welcome to artful aging with amy where i ask caregivers and professionals the difficult questions that will give you
guidance on your life's journey support is only one conversation away and this is your first step let's go
[Music] good morning everyone i'm amy friesen and this is artful aging with amy today
we're going to look at patient navigation and coordinating i've been thrust right into the middle of it in my
own personal life and margo and i are going to unhatch some of it so that hopefully other people can learn more
about what patient navigation is as well as maybe we can give some tips and tricks from our own experiences because
let me tell you making a move even you know we're trying to move my father-in-law as many of you
know from one city to another and even that is um really really difficult
especially when you need to capture all of the patient records and all this stuff and we're just going to dive right
into it so marco mcwhirter is joining us today she's a registered occupational
therapist you've seen her on before we were talking about another um another piece last time but this time
we're going to really concentrate on patient navigation margo has a master's degree in
geriatology as many of you may remember she has certificates in patient navigation home modification and
universal and inclusive design she is passionate about the connection between housing and healthcare and the impact
both have on quality of life welcome back margo thanks for coming back and joining me today
great to be back and to have this important conversation uh especially if you say given the personal context that
you're in right now ah i gotta tell you i mean from a professional point of view
i handle it just like you we we deal with this stuff all the time and so i have to
say i feel more prepared than the general public to deal with it but when
you're in it and you're feeling all of the feelings of crisis you're feeling all the feelings of oh my goodness what
is tomorrow going to hold it's a whole other level of stress and
unorganization and things like that so um margot could you please tell our
audience a little more about you and your background so that they have a good understanding and then we'll dive into
things hey sure sounds great um certainly you've read my brief bio and i think the
other aspect that i would add to that information is really i have almost 30
years of clinical and non-clinical experience um really supporting people
which includes individuals couples and families um living in the community or
wherever it is that they choose to call home and you know i emphasize that because um you know it's so invaluable
it's not that people can't successfully you know navigate the system um without
30 years of experience but because i've worked across the healthcare spectrum and i'd like to say i know a little bit
about a lot of things um and have very much kind of a problem-solving kind of
brain those both soft but then also very hard or practical skills really help ground
what i do in my business at inclusive aging well and the thing too is that you know
when our folks come to us we we do have this knowledge and there's i have to say i
haven't come across a ton of patient navigators and coordinators there's just there's not a ton of us out
there i don't think and it's difficult for people to locate us and also why you
know we do the show right for people to find other people to help them but
you know we do this every day and i've talked to clients before to say you know in my world for retirement homes you
have to almost become an expert in this subject matter that you're
hopefully only going to be dealing with for this small set amount of time
and then you're going to go back to your life where your subject matter and all this other stuff and so you're literally taking on a whole other job
very quick and and and getting it done and then going back out of it and it's
that in itself is really stressful just trying to learn everything you need to learn and
not actually sure that you're learning the right stuff wouldn't you say absolutely and i think the other thing
to bear in mind and this can be um a challenge sometimes uh you know
just depending on personality or even circumstance i mean we always want to bring the best of
ourselves and help our clients and families achieve the goals that they want
um but part of that and certainly an important part of understanding what
patient navigation or even care coordination is it's it i like it because it's very similar to
occupational therapy it's rather than doing things for people it's doing
things with and so the idea of being you know a co-pilot sometimes you know
one of my my colleagues likes to refer to you know planning for aging in place as almost like planning for a trip so
that idea of being a tour guide um but uh my point being that as much as we do
want to know everything sometimes our uh you know superpower or our secret
strength is not knowing all of the answers or having all of the information ourselves but knowing where to go
and find that and so even the example you gave around researching retirement
residents i'm going through that with a client and family right now and especially because i'm based in toronto
where the options are seemingly endless i've actually um
subcontracted that out to an individual that that almost exclusively is for home
business just because as you say like uh the amount of time and energy mental as as
well as otherwise to become an expert in that um is is quite daunting and so
again it's that idea of i don't know the answer but i know how to go about finding it and that might involve me
ramping up and doing research and becoming the expert or it might be actually saying you know what who do i
know that can help me help my clients and family uh come up with with the right
information and navigate kind of that maze of options well and that's the thing like we're um
now as professionals we're very connected to the community in general right and so
we have probably looked for the answer before for other clients or
we know where to look and it's it's so much faster you know then you know someone just you
know doing this on i say on the side but really it becomes a full-time job but it's temporary
hopefully right and so you know when you're navigating i want to kind of get into a little bit of defining just so
that people understand what we're talking about but when you're navigating as a family member
that is the you know the burden even though everybody you know most people would be like you know it's not a burden
i'm happy to help it is a burden though because you're you know you're taking on this whole extra piece that you don't
know anything about which comes with added stress levels and chaos and all this stuff and so you know having people
to really stand by you and help and like you said not do it for you but just you know ride the ride with you be there
and reach out if you need questions answered and things like that so you know margo let's look at you know
can we can you give us um a bit of a definition around patient navigation coordinating i think
that you know let's just get everybody on the same page i often find that families like i said don't really know
these services are available to them don't worry know where to look um and there's a lot of extra stress
when it's your own family and then everything in your life has to be kind of put on hold or moved around to
accommodate so let's start with definitions can you give us kind of an idea so everybody's on the same page
for sure i think um you know the idea of patient navigation or definition of patient navigation is really the um
skill set if you will of helping a individuals and families basically
navigate the often fragmented or siloed systems so that can be healthcare that
can be social services that may be you know seniors housing options
um in a way that essentially allows them to access the services that they need
for their health for their you know mental health for their quality of life and also as a way of supporting
caregivers because that's a huge part of it but um where i like to distinguish you know
patient navigation potentially from other roles within the healthcare system
is that the focus is on the patient what are their goals what are their wishes
and and can we agree or as a patient navigator often i'm guiding a conversation to
help the client and family establish what their goals of care are so that we then have a bit of a road map
or a working plan to say okay what are we doing about housing what are we doing about care what are we doing about
transportation what are we doing about meals what are we doing about you know some of the the legal or the financial
aspects of it all with the idea of of navigating getting uh individuals sort of into that
safe harbor or that port if you will um for whatever
that phase might be in their healthcare or in their aging journey um and and so
it sounds maybe a little bit esoteric if i can call it that but really unlike
some other rules in the healthcare system where it's about you know the system is designed to work efficiently
and effectively and get people through in a way that i don't want to say
benefits the system because that sounds more negative or pessimistic than i intend to
but if um we aren't focused on the patient then the patient can often get lost in that
fragmented and siloed system so that's really a huge part of what a patient
navigator slash elder care coordinator is going to be involved in
and that's not to say at least in my you know perspective that i work um separately or in
opposition to some publicly funded services or other people who may have
similar adjacent roles um you know across those systems that i mentioned
but rather i'm there as you pointed out kind of as a resource as as a reference for the family or the
individual to come back and say okay we're trying to navigate this now
can you help us understand because we're running into roadblocks or barriers um
and and so again it's it's often that kind of advocacy um
the kind of overcoming roadblocks so strategizing just even presenting some different alternatives because
especially when people are feeling like they are in a crisis um and then also trying to make decisions
potentially under stress um you know i can say this personally myself right that's not the time where you kind of
start you know really opening your mind and saying what are all my options really the the integrity often the the
um default is is to start to kind of isolate and bring you know narrow down your
decisions and maybe not see some of the options that are available either because you just don't know because how
would you know unless you're working with somebody like a care coordinator or patient navigator or you're just so
overwhelmed that you're just like no i i can't kind of do anything more so again that's
that's also where a patient navigator can can be so instrumental and and i
would say that that's all of that role can often feel rather high level
and then you know you mentioned about the idea of care coordination i often talk to my clients and families
about you know the sort of two sides of the same coin because in some cases people just need a bit of direction and
some information and they can run with that and in other cases for whatever reason it may be language it may be
cognitive ability it may be you know health and lack of other social supports
individuals actually need help to implement that plan or to to basically
take that next step and that's where the care coordination piece can really come into play
and you know again part of the conversation i have with clients and families is
you know for example i don't have a roster of care staff personal support workers etc
so it's not like i'm an agency and coordinating that
but i can be a liaison between you know the individual or family and the
caregivers similarly part of what i do and this is probably more so now again on the patient
navigation side is i do have some um clients who just easily uh get
overwhelmed or they may have issues with their memory and so when they have a medical appointment they actually want
me to accompany them to take notes um and to basically be a repository of
information also asking questions that they may not know or be aware of to ask
sitting with the doctor or other healthcare professional in order to make sure that you know once
we've left the doctor's office that there is a record of what was discussed
but then also um and this is sort of where the patient education piece comes into it and kind of strategizing with
clients and families to say okay so now that we know this and it may be you know diagnostic specific it may be sort of
course of treatment what are the options how how are we going to analyze and interpret that information and then
again keeping the the individual hopefully in the driver's seat and saying i'd like to go this way not that
way um and and you know that's that's part of the sort of conversation both in
terms of the listening of what is said and not said but then also
creating a conversation around what's possible or maybe some decisions that
need to be made either in the short term or you know on the next whatever six to
twelve month horizon yeah absolutely i find that as people in our roles specifically as
navigators coordinators or whatnot because like you said the system is very process focused very
siloed and i'll tell you a bit about what happened to us recently but very siloed and so
as coordinators because we're people focused and we know the questions because of our
experience we're able to draw out information that people don't think about i often tell
my coach you know if you want to know about something don't expect me to just
volunteer the information if you ask me a question i'll answer it because then i'll think about all that stuff
but i won't think about to tell you because i'm not you know i'm not in that process and so
often marco we just like you know folks like us we just we drag that information out we qualify it we organize it and
because we're working with the person um like for instance when we go into
retirement living often the person at the retirement home only meets that person when they come for a
tour but there's you know 75 percent of the process before where we've done all
this work trying to figure out what's the best process for them you know what's going to fit better you know
do they need that do they need this what's their long-term goals all of that stuff and so
we're very focused on making sure that they as a person ask you know the
questions that are pertinent to their situation and that they get what they need um and then
and then we bridge the gap to the silos and the process of it really
um and so of course my doorbell rings as we're doing this as as happens but
so um i guess you know giving you an idea of what happened with us recently
and it's happened to many of our clients you know we have my father-in-law moving in which is something that my viewers
know and we're in the process and we went to pick them up near windsor and we got there
and then we proceeded to sit in er for 13 hours because we although had a plan which you know
every all of my guests and myself are very pro plan still pro plan but it
doesn't always work the way that you want it to work and luckily i ca i was thinking about that during this time and
it's like luckily i did have a plan because although i had to change it i wasn't starting from zero and i think that's
valuable to not have to feel like you're you know have to start over everything's out um
and so we then needed to change what we were doing and consequently my husband is
actually still there with his dad we're just sorting it all out and we and you know i'm sorting
things out i can do long distance he's sorting things out he can do there and something that you know really
struck me as you know as we're sitting in er you know it didn't even look that busy right like
i've been in ers multiple times and it's just you know it was pretty mellow it's a small town it just took so long and no matter what
we did we just couldn't get him to a point of getting in sooner you know you know we had he he's very frail so we had
lots of blankets and all sorts of stuff and we just kept going back saying you know things are really going downhill
can you please get us in now um and we just couldn't push it along fast
enough and you know i understand the process right like i understand what's happening but then that's the the
difference between being processed both focused and people focused and really understanding what's happening out there
and then you know he had got an x-ray two days ago at the very same hospital to which the er
doctor could not get his hands on for some reason and so then we had to follow that and we
had he's got about you know five six specialists and so mike's there trying to put everything together and
picking up records and they won't turn you know transfer them to ottawa and it's craziness and i'm guessing you know
you've seen this probably before right and it's like how do people wrap their head around
the steps and you know what do i do and how do i get these records from one to another and you know if i move is
someone gonna drop the ball and then i lose a specialist and can't they refer and what about my prescriptions and
there's a lot out there margo there there is it's there's so much to consider and i think especially for us i
mean you know you've described uh a very challenging and stressful situation with
your father-in-law so i sincerely hope for everybody's sake that things you know work out well um
when we're working with older adults in particular and families um you know we also
are navigating their life experience as well as you know skills and limitations
and expectations so you know when you talk about um you know basically being
there and almost being the quarterback um and saying okay now we need to do this how do we you know uh deal with you
know what this issue um hey have you remembered that there is an older gentleman sitting under several blankets
here and we've been waiting an extended period of time you know i often say to
other people within the system and kind of silos you know let me help you
and my client at the same time by managing expectations because in some
cases what people need to hear is that as you know frustrating or aggravating
or or what not a situation may be it's not entirely outside the realm of
normal and i mean i regret to say that but that is the health care system that we live live in
but then on the flip side we especially where we get to know our
clients very well you know there's been numerous uh examples and and i'm a
registered occupational therapist i'm not a nurse but i've actually flagged clients to the health care system
in this case like a home care system to say this client is not doing as well
clinically and you know it's it it's it's not that they didn't have
nursing care in there but if nursing was focused on you know one thing maybe it was wound
care or maybe it was um you know managing uh urinary tubes or something
it sometimes they don't kind of take that bigger step back and look at the big picture and so then to raise that
flag and say hey we have a different issue now and i'm thinking specifically of a client who i recognized um was was
very rapidly uh deteriorating and becoming palliative and fortunately the publicly funded system did kick in and
we got you know supports and services so in his case um his preference was to pass away at home
but that took my role and having worked with him uh and known him for over two
years to say he's been frail and and vulnerable and and uh having you know
challenges medical and otherwise for all of this time but this is something
different and so um as you were speaking i think one of the the things that occurred to
me um and again it can happen whether you're at er whether um our clients are
are encountering other professionals maybe meeting a specialist etc but one of the things that can be
both most challenging but also most rewarding in the kind of work that we do
is getting to know our clients and families as people and and i do kind of caution
um that that takes time right we have a we have ourselves a process you know
intake and assessment and questions but i'm not going to be able to learn all of
the little nuances that can help me be the best navigator and advocate and liaison for my clients
until i get to know them and so then that requires you know a level of trust and information sharing and answering
questions and perhaps um that exchange of information in a way that respects
professional boundaries etc but really we do become um
to to a greater extent than than i think many people would imagine really intimately involved in individuals lives
um and and so that again as you say that's a challenge but it's also very rewarding
so i mean i you know the thing is is about you know i found that a lot of people
tend to also think that the medical system will do x or they assume that
they'll do something and so you know again i'm a professional but this is also my family that i'm dealing
with right now and i'm always careful and i think so many of us are professionals that deal with
it in our families as well that you know it's i'm always careful to say you know to my husband like
here's my advice you know i'm you know i'm not trying to step on your toes please let me know if it's too pushy or
whatever because you have to there's a fine boundary with families as well right and it's like but
what was interesting is that when they got into the back of the er so where the
beds are and i was sitting out in the waiting room for three hours until i till we
gave up and i went home and they stayed there because there was no use of me sitting there anyway um i was actually texting mike while he
was in there asked the doctor this do this and you know he said oh well i assume that they would do that like
don't assume anything ask everything because unless you ask it may or may not be done
and you don't even know if they've considered it and you know you think you'd hope that
things were done but more often than not if you don't ask that either the person's not
thinking about that like maybe it's something for medical purposes maybe they thought it was something and they're looking into that realm but like
you said often there's a whole spectrum of things going on and so unless you say
hey we're specifically concerned about this could we do x um
you may not get the answer you want and so i think it's so valuable to be able to be connected
to patient navigators and coordinators to so that somebody else is who is not
in crisis with you but has your best interest in mind can think about okay what's going on i know
the situation what's happening you know how does the medical system
work you know for me how do the retirement homes work and how does working with the hospital and retirement
homes work together what is that system okay where do we fit in that system and what do i need to ask to make sure my
client is taken care of properly and so you know that's the other thing it's like you just don't know what you don't
know and unless you literally ask everything you may not actually get the answers you
may not know you don't have the answers until you're in this awkward position of needing that answer that you don't have
anymore yeah and and also um being able to provide the right
answers or information from your client's perspective or in this case your father-in-law's perspective
to give the health care system the information they need in order to help him like i'm thinking
of an example where i sat for many hours in an emergency room pre-covered
with with a client and uh you know they were getting ready i could tell it was
like 11 30 at night or something and they were getting ready to basically make their final decision
whether to admit or discharge her and they started asking you know a series of questions
and you know this client was physically frail but cognitively very well but she had been lying in er
for hours like 10 hours maybe without anything to eat and very little
to drink and they wanted to see if she could get up and walk and i said hang on a second this is an older adult who has
had nothing to eat for 12 hours she is not going to be strong
and so let me go to the cafeteria get her some juice get her something to eat
and then come back and do your assessment and you know i mean that's just a small
example and that certainly is not something from a service perspective that i do a lot like i don't tend to spend a lot of
time in emergency rooms with my clients but that alone is an example of where
particularly for older adults and if if you don't have family or you don't
have um you know you basically you should never go to hospital alone this is the short answer
and that's i'm not dissing hospitals i'm not saying they're you know not good places but to your point right you you
need somebody who can ask the right questions who can hear the responses
with a different year than potentially the general public and then
the other huge piece that a patient navigator care coordinator can really help with is
then the successful implementation or the after effect because again if if
people are seeing an emerge or they're in hospital or in rehab and then there's a discharge to home but those are two
different systems that don't necessarily um coordinate well between them
other than filing the referral then that's where people can fall through the gaps and and
again it's not dissimilar when i'm thinking about like home safety assessments or home modifications
i'm looking for the potential risks and hazards where people are going to run
into difficulty where they're going to run into barriers to accomplishing
their goals and and basically staying safe and healthy and i'm saying hang on a sec we need this is an issue that we
need to address for sure and it's funny that you mentioned the er with your client there because
one of the things that i really noticed while i was there is that you know this almost the same thing right you know we
were there for 13 hours there was other we like there was a whole crew of us i you know we were in i was entertaining
the whole er that night i look like i travel with juice boxes so it's like i was traveling i had you know snacks i
had random cashews and stuff and i was offering them because honestly people were there there was
like almost like you know sets of groups of people that like all of us came in together we all
spent this time and then we all just disbanded right and you know there was a gentleman there
that was probably around my age and he literally could not move he was like he
was almost like he just was so sore and there was something going on and they were doing cat scans and stuff
and they had him up five times at least and i kept saying every time he came up
would you like a wheelchair like make it easier on yourself right and no none of the nursing have nothing nobody paid
attention and then there's like small kids that you know don't functionally understand what's happening there's
there were seniors it was just a whole shmammit of everything and like you said there's like there's no food in sight
right and so i got thinking there as i was spending all my time in er it's like why don't they have something up here
like why don't they have something if it's going to take this long right and so that was an interesting observation i
had that is very similar along your lines too and i think it goes back to something that you said before
about uh you know advising mike your husband that you know not to assume or
have um lofty expectations about the medical system and you know again all
due respect and credit to emergency departments you know they are there dealing with
people in the midst of medical crisis hydration and nutrition and and some of
those other um adjacent considerations but that's not their primary focus and so
you know i i'm not suggesting for a moment that the idea of having a small commissary or something you know like in
a retirement residence or long-term care home they bring around a cart with snacks and whatever
that would be probably a great thing to have within the emergency department um
but again that's where that takes bigger picture thinking because that's not um i mean you and i
both know that that's critical to people's health and wellness but in a critical emerging medical
crisis situation where they're dealing with you know people who've been involved in car accidents and having
heart attacks or stroke or whatever thinking about hey you know how long has it been since
you've had a meal that's not really um going to be top of mind so good on you
for a having that on hand and then be offering to assist others tell you
margot someday you and i we're going to rule the world and everybody will have food and juice
yeah and there are you know there's some research and some studies and some information out there about designing
elder friendly uh emergency departments and and oftentimes that comes from the perspective of you know working with
people who may have uh cognitive issues but you know similarly if imagine if you
mentioned that there's you know intergenerational people who are are at an emergency department imagine that it
was a youngster young adult with autism who was coming in with a broken leg and just all of the sensations of being
overwhelmed like it you know not not not say whatever you know talk about customer
experience but really that's that's a bit of what we're talking about here when we you know look at the situation
from the individual and the family's perspective that changes things significantly
i agree margo thanks for joining us today can you tell everyone uh your contact information if they want to get
a hold of you again you're in the toronto area so maybe you know generally speaking people just kind of
have to go on the internet to find us right like generally speaking but so could you let us know how to get a hold
of you and then do you have a any advice for people that maybe aren't in our area
to have how they can find someone like yourself or someone like myself do you
have any thoughts to that okay um so i'll just direct people to my website so it's www dot
[Music] and then there's a contact form for
either sending me an email or getting in touch with me um be happy to speak with anybody and um with respect to you know
how to locate uh individual private patient navigators um
you know oftentimes for me it is word of mouth so if uh wherever people are at if they
know of other uh you know if they have family or friends you know they could ask that way um in some cases people are
taking to facebook and and within community chats or you know next door app you know lots of different kind of
social media way um there are [Music] uh or sorry i should say that i'm not
aware that there is this kind of registry of um
you know patient navigators um but having said that you know i know you and
i know some individuals in the maritimes and people at west so we almost find
each other so that if people come to us like for example i may have family members uh who contact me that they live
in the toronto area but their parent is in british columbia or in in you know nova scotia or something and so that i
can can maybe redirect them but you know it is a challenge um and um
yeah it's i i'm not sure that i have any more concrete suggestions than that well and
for sure like it like for myself i have connected with you know people across canada that
do what i do because there's like 12 of us there's very few of us right and so
sometimes like if you find one of us we most likely will have a contact so i always welcome people to reach out to me
i'm sure that you wouldn't mind us either either just for some direction right because uh we're wanting to help
people and so i'm happy to email connect people if they need it so margo thanks again for joining us today
i really appreciate all of your insight and i hope that we will have you back on in
in the due time in the next little bit that'd be great and certainly um all the
best once again to you and your family and thanks for having me on your show and there you have it for today's show
if you've enjoyed what we've been talking about if you have found value please share it with your networks like
us on youtube or the podcast that you're listening to us on thanks again for joining me on our full aging with amy
and for me to all of you i hope that you have a wonderful wednesday
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