#066 Complex Medical Care Coordination with Dr. Eyal Cohen

#066 Complex Medical Care Coordination with Dr. Eyal Cohen

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“…In large part, the modern Western healthcare systems were created in post world war two era and were very much focused on acute care. The idea being, you get sick, you go to the hospital, the hospital looks after you, and then you go home and all as well. That’s a bit of a simplification. There were much higher mortality rates back then than there are now. But, the idea that you needed lifelong support was not the main bread and butter of the way our healthcare system was designed. In a way we are kind of, the words that have been used were victims of our own success. There have been extraordinary medical, technological, surgical advancements that have created opportunities for children who previously would have died from their underlying conditions to survive much longer.”

medical care

Dr. Eyal Cohen co-founded the Complex Care Program with his colleagues in the Division of Pediatric Medicine at the Hospital for Sick Children (SickKids). He is currently the Program Head in Child Health Evaluative Sciences in the SickKids Research Institute and CoExecutive Director at the Leong Centre for Healthy Children. Dr. Cohen is a Professor of Pediatrics and Health Policy, Management and Evaluation at the University of Toronto. He is also a Scientist with the CanChild Centre for Childhood Disability Research at McMaster University. Dr. Cohen serves in a number of advisory roles for the Provincial Council of Maternal and Child Health, BORN Ontario, and the Ontario Public Drug Program.

Dr. Cohen has been Genia’s son’s complex care doctor for his whole life. Genia and Dr. Cohen discuss why complex care is so important to the life and happiness of kids with complex medical needs and their families, the evolution of health systems to respond to the needs of our kids and what parents can do when there is no care coordination available in their community.

When people with disabilities are in the hospital, having a parent or other known supporter with them for support and advocacy is essential for reducing errors, improving outcomes, and may even save their life.

Join this FREE, online mini-course on being an effective medical advocate for your loved one with a disability.

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Transcript

Genia:
Welcome to the Good Things in Life podcast. I’m your host Genia Stephen. I’m really glad to be here today with dr. Eyal Cohen. Dr. Cohen co-founded the Complex Care Program with his colleagues in the Division of Pediatric Medicine at the Hospital for Sick Children, SickKids in Toronto. He is currently the Program Head in Child Health Evaluation Sciences in the SickKids Research Institute and Co-Executive Director at the Leong Center for Healthy Children. Dr. Cohen is a Professor of Pediatrics and Health Policy, Management, and Evaluation at the University of Toronto. And he’s also a Scientist with the CanChild Centre for Childhood Disability Research at McMaster University. Today, we’re talking about complex care coordination and health care coordination in general, for kids with disabilities. Let’s get started.

Genia:
Dr. Cohen. Thank you so much for joining me today on the Good Things in Life podcast. I’m really grateful that you are here. We have known each other now for coming onto 14 years, which is shocking to me for a couple of reasons. One, because as we were just saying, we both now have teenagers. And 14 years ago, we both had toddlers. You were much closer to the beginning of your medical career. And we met when you were a staff physician on the floor at the hospital for Sick Children in Toronto. And my son, Will, was still in his initial hospitalization after birth. So we’ve known each other quite literally since the time that Will was born. And three-ish months later, just to provide background for people, Will was excepted in as one of the inaugural patients in the complex care program at the hospital for Sick Children. So that’s kind of the background to how we met. And, thank you very much both for that and for being on the podcast today. I appreciate it.

Eyal:
Pleasure.

Genia:
Eyal, can you start by talking or explaining what led you to focus your medical career on kids with complex medical needs?

Eyal:
Yeah, sure. So if, you know, like most things around decision making in life, you sometimes go and look back and look at formative experiences in your own life. And I was, my first job actually, my first job was a paper route, so that doesn’t count. My second job was, I was 17 years old and worked as a counselor in a camp in Orangeville, which is now defunct, run by a foundation called the The Reena Foundation. The first month of which was a camp for children with developmental disabilities. And second month was a camp for young adults with developmental disabilities. And the, it was an extraordinarily meaningful experience for me because I just had fun. I found the kids and the young adults fun to work with. I found that after a very short period of time, all the, a lot of the stigmas that I had about what disability meant disappeared as we just focused on what camp is all about, which is again, having fun, going in the water, singing songs, doing things by the campfire. Fast forward about, I have to think here, about 10 years later, as I went through my educational career, and in my subconscious, this probably stayed for a while.

Eyal:
I became a pediatric resident. And during my pediatric training, I was always most interested in kind of following up and developing longitudinal relationships with patients that I met. So I work, I do a shift, you know, in a residency, you go from rotation to rotation. And it’s often you have fleeting interactions with parents and children and families. So I go for [inaudible] emergency department rotation and I have a 10, 15, 20-minute encounter with a family and a child with complex needs who ended up getting admitted to hospital. And I come back the next day and I just want to see how the family was doing and how the child was doing, and go up to the wards and visit them. And I found that very meaningful.

Eyal:
And when I look back again to my residency, the patients I remember, it’s not diseases that they had, it’s the fact that I had the opportunity to partner with them together in care. And at the time there was no such thing as a complex care program at the hospital for Sick Children. So I can’t say I went down path A because I had that choice available in front of me, but I certainly, was attracted to the idea of having a career where you had that incredible privilege of working with these children and families and seeing the extraordinary things they’re capable of doing.

Genia:
Eyal, I’m going to pause for a second because I can hear myself coming back through your, I actually can’t hear it now. Just when I was saying, “Uh hmm”, I could hear myself coming back to your speaker, but now I don’t hear it. So maybe it doesn’t matter. We’ll just going, sorry.

Eyal:
No problem.

Genia:
So you said that at the time that you were going through residency and at the beginning of your career, there was no complex care program. So can you talk about sort of what a complex care program is and the genesis of this as a field of medicine?

Eyal:
Yeah, so we know that the way our healthcare system has been created, it was created, in large part, the modern Western healthcare systems were created in post world war two era, and were very much focused on acute care. The idea of being, you get sick, you go to the hospital, the hospital looks after you, and then you go home and all as well. That’s a bit of a simplification. There were much higher mortality rates back then than there are now. But, the idea that you needed lifelong support was not the main bread and butter of the way our healthcare system was designed. In a way we are kind of, the words that have been used were victims of our own success. There’s been extraordinary medical, technological, surgical advancements that have created opportunities for children who previously would have died from their underlying conditions to survive much longer. However, unfortunately, there was a lag between the time, these kind of, what I call this epidemiologic transition occurred.

Eyal:
And, the time in which our healthcare system actually realized that it needs to respawn and design itself in a different way. The analogy I sometimes use is for acute care, which again is the way most healthcare systems are designed. You know, the most important part to be successful as an acute care organization is around things like access to care as quickly as possible, high technical proficiency of providers in an organization, the fact that they’re using evidence-based treatments to, in management for patients. So that paradigm is all good and nice and still works, and still very important part of what is done in health. But when you start talking about people who have chronic issues and issues that are lifelong and needs support lifelong, that model kind of falls by the wayside.

Eyal:
The example I use is sometimes for a condition like diabetes. I could be the best diabetes doctor in the world providing the best evidence based care to my patients. But if the patient isn’t engaged in care together with me, if we’re not partnering together, I can make whatever recommendations I want, but their ability to follow through on those recommendations might be limited. And I won’t be successful as a clinician unless this partnership model happens so that they’re informed, engaged in their own care. So if I really distilled down the difference between traditional kind of healthcare and chronic complex healthcare, that fundamental notion of partnership is essential. When I started on as a faculty, one of my mentors, Norman Saunders, was a community pediatrician who unfortunately got very ill. And his patients wanted to do something in his honor.

Eyal:
And he, with a lot of foresight, said, you know what? We, as an organization here at the Hospital for Sick Children and have to do something different about patients with complex needs. There’s lots of them, they’re here often frequently and for long periods of time, but their care is balkanized. No one talks to, the left hand doesn’t talk to the right hand within the organization quite frequently, or terrible at engaging with our community providers, with home care with schools. We all kind of go and dig our head in the sands and do our own thing in acute care, but forget the totality of these children’s lives and the ecosystem of healthcare around them. So, they, his patients actually created a philanthropic endeavor that gave us a bit of seed money to try to develop a model of care that was different.

Eyal:
And we piloted something very, very small. And it began initially with the idea that a lot of our inpatients are here for long periods of time. In the past, we would have just discharged them home back to a community-based provider, a family doctor, or community pediatrician, kind of waved goodbye at the curbside and hope for the best. What we decided initially was we would try to create more of a holistic system of care around the children by assigning to each of these children, even after they left hospital, a nurse practitioner and a pediatrician who would co-manage care together with a family and their community providers. And I think Will was one of the first patients, as you mentioned, in this kind of pilot. We originally piloted it with 28 families. That was the original pilot of how we were going to do it.

Eyal:
And we evaluated it and found a lot of really, really promising things. The families were happier, the kids received better care, and for the penny counters in our hospital who have to this thing long term, we actually found that kids were able to go home sooner from hospital and were less likely to come back to hospital most likely to get readmitted. So it was kind of a win, win, win from the prospective patients, families, and the hospital. We subsequently got more feedback and found, it was still an imperfect model. And the imperfections in the model were that the most, the one we recognized soonest was the fact that we were still nesting all the care within the four walls, but tertiary care hospital in downtown Toronto. So for many of our families, that’s a challenge.

Eyal:
It’s all good and nice to have care coordinated from a tertiary care center. But a lot of families didn’t want to drive a vast distances for a province like Ontario, where about half the profits comes here for their tertiary care. That can be very, very difficult and for families who have school and work and other siblings in the family to come down. So the second iteration of our model, we actually partnered with a couple of community hospitals. Our original ones were in Orillia and Brampton to develop a partnered-based model where actually, the clinics were not running, it’s the kids actually running community hospitals. But the personnel who ran the clinics had affiliations with both organizations to make it as seamless as possible. So it didn’t feel like they were being pushed out of tertiary care, but rather that we had a collaborative, integrated model of care. And that pilot was also very successful.

Eyal:
And based on that, we actually, together with a large partnership of other organizations in the province of Ontario, successfully lobbied the government to create some funding to create something called a Complex Care Kids Ontario (CCKO), which, to make a long story short, now has, within the SickKids model, about 550 patients followed, of which over 400 are actually followed in community sites – North York General, Orillia, Barrie, Peterborough. I’m missing a bunch – Mississauga, the Eastern part of Toronto at Michael Garron hospital. And some new interesting partnership with the Children’s Treatment Center in Timmins, Ontario. And then there’s other models that developed from other tertiary care centers in the province like Ottawa, Hamilton, and London as well, that are very similar also with the same sort of collaborative community based model. So we moved very, very far ahead.

Eyal:
There’s still lots of kids we need to encompass within this model of care. You know, if we’re seeing somewhere, I think provincially, why we’re probably close to a thousand patients now, but there were probably at least two or three times more who aren’t involved within the small of care. And the other limitation is we still have a lot of families drive to Toronto to get their complex care coordination, which I still think isn’t isn’t ideal. I think we have pretty strong evidence that these community based models are actually the ideal state, but it’s challenging because each community is a little bit different and you need, you really need local leadership and local partnership to make it happen. It’s a very long winded way of saying we’ve kind of gradually built something that I think meaningfully provides more holistic care to these children and their families with tons of support from clinicians, from family members, from hospital administrators and policy makers to make it happen at least here in Ontario.

Genia:
So where does this fit within the, where does, what you’ve done in collaboration with many colleagues, I know it’s not entirely your shtick, but where does the Ontario model of complex care coordination fit within a more global kind of field of complex care?

Eyal:
So there’s lots of similar things going on in other parts of Canada, in the United States and other parts of the world that are similar, although different. You know, context is very, very, very relevant in health service delivery. In the US, to give an example, actually, there is an act that passed in Congress in the spring, believe it or not, that was sponsored by the Trump government which is the bipartisan endeavor called the ACE Kids Act to deal with another kind of issue in the United States, that’s particularly relevant, which is the problem with kids crossing state lines. So in rural States, they may not have a lot of specialized services and may need to cross state lines to get care. So, it’s again, focused around this notion of providing care coordination on a population level, for children with complex needs.

Eyal:
There’s a collaborative endeavor that’s also been funded by the US government amongst 10 different States to also develop innovative models of complex care and spread and scale them across the States. Other provinces in Canada have also developed kind of similar programs. There’s a nice program in New Brunswick on care navigation for children complex needs, and other provinces are developing models as well. And we get together not infrequently, again, clinicians, policy makers, families to talk about learnings from different places so that we can spread and scale these innovations, I think in other parts of the world, similar things, there’s a lot of work going on in the UK and Asia and other parts of the world coz people are starting to recognize that, that there’s, that these kids need services and that they need coordinated services.

Eyal:
In the past, I think, a lot of policymakers haven’t thought about this population of children very much, and the reason being they’re numbers are small, right? It’s not like, if you ask the average policymaker, what is comp, what, what, when you think of a person with complex needs, what do they think about? They probably think about the a frail older person, who has multiple comorbidities and living in the community without, with inadequate social supports. And there are many, many more of those people than there are children and young adults with complex needs. However, we have to be careful not to create an entire healthcare system built around that population because otherwise, again, the kids that I look after, will get all offended. And the other piece that’s very relevant is in the past, a lot of people have advocated on, on behalf of children with medical complexity or children with disabilities focused on individual diseases or individual conditions.

Eyal:
So, and again, this isn’t meant to be critical of those endeavors. I think they’re very important. But it’s important to understand also what the, what the repercussions of that is. So if all our lobbying is around autism, around Down syndrome or around any other individual condition, it does create an issue in that. Again, there’s only a limited attention span that we have in policy around what we can do in the child health space. So the idea of creating a community of people who care for, or family members or advocates of children, not based on their individual diagnoses, but based on the collective experience that they have is very, very relevant. If I look at the patients in my complex scale program, actually very few of them have the same diagnoses in the genomic era, right? Like the rule in pediatrics in specialized centers is people have rare disease. They’re rare individually, but collectively they’re actually fairly common and the needs of these children and their families are fairly similar.

Genia:
So I just want to, I just want to restate what I just heard you say. So essentially, the, I was just about to say it in a way that was more obscure. Hold on. Let me think about that for a second. So essentially the diagnosis are very varied, but the need for complex care coordination and the needs of kids in general, especially if they have some, or specifically to the care program, if kids have a need for medical care in order to enable them to, you know, pursue life, those needs are fairly generic. Like they need good coordination. They need to make sure that their physicians from different subspecialties are talking to each other. They need to make sure that community care and hospital care are well coordinated. They need to make sure that they’re, you know, they’re in their families, psychosocial and emotional needs are attended to, and like those things are, they need quality education. Those things are the same, regardless of the specific diagnosis that any individual child might be.

Eyal:
Yeah, for sure. If I had to boil it down to one line about what the commonality of this group of children, it would be that they require care from lots of different people in lots of different places for a long time. Right? That I think distills down in essence, the collective experience of all of this children and their caregivers.

Genia:
Right now, we’re still in the middle of COVID restrictions on visitors and support people in hospital. Now, if you have a child with a disability, that’s quite young, pediatrics is still a little bit more open. But if you have a child or a loved one with a disability, that’s older, there’s a very good chance that you won’t be able to go with them if they were admitted to the hospital for illness or injury. Now, most people with disabilities really need an essential supporter there who knows them well to prevent medical error, to reassure them, to help them through the experience and to minimize harm, and even the increased risk of death that people experience. I’ve created a free workshop called Medical Safeguarding, Protecting Vulnerable Patients in the Hospital. This workshop covers creating a compelling argument for having the bedside presence of an essential supporter or a loved one for people with disabilities. It talks about how to be an effective medical advocate once you are in the hospital and what to do in order to safeguard your loved one, if you’re not allowed in, and you have to be advocating from a distance. You can join the free workshop by going to goodthingsinlife.org/staysafe.

Genia:
So, one of the things, when you were describing some of the issues in the system, you said when Norman Saunders was, Dr. Saunders was, Saunders, right?

Eyal:
Saunders. Yeah.

Genia:
When Dr. Saunders was talking about what is not being done or wasn’t being done really well within the system, one of the things that you said is that the conversations between departments or between specialists wasn’t quite right. And I just want to circle back to that a little bit, because I think it’s something that parents can really relate to where, you know, they go to one doctor who has no idea what happened at a different appointment or what a different doctor said, and they’re getting sometimes conflicting advice. Or they’re getting recommendations that could be unimplementable because of some other aspect of their child’s reality, or could be downright dangerous because of some other aspect.

Genia:
And I’m not coming at this from a critical perspective either. It’s just the nature of what happens when you have an organ or body part specific specialty that doesn’t talk to the other specialists responsible for other body parts. And so I’m partially, I’m bringing back, bringing this back because I’m interested in how complex care affects kids’ outcomes, like their health outcomes, because that, the segmentation of specialties without good communication tends to lead to all kinds of error and illness and harm. So this is, this is, it sounds like maybe a leading question. I actually don’t know the answer or whether or not there’s sufficient data yet to inform this question about whether or not kids actually are measurably healthier and experience less harm.

Eyal:
Yeah. So, excellent question is kind of the question around, do we have metrics for success of this? I think that’s what you’re asking. Right. So, to your first point around how do we ensure that the left hand is talking to the right hand and again, in a system where there are many, many players, we’ve been instituted in our complex care program and lots of complex care programs around the world, kind of things to put in place to make sure that the left hand knows what happened with the right hand. So for instance, one of my colleagues, Sherry Adams has, for the last 15 years, iterated a template for care plan. So what a care plan is, is it’s like a medical passport that summarizes in a neat way, not like a passport with a bunch of stamps on random pages, where, you know, what all the totality of health issues are and how they are best addressed so that when you go see the expert in the fifth toe, they have a place, a single document that said what the first toe does.

Eyal:
And I can’t emphasize enough how transformative that thinking was. It may sound for people listening, like a fairly simple thing to do, but the entire healthcare system has been constructed on the idea that people document in episodes in healthcare. No one documents, anything in a summative way. You don’t get any, when you go see a doctor or a social worker or a therapist, they write a note. And then what you ended up happening is charts that end up piling, whether they’re electronic or paper charts, end up becoming like mountains. I sometimes joke I still have, I still sometimes break out in a cold sweat thinking back to my training days when I’d go again, I’ll give the analogy I gave before of point of seeing these families in an emergency room after they’d been probably sleepless for days because their child was ill. And I wake up the poor parent at three o’clock in the morning, and tap them on the shoulder and saying, “I’m sorry for waking you up, but can you remind me again, does Sally have any allergies to any medication?”

Eyal:
And, you know, this is, I like to say, this is what makes people yell at receptionists. Right. And so the, and this is what makes medical errors happen, right? Like medical errors happen when we have, incomplete information and these children are at much higher risk a medical error than other kids. So from the studies that we have done, we have shown, improvements in many of these outcomes. It’s a little bit challenging to answer the question. Do we improve the health of the children? It depends on how you define health. I, many children in our program have life-limiting conditions, many children in our program have progressive conditions. I think it would be wrong of me to say that we alter the natural trajectory of many children’s underlying conditions. But without a doubt, if you take a definition of health, that’s a little more holistic, which is it’s the well-being of a person, it’s not just about their underlying health condition, but it’s also around their activities, their participation in communal life, their general quality of life, and those of the people who surround them and their family. We have pretty consistent data to suggest that models of care like ours and those that have been developed in other places, consistently improve those outcomes.

Genia:
Yeah. Will has a complex care or a care summary. And so again, every, sorry, I’m looping back, but every parent who has a kid that has medical conditions is familiar with the, “Excuse me, can you remind me whether or not, you know, your child has allergies?” But when your kids have complex care needs, it’s far more than that. And physicians and nurses and other allied healthcare workers are very often leaning on the memory and the expertise of parents, which on the one hand, I think is appropriate because parents are likely to, in many ways, be the best informed and have the strongest memory about the one patient, you know, that they are focused on, the one child. But on the other hand, I remember the point at which I could no longer remember every detail in Will’s summary. Like I, for a long time, first of all, because he was so ill for so often, almost the only thing I did in life was talk about his medical care.

Genia:
Like, it’s kind of felt like that, right? So it was always top of mind, but then there came a point where he got a little bit better and life expanded and it wasn’t the only thing I was ever thinking about, which is wonderful. But when kickback to that is that the, I had seen at one point Will’s file, Will’s paper file before SickKids went to electronic medical records, and it was boxes. I can’t remember why I saw that, but I think it had been shipped up because somebody was looking for some obscure fact or something. It was boxes high. And I remember the point at which I couldn’t remember anymore and how scary that was because really important decisions were being made. And often, largely based on what I could remember, or what happened is that they started, whatever situation we were in, they would start recreating the wheel.

Genia:
If I couldn’t remember the data, then they would start all over again and kind of establishing something so that the care plan, like that came in fairly early in Will’s life. But that a number of times has meant that Will’s had more efficient care, you know, like more, less time consuming care. It’s faster, delivered faster, more accurately, and there’s a broader picture. So whatever physician or healthcare provider Will is speaking or is caring for him in that particular moment can bring all of their expertise to the situation because they have a really fast, big picture idea of who Will is from a medical perspective. I also remember, like one of the things, it may still be in Will’s care summary. I’m not really sure. I’d have to go and check, but years ago.

Genia:
So Sherry Adams, the nurse practitioners, Will’s, Sherry is Will’s nurse practitioner. And I, we had had a couple of experiences where people wouldn’t listen to us and Sherry wrote in the care plan, something along the lines of, but much more professionally, this kid might not present quite as you think, please listen to the parents if they say he’s really sick. You know, and that opens so many doors for us when he was really sick, but he, you know, it wasn’t obvious that he was really sick and having the backing of, as a parent, having the backing of the complex care program at the Hospital of Sick Children endorsing our opinion about whether or not things were okay or not okay. Also went a long way in sort of greasing the wheels of what is sometimes a clunky system. So yeah, it works well.

Eyal:
And we’re not done, like we’re still trying to improve it. And I, getting feedback from parents has been invaluable in different iterations of it. So I’ll give one example from the past and the one curtain thing we’re working on. One of the feedbacks we got when we originally asked families about these care plans was what else? Right. And a very, very simple thing was recommended to us early on, which has put a picture of the child in the care plan, which is so valuable on so many levels, it personalizes it, and there’s other things we’ve done a personalized and that it’s not just medical and it reminds people who see it, that there’s a person there. The second thing is it’s, it gives a picture of what the child looks like when they’re well, so then a provider who sees them can actually have some norm reference for what they’re seeing.

Eyal:
So, so really, really helpful, but where we like to move forward in, in the near future, we have a couple of projects on the go, building. This is actually more collaborative building of these with parents. So, one of my colleagues, Julia Orkin together with Sherry Adams are actually developing, an online platform. So families can actually input into the care plans themselves. So what we do now is we, we create them and then give them the families to proofread. But wouldn’t it be great if families could actually input into it, I would increase the accuracy of it, get them engaged in the process of developing it, not alone, we would, we would do it with them. So, so, but, but, but we think it would probably create a much more robust and accurate assessment of the child. So again, that’s, I’m coming down to that principle. I talked about before of how chronic care differs from other kinds of care. It’s all about partnership.

Genia:
Yeah. That partnership, I think the partnership and the continuity of care over time is one of the things it has to list in the top five or 10 things that I think are most valuable about complex care coordination. I mean, there’s, there’s, I mean, we know from medical literature that continuity of care makes a big difference in reducing medical error, and improving health outcomes. We also know that it lends itself very well towards improving patient and family satisfaction levels with care. And I think about the, there are many aspects of this that matter. You know, I think about the number of times over Will’s life, where you or somebody on your team has intervened. I remember at one point in particular, Will was having a really not very complicated procedure. It was one of the times he had his tonsils out, who knew that could happen more than once, but one of the times he was having his tonsils out and he was having, some obscure complication, which is, you know, completely ridiculous.

Genia:
And, I wasn’t there, but Brandon, my partner was there and they, somebody wanted to give him medications that just would have been dangerous. And I don’t think that, and what happened was you came in and advocated on Will’s behalf and said, listen, you’re missing this little piece of the picture here. Like you’re, and, you know, you can, it’s reasonable and understandable that they were missing that little piece of the picture, but it’s only the continuity that could lend towards the advocacy in a moment when a drug is about to be administered to a patient, because if you don’t have that continuity, all that back research has to be done before somebody can intervene. And by then, it’s too late like that. So there’s been a number of times in Will’s life where that continuity of care. And just having a sense, I know you don’t have Will’s medical history memorized.

Genia:
Like I know that that’s not what you’re bringing to it, but that general sense of who somebody is and what their issues are over time makes a big difference. And from a parent’s perspective the, like the, I’m a health care provider. I have a great deal of respect and trust in healthcare providers, in their training, in how much they care about their jobs and you know, why they put up with working in a healthcare system, like all of those things. But I also have a fair amount of, I don’t know, like I will question people and I will, I’m not necessarily just going to do what, I don’t do, what I’m told very easily. So that’s sort of the other side of things. But I’m much more likely to do what you say then I am like in a, I might ask you questions too, but I’m much more likely to just trust what you say at face value than I am somebody that I’ve never met, because I know that over the last, nearly 14 years, that you have gotten to know our family and our family’s values and preferences and goals, and there’s been an established over and over again, experience of building trust that not only do you know it, but that you are committed to working with us towards our goals and consistent with our values around our son’s life.

Genia:
And that’s just not the case when you’re just meeting somebody for the very first time, you know? And so, you know, having some people in the healthcare system that, you know, that you, trust and sometimes can help you, like, I was going to say weed through, it’s not really that, but like clear some of the questioning about where other recommendations are coming from, particularly when there’s not one clear right answer, that’s incredibly valuable. Incredibly valuable and both in the improving health outcomes, I think. But also just in the sort of ease of or decreasing the stress and pressure of trying to make good decisions over a lifetime of medical decision making with your kid. So I think that that piece of, I don’t know whether continuity of care actually is an inherent kind of pillar in the world of complex care coordination. But I know for us, it’s been a pillar, in our lives, in our experience of complex care.

Eyal:
Yeah. So, we purposely did design it around to maximize continuity of care. That’s the whole idea of, and again, it’s not, lots of people have studied this for a long time. I just want to point the continuity of care, what you’re referring to is probably the most part of continuity care, which is what I call relational continuity, that you’re seeing as much as possible. And again, it’s impossible to do it, that you’re seeing the same provider every single time you are experiencing the system, but as much as possible that you’re seeing providers that you know, as you mentioned, probably plays a huge role in building trust. And from the provider’s perspective, I have to say it also makes providers quality of work-life a lot better. Right. None of us like the experience of asking people, tell stories again and again, and again, when clearly it’s frustrating. Clearly it is a high risk situation in terms of error. So relational continuity for sure is important, but even those care plans I talked about, I look at that as continuity of care as well, it’s just documentary continuity of care. So, yes. Continuity is within, you know, within the DNA of what all our complex care programs do to maximize as much as possible. Because again, at the end of the day, it leads to better care, less stress, and more seamless experiences in the system for children and families.

Genia:
So, Dr. Cohen for families who don’t have access to a complex care program, which is probably most people listening to this podcast, do you have any recommendations around how parents can take some of the ideas of complex care coordination and implement them? Like, I would imagine, like a care summary for example, is one thing that somebody could at least make some efforts towards. But are there other aspects of care coordination that people can think about as they navigate healthcare system?

Eyal:
Yeah. So a few thoughts I’ve heard from families that are very helpful. So again, I’ll come back to any form of summing up your child is helpful and that can exist in different ways. It can be a binder for a lot of people. It can be, again, a single document, ideally, that you can prepare with a healthcare provider, but even one that prepared on your own can be extraordinarily helpful. One example of something we have started to use clinically a little bit. That’s very powerful, our care maps. So care map is basically a diagrammatic representation of who your child is and who all the people in their lives are and how they relate to each other. So, Julie Drury in Ottawa, very, very effective, parent advocate has an excellent one on the web.

Eyal:
There’s other ones that exist. And basically all it is a bunch of circles. So you say, so for Will, it would be who’s in Will’s life, who’s in Will’s school life, who’s in Will’s life in children’s treatment center, who’s in his life in the hospital, who all the specialists are, how they all relate to each other. You show that to a healthcare provider, they won’t get the whole story, but certainly, it makes a huge difference in being like, this is me, this is where we’re coming from. You may not want to ask your first question or as I’m immunizations up to date. Not that that’s not important, but, but just, it gives that ability, because there’s a power differential when you walk into a relationship with a new provider. And it gives a little bit for the provider to develop some empathy around where you are coming from.

Eyal:
So very, very helpful thing. Other things I recommend, when you meet with healthcare providers or other providers, writing down information is important because it is impossible to retain everything that you [inaudible]. I often recommend not going to appointments alone, both for social support. And again for that, you know, did you hear what they said? Did they really say that? Or did they say something else? The same way, like a parent going to parent teacher night, if there are two parents there, you probably will have a more wholesome experience in hearing what the teacher gave feedback about your child. So, having some sort of other social supporters on there and in other really important things. So I think those are a few examples of things you can do short of a complex care program. There are referral criteria, for complex care programs. If you live in Ontario, in the website of the Provincial Council, Maternal and Child Health (PCMCH), there are the criteria for referral to the Complex Care for Kids Ontario. So if your child meets criteria, they can be referred for sure to the program for that type of care coordination. And again, other ones exist in other jurisdictions as well.

Genia:
Great. Thanks for that. So my last question, I kind of feel like you’re going to shirk a little bit, because you’re really good at, like not saying things that you’re not supposed to say, but I’m a little bit curious about whether or not, you have any sort of advice or like what you would say to parents, if you really were allowed to say what you were thinking? Like there’s, and I, this question comes from the very large, embarrassingly large number of times that I can vividly remember hearing you say something to me and thinking, right. I bet you he’s thinking something else. I won’t repeat. Yeah, well, repeat it. But, the number of times when, anyway, I won’t get into that. But I’m wondering, like if you had advice around sort of parenting a child with complex medical needs and navigating the medical system without the constraints of actually being in a patient clinician relationship, whether you have sort of like, I don’t know, stuff you wish you could say to parents, but you just, usually can’t,

Eyal:
That’s a hard question, Genia. I’ll try my best. When I, it’s very interesting. I meet families who go through voyages and journeys with ups and downs, and often I meet them when they’re in the down, because I’m a medical provider. So that’s usually when I’m asked to see patients. It’s sometimes hard to say, to really articulate in those periods of time, the fact that it’s a marathon and not a sprint, and that to run a marathon, you need to develop strategies early on, on how to cope with a lot of the challenges that happen over the course of that. And to relish the highs that happen. The family, I see many families who, and I would, Genia, I would say publicly, you are one of them, one of the exemplary ones who make, who developed, who derive great meaning from their experiences.

Eyal:
And I find other families that tears them apart and they’re, and they always feel like they’re fighting and they always feel, they feel frustrated, their own mental health is affected. And their families often decompensate from that. So, you know, if there’s one thing I don’t say, I probably don’t say often enough is to articulate how important it is to develop preventative strategies to help yourself cope through the inevitable ups and downs of going through this, including things that are, that are so frustrating like the system. I’d be lying if I said that our complex care coordination program fixes all the problems and the system are probably barely scratches the surface. We do some advocacy, but that doesn’t change issues in the home care delivery, delivery in the educational system, et cetera, et cetera.

Eyal:
A lot of the things I hear frequently from families are the fact that the left hand still doesn’t talk to the right hand even within my own organization. So, whatever you can do to be mindful of the fact that that will happen in your journey. And it’s a question of what strategies you can develop internally, both to mitigate that. And also if it happens to keep going and keep finding meaning and positivity in your experience in caring for your wonderful child, right. That’s the one thing I probably don’t say often enough to family.

Genia:
Yeah. That’s great. I, the thought that keeps coming up when you were talking about this is the difference between, which I think is relevant. And like, I wouldn’t want people to think that it’s the same thing, the difference between having sort of a positive mindset and resiliency versus how you feel or manage in like the acute situation. So I wouldn’t want anybody thinking that I don’t have a long history of being like a nightmare to deal with or hysterical, or, you know, a couple of years ago I had an experience of coming into SickKids for a night. It was, it doesn’t matter what it was for, but it was not, he was not sick. It was a planned admission for a very non-scary kind of thing. And it was just night. And I remember sitting there thinking, wow, I’ve grown so much, like, I’m so calm.

Genia:
And I’m so like not hypercritical and like forgiving of the mistakes that are happening here. And then a few weeks later, my mom got sick and I was in the emergency department and I was afraid. And I was like, I know I was like, I was being a little bit scary. Like I wouldn’t have wanted to be the healthcare provider in that emergency department, dealing with my mom, with me at the bedside. And, anyway, so lest somebody did interpret what you’re saying is me sort of like skipping along through complex care and medical advocacy, because you are well aware that nothing could be further from the truth.

Eyal:
Yes.

Genia:
Yes, yeah.

Eyal:
Fair enough. Sorry, I didn’t mean to imply that this is [inaudible].

Genia:
No, no, no. And that’s not what I mean at all. It’s more just the, I think we can, as parents, we can, we should, we, I mean, Good Things in Life is all about trying to like experience a life of joy and support our kids in accessing the good things in life and having good rich, inclusive lives. Like, that is absolutely at the core of everything I believe in the way I live my life.

Eyal:
Yeah, it’s the title of your podcast.

Genia:
It’s the title of my podcast. It doesn’t mean, it doesn’t mean that in those moments that I performed particularly well, or that I am resilient or positive because often I’m a big, hot mess with everybody else. So, yeah.

Eyal:
Well taken, well taken.

Genia:
Yeah. Alright, well, Dr. Cohen, thank you so much for your time today. I am really very, very grateful. And, is there anything else that you want to add before we sign off?

Eyal:
No, Genia. Thank you for taking the time. I enjoy the conversation.

Genia:
Great. Me too. Thanks so much, Eyal. We’ll see each other soon in a clinic room. I’m sure.

Eyal:
Okay, bye bye.

Genia:
Thanks. Bye bye.

Genia:
Thank you so much for joining me in this conversation with dr. Cohen. Remember, if you are concerned about medical advocacy for people with disabilities who are inpatients in the hospital, there’s a free workshop available for you. You can register at goodthingsinlife.org/staysafe. Take care.

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Special thanks to Dr. Eyal Cohen for joining me this week. Until next time!

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