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The Change Foundation…

Today’s healthcare system is offering up new hope for so many, but its not without its own twists and turns, bumps and bruises. Few know the snags and frustrations better than caregivers— but mostly, their voices go unheard. One amazing organization in Ontario, Canada is changing all that. This week on Parents Are Hard To Raise,  how clinicians, patients, and family caregivers are working together to make the system better.

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Parents Are Hard To Raise® S03 Episode 117 Transcript

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Announcer [00:00:37] This week on Parents Are Hard To Raise Diane talks with Dr. Erin Heisz of the Huron Perth Healthcare Alliance in Ontario, Canada about what they are doing to connect the dots for family caregivers.

[00:00:50] Join 180 million monthly subscribers who can now listen to Parents Are Hard To Raise on Spotify.

Diane Berardi [00:01:07] Welcome to Parents Are Hard To Raise. Helping families grow older together without losing their minds. I'm elder care expert Diane Berardi.

[00:01:18] When a family member falls ill, Family caregivers come head on with many challenges and obstacles while still trying to care for their loved ones. Navigating a complex system of health care providers and organizations that lack connectivity and even decent communication can be maddening for caregivers as many of us know firsthand. My guest this week is part of a team that's trying hard to change all that.

[00:01:45] Dr. Erin Heisz has been a physician with the Star Family Health Team in Stratford, Ontario since 2008. She did her medical training at the University of Western Ontario and has focused her practice on family medicine ever since. Her decision to join the Connecting The Dots team came from a strong personal desire to better recognize and help the amazing family caregivers who are an integral part of the health care system and our communities. And today like many parents she spends the majority of her time trying to balance work, family and taxing kids around town. Dr. Erin Heisz welcome to Parents Are Hard To Raise.

Erin Heisz, MD [00:02:25] Hi. Thank you for having me.

Diane Berardi [00:02:27] Oh we're so happy that you're here and it really warms my heart that we're all focusing on the caregiver and recognizing the caregiver and that they have a voice.

[00:02:40] So how did you as a physician get involved with the Change Foundation and the Connecting The Dots project?

Erin Heisz, MD [00:02:48] Well it's a bit of an interesting story, so bear with me.

Diane Berardi [00:02:51] No that's great. We love stories.

Erin Heisz, MD [00:02:52] Oh Great. I'm good at telling stories. So this is excellent. [laughing] [00:02:57] And so I graduated from residency in two thousand eight and I already had one child. I had a child during residency and I was super keen so I started my practice in around Stratford Ontario. And I was asked, Oh will you be on this committee? Will you be this? Will you lead this project? And I kept saying, yes, because I thought, Oh yeah. I'm so interested in that. I'm so interested in that. And that's what people why people going to family medicine. Right? We're kind of interested in a bit of everything.

Diane Berardi [00:03:24] Yes.

Erin Heisz, MD [00:03:25] And but I had a great support system so I felt okay with saying yes and yes and yes. And fast forward about five or six years and I had a lot of meetings because over the six years you know they accumulate all these commitments and projects and things. But then my support system started to fade a little bit and I found it really hard to continue with that level of commitment.

[00:03:47] So my father in law he got diagnosed with esophageal cancer and passed away sixteen weeks later.

Diane Berardi [00:03:53] Oh I'm sorry to hear that.

Erin Heisz, MD [00:03:55] Yeah. And then my brother in law had a first episode psychosis right around the same time. My nanny moved back to B.C., and my husband quit his job and started his own business. So all of a sudden what I could manage before I really couldn't. So I stepped back from everything. I stepped back from all the committees all the meetings all the leadership positions I had. And just to make things work to focus on the family and my practice and everything. So then fast forward another couple of years and they get an email from our executive director Monique Hancock about attending a lunch session at the hospital for a project that our family health teams involved in called Connecting the Dots.

[00:04:33] And Monique doesn't ask a lot of me, so I always try to when she does ask I always really try hard to respect that in to attend whatever, you know what she wants me to do. And so I booted over to the hospital after my last patient in the morning and I thought I was just going to sort of sit there for 45 minutes and maybe let my mind wander a bit. But that was not the case.

[00:04:57] The minute they started the presentation, I hadn't felt excited like that for years. And I was like OK. So I really paid attention. I loved the slides like it was just set clear crisp slides with not really medical jargon and I got a bit tired of you know I only use the big long words when I'm talking to specialists or another colleague, I don't like to always use like words that nobody understands. So I thought the presentation was so straightforward and simple and it was but yet really effective.

[00:05:29] And in the audience were like normal, not medical people, caregivers, people, some physicians that... Like a nice smattering of people. And then I learned about the Change Foundation I had never actually heard of the Change Foundation before. So for me to hear about this cool independent think tank for changing policy in Ontario that was outside of the government got me very excited. Because I've watched millions of dollars sometimes be spent on a project that doesn't actually end up helping people in a tangible way.

Diane Berardi [00:06:05] Sure.

Erin Heisz, MD [00:06:05] So this looked. Really. You know there were deadlines. There were goals. And it seemed like they were going to be met. And so that also got me wanting to be involved because I figured OK I could dedicate some time and I could actually see some results instead of maybe six years later you see that something is coming out of the project you worked on you know five years ago. And then the major reason obviously was the content. So helping caregivers.

[00:06:34] That really struck a chord with me from those past experiences. And I have often felt helpless in the office when I've done everything I can medically and I've made all the appropriate referrals to you know to the home care. The patients on a long term care waitlist. I've referred to a specialist maybe to backup my thoughts of what the diagnosis and treatment plan is. And then it's sort of a waiting game for all those things to come in place. And I feel helpless. And I don't like doctors don't like feeling helpless.

Diane Berardi [00:07:11] Sure yeah.

Erin Heisz, MD [00:07:12] So I thought, well if this can help me at that stage when I've done everything I'm supposed to do if it can help me somehow make them feel better or make their life better or do something beyond what I'm already doing then it's definitely a worthwhile effort of my time.

Diane Berardi [00:07:31] You know I've been in health care my whole adult life and I've become a caregiver. You know recently to my mom and then my dad now.

[00:07:40] And even if you know where to go or who to call or what to do it's still... There's still so many other things and so many things that pop up and it's still so overwhelming.

Erin Heisz, MD [00:07:54] Yeah. I don't know how people can navigate the system, because I as well... Like there was another relative recently who unfortunately passed away and I helped a little bit by going to some oncology appointments and things and I found the system hard to navigate. And and I am a family doctor. Like if anybody in the world should be able to do this like a family doctor or a home care nurse like someone like that should be able to easily navigate.

[00:08:19] But it's not. It's Impossible.

Diane Berardi [00:08:21] You know I started getting calls from all different people for my mom's care, and every 10 minutes my phone was ringing with somebody else calling to schedule an appointment.

[00:08:33] I'm like oh my gosh you know. And I of course gave them my number because my mom doesn't hear well.

[00:08:40] Even though she swears she doesn't need hearing aids. [laughing] Because she polled I think three different... She went to three different audiologists. You know. Yeah. And the last one said, Well, I don't think, you might not need them. I don't know what she heard, honestly. [laughing]

Erin Heisz, MD [00:08:58] Well, she can't hear very well. [laughing].

Diane Berardi [00:09:02] And so you know you have to shout with her. So I was like, Oh she's not even going to hear the phone. And my father doesn't answer the phone. He just watches it ring, you know hears it ring...

Erin Heisz, MD [00:09:10] Well you know, it's a real problem because so many of our patients have cognitive problems that you can't call them with the appointment.

Diane Berardi [00:09:19] Right.

Erin Heisz, MD [00:09:20] And so then you're trying to reach the caregiver.

Diane Berardi [00:09:23] Yeah.

Erin Heisz, MD [00:09:23] And they're working and then it's this phone take situation. Yeah sometimes it's an appointment that's the next day. And so if we can't reach someone by 4:00 o'clock we got to cancel the appointment and you know book it for another day because you know you don't know that they've gotten the message.

Diane Berardi [00:09:40] And I can imagine because then the people think they have the appointment. I'm sure.

[00:09:44] Right. Exactly. Well you phone again and you leave a message saying Ok sorry, this one cancelled, but now we have one for the next day. Call us back to confirm. And then those patients can usually call in like first thing in the morning before the caregiver before they go to work or something.

Diane Berardi [00:09:58] So connecting the dots. Tell us about the goals and what it's all about really.

Erin Heisz, MD [00:10:04] Yeah. So connecting the dots project was a proposal put together from six organizations around the Huron Perth community. When the change foundation was originally looking for proposals for projects. So our connecting the dots project is a three phase project and each step is a co-design format.

[00:10:25] Now I had no idea what co-designed meant till I showed up to my first co-design meeting. [laughing] the.

Diane Berardi [00:10:28] Yes. What does that mean? [laughing].

Erin Heisz, MD [00:10:32] Yeah. So now I know. I've been doing this.

[00:10:35] So co-design means that the health care practitioners and the care givers in this situation.

Diane Berardi [00:10:42] OK.

Erin Heisz, MD [00:10:43] Are both at the same table and in the same room and have equal positions and equal voices. So we're facilitated by members of the Change Foundation who were part of the connecting the dots project, we're facilitated by them. But around the table there is no doctor Heisz it's you know we're all even and we all got to take our turns and respect each other. Every code as a meeting started with a little bit of a reminder about that. Now they did a great job, the steering committee did a great job of picking the people for the project. Because I think they picked people whose egos wouldn't sort of interrupt the flow of the project. And right... even on the steering committee, caregivers sat on that steering committee. And this one woman, oh my gosh, she amazes me. She's 91 years old. And she showed up to all these meetings brighter and better dressed than the rest of us. [laughing] [00:11:34] And she's so eloquent. And I just I was amazed at these people I met through the Co-design format. I was really lucky and honored to be working with them.

[00:11:44] I was nervous though. I was nervous about being interacting with people who could maybe be my patients and that they might possibly show me a rash just like we were talking about earlier. [laughing] That someone might corner me at the lunch table and just say, Hey I've got this thing on my arm. And I really wanted to step outside my family doctor role and be more of a participant like an equal participant, not sort of on duty in terms of clinical diagnosis during these sessions. But it didn't happen. It really was good. Everyone was respectful of each other.

Diane Berardi [00:12:19] And you also have this Time To Talk program.

Erin Heisz, MD [00:12:23] Right. So one of. So the three co design projects. I was involved mostly with the first one and that first one our logo or slogan was "time to talk". And it's sort of brilliant, I think. I did not come up with it. I'm not tooting my own horn. [laughing] So, time to talk really has a dual meaning and that's why I think it's really smart.

[00:12:43] And so it means that I as a practitioner need to make time to talk with my caregivers.

Diane Berardi [00:12:51] Wow. Okay.

Erin Heisz, MD [00:12:52] But the flip side is that it's time for the caregivers to identify themselves as a caregiver. Be proud of that. Stand up. Tell their story and ask for help.

Diane Berardi [00:13:04] You know it has to be such a weight off of caregivers because somebody is listening, and really listening.

Erin Heisz, MD [00:13:13] Yes I. So that for me is the biggest thing that changed for me. So earlier when I was saying I felt helpless, now I don't. Because I've learned through this whole thing and through Pat who I think you've probably seen the video that was linked to this project. Maybe not. But you should watch it if you haven't. It's it's amazing.

[00:13:35] And so Pat is a caregiver who tells this story about her husband's stroke and the following sort of six to nine months after that and ongoing obviously. But to know from her that just telling her story to us as the co-design group and as the audiences for these videos is healing and therapeutic. And so I never considered that. I didn't consider that in that room, you know, let's say for example, I've got you know a 60 year old couple and the husband's had a stroke. I didn't think that just by listening to the wife's story that that would actually help. So I feel like I almost rushed those patients because I felt helpless and I felt bad right. So, the longer I'm in there with them the worse I feel because I have nothing. I can't boost them up on the waitlist, it's out of my control how to get you know once I've done my referrals and I've pestered and pestered I and I'm sort of out of options to help anymore for certain issues. But learning that just listening it really changed the way I practice.

[00:14:42] That's wonderful because I think some physicians don't know what to do. They don't know how to react. And we're going to continue talking with Dr. Erin Heisz. But first if you're a woman or there's a woman in your life there's something you absolutely need to know.

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Announcer [00:16:52] You're listening to Parents Are Hard To Raise. Now thanks to you, the number one eldercare talk show on planet Earth. Listen to this and other episodes on demand using the iHeart Radio app. iPhone users can listen on Apple podcasts and Android users on Google podcasts.

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[00:18:00] It's great, because you don't have to be tied to a radio anymore. You can listen when you want, where you want, for as long as you want. And if you're listening to the show one of these new ways please do me a big favor. Share this new technology. Help someone else learn about the show and show them a new way to listen.

[00:18:20] So Erin, we were talking about you know you as a physician you do everything you are medically supposed to do. And I was talking to my husband the other night and I said my gosh I'd been in health care you know my my whole adult life and he's a physician as well. And I can't navigate the system. How does a person who isn't involved in health care at all know what to do or where to turn or... You know they just sit silently, I think, caregivers. And it's no good for their mental or physical health.

Erin Heisz, MD [00:18:53] No. That's one of the things that came up in our co-design groups when we were talking together. That the caregivers really had this bond forming every session you could see it getting stronger because of the information sharing between them. And they really wanted to come up with some way that they could share that with other caregivers. Because I can't answer those nitty gritty details, actually.

Diane Berardi [00:19:19] Right.

Erin Heisz, MD [00:19:20] You know where's. What's the best way to get CCAC or... like that's our home care program.

[00:19:25] Okay.

[00:19:26] But What... What are the tips and the tricks? I actually don't know what the whole thing is.

Diane Berardi [00:19:31] Right.

Erin Heisz, MD [00:19:32] So one of the things that has come from the co-design II group, which I wasn't as involved with but, is that we have a caregiver group run by caregivers for caregivers, so the doctors are cut out of the loop here, at the library.

Diane Berardi [00:19:49] That's great.

Erin Heisz, MD [00:19:50] Yeah. And it's starting to spread.

[00:19:52] So we have people who want... So Stratford's a town of 30,000. And some of the. But we have a large catchment for our hospital. And so some of the tiny little villages outside, they want a program. And so they're looking into you know church basements or what can they do and who can be the local sort of ambassador caregiver to get that running.

[00:20:14] And because with this project it is a limited time frame. So, everything has to be running independently by the time that the entire project wraps up in a year or two. And so these startup groups have been so important to help them system navigate. And one of the other projects of co-design II is a binder full of all that information that the caregiver needs to have with them. And I've had some positive, really positive feedback from some of the caregivers that the specialists are like, Oh, this is really good! And they start asking them about connecting the dots. And like that never happens.

Diane Berardi [00:20:57] Yeah. Right.

Erin Heisz, MD [00:20:58] Like usually you're so rushed. Your crunched for time. You don't start asking them about a project that they're doing it. So we've had some really good response to that.

[00:21:08] And back to the time to talk toolkit.

[00:21:10] So that was the one that I was more involved with.

Diane Berardi [00:21:12] Okay.

Erin Heisz, MD [00:21:13] And the parts of the toolkit are posters.

[00:21:16] So basically on the Change Foundation Web site you can find the link to the time to talk toolkits. And there are posters that you can download. And those posters are going to be put up in the waiting room or in the hallways, it's very translatable across whether you're a hospital, an office you know public health, whatever. And those posters just are trying to catch a caregivers eye to say, Are you a caregiver? It's really not set for staff.

Diane Berardi [00:21:46] Right.

Erin Heisz, MD [00:21:47] If you're not a caregiver you're not going to go the caregiver group. Right?

Diane Berardi [00:21:50] Right. Exactly.

Erin Heisz, MD [00:21:50] Yeah. So for identification. The tool kit also has in it a provider tip sheet which just is really a reminder to health care workers to ask the caregiver how they're doing. Help them identify themselves and include them as part of the health care team. Tell caregivers what's happening in what they can expect next. That was a huge one from our groups.

Diane Berardi [00:22:13] I would imagine yes.

Erin Heisz, MD [00:22:14] Yes.

[00:22:14] They want to some idea of what to expect. Encourage caregivers to accept help. Help connect them to resources, and revisit this conversation throughout the journey. Not just sort of you know, Oh. I've done the tip sheet. Check. We're never gonna do that again.

Diane Berardi [00:22:28] Right. Exactly.

Erin Heisz, MD [00:22:31] Then also the tool kit has the video which I was talking about, with Pat's experience. I'm in the video, too. But Pat's the star. She is amazing. And I seriously think she may go on to have a career in acting. She is a wonderful woman. And then there's a really great pamphlet that we came up with. And again, all of this was designed with caregivers having equal input to the rest of us about what we should include in it.

[00:22:57] So again a section for identification, a section on caregiver burnout, local resources, phone numbers, Web sites. And just encouraging people to take that time to talk with their family, with their friends, with their health care practitioners, with everybody.

Diane Berardi [00:23:15] How do you try to avoid burnout? What are some of the suggestions you have for caregiver burnout? Do you find that people... You know it's so hard to ask for help. I think.

Erin Heisz, MD [00:23:28] It is. It is. And I find also that people are so reluctant to accept the help that's offered from friends or neighbors. And I don't know whether it's that they're embarrassed maybe sometimes because something might happen while they're gone, that isn't socially acceptable.

Diane Berardi [00:23:49] Yes. Yeah.

Erin Heisz, MD [00:23:51] Yeah. Like with a dementia or with a disabled child. Like because we also had, it wasn't just them and people caring for older people within our co-design group, it also were some parents caring for disabled children. And so I think in a way they're nervous that something's going to happen while they're gone. That person can't handle, maybe. But if you don't give it a try then that burner just continues. Right? So accept the offer of help for someone to sit with your loved one for two hours so you can get a haircut and won't feel guilty.

[00:24:23] Yeah. The stories and the amazing things, like that just broke my heart to hear some of the stories of what people go through. One of the members of the co-design team was actually my friend. Like I knew her as a hockey mom on my hockey team. But she has a daughter who's 15 with Down's and autism and she gave me permission to talk about her.

[00:24:44] And I had no idea what she struggled with on a daily basis and now believe you me I say, HEY I'M COMING OVER FOR A COUPLE HOURS. YOU NEED ME. AND YOU GO AND I WILL DEAL WITH WHATEVER IS GOING ON.

[00:24:55] She accepts me. She accepts that now. She'll take my offer.

[00:25:01] I guess you know we kind of suffer in silence. And I'm the first one, I've always been the first to say, You have to ask for help. You have to tell people what you need and blah blah.

[00:25:10] But I don't know. You know me in the role now, I feel like I have to do everything.

Erin Heisz, MD [00:25:16] Yes.

Diane Berardi [00:25:16] It's like tasks. And I feel guilty if I don't.

Erin Heisz, MD [00:25:20] The guilt is so hard.

Diane Berardi [00:25:23] Yeah.

Erin Heisz, MD [00:25:23] And you can never be perfect and you can never do it all. And so the guilt is such a wasted emotion for everybody. Right?

Diane Berardi [00:25:32] Yes.

Erin Heisz, MD [00:25:33] It serves no purpose for anybody.

[00:25:35] And so I think part of this project is to really inspire the health care practitioners to help caregivers recognize who they are. But also to say, What's the one thing today I could do for you to make your life better?

Diane Berardi [00:25:54] Oh my gosh. I think people would feel so... They probably want to cry, hearing a practitioner say that to them.

Erin Heisz, MD [00:26:02] Yes.

Diane Berardi [00:26:05] How do you convince your colleagues to use the tool kit or to do this?

[00:26:09] Yeah it's a it's a tough one. Right? Because we're... You know, we're busy. We're running. We've got stress, burnout, government cutbacks. You've got all these things weighing on you.

[00:26:23] However, when I watched that video of Pat that was really the moment where I felt in my gut, I went into medicine to help people and I think most of us did.

Diane Berardi [00:26:34] Sure. Yes.

Erin Heisz, MD [00:26:35] And that just really brought it back to me that this woman is suffering. And my job is to help suffering. So I need to also focus on her. And so when I felt that, I knew if I could get other physicians to feel that... Now the thing is to get them to watch the video, right?

[00:26:58] When you watch the video. Like honestly, I cry still every time, and it's been over 30 times.

Diane Berardi [00:27:02] Right. Yeah.

Erin Heisz, MD [00:27:04] So if they could take the time to watch the video then they have that feeling, most of them. Honestly a lot of them have given me that feedback. That Pat's story just hits them. And then they're much more open to using the rest of the toolkit. Right? To review the tip sheet. To have the pamphlets in their exam room. To support the patients to going to our Web site. Because that was one of the further co-design projects, they just released the Web site caregivershuronperth.ca which is really a great resource for a caregiver to go and just kind of click around on the different...

[00:27:42] They've got the videos up there like Pat's story. And then they don't feel so alone to see what Pat went through and that she's talking about it.

Diane Berardi [00:27:49] Right. Right.

Erin Heisz, MD [00:27:49] And Pat's life is very different. So just from being part of this project she says her life is so improved. People ask her how she is now. They see her. They don't just look at her husband. Her Grandchildren have told her how proud they are of her for looking after their grandpa like that.

[00:28:08] Again, I’m getting like tears right now, talking about it. I've gotta stop. But, so I need the physicians and health care practitioners to feel. And when they feel we do a really good job when we feel. And a lot of times that's almost reserved for a diagnosis of cancer, or for things that are end Stage. Right? And then are feeling really comes in. Otherwise, if you feel everything for every cough, cold, you know... You have compassion fatigue not be able to feel anything anymore.

Diane Berardi [00:28:36] That's right.

Erin Heisz, MD [00:28:37] So if you can bring that feeling out again and the physicians then they buy in and they're part of this.

Diane Berardi [00:28:44] You guys are doing such remarkable work. How do people find the Web site? Could you tell us the Web site?

[00:28:51] Yes. So for this part of the project it's CaregiversHuronPerth.ca. And then for the Change Foundation I don't actually have it in front of me but if you just Google Change Foundation. I think it's changefoundation.ca Sorry that I don't have it with me. [laughing]

Diane Berardi [00:29:04] No that's fine. We'll have it on our Web site as well.

[00:29:11] Dr. Heisz... Thank you so much for being here today.

Erin Heisz, MD [00:29:14] Oh thank you so much for having me. It was a real pleasure.

Diane Berardi [00:29:17] Parents Are Hard To Raise family, I love getting your e-mails and questions so please keep sending them. You can reach me at Diane at Parents Are Hard To Raise dot org or just click the green button on our home page.

[00:29:28] Parents Are Hard To Raise is a CounterThink Media production. The music used in this broadcast was managed by Cosmo Music, New York, New York. Our New York producer is Joshua Green. Our broadcast engineer is Well Gambino. And from our London studios, the melodic voice of our announcer Miss Dolly D.

[00:29:44] We love our parents, but parents sure are hard to raise. Thank you so much for listening. Till next time, may you forget everything you don't want to remember and remember everything you don't want to forget.

[00:29:59] See you again next week!

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