The Power of Words in Healthcare with Rachel Callander

At the ASDP 2025 Conference in Queenstown, author and advocate Rachel Callander joined Dr Angela Owens and Dr Michael Parry for a powerful discussion on the impact of language in healthcare, highlighting how medical terminology can unintentionally cause harm and advocating for more compassionate, strengths-based communication with families. Rachel  shares practical strategies for improving clinician/family partnerships, including reducing confusing medical jargon, reframing deficit-focused language, and introducing "awesomeness lists" to celebrate children's individuality, strengths and humanity alongside their challenges. 

Transcript

Angela 0:13
Hi, I am Angela Owens. I'm a paediatrician from the Gold Coast and I'm joined by Michael Parry, who's a paediatrician from Toowoomba. And we're here at the ASDP 2025 conference in Queenstown, New Zealand, where the theme is thinking well, speaking well and being well. And we've got Rachel Callander with us, who's just presented on the topic of, well, two topics. First, do no harm, the impact of language in healthcare, followed up by the workshop, Below the Surface. so on our theme, our conference theme, we'd like to start by asking you, what do you do to look after your own wellbeing?

Rachel 0:50
Well, that's a beautiful question. I have a lot of naps. I think that naps are my superpower. I think it's important to shut down. Sometimes I get a bit overwhelmed. So naps, walks in nature and making art, essentially. What's your favourite medium? Currently, it's painting on ice and then photographing what happens. It's very cool. They look like aerial landscapes. It's like, it's beautiful, magical, crazy things. That's very cool. Wow.

Angela 1:19
Maybe we need to follow up by sharing some of your photos of that work. All right. So we've just had a really, really great talk from you. And I guess for those who missed the workshop, I wanted to just ask some follow up questions. So they get the little tidbits. So if you had to sum up the biggest barrier to effective communication between families and healthcare teams in one sentence, what would it be?

Rachel 1:43
I think it would be the illusion that communication has occurred. I think there's a famous quote about that. And I think there is going to be some elements of confusion. So, yeah. And you had a great phrase up there about confusion. Confusion wastes time, not compassionate care. Do you want to explain a little bit for the people who missed that? Well, if you're confused, if you're a parent and you're confused, you don't know what questions to ask. You don't know what's been said. You don't know how to access care. You don't know what the follow up next steps are. And you basically can't make decisions, essentially. So you're a bit stuck. And so when you're stuck, then you have follow up appointments and you don't move forwards.

Angela 2:24
And we end up costing the health service for those follow-up appointments or the complaints for those who are strong enough to advocate and actually tell us they didn't understand. Yes.

I think one of the things I struggle with is that as a clinician, we don't realise sometimes the words that we say can wound and or there's a whole bunch of words that we know could go either way. So what's one practical thing we could do tomorrow to check our language in the moment? So I was hoping you could give us some examples of, you know, don't say this, but instead say this.

Rachel 2:56
Yeah. And in the workshop, I think I definitely advocate that there's no script. And so I'm a little bit hesitant to say don't say this and do say this because that can feel quite scripty. But I think with this kind of language, it's about making sure it isn't taking the humanity of a person away. So in healthcare, there's a lot of dehumanising words. So avoiding words like dysmorphic, abnormal, mutated, defective, incompatible with life, those kind of very subjective and negative words. So just gently adjusting those a little bit is a huge help. I know that no one goes to work to intentionally cause harm. That's one thing that the listeners really need to know, that you don't do it on purpose, but this is the language you've been given. This is the medical language. But also being able to quantify to a family if they're doing a good job, you know, tell them why you think they're doing a good job.

Angela 3:50
Yeah, that one came up a lot, didn't it? So we often say, oh, you're doing a great job. What was the tip that was shared that you think? We can use elements of that.

Rachel 4:00
Yeah, quantify it. So if they're doing a good job, tell them why they're doing a good job and what you think is working. I think parents need anchor points. They need to know what they're doing well so that they can celebrate that as well. Otherwise, it sort of feels like an empty platitude.

Angela 4:15
Okay. Any other big bugbears or things that we say accidentally?

Rachel 4:20
I think it's not so much a bugbear, but it's about if you're using acronyms or big words and potentially if, you know, a family has just received a diagnosis, so it's new. Medicine language is a completely foreign language. And so being able to explain things differently. So when my child, Evie, was born, I was told she had multiple ventricular septal defects. I think it would have been a lot more helpful if the doctors had said she had heart holes because I would understand what those words meant. But being thrown into the very medicalised language, I had no clue what they were talking about. So, again, that speaks to confusion. I didn't know what questions to ask, and so I had no idea what to do with that information.

Angela 4:58
One that came up that, so in our everyday practice, so obviously we're developmental paediatricians, so we're seeing kids who are, and this is probably one of the well, not meeting milestones, or developmentally delayed. And I think people have said that that was one of the harm words, delay. But how do you think we could rephrase that? Because we obviously do have to tell them that they're differing from what the average is. What's the right language?

Rachel 5:23
I think it's about setting expectations for the family. And, like, you do need a common language so that the healthcare professionals in the team know what you're talking about. So global developmental delay to a family is kind of ambiguous, doesn't really mean anything solid. But being able to quantify it is that your child is going to have some challenges in life, and we're here to support them. This is what you can look out for. They might not meet these milestones as documented as normal, but we are there to measure when they can do those things. So it's almost like reset the expectations of when a child might reach milestones. It's not like they're never going to reach them, but help them kind of see new milestones. So it gives them something to anchor onto and something to hope towards because I think... Like personalized milestones. Personalized, exactly.

Angela 6:07
Yeah. Do you like the word normal? You've mentioned it a couple of times today, and that's one that I actively avoid, that I'm like normal, average, neurotypical. What are your feelings about those?

Rachel 6:17
Again, it's kind of meaningless, and it can be used to isolate. You know, when we're measuring a neurotypical child against normal, they're always going to fall behind. They're always going to be measured negatively if you're measuring against normal or typical. So yeah, avoiding normal usually is quite helpful. But again, when you're a doctor and you might be hearing this podcast, you think, well, what do I say now? I'm afraid to say anything. It's about, I think, managing expectations, quantifying things, and being honest about the limitations that the child might experience. But also that there's hope that they will develop the skills in the future. They don't know when that future might be, but we're looking out for them and, you know, supporting them as they go along.

Angela 7:02
Okay. And sometimes I apologise saying, look, I've got to say, I don't like this word, but there is an average range. And saying, you know, we do, it's our job to decide. Yeah. And I'm sorry, but that is where it's at. I don't know. I think, as you said, sometimes being honest on the expectation or when we have a really negative letter coming, explaining that beforehand, going, look, I have to write this for X, Y, Z. But giving you the context of why we're doing what we're doing is probably better than just writing the letter and not giving you the heads up.

Rachel 7:35
Definitely. Always let the family know what the test is looking for, what the results mean, what the results might mean for the future in terms of extra supports or equipment. Yeah. Make sure that they understand the purpose of whatever it is that you're doing as well. And some language is necessary. It's just about being aware of the impact that it has. So it's not about changing every word that we're using in healthcare because that would be ridiculous. But just, yeah, being aware of the words that potentially can cause harm. Yeah. And maybe pre-discussing that that may happen, but this is why. Yeah, it's not intentional. And, yeah, definitely. Okay.

Angela 8:16
Michael, I might get you to elaborate on this one because you'll have the same shared thing. But previously, severe developmental delay diagnosis. Like, so autism used to be, and it was funny, in your talk, you got us to put in, like, sort of harmful and damaging language versus, you know, validating or positive language. And a diagnosis like autism used to be, 20 years ago, something that families feared or was in that awful basket. So we'd mentally prepare for the breaking bad news kind of conversation for that. But I guess it's shifted now. And I don't know whether TikTok and everything else has played a role in that, but it's now the other way where is every parent, or I think 95% of the parents that come to our service ask for autism, because obviously that matches the services and support. It's coming from a good place. But now we need to mentally prepare for the, your child doesn't have autism and here's all our evidence and prepare for the backlash. I don't know whether you've had much experience in your parent advocacy groups on that side of things or how we can support that.

Rachel 9:24
That just kind of suggests to me that if it's not autism, there's something else going on. And maybe we haven't quite figured out what lies within that. So we're talking about the normal range. Well, clearly we've measured what the normal range of autism is, but there's definitely things beyond that, that they still need supports. And those parents, I think are really frustrated because they don't tick any boxes. There's nowhere where they fit or belong. And so if it's not autism, they're going to need something. Yeah.

Michael 9:53
don't say, you know, give them a, give their child a diagnosis of autism. I think that's an awesome point about there's something else going on, because they've clearly come to you for some concern. There's, there's something going on. And again, I guess it's.

Angela 10:05
And how should we best explore that concern or that, that worry, or do you have any tips on how to unearth?

Michael 10:12
I was going to say that comes down to the fundamentals of what you're talking about, I suppose, which is communication and trying to, have an effective way of, of drawing out the concerns of what, uh, what the families are struggling with. So that we can then, I guess, work around if we, we have some way of identifying a pattern there that we can attribute something to that and, and guide, you know, I'll help them along that journey.

Rachel 10:33
Yeah, definitely. And a question you could ask is you came in here expecting a diagnosis of autism. We can't give that diagnosis, but what are you concerned about that made you believe that your child had autism? And then they would list all of the concerns and symptoms. And then you'd say, okay, well, let's have a look at this and figure out what is going on and how we can best support you. So the parents don't feel dismissed. They feel seen and they feel heard and they feel validated. Yeah. And I think nowadays like autism is an identity, like an identity that has a whole culture around it, which is amazing.

Angela 11:05
And it's a support network for those who get it.

Rachel 11:07
Exactly. So not having that feels like an exclusion. I can imagine when families are kind of looking forward to belonging somewhere. And I think that's what they're most crushed about. It's like, well, where do we fit now? We don't fit anywhere. And that's really scary when you don't feel like you belong.

Angela 11:26
You must have felt that your child had quite a rare disorder. And that's probably a bad word. You know, but it had a genetic change that's not that common. Did you struggle with that feeling of where you fit or there wouldn't have been a support network?

Rachel 11:41
No, there was nothing. And so, and it was, you know, 15 years ago when she was alive. But yeah, I felt very isolated. So my own family and friends, that was our network. But it wasn't anything to do with any supports or services. And we couldn't go to a service that was for children with developmental delays because we lived too far away. And so we were isolated even by location. So, yeah, it was really tricky. We had to sort of figure it out as we went and we made our own community. But yeah, there's a lot of people out there feeling very alone and very isolated.

Angela 12:15
You mentioned or someone mentioned in the talk that AI, well, one of the benefits now is we used to have to write, you've obviously read lots of doctor's letters in your time, but because of, it obviously takes us a while to write those letters. And they're mostly for funding or education support. So whatever, we used to have to just write one big letter that served all purposes and was pretty negative. But I guess we have some AI scribe tools now that allow us to write three different letters or whatever is needed. for the family. And you almost said that like having a parent letter with those strengths and interests and maybe those personalised milestones would be helpful. And then we either offer the other letter as well for the access or we shield them from that knowledge. But what's a perfect patient letter? Like what should we avoid? What should we include? How do you feel? Because like the typical doctor side has problems list at the top. Like, are there any things that you've read in the letter that you really want us to go, don't do that?

Rachel 13:19
Yeah. Well, just to address that last point, you know, the problems list, that's a very easily changed thing. You could maybe make it things we're working on list or challenges list or things we're finding harder, things that we need support with list. Not a problems list, like a child isn't a problem. And I think that's the thing, like when these words are spoken over them enough and when parents, if that's all they ever hear, my child has problems, my child has problems, this is wrong with them, this is not going well, this is bad news. You know, that people are saying, sorry, your child's born with a disability. All they're hearing is negative stuff and so then they learn to speak about their child in negative ways. So it keeps perpetuating. So I don't know if you can participate. We can change problems list. You can change problems list to challenges list or things we're working on list or goals list. Something. Yeah. Exactly. But I don't know if there is such a thing as a perfect letter. And I think we're not aiming for perfect. And I think if you're going aiming for perfect, you'll always, you'll never get there. But a good letter would have elements of all of those things. It will have elements of strengths. It will have elements of the things that the family and the children love and like and that they're working towards. It will have goals. And it will also have things that are probably the hardest things that really need support and attention. So it will kind of blend all of those things together. So when a family's reading it or a healthcare professional is reading it, you can sort of sense a journey, essentially. What are the most important priorities? Where's the funding going? And what does the family value and where are they hoping for?

Angela 14:56
Okay. You mentioned your awesomeness list. Yes. Do you want to tell us some more about that?

Rachel 15:02
Yeah. So the awesomeness form was made in response to feeling very broken, essentially, around filling in a needs assessment form. And I couldn't take a single question that this document was asking about my child's milestones, essentially. She wasn't reaching any of them. And so I made up a document of questions that Evie could already do, things Evie could already do that I could put a big yes to, a big tick beside. And it's been a really powerful tool for families and also healthcare professionals to reframe some of our milestone marking and how people find meaning and what's meaningful for families and where families find joy in their children. And it's documented. So it's a beautiful, I guess, measure your child against themselves.

Angela 15:45
How can we support our families to make one? Or do you think we should be having an awesomeness, like a challenges list and awesomeness list equally in our clinic

Rachel 15:53
How can we, why not? Like, I think it's important to have balance. Like, I don't want to say there's no challenges because there are, there are significant challenges and things are hard and things are significantly difficult. But within that, there can also be good things. And we lose, I think, a lot of the humanness when we only focus on one or the other. We can, we can do both. We can, like it's, and it's important to do both. What sort of elements were in your awesomeness list? I had some very strange questions, but one of them was, does your child laugh when objects fall near her face? So it would never be in an official document, but she really loved the sound of things falling near her. I don't know if it was the vibrations, but that was just something that she really enjoyed. And so that was something that made it onto my list that I put a big tick beside. Or can your child do assisted pull-ups holding her head up? Which was an exercise that our physios taught us, but her record was 13 in a row. And so it became something that we celebrated, you know, she couldn't walk and she couldn't sit up and, you know, she's nearly three. So the milestones, she was, she was lagging significantly behind normal, but this was our way of seeing how she was growing and developing. And as parents, that was really encouraging and empowering. And we could celebrate it because you need to be able to celebrate your child. You want people to see your child as something important and beautiful. Like you want people to see your child, how you see your child.

Angela 17:19
Are you just the type of person that could come up with those goals yourself? Or did someone help you shape them? Because I know a lot of our families will just come with 100% negativity. And our whole consult is shaped around going, look, here's the nice little elements. Or here's the gains they've made in six months. And we're trying to shape those goals. But is there a guide on how to help parents come up with that?

Rachel 17:39
I have made a resource. It's on my website. It's a free resource. It's the How to Make an Awesomeness Form resource. And the challenge with this is it can't be templated. So I can't just spit you out a form that you fill in yourself because the parents come up with the questions and they're all very unique based on their children's abilities. But it does guide you into the kinds of subjects and themes that you might think about your child. And even if your child is, you know, significantly limited in what they're able to do, there are still things that you can find joy in. And it could be just the way that they move or the sound of their giggle or the sounds they make or the way that their hair is in the morning when they wake up. It's like, well, the way that they might enjoy the feeling of wind on their face. You know, it's just bringing, I guess, highlighting the humanness of somebody and capturing it and seeing and elevating it is important that this little being, this little spirit and soul isn't just, isn't a medical problem to be solved with body parts that are failing and something to be afraid of. It's somebody that has impact in their family's life.

Michael 18:46
That's, I think that's when I first met, well, not met you, but, but saw your, one of your talks back in 2017 at a conference. And it was, um, centered around Evie and your experience through that journey. And my take home from that was as a clinician coming back and thinking that's, I don't generate awesomeness lists in terms of official ones that I write down, but that becomes a, uh, the crux of a lot of the more complex conversations that I have with families. And, um, yes, we're there to address and try and help some of the things that we can do from a medical point of view. But it was seeing the beauty and the, the units and every uniqueness in every child and, um, and, and getting joy and pleasure and, and actually sustain, like that's nurturing, uh, you know, for families to, to really focus on a lot of these, um, the positive aspects and the, the wonderful things that, that I guess a lot of clinicians don't focus on day to day. Um, so that, that has definitely shaped all of my consultations, um, and yeah, continues to, and today's another, you know, the, the language, what might you, I remember the language that you spoke to at that last conference and you, you mentioned again today, words like dysmorphic, uh, abnormal, um, I have a lot of discussion with families about these words or try to avoid certain words, but, um, just bringing that concept of, you know, your individuals, we're all unique. We all have our challenges. We all have our strengths and positives and, and, and trying to help the families, um, I guess, remember them and focus on them as well as what we're, you know, doing from a practical point of view as a medical, medical team.

Angela 20:13
I think that's one of the beautiful things that's changed in our specialty over the last five to 10 years is that focus on strengths and positivity. Um, because, and I, and I guess we have the luxury of being in a specialty where that is prided, whereas, uh, other specialties are still back, back where we used to be. Yeah.

Michael 20:32
And I guess medical lives, there's still very medical a lot of, whereas we are about, know, what our job is about behavior and learning and development and function and society and community and language and yeah. And communication. Absolutely.

Angela 20:47
Um, one other question we've come up with is that, um, geneticists now often you'd explained how the geneticists sat with you and drew the picture of the chromosomes and you finally got it. Um, and obviously that's a very hard concept to explain. So geneticists now we've seen often writing letters to with the patient and the family in mind, um, changing the terminology that they're using to everyday language. And luckily we have some AI that can also help us, um, change literacy levels, explain things simpler. Has this been helpful for parents?

Rachel 21:19
Yeah, I definitely think so. And even just one example, instead of the word mutation, uh, using gene change, you know, that concept of it's a gene change. It's, you know, you're not mutated. Cause again, people will form an identity around this language and that's when it is harmful and hurtful. So if it's a gene change, it's sort of, it's not personal. People don't make it about themselves and it's like, oh, it's my fault. And especially for carriers of which I am one, then they don't blame themselves so much. It's like, this is my fault. I carry this thing. It's like, as if you can change that, like you can't, you don't have any control over that. So it's about minimizing the ways that, um, parents can blame themselves or, uh, feel negatively about something that they don't have control over. So genetics, I am very excited about, um, that as a medical field because I think there's a lot of change and, and growth needed. And I do a lot of work with them around their language too. So yes, yeah, that driving a lot of it too, actually with the letters and things. So yeah, it's good. It's a good first beginning.

Angela 22:22
I should go to the point where we're routinely after every appointment sending out an, a summary similar to, so obviously in certain cases I send a patient letter each time, but I still probably more do it all in one. Um, just because obviously AI in our field's been pretty new, but should it become routine practice that after every consultation we're emailing or handing their family a, a summary in plain language about what we just discussed? Do you think?

Rachel 22:50
I think that's really helpful, especially for families that need time to process information and especially if it's in plain language. And then families can be often quite organized. They, it's nice to have control over the information because it affects their life. And so if they can never reference things or go back to something that is super useful.

Angela 23:08
Yeah. And as you said, the, the mums, or even, I was thinking when you said about the mums are the keepers of the information and they've now got to translate for everyone else when they get home. Um, but having that document or something to share, um, might help, um, you know, the Chinese whispers effect of things getting misconstrued or, or people getting focused on the one wrong thing that I said in the consult, they can actually later take in the other 90% of the consult.

Rachel 23:40
Definitely. And then they can circle things that they don't understand or it's a much, uh, it's a better way of processing information and people will absorb information in different ways, but having that concrete kind of evidential kind of, this is what we talked about. And I think using AI is just really smart to, you know, as a tool to help with this communication barrier and capturing everything that was said and, and spitting it out in multiple different ways, you know.

Angela 24:03
I was going to say, we all do it in writing, but what have you found when you've been given information? Is it visuals being better for you or hearing it?

Rachel 24:13
It's so personal. It depends how you learn, but I'm a visual person. I love seeing it in front of me, preferably on a paper so I can make notes and highlight it. And, but other people are like, no way, don't give me pieces of paper, put it on, put it on my phone, put it, text me, video it, like all sorts of different things. And we have the technology now that we can be really creative with how we communicate.

Angela 24:33
And I think it'd be cool if we could send out the summary and they click, I want to this as a podcast or I want to quickly watch this as a YouTube video or whatever. And they can pick whatever media.

Rachel 24:43
It's not that far away, I'm sure. And I think it's just about effective communication and using the tools that we have to align our knowledge base. And I think this is one of the things I spoke about today. Like everyone comes into that space with knowledge. The families come in with knowledge. The parents have knowledge, the children themselves of being diagnosed, have knowledge about what it is like to live like them. And then the healthcare professionals around them have knowledge. So it's about respecting everybody's perspective and then learning as much as possible from each other. So building positive partnerships with each other and communication is vital to that.

Angela 25:18
Yeah. So I'm coming up with questions again, but I was going to say

one of the other things you mentioned was kind of preparing for a consult. So one of the new things we're moving towards is maybe asking through some digital questionnaires before some of the questions we have. Do you think that'd be beneficial to give you more thinking time? I guess I'm trying to avoid the shutdown in the middle of the consult. And for some families, even just going, you know, tell us about, you know, they've come at 13 and we're like, tell us about their birth history again. And they're like, oh my God. And that might stress them so much that then they shut down. Is asking questions before the concert helpful or in the overwhelm of everything you're dealing with, is it all just too much and too many people asking?

Rachel 26:05
Again, it depends on personal capabilities and what you're able to absorb. I think asking families to go back all the way to the start of the history is overwhelming and can be extremely exhausting. I got to my level of tolerance with that when Evie was alive as well, especially I was in a teaching hospital. So the students needed to do that. And because she was so rare, it kind of felt like it. And so it's like, why explaining why they, they need to tell a new person that's again and again, like that's really important. Like, is it necessary or is it just something that's routine? You know, so again, just because we've always done something in a certain way doesn't mean we have to carry on like that. What's actually serving the relationship and the communication, you know? So yes, asking questions and having a questionnaire before they come could be really useful because then when you're in that clinic and that very precious time space, you're not using it all with things that they don't actually even want to talk about.

all right.

Angela 27:05
I am conscious of time.  what's the one thing that you're doing today that you think will still be changing children's and families lives in the next, um, 10 to 20 years? Oh, that's a long time.

Rachel 27:18
So much can change in that time. Oh my goodness. I'm a little bit terrified what's going to be happening in 20 years, but I hope that communication just gets better and better and better. And I, I'm hopeful that the parent perspective and the family perspective, um, is seen as a voice that's relevant in shaping healthcare systems. And I'm very hopeful. I've seen evidence of it where parents are part of the design process, um, and co-creation. So I think hopefully we continue to talk about, um, respectful and positive partnerships with each other, because I think healthcare will always remain our relationship. Yeah.

Angela 27:56
We are so, so grateful for you sharing your story. And it's amazing that you've taken such a painful experience and turn it into something so positive to shape our future. So, and we don't often get the opportunity to hear it in such a raw and honest form. We get it in the complaints, but to actually go, this is my journey, but this is what you can do different. Yeah. Um, actually providing some solutions has been really.

Rachel 28:23
Yeah, definitely. Cause I know no one goes to work to cause harm. Like that's the thing. You're not, you're doing a great job. You're doing the best you can. So if this story can be useful to somebody out there, I'm so grateful.

Michael 28:35
It has already since 2017 and it will continue to be.

Angela 28:38
Thank you. Thank you very much for your time.

Michael 28:41
Thanks, Rachel. Thanks.