, and unwanted intervention of something like a feeding tube or a [inaudible 0:22:22] where the person really had to probably steel themselves to both think about it and look at the information, and then to finally make that decision. And some patients were unable to make that decision and put it off until the point where perhaps it’s no longer feasible. 

CAMILLE:                   0:22:39 What I’d like to say is just that flexibility that healthcare professionals had in those discussions and being open to patients saying, no, I’m not ready, that made a really big difference to some of the participants in the way that they described their experiences to me. And they felt like they could go back and say, I’m ready now, without any judgement and that was that was really important to them. So, having that open dialogue with healthcare professionals was really important. 

And something else that Susan was just saying around preparing for clinical appointments and setting, perhaps, goals or agenda items, and just being mindful what the patient or the person living with MND wants may not be the same as what the carer wants to get out of that clinic appointment or that session, and perhaps having some flexibility there around how to address different needs and different information provision or different questions at that time as well. 

SUSAN:                      0:23:51 I was just going to pick up on what Camille said about the language that health professionals used towards patients and their family members. Just using that more empathetic and softer language, I think, helps people to feel that they’re not having things thrust upon them – that they are still in control, even if their important decisions that might not be available down the track. I think it’s important that, as health professionals, we learn how to approach people and continue to show empathy because these are difficult decisions. 

So, I think there are some nice examples in the in the paper that Camille has written for this research of, have you thought about trialling a wheelchair, rather than: you need a wheelchair type of approach is a very simple tool, but probably has quite an impact. 

HOST:                         0:24:52 I think we’ve covered this a bit, but I wonder if there are some key takeaways specifically for speech and language therapists or pathologists? 

SUSAN:                      0:25:01 I think it’s important in a team-based model of care that the speech and language therapist feels able to show that shared leadership position and support the team to be aware of these difficulties that the patient’s experiencing, and the fact that they are going to need to accommodate them and their assistive technology and learn how to how to communicate with patients, if we’re going to practice patient-centred and compassionate care in this setting, which is so very important. 

But I see the difficulties also arising when people with these diseases end up in a more acute setting that is unscheduled and unplanned, and they might end up in an emergency department or move quite rapidly into an aged care facility, for instance. There, they’re not going to meet a team that’s already aware of the disease and their needs, and that’s another very great challenge. How can we as clinicians with some specialist knowledge in this area, and how can speech and language therapists support people who are less specialised in the care of these people? 

HOST:                         0:26:19 What are some of the limitations of the research that you think listeners need to be aware of? 

CAMILLE:                   0:26:25 One of the limitations with this study was that we didn’t actually capture communication change as we’d anticipated. So, a number of the participants didn’t develop a speech impairment through the course of the study, or some passed away before being able to capture that change. That’s one thing. 

The other issue was the cognitive screening was planned for, but that wasn’t achieved throughout the whole study as well. Primarily, it was an issue at the third timepoint where, due to fatigue, it was just onerous on participants, and the focus really was on the interview and that’s where we wanted to get that rich information. 

The perspectives of healthcare professionals weren’t obtained, and I think it would be really interesting to see whether healthcare professionals think that the accommodations that as expressed by the participants are the things that they’re already doing, or is this new information to them. 

And, of course, that the diversity of the sample was limited to English speakers. 

HOST:                         0:27:42 In addition to perhaps carrying out interviews with healthcare professionals, what other areas do you think might be fruitful for further research? 

CAMILLE:                   0:27:52 I also think that doing an observation study might be really interesting, so that you can actually capture the communication interaction between people living with MND and carers and the healthcare professional, so to see actually what’s happening in those appointments or in those interactions. 

HOST:                         0:28:15 A very big thank you to Camille and Susan for their time today. As always, there’s links in the show notes, including links to the article that we’ve spoken about, and other resources that may be of use. 

Until next time, keep well. 

MUSIC PLAYS: 0:28:30 

END OF TRANSCRIPT: 0:28:38