#95 Caring for People with Disabilities at the End of Life: Getting Comfortable with Being Uncomfortable – Carrie Batt, Death Doula and Grief Educator

Carrie is a doula and a sister to a man with disabilities. She wants people to consider how communication, comprehension and pain management are different concerns for the population she specializes in. How can medical teams understand more about their needs? Who speaks for them, if they cannot speak for themselves? What are their issues at the end of life, and how do they differ from the general population?

Transcription Below:

Diane Hullet: Hi, I am Diane and welcome to the Best Life Best Death podcast. As always, I have a really special and interesting guest on today. Today I’m talking with a Canadian doula Carrie Batt, and Carrie has a business called Soul Care. S e o L care. And I find this really moving because what that stands for is special end of life care.

And Carrie reached out to me on Instagram and we were kind of going back and forth about disability and end of life, and I just, I just think this is really rich topic. So welcome Carrie. Thank you. Tell us, tell us how you got into this work. 

Carrie Batt: So my background is in disability. I’ve worked in that. Field and I continue to work in that field for over 30 years.

I, I have a brother who has a developmental disability, so it’s a topic near and dear to, to my heart. I had attended a workshop with a fellow Canadian fellow, well known in, in the deaf care community named Rammy Shammy, and he was offering something unrelated. But in his introduction, he mentioned his work of death care.

So at the end of the, the workshop, I approached him and I want to know h what’s it like, you know, offering death care to people who have a disability. And he had been in the field for over 30 years. He had said, I have never met anybody who has a disability in at end of life. And I was shocked. And I said to him, I think that’s what I’m meant to do.

Guide me, tell me what I need to do and I will follow all your instructions. So then I, I just proceeded forward and I took everything I had to take and to get me to a qualified doula, end of life, doula. And then I went on to learn about grief. I didn’t know how relate, you know, we know that they’re so related, but until you actually get into the field, you don’t realize how.

Prominent brief death. They’re all intertwined. So then I went and con went on to take David Kessler’s brief educator. 

Diane Hullet: Oh. Such amazing things about David Kessler. Yeah. You, I love what you said when we were chatting before we hit record. You, you said it was like a whole new country. Do you wanna describe that?

Carrie Batt: Yeah, so I’ve traveled and lived in lots of different places. I’ve lived in India, I’ve traveled there a lot. I’ve lived in Cameroon, Morocco, this kind of stuff. And so I really understand about culture shock and what it’s like to go into another culture learning, another language learning, and now another way to communicate and all that kind of stuff.

And so when I, when I took the all the death care information and training, I kept. Trying to figure out what is this feeling that I’ve had this before. I know this feeling, but I couldn’t identify it. And so as I continued on in my learning, I was able to, there was one day that I was able to realize, aha, this is just like my travels when I lived abroad and I had to learn another culture and words and language and in death care.

You are learning words that you’ve never said before. You know, just holding space, just simple stuff, right? Holding space. I remember the first time when I said the word death. First time I said dying. You know, des the depo when you depo deposition of a body, that word I got so hung up on that word and that word made me realize about the culture thing.

And that word got me to write the article. That was that they’re so intertwined. It’s like, yeah, you’re going into a whole new. Culture. It really totally is. Well, and I think, 

Diane Hullet: you know, you, you’re saying that in terms of the field of, of death and end of life care, I think it’s probably also true with disability, right?

People are either familiar with that world and that word and the words that are surrounded by it, or it’s a different country and they, it’s a different culture for some people. Te you know, tell us more about what disabilities you’re really talking about. So 

Carrie Batt: it’s the spectrum. So you have. You know, all the way from a physical disability.

So somebody who is a quadriplegic, a paraplegic, somebody who has cerebral palsy, somebody who might have dual disabilities. So you can have cerebral palsy and have a developmental disability and maybe in there you have a, might have a mental health issue. So all the way from physical right through the spectrum to autism and a developmental disability.

The whole spectrum. Yeah. So sideline, you know, I don’t speak, I’m deaf, I’m blind, that kind of stuff. Everything, 

Diane Hullet: everything, everything. I, I think it’s really interesting to think about how different disabilities play out differently in end of life situations. 

Carrie Batt: So the basic would be, you know, big thing to start off with is communication.

How does the person communicate? So if you, you know, if you’re with somebody who say parize since they’re 25 and now they’re at the end of life, they’ve always you know, made their own decisions. They’ve lived on their own, even though they were ha you know, were quadriplegic. So communication and decision making is known to them, is familiar.

So you would carry on in that fashion, but you know, Many people that I’ve been engaged with a developmental disability and perhaps no language communication, let’s just say it might just be eye movement. So looking up says yes. Looking down is no one going to the right is another thing. Going to the left is another thing.

So communication, getting to know how this person communicates as well as comprehension. So being aware of their comprehension level and as well as pain management. Somebody may have a really high pain tolerance as well, and add that into, they don’t use words to communicate, so it’s a, you are always fine tuning and you always need to be really, really curious because from one minute to a next.

You’re just always fine tuning. It’s like tuning into an instrument. Where’s this person at? What are they trying to tell me? You know, is it a wiggle of their toes? Tells me that they’re really flinchy and there’s some pain going on. So you’re just really always, like I say, being really curious and tuning in to that person.

Diane Hullet: I imagine that the people who are most tuned in, like you’re describing, are the caregivers, whether it’s parents or siblings or paid caregivers. They’re the ones who probably really follow this communication and they’re the ones who might be then interfacing with medical staff. And you know, that’s, it’s just gotta be complicated.

It’s probably a lot more subtle and a lot more complex than a verbally competent and mentally competent person. 

Carrie Batt: 1000%. You go to the, you reach out to the people who know the person, the best family, or you know, let’s just say somebody’s always been in care since they were 10 years old, right? You could be going to a group, 1%, you know, at a young age.

So it would be your, your staff there, your manager that kind of stuff, that who you would rely on, the service providers, you know, lots of communication, lots of navigating, lots of being directed and guided. You know, in terms of our healthcare professionals you know, the big key thing in terms of death, dying, and disability, I call it untapped, I speak a lot about that, is conversations don’t exist within our healthcare about that topic.

Education is nil, and there’s no expertise in that area here in, in my area, in Ontario. So when it comes to, you said the word healthcare, those are the hurdles. The challenges, they’re hu. That’s enormous. 

Diane Hullet: They are, they’re just enormous. And when, when you talk about conversation, I mean, I think it’s really interesting in, in general society, it’s complicated to have these conversations and then you layer on a family that’s been dealing with disability for perhaps this whole person’s life.

And it’s, it’s really complex. I had a conversation a long time ago, back on podcast number nine with a woman named Manti Rajput. And Manti was a. Is a attorney in the Detroit area who was, had written a book about how families needed to put a plan in place for their special needs kids. And as an attorney, she specialized in helping them do that.

And I, I just thought it was such an interesting conversation because as you said, the conversation has to be had, the plan has to get made. And so how do we open that door in the disability community? So 

Carrie Batt: what I find is families are not receptive. You’ll have very few families who are receptive to that kind of conversation.

My mother and father, my father is 82. My mother is 79 years old. My brother is 52 years old, and I have put together a binder and it’s just left for them to put in whatever information they want. But you know what? Even though I have the conversations and the education, it’s like pulling teeth.

And you know why? In fairness to families who have a child of a disability, you have put so much time and effort and energy into just whatever you’ve had to do. You know, it’s one foot in front of the other. Be it. You know, getting them involved with their community, getting them involved, connected with whatever you’ve had to fight for everything.

So it’s like one more hill and hurdle that you need the energy to go through and go on. So that’s a nice thing to bring up. It’s really something that our disability community has not been really great at. Following up on as well as our deaf care community, you know, like we haven’t been included in the deaf care training, the education, right?

So like, it’s a couple of different things, right? The healthcare, deaf care, family, disability, community, the service providers, all of those, it’d be really great if just they get a little taste of what planning looks like and what questions need to be answered. But like it’s, it starts with these kind of conversations, right?

Yeah. It starts with a conversation. Somebody hears something and then it snowballs from there. That’s the hope, right? That’s, that’s why I, I’m doing what I do. 

Diane Hullet: I love it. I’m, I’m wondering, you know, I think about some of these big organizations that are well known, like Five Wishes, like a lot of people have heard of Five Wishes in the US and probably in Canada.

Yeah. Yeah. It has to do with asking questions and a way to kind of carve out a conversation. I wonder if Five Wishes would be interested, you know, in doing some kind of like, Partnering and figuring out, are there slightly different questions that can be asked in the event of a disability? I don’t know.

Carrie Batt: don’t know. There, yeah, that’s a great question. Yeah. There would be totally different kind of, you know, you expand on a question or you know, help somebody through a question. When they reach a, a hurdle, you know, like you would expand on it and try to navigate it and try to come up with a different way to go around that question.

But that’s a great, great point. Thank 

Diane Hullet: you. Well, as you said, it’s, it’s communication and comprehension and then a plan of action to kind of make sense both of the disabled person’s end of life and or their caregiver’s end of life and how those might fit together. It, it’s without. How else, you know, how else do you feel like those in the medical field could help?

Like if a nurse or a hospice volunteer or a, you know, doctor is listening, what, what would you feel like would be helpful for them to hear? You know, 

Carrie Batt: my biggest word that I use is get curious. So that means ask questions. You know, you are not going to know what that, what is like for that person to have never made a decision in their life.

Let’s just say somebody, I’ll give you just a visual. Somebody in a wheelchair, CE palsy, a developmental disability, let’s put in a, a mental health bipolar. Okay? So if they’ve never made a decision in their life, Not they, they couldn’t. But let’s just say the people around them have never drawn that out of the person.

So let’s just put that in the mix. So they, let’s just say they never put, made a decision on what clothes they’re gonna wear. So then now you want them to make a decision in terms of whatever, for their advanced care planning. Right? So it’s getting curious about understanding that, understanding who the patient is when you walk in the door like.

Who am I addressing? Who am I engaging in, and getting a little bit of a sense of their life as well as who they were before their diagnosis. So just getting some information and you know, you’ll, you’ll need tips and information ed, like a quick, like a crash course on who that person is and a crash course on how they have communicated all their life.

Because now they’ll be at a stage where they may not be able to communicate in that same way anymore at all. Right. But so it’s, yeah, healthcare professionals, that’s the big hurdle is that they don’t have enough experience. They say they don’t have the education and they don’t have enough experience. To learn.

And so what it is, is it’s about getting curious. My biggest word is get curious, ask questions, don’t hesitate. You know, what happens with a, a caregiver? You, you know, so, so, so much information. You don’t know what information that person needs. So if that doctor or nurse asks, then the information will come instantly.

Diane Hullet: Right. It strikes me as almost, it’s like curiosity on both sides, and it strikes me that it almost, it just needs more time. Like this is just gonna be a slowdown situation because, because of the communication barriers at times and because of the comprehension and just almost like for the family and caregivers needing to prepare for those medical meetings so that.

Their answers are on the tip of their tongues and doctors, nurses, healthcare people preparing for some slowed down, expansive time for answers to come forward. Cuz it’s just not gonna be as quick as a, as a conversation can be. 

Carrie Batt: Right. Because there’s so many components. Right. And I think also, like on the family side or the service provider side, I found, I took a fella through a brain tumor and he had.

Two brain tumor surgeries and he had two craniotomies and he had two months of radiation. What really helped me a lot was learning the language. Once again, that whole culture thing, learning the right language, learning key people to approach, you know, sitting down with the social worker, bringing in everybody that you can to the table to say, Hey, look, let’s create something here is gonna be a little bit different from what you normally go through, but we know we can create it.

Draw in those people and get that information. It’s essential to draw in all the people in the, he like part of the team. You know, get them up to snuff, get them where they need to be. 

Diane Hullet: Well, Carrie, it strikes me, I mean, clearly for people in the Ontario, Toronto area, you’re a huge resource. You know, what is the best way for family, friends, caregivers to find resources like someone like you who has a disability lens through which they can help hold this experience?

Carrie Batt: So you know, the tricky thing is there’s not so many people end of life doulas who are offering. What I offer. But you know what? Beyond Canada, I know that the UK has done a lot of really, really great work. But mostly well, like, you know, I’ve, for me, my resources have been my own personal experiences.

I’ve learned so, so much by just being involved. Do you know what I 

Diane Hullet: mean? Yeah. Beautiful. I mean, so in some ways a family looking for some support might ask doulas or the hospice that they’re working with, if there was time to call in hospice to kind of say, is there anyone with this kind of background?

Yeah, yeah, yeah. Just that component of your brother being developmentally disabled gave you a different lens on the world. 

Carrie Batt: Yeah. And you know, it’s so funny because you don’t realize it until, you know, I didn’t realize it until I started getting into talking about grief support and, and end of life support that I realized what, what that means to families and what that means to service providers.

That I, I have a lived experience and the lived experience is so valuable in any component, in any aspect of life, right? 

Diane Hullet: Yeah. It really is. What are some of the ways that might, that disability might play out? Like you talked about communication being a challenge. Are, are these people who typically die younger?

Not necessarily. Depends on the disease 

Carrie Batt: process, I imagine. Yeah. Not necessarily. Yeah. So, so communication is essential, but the other thing is pain management. That’s a big, big key. And the other thing is comprehension. Those are the three main hurdles when you speak with the healthcare teams. Those are the hurdles is pain management, you know, like where do we start?

How do we know that you, the caregiver is giving us the most accurate information, right? That’s the big question because the healthcare team doesn’t approach things like that, right? So it’s a real curve ball for them to be able to have to rely on somebody else rather than the patient. It’s a real tricky thing just in there.

Changing up their approach, their thinking about it, that I’m gonna rely on you, the parent, the sibling, the service provider, to tell me where this person is at with their pain. 

Diane Hullet: Right. And somehow trusting that, you know, being curious, but 

Carrie Batt: that’s trusting. Yeah. And, and, and that’s, that’s but that’s the way it has to be.

You know, if, if you come into a situation where you can, you don’t know how to really communicate with somebody and you don’t understand their communication style, you would turn to somebody who’s who, who could be really efficient at it and feed me information. But yet the healthcare professionals have to kind of like do kind of like a bit of some soul searching.

You know, but it’s also education. That’s where the part comes in with the education piece, where you educate the healthcare professionals and the hospice, and even our long-term care. A lot of time with our situation, a lot of our people who have developmental disabilities, when we, our service providers can no longer take care of them.

We, we send them to long-term care facilities who have no training. Wow. That’s what I was just thinking. And they’re dying there too. Mm-hmm. 

Diane Hullet: Yeah. Is that typically, is that perhaps with hospice involved? Not 

Carrie Batt: necessarily. Not necessarily. No. This long-term care one is a real tricky one. It really hits me in the heart.

No it’s a real tricky thing. It’s only slowly, I, I, I’m a part of a group that we’re starting to talk about that, a long-term care group where Just recently I spoke and I, I, I was able to talk about developmental disability in long-term care with palliative care. And they, it was, it was a light bulb moment for them, so hopefully something will come of it, but it’s a bit of a stretch right now where I’m 

Diane Hullet: located.

I can imagine it’s, it’s money and time. I imagine a lot of people end up being cared for at home. And so then a fair amount of that falls on what, what are the family’s resources? Do they, do they have the ability to reach out and speak to hospice? Is there an appropriate hospice in their area? 

Carrie Batt: Well, there’s, you know, hospice too.

It’s a stretch for hospice. Yeah, yeah. It’s kind of like this. I don’t wanna say new, but it’s kind of like this adventure, this untapped adventure in a sense. You know, these are all the places that are going to have to come to the realization that the training will become essential hospice, your, your hospitals and your long-term care.

I mean, it’s small steps, right? At least we’re having this conversation. I had the conversation with the long-term care palliative care team that I joined, but it’s, it’s in conversation changes. You know that that’s a game changer, right? Just having a conversation. Then it leads to education. I had a beautiful experience during the Pande, the pandemic was a real game changer for death care and for grief because it really, it opened the door to how poorly death, dying, and disability, and grief, loss, and disability has been addressed.

And what happened through it for myself is that the, a bereavement agency contacted me and I was able to do a basic disability awareness training, a two hour. And it was beautiful because, it was nice because they acknowledged how little they know about disability and they, they realized that, but they actually acted upon it, sought out somebody.

And I brought in two people. One person who had spina bifida, who was in a chair, one person who has autism, who’s a playwright. And it was beautiful because the education was not just coming from me, it was coming from somebody who actually lives. And stems, I don’t know if you know stems, like let’s just say they rock or they move a something, a paper in front of their face.

So he, as he was talking, he was doing the stemming as he was talking about STEM stemming. So that was a big game changer for me, and I realized I need to move. You know, that’s how we change things. It’s not just by one person, but by actually people who have a disability speaking up and saying, this is what I’m going to need from you.

The healthcare long-term care, hospice, bereavement, this is what I need. 

Diane Hullet: You know, that’s fantastic, Carrie. I mean, that strikes me, that’s a real calling, right? Because it, it’s not you know, it’s not an entire class of a semester of med school, but they’re cramming so much information in. But at two hour training in the right settings, hitting the caregivers of people in, like you said, long-term care and palliative care and medical settings that really can take that in.

And it does. I think it a two hour training can really impact your practice. 

Carrie Batt: Yeah. You know, just like because those things are so, like for me, it’s no big deal. Like I did a, I did another thing with a fella that I support. He has autism and he rocks. Okay. Just to calm himself down. It’s like somebody who smokes a cigarette, right?

They calmed himself down with a cigarette. This fella rocks. So we got invited after I wrote an article about there’s no exclusions in grief. And so he and I did this. Presentation and it was so beautiful because here he was rocking the whole time we spoke and it was good for the viewer to see what you know what that’s all about, right?

Yeah. Yeah. What if you’ve never Yes. If you’ve never been around that. Yeah. Never. Yeah. For me it’s second nature is nothing. But it was so beautiful because like for end of life car doulas. Okay, so you show up into a family. Let’s just say the person is doing X, Y, Z, whatever it could be flapping their ears, maybe making voices noises that you’ve never heard.

I always talk about getting comfortable with being uncomfortable, and where do you fit into that? That’s your question. That’s a great question. Yeah. How are you gonna be, make yourself comfortable when you are so uncomfortable? 

Diane Hullet: Great question. I love that, Carrie. Thank you tons. This, I think this is just really the.

A, a beginning, just a, a tip of the iceberg of a much bigger conversation. But, you know, I hope it sparks some curiosity in listeners in terms of their own experiences with dis disability and their own interest in working with disability or how they might run across it, whether they’re a teacher, a nurse you know, a firefighter.

I mean, there’s all kinds of ways in which this is gonna come across people’s plates, and I hope this just kind of. Puts a new, a new level of curiosity on that for people. So I thank you so much and I hope you go out and keep doing presentations and training. 

Carrie Batt: Thank you. Kindly 

Diane Hullet: say your own website again, Carrie, so people can find you.


Carrie Batt: ww dot SoulCare, s e o l care, c a r e, dot c a. 

Diane Hullet: I love it. And the soul is spelled in a fun way because it stands Yes. 

Carrie Batt: Special 

Diane Hullet: and of life care. 

Carrie Batt: So thanks so much. And you know what that came from? I was doing I was an attendant for a fellow who was a quadriplegic. He had fallen down the stairs at 25 when he was drunk.

He fell on the stairs, became a quadriplegic, and he needed an attendant to go on a cruise. I became his attendant. I went and I was working on my website and stuff, and I was like, oh, I can’t find a name for my company. And he came up with it. He goes, Carrie, choose SoulCare. I was like, thank you. 

Diane Hullet: I love it.

So it can like straight from the heart from somebody who you were working with. That’s gorgeous. Yeah, totally. Yeah. Well, you’ve been listening to the Best Life Best Death podcast, and my guest today has been Carrie, bat out of Canada. Thanks so much for listening and see you next time. 

Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.

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