In this episode of Solving Healthcare, hosted by Dr. K, we revisit a conversation with Julie Drury, a dedicated advocate for patients and families. Julie shares her journey, including the loss of her daughter Kate to a rare mitochondrial disease, and reflects on the good and bad of our healthcare system. We discuss the critical role of patient-family-professional partnerships, how this has been disrupted during the pandemic, and the need to re-integrate families into healthcare teams. Julie’s work as Chair of the Minister’s Patient and Family Advisory Council and her efforts to shape health policy through collaboration and compassion offer invaluable insights into improving healthcare delivery.
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Speaker 1 (00:00):
The views expressed in the following program are those of
the participants and do not necessarily reflect the views of
Saga nine sixty am or its management.
Speaker 2 (00:11):
Turned my music ha ha ha, sure I do. I'm
from the streets where to third Broadcast Nation. It is
with absolute pleasure that we have Julie Guria on the show.
And let me know if I got this right, Yulie,
(00:32):
strategically patient partnership for c Fhi, am I getting that
at a long point?
Speaker 3 (00:40):
You're getting that right? Yeah?
Speaker 4 (00:41):
Amazing Canadian Foundation for Healthcare Improvement.
Speaker 2 (00:44):
Yeah, yes, amazing. And you've been busy? Is that fa
to say, Julie?
Speaker 3 (00:49):
Yeah, I think our entire organization has been busy.
Speaker 4 (00:51):
Anybody who's involved in healthcare delivery or healthcare system or
quality improvement these days has been really busy.
Speaker 2 (00:58):
Yeah.
Speaker 3 (00:59):
So yeah, that would probably be an accurate statement business.
Speaker 2 (01:01):
Yeah, I definitely hear you. So maybe tell us a
bit about your journey to your position, what life has
been like of late in terms of all you've had
to do for advocating for patients and then lived experience
and so forth. Yeah, just walk us through how you
got to where you are.
Speaker 4 (01:21):
Yeah, So thanks for inviting me to have this conversation.
I'm a fan. So I've been listening to your podcast
and love the people that you've been interviewing so far,
and really happy that you're bringing someone on who sort
of is an advocate and an advisor and a partner
in this lived experience space.
Speaker 3 (01:38):
So I came to this role a number of different ways.
My background is.
Speaker 4 (01:43):
In human connects and exercise physiology, and I've worked in
health policy now for well over two decades federally. So
I'm actually a public servant with Health Canada and I'm
on an interchange right now to develop this strategic leadership
role at the Canadian Foundation for Health Care Improvement. And
I've come to that because of my own personal lived
experience with significant interaction with the healthcare system with my
(02:08):
daughter Kate.
Speaker 3 (02:10):
So Kate passed away five years ago.
Speaker 4 (02:12):
As I was telling you, her birthday was actually on Thanksgiving,
October eleventh, and Kate had a rare form of mitochondrial
disease that wasn't diagnosed until she was about four and
a half. Through genetic exome sequencing. She was quite unwell
with multiple sort of organ issues. She had some developmental
delay and she gradually lost her hearing, so she became
(02:34):
profoundly deaf.
Speaker 3 (02:35):
Over the first few years of her life.
Speaker 4 (02:38):
Lots of interactions with the healthcare system I see you
admissions impatient. She was taking care by CHIO at Sick
Kids at SHO Saint just Stine in Montreal, by the
Mayo Clinic in the States, and also in England. The
National Health System in England also intervened in her care.
She has the reputation of being the first person in
(02:59):
the world diagnosed with TRNT one deficiency or si f D,
which is her rare form of mitochondrial disease.
Speaker 3 (03:07):
I now actually.
Speaker 4 (03:09):
Coordinate a family group of persons from across the world
in the UK, in Europe, and the States in Canada
who have loved ones affected by this condition. And Kate's
genetic material actually is at both you and at Carlton
University being studied in.
Speaker 3 (03:26):
Yeast models and mouse models to better understand this condition.
So she was a real trailblazer.
Speaker 4 (03:31):
In her life and she passed away following a failed
Bomera transplant to help to not cure her condition, but
to help to mitigate some of the symptoms, and her
ten year old brother was her donor at the time,
and she passed away from complications related to graph versus
host disease. I'm telling you all this because I want
(03:53):
to position the amount of and you can probably tell
as a physician, the amount of experience that I've had
with the healthcare system. Literally hundreds of doctors and nurses,
hundreds involved in Kate's care. And that's just the specialists
and the nurses. I'm not, you know, mentioning sort of
any clerks that we've had to work with, reporters or
hospital leadership, or quality improvement teams or patient safety teams,
(04:19):
and so you.
Speaker 3 (04:20):
Know, I bridged.
Speaker 4 (04:21):
I started to bridge that experience fairly soon in Kate's
journey into advising on Patient and Family Advisory councils and
getting involved with healthcare organizations to talk about lived experience,
how patients were experiencing the health care system and families
and what could be better. And so I've had the
privilege to work with many hospitals, many healthcare organizations. I
(04:45):
was the inaugural chair of the Minister's Patient and Family
Advisory Council, appointed by Minister Hoskins at the time, and
also worked with Minister.
Speaker 3 (04:51):
Elliott quite closely.
Speaker 4 (04:54):
I work with a number of different organizations, including the
Kade Medical Association, the Royal College of Physicians and Surgeons,
and other sort of national organizations to talk about meaningful
and authentic engagement with persons who have lived experience across
a health care system, to shift how our health care
is delivered, and to talk about policy and practice, and.
Speaker 3 (05:17):
To really truly.
Speaker 4 (05:18):
Bring us to a point where we have a patient
not just patient centered healthcare system, but a patient partnered
health care system.
Speaker 2 (05:25):
Wow. Wow, Like, first of all, hearing about Kate, you know,
as a as a parent, I just I just can't imagine,
Like I just I can't imagine. And I am really
sorry for the experience and having to lose Kate. And
I hope your family I wish the best for your
(05:46):
family in terms of all that you've had to go
through already. You must be don't take this wrong way,
ultra knowledgeable when it comes to the way the system
works from at all levels of the healthcare system. And
was there like some key themes that you saw where
(06:12):
it was clear we needed to do better, whether that's
through communication, whether that's through you know, just what we
put our patients through. Because you know, one thing that
I've learned from doing the show in the short period
of time is there's a lot to learn from the
patient experience, from the lived experience. There's tons, there's things,
there's angles that we don't appreciate as as as a clinician.
(06:37):
So was there key themes that you have noticed over
the years truly?
Speaker 3 (06:45):
Yeah, Well, I'm glad that you mentioned the word communication.
Speaker 4 (06:48):
If you follow the patient Almasman, our new patient Almasman
Kathy Fuchs now in Ontario, and our previous patient Almastman,
who happens to be now our Minister of Health, Christine Elliott,
when you read the reports from the patient amass Moonnitary
over the years, ninety five plus percent of patient complaints
or poor patient experience come from breakdown and communication over
(07:12):
ninety five percent.
Speaker 3 (07:14):
And so you know, I think there are many things
that are contributing to that. I think that we've.
Speaker 4 (07:19):
Got still an extremely hierarchical health care system and you're
probably experiencing that as a position as well. Means the
way that you're trained, the system is very hierarchical, and
we tend to historically do two patients or four patients
and less of doing with and in collaboration, and we're
moving into some of those better practices. We talk about
shared decision making, and there's better mentoring and better coaching.
(07:42):
But when push comes to shove, and when we get
into crises, COVID is a great example, we tend to
get right back into an overly medicalized, hierarchical health care system.
So I think the system itself is not structured to
be patient centered or patient partnered. You'll give you a
really clear example transitions in care from hospital to home.
(08:03):
And you know this as a position. I'm sure you've
experienced it on behalf of your patients. It's just next
to impossible to navigate and coordinate that.
Speaker 3 (08:11):
And to be.
Speaker 4 (08:12):
Truthful, the responsibility falls on the shoulder, oftentimes with the
patient themselves or a family member, but we've made it
near impossible to coordinate that effectively, you know.
Speaker 3 (08:24):
I mean, I'll share an anecdote.
Speaker 4 (08:25):
At the end of Kate's life, when we knew that
she was dying and she was going to pass away,
we decided to bring her home from Montreal back to Ottawa,
and we decided not to admit her into hospital at
CHIO because she was dying and we wanted her at home,
but to coordinate.
Speaker 3 (08:41):
That was a herculeian effort.
Speaker 4 (08:43):
We could not get home care in place because she
was coming home on a Saturday, while home care only
operates Monday to Friday nine to five. We couldn't get
proper pain medication again because the home care nurse wasn't
deployed in the appropriate.
Speaker 3 (08:55):
Amount of time.
Speaker 4 (08:57):
We had significant challenges and it requires a significant amount
of advocacy in my part to get the child home.
And you know, that's just one example of a poor experiences,
but you know there there are, there are many many.
I would challenge anyone to find me an example of
a completely efficient, effective and patient centered transition and care.
(09:21):
And again it's simply how the healthcare system is set up.
And so to your point, bringing in lived experience. One
of the tools that we use in patient engagement partnership
is what we call experience journey mapping, bringing in that
lived experience and going through the patient journey and recognizing
or comparing the lived experience to the structures and the
policies and process that we have in place, and understanding
(09:43):
the challenges and barriers, not just from a system's perspective,
from that lived experience perspective.
Speaker 3 (09:49):
That is the sweet spot.
Speaker 4 (09:51):
Right now that we're missing in the system. It's starting
to come. We're getting patient family advisory counsels in place,
and we're getting patient leaders like myself in place, and
you know, we're we're helping to to you know, create
what we call engagement capable environments, but it's still few
and far between.
Speaker 2 (10:07):
Wow, and yeah, I just I think it's so vital
and I appreciate the fact that this is we're seeing
more of this, but we need that advocacy when it
comes to decision makings at all levels. Like I I'm like,
I'm I'm convinced of this. It's too important when you realize,
(10:31):
like I don't really like with that story of Kate,
like put yourself those that are listening, like put yourself there.
You have a dying child that you want to bring
home and you got to waste this freaking energy and
bandwidth on the logistics of getting home, Like this is Canada.
(10:52):
We should figure this out, man, Like we should really
be able to say, you know when it comes to
especially I mean, I'm probably of care docs have a
soft spot for end of life care, Like we got
to figure a way to make this happen. You know
what I when i'm you know what I'm saying. And
that's why I think. You know, when it comes to
major policy, when it comes to decisions, when it comes
(11:12):
to research, when it comes to infrastructure in the hospital,
you know, our patients and their families need a voice,
They need to be advocated for. Because and the other
thing too is like some of the best ideas often
come from these conversations, like I mean, I don't I
don't know if you have an anecdote off the top
of your head, but just sometimes the and it's sometimes
(11:33):
it's just a little thing like I remember a colleague
of mine they actually I might be I don't want
to say the hospital because I'm getting it wrong. But
they even had like we're setting up like patient and
family navigators where they were, you know, like really, because
I mean, if you've got a new diagnosis of cancer,
(11:54):
you're trying to go home when you've got complex care needs,
this is it's not easy. As you lose to Julie,
like you need to be able to coordinate appointments, you
need to make sure people are home at a specific time,
Like to me, like this is what it's it's just
so important, so long winded question. Have you seen any
(12:15):
changes Have you seen any solutions of latenst either whether
it comes to the communication, when it comes to transitions
to care that really make you optimistic about our future.
Speaker 3 (12:28):
Absolutely.
Speaker 4 (12:30):
You know, as I said before, this is the really
the sweet spot right now, the unmined territory of healthcare
system transformation.
Speaker 3 (12:39):
So you know a couple of anecdotes.
Speaker 4 (12:42):
You know, at the king Foundation for health Care Improvement,
we've been working for the past eighteen to twenty four
months on what we call a learning collaborative and it's
called Bridge to Home and it's about transitions from hospital
home and it's leading healthcare teams from across the country
who apply to be part of our collaborative.
Speaker 3 (12:59):
On how to improve that journey.
Speaker 4 (13:01):
And so shout out to a colleague of mine, Shoshana Goldstein,
who is at the uhen Open Lab HGEN in Toronto
University Health Network, and she developed something called pots Patient
Oriented Discharge Summary. This was developed co designed with patient,
(13:21):
family and caregivers. It is a tool that ensures that
it's not just the healthcare team to start just charging
the patient so to speak, it is the patient and
the family caregiver, the essential care partner, not a visitor,
but person who's essentially partnered in care. And we're going
to talk about that a little bit. Who helped develop
the transition plan together or the discharge plan together, and
(13:43):
so everyone is fully informed and there is a plan
of action that is well executed. Homecreers brought in early,
family physicians or the home physician is brought in early,
and the patient and family are partnered in care. Just
a clear example of just just adjusting it and fine
tuning it and tweaking it so it works. And we're
(14:04):
proud that there's twenty four to twenty six hospitals and
healthcare organizations that are working with us to spread and
scale the use of that tool co designed by patient,
family and caregivers. You know, I'm sharing quite a bit
with you personally, which I don't often do anymore about Kate,
but I feel comfortable with you so and maybe I
want to celebrate her a bit. But Kate went through
(14:24):
some very difficult times in the last few months of
her life, and so did our family that significantly impacted
her safety and her care very unfortunately.
Speaker 3 (14:34):
And we went through a year.
Speaker 4 (14:36):
And a half process with a hospital to talk about
what happened to her, where the breakdowns and communication were,
where the breakdowance and policy and hospital practice were. And
that conversation, although very long and very difficult for my
husband and myself to go through, resulted in thirty policy
and program of practice changes at the hospital and these
(14:59):
were documented, they were shared with us, an action plan
was executed as part of their quality improvement initiative. And
I'm also proud to say that because of that very
first interaction of bringing a family into a patient safety investigation,
this is now more of a common practice at this
hospital where they bring in the patient or the family
(15:20):
member to talk about that harm situation or that patient
safety situation, and they're part of the quality improvement agenda
around this. And the investigation or conversation so to speak.
And how that had not been happening prior to this
is beyond me. I mean, I liken it to a
car accident. How is it that you might have a
collision at an intersection and you only go to speak
(15:41):
to one occupant in one single vehicle, and you don't
go and talk.
Speaker 3 (15:45):
To the other about their side of the story and what.
Speaker 4 (15:47):
They saw happened and so we are seeing that shift
and that change across the system and it really has
to do with leaders and I give a shout out
to some very strong leadership in hospitals across the country,
not just here in Ontario that understand that patient voice
and lived experience, as you said, just can create small
(16:09):
change or what I call the head tilt like the
Oh wait a second, I hadn't thought of it that way.
I didn't see it that way. When I speak at conferences, Quadua,
one of the things I look for is the head
tilt and I'd love to measure that angle and actually,
you know, sort of from a data point of view,
see how many hottels I can get or what the
angle the head.
Speaker 3 (16:28):
Tilt is because you create that aha moment.
Speaker 2 (16:31):
All right, We'll be right back on Solid Healthcare Radio
with doctor.
Speaker 1 (16:34):
Ka stream us live at SAGA nine sixty am dot C.
Speaker 2 (17:10):
You're listening to SOLVEMN Healthcare Radio with Doctor King. Wow.
I mean, can I just say, you know we're all
about like the show is about transforming healthcare and promoting
people that are doing that called changing the boogie. And
when you tell me that your meetings with the hospital
and Gage that was involved like impacted thirty decisions, thirty policies.
(17:38):
That is bettering the lives and the experience of future patients.
That's what we call changing that boogie. And this is
what it's all about. Like, maybe put you on the spot.
Can you give an example of something that maybe was
tweaked that you that was like a policy tweak, that
(17:59):
that was lamented.
Speaker 4 (18:01):
Yeah, sure, and I'll just be cautious because I don't
want to identify the organization. So Kate was a stem
cell transplant patient, but she wasn't oncological right, she wasn't
a cancer patient. And so the way the hospital organized
follow up for these children and where they might be
in crises when they came into clinic, into that clinic
(18:24):
where they were being managed, was only the cancer kids
or the oncological kids were put on the whiteboard as
actually being present, and so when the physicians were picking
up on who was present in clinic, they were only
seeing the cancer kids. So Kate was in crisis.
Speaker 3 (18:37):
She was having.
Speaker 4 (18:40):
An episode following her stem cell transplant. Stem cell transplant
is not a very linear journey when you're recovering from it.
And because she wasn't on this whiteboard, and identified. Because
she wasn't a cancer patient, she wasn't identified as actually
being present in clinic, and this created a slippery slope
of no one picking up on her care. So we
had no physician attending to her because no one was
(19:02):
assigned to her. So the simple tweak was all children
who come into the clinic, whether be they cancer patients
or not, are identified on that whiteboard and they're assigned
a clinical lead, a physician lead.
Speaker 2 (19:16):
Beautiful.
Speaker 4 (19:16):
It's small and it's simple, but quite frankly, that saves lies,
That changes harm, that changes you know what happened to Kata.
She got into a very critical situation quite quickly because
no one was following her, and it wasn't until she
was in crisis that someone was like, oh crap, you
better go to check on the kid in room one.
Speaker 2 (19:37):
Yeah. And I mean, the other thing that I like
about what you were doing is like advocating for like
if there's incidences, to have the family involved, because it
also I don't want to put words in your mouth,
but it also like that sounds in sense I don't
(20:02):
know how to say this in a sensitive way. It's
like there's at least some purpose out of the experience,
you know what I mean, Like there was I'm trying
to say that there was an ability for us to
learn and and do better for future patients. And and
the other thing too is and not to be too repetitive,
(20:23):
but that perspective. That really adding that perspective piece, Like
it's a good analogy you make, like if you're in
a car accident you only get talked to one eye
witness or whatever, one person involved, like you might be
missing something that that can't run out to the you know,
was that speed truly sixty kilometers an hour as they're claiming,
So it's just you know, adding that extra piece. I
(20:45):
guess what I was trying to say that it might
add assist with the closure when something happened, the negative
experience happened that you know, there was at least some
learning that happened along with it. Sorry, I'm fumbling there.
I just really don't want to sound insensitive.
Speaker 3 (21:00):
You're not at all.
Speaker 4 (21:01):
And I have a pretty thick skin, right I'm in
this space a lot, so please don't apologize. I think
there's a couple of things there that I want to unpack.
So certainly closure is part of it, and I think
that's incredibly important as a comment that we, as a
healthcare system, and I'm going to say we, because patients
are part of this as well, tend to circle the
(21:22):
wagons when harm occurs. And I think there's a lot
of work to be done there about you know, sort
of no fault transparency, coming up with apology early, and
you know, quite frankly, of you know, getting getting in
front of things early before we get into sort of
litigious or or legal issues. And that's just not how
we're structured right now. A complaint comes forward, a patient
(21:45):
safety incident comes forward, as soon as it's reported, the
wagons circle and it's very difficult for patients and families
to get closure. And we see that on repeat across
this country. I don't have to give you examples. I'm
sure your listeners know them well. I think the other
thing for our family, and we lost Kate at this point,
right this wasn't during her life. This was after her death.
Speaker 3 (22:05):
Was and we were angry.
Speaker 4 (22:08):
We were very upset, and we were very angry, and
we wanted to change something. We wanted to change something
for Kate, even though she was already gone. We wanted
to change something for her. Because what happened to her
wasn't right. And the reason I'm sharing that quadra is
it's very important we tend to as a system get
really concerned when a patient or family carever is angry.
Speaker 3 (22:29):
Ooh geez, they're angry, Like, we can't go there.
Speaker 4 (22:32):
Let's put them through the patient relations patient experience office,
kind of set them aside, push.
Speaker 3 (22:37):
Them over there.
Speaker 4 (22:38):
We can still engage and partner when people are angry.
I still carry a little bit of anger with me.
I carry a lot of guilt and shame and grief
as well, and those are complicated human emotions. But it
doesn't mean that I can't do my job and that
I can't advise and advocate and partner and so finding
you know the ways to work with families even in
(23:01):
a time when you know they have met with crises
and they might be angry. And I think the way
we currently structure, with all due respect to those people
who lead in patient relations and patient experience, I think
the way we currently structure that does a real disservice
to our healthcare teams and to our patients and families.
We expect them to come to meetings if they're going
to be held at the hospital Monday to Friday nine
(23:24):
to five where their trauma might have occurred.
Speaker 3 (23:26):
We expect them to meet.
Speaker 4 (23:28):
With teams that are of the hospital where the harm
might have occurred, rather than maybe meeting with a neutral
mediator or a neutral part third party. We tend to
not share information transparently. We tend to value the chart
and the information of the medical and healthcare team over
the experience of the family, to your point, and so
(23:49):
I think those are some of the you know, the
current barriers to understanding that patient safety, patient harm, patient
complaint can actually illustrate some really great opportunity used for
change in the system. But we've got to rethink how
we've designed that and keep everybody safe, not just the
patients and families who've experienced harm, but the physicians as
(24:11):
well and the healthcare teams as well, and we don't
do a great great job of it. I will say
that when we went through this experience, it was very traumatizing.
We walked into a neutral space that I had advocated
for that was outside the hospital, into a room we're
literally on the wall where these massive printed charts that
they called swim lanes, and it was a timeline with
(24:33):
every single team who had touched and or been involved
in Kate's care, and it outlined the last two weeks
of her life where the harm had occurred. And then
the expectation was, okay, we were going to add in
our narrative to that. And it was all based on
the chart and so important to do, but really hard
for us to my husband, I had to walk in
(24:55):
cold into that room and to see that there'll be
the last two weeks of my daughter's life documented on
these walls. And so patients and families can help to
design that process.
Speaker 3 (25:04):
You know.
Speaker 4 (25:05):
I've offered feedback to the hostel that what could change here?
How could this process be different? How could I feel
more safe and more partnered in this? And all this
to say is that there's a richness and a value
of information there. It's about closure for the family, but
it's about shifting the system as well.
Speaker 2 (25:21):
We'll be right back on solving healthcare. Radio with doctor k.
Speaker 1 (25:25):
Out of the night into the water.
Speaker 2 (25:29):
It push the boat from shure, breaking it and the
stillness of.
Speaker 1 (25:37):
The no Radio, No Problem stream is live on SAGA
ninety sixty AM, dot C O one AM, Jewels Fast
one and one dam Jewels, Fast one and.
Speaker 2 (25:54):
The Slow Mo. You're listening to Solving Healthcare Radio with
doctor k. I'm just hearing you speak, Julie. It's just
you know, it's not only inspirational, like I'm motivated to
do more, to learn more, to really give that avenue
(26:14):
for our patients and their families to express their experience,
but just also I mean, I'm in awe of how
courageous you guys have been. How like the thing that
when it comes to something like this is that you know,
speaking to it now, like I mean we're on zoom,
(26:36):
but I could see it in your eyes, like this
is not easy whenever you have to go back and
think about what you went through, that lived experience, and
you guys, you and your husband being courageous and and
and being those being those advocates, being the leaders that
that are going to help so many people. And you know,
(26:58):
it's funny because you you telling me that story about
the charts on the wall. I'm being one hundred percent
honest with you. I would have never registered that as
being potentially traumatic, never in my life, like you know,
you like I didn't do it there because I'm like now,
Congressant but head tilt, like my head would have been
like the degree of skilt would have been like you know,
(27:21):
like when you're throwing down that that information, it's like
it makes sense as you say it, but I would
never have pieced that together. And so I think what
you're doing is just it's it's magical. If it's okay
with you. I want to speak about what's going on
(27:41):
with COVID because my god, you know, as as a
as a guy that has seen firsthand what the experience
has been like for patients and families, especially early in
the pandemic, it melted my heart seeing people I alone,
seeing the inability of people to see their loved ones
(28:04):
at the end of life. I oh, it was just
straight up nasty. You must be busy now regarding the pandemic.
I don't even know where to start, Julie, Like, what
have you been involved with or hearing about in terms
(28:25):
of patients lived experience or families lived experience when it
comes to our pandemic.
Speaker 3 (28:31):
Yeah.
Speaker 4 (28:31):
So, because I'm out there publicly and because I've been
doing this for so long, you know, one of the
roles that I tend to play that is deeply personal
to me is I advise families a lot, and so
just as recently as yesterday evening, a colleague connected me
with a wife whose husband is going through significant, a
(28:52):
significant cancer journey, multiple rounds of chemo and has now
come through a stem cell transplant and started in February
that as of March mid March, as you know, she
was no longer able to participate partner in his care
or be there to support him. And so she's reaching
out to me now because this journey is continuing and
(29:14):
we're going to have a conversation soon to talk about,
you know, what I would advise her to do to
be able to reintegrate her role as an essential care partner.
So that segues me into what am I doing now,
So we you know, our organization, it was very much
about championing the role of family caregivers from an open
(29:36):
family presence policy point of view. So for the past
five to six years, we've worked across the country with
the major hospitals one hundred and thirty one hospitals across
the country, like the largest hospitals in Canada, to re
examine this whole thing around visitors and visiting hours and
to start to talk about what would it look like
to have open family presence policies and to welcome families
(29:59):
as part of healthcare teams and to talk about what
partnership and care look like not just for the patient
but for family caregivers. And so, over the course of
five years of an initiative that we called Better Together,
where we had all these major hospitals on board as
well as some of the leading healthcare organizations, we advanced
open family presence policies from approximately thirty five percent across
(30:21):
the country to seventy three percent. So that means that
seventy three percent of hospitals pre COVID had relatively flexible
policies where families could be present really whenever they chose
to on a twenty four to seven o'clock and that
was supported and that was part of the practice of
that healthcare organization. And then COVID hit and overnight, all
(30:44):
of a sudden, everyone became a visitor. And we did
not differentiate in terminology between what is a visitor, which
is a social visit and important, and what is an
essential care partner a family caregiver who partners in gas
here provides emotional, psychological, physical support, offers continuity of care,
(31:06):
patient history and supports care coordination. And I'm being very
clear about this squadrill because this is based in the literature.
This is based in research and evidence the impact that
family caregivers have as care partners on patient experience, but
also patient safety and patient outcome. Patients have better outcome
(31:28):
when their essential care partner, be it a family member,
a trusted friend, it might be a substitute decision maker,
but identified by the patient, as that essential care partner
is present, their outcome is better. They are safer in
the healthcare system. And in mid March we lock them out.
(31:50):
Now why did we lock them out? Well, because COVID
and we were all freaking out. How does this thing
get transmitted? What are the risks here?
Speaker 3 (31:58):
We don't have enough.
Speaker 4 (31:58):
Ppe are we all wearing you know, gowns, gloves, mass
shields and the whole nine yards. What's the most effective thing?
And so in early days the pandemic, absolutely we got
to kind of get our footing here and figure this out.
Speaker 3 (32:12):
But we are now close to.
Speaker 4 (32:13):
Nine months in and many hospitals are still restricting visitors.
So the guidance and directive has come from ministries of
Health and chief metical lossters of health and some of
them are shifting. You know, we've seen shifts in BC
albertas Asketchewann and their terminology, they're differentiating between a visitor
and essential care partner. We're seeing shifts and some of
(32:33):
the terminology here in Ontario as well. We're seeing some
hospital leadership where they're like, Okay, we know we need
caregivers back because they are essential. They're not only we're
not only risking patients safety, but we're seeing moral distress
amongst our health care providers. They're watching people die alone,
or they're watching people go through extremely challenging health care
journeys without without a family caregiver present and there to
(32:55):
help navigate. And that's not anecdotal. This is again bearing
itself out in some of the early research that we're
seeing around the pandemic. And so they're starting to put
together sort of training programs or education knowledge programs for
family carevers to help them understand ipack in infection prevention and
control procedures, masking, physical distancing, hand washing, just so that
(33:17):
they're prepared to be in a hospital COVID environment, and
also that staff are reassured.
Speaker 3 (33:23):
That okay, that caregiver they need to be here.
Speaker 4 (33:26):
They've got they've got some training and some knowledge about
you know, what it is to be in a COVID
environment and Okay, we're more comfortable with than being here.
And so we're seeing that organizations like Hearth Puron Healthan
Hearth's cur On Sorry Perth cure On Health Alliance, Jennis Kepper,
the CEO of Hotels Geograss Hospital, Kevin Smith at UHN,
(33:48):
we're seeing some great leadership of bringing back family caregiver presence.
Speaker 3 (33:52):
We're also seeing significant gaps still.
Speaker 4 (33:54):
Where visitors are restricted, family carevers are restricted, and so
a big part of my policy worker the past six
months has been the release of a document in June
called the Reintegration of Family Caregivers in the Time of
COVID nineteen hashtag more than a Visitor. And over the
past five months we've conducted a series of policy labs
(34:15):
with expert advisors from all sectors of the healthcare system,
and we'll be releasing that report, we hope, in about
a week or two, and it'll be very much policy
guidance about how to bring back family caregivers and then
slowly releasing resources, tools and the forms of webinars, caregiver
ID programs, learning collaboratives, coaching and mentoring from myself and
(34:39):
our team at CFHI to support organizations to bring back
family caregivers. But I can't be adamant enough that for me,
this is deeply personal. I'm hearing about this every single
day from patients and families, and the harm that's occurring is,
in my opinion, exponential, and we have to balance it
with a risk approach. And I don't think right now
(35:01):
we've struck that balance.
Speaker 2 (35:04):
Not even close. Like if we think about like we
learned so much over the last few months, we know
that our personal protective equipment works. We're not seeing a
spike in and healthcare providers that are engaged in COVID
patients getting sick, you know, like we know that stuff works.
(35:25):
We know how important it is to have loved ones
at the at the advocating for their patients or for
their loved ones and being at their bedside. And especially
like you know where I like personally when I find
it the most value, especially when patients have chronic disease.
Like I can't count how many times where you know,
(35:48):
I'll see somebody that has a you know, for example,
they're the chronic respiratory problem and they've had it from
a young age, and you know, I look at the patient,
I'm thinking, we need to do X. Family members expresses.
You know, this is normal. They'll do this for a
few hours and they'll get better and be like thank you, Okay,
We'll sit tight avoid every intervention that I was about
(36:13):
to order because of they know that their loved one,
they know what they how they respond. They know. You
know what I see as agitation, they actually see it
as pain. And so you know, instead of giving something
for agitation, you get something for pain. I gets so
important and we all want the same thing. And so
what COVID just destroyed was to be able to have
(36:35):
that advocacy. And it also you know, and once again
when it came to end of life, it was just
it's no one deserves to dialogue as far as I'm concerned,
no one at all. And so yeah, I'm a It's
one of the things that I'm extremely The term is
(36:58):
anxious or sad about Julie is just how in some
ways when it comes to COVID, we've been really nimble
in terms of adjusting to the new information you know
what ppees involved, what treatments we need and so forth.
But this seems to have not trickled down quick enough
when it comes to, you know, having a loved ones
(37:20):
at the bedside. It's just I don't know what the
fears are. Like I know what the fears are, but
are they based on not reality but on on something valid,
you know, Like, I don't know what. I don't know
what we need to do to be able to push
this forward.
Speaker 3 (37:42):
I think what you're asking is, is the risk real?
Speaker 4 (37:44):
Is the risk of transmission from a family caregiver to
a patient or a family caregiver to staff or to
other people in the hospital real? And so we're working
on that right now. We're working with KADATH, the King
Association for Drugs and Technology in Health, who can drive
this evidence base for us. But we're hearing ancdotally that
(38:06):
it's it is fear based policy. To your point, we
know the effect of measures to control transmission of COVID.
We can educate family caregivers and and help them to
adhere to these practices. I mean, when they don't addere
then yeah, they probably shouldn't be there. But but I
would say for the most part of family caregivers. You know,
(38:27):
they can adapt pretty quickly, and they understand the hospital
environment pretty quickly if they've been there for a while.
And so I think, you know you talked about it
hasn't trickled down. My argument hasn't trickled up. It's got
to trickle up to hospital leadership, to the people who
are the policy developers and decision makers, and quite frankly,
to our to our governments, and again not just Ontario,
but across the country. You know, I have great respect
(38:51):
for for two of your colleagues who work in geriatrics,
doctor Nathan Stall and doctor Semir Sina, and they have
been incredible advocates in the long term care sector where
we've seen just.
Speaker 3 (39:04):
Unbelievable harm.
Speaker 4 (39:05):
And we know that in long term care thirty to
thirty five percent of care is delivered by family caregivers, feeding, toileting,
bathing hygiene, you know, managing bed source, hydration, ambulation, and
getting people to move around, getting them actually do their
exercise in their therapy, emotional and psychological and and you know,
(39:27):
stimulation and locking out those family caregivers has created exponential
collateral damage to COVID. There is no doubt the evidence
is clear on Drake Picard just wrote a book about it.
I don't know how he pulled that off in the
middle of a pandemic, but he did because he's andre.
Speaker 3 (39:47):
Like, what the heck?
Speaker 4 (39:49):
But so, But what I'm getting at is that what
is the risk of locking out the family caregivers as
opposed the risk of letting them back in? We do
not have any clear that they are an additional risk
of transmission and back at staff that are transmitting for
many reasons. Uh and and you know I would I
(40:10):
would agree with you like that the argument for having
them there from a patient safety and patient outcome and
experience point of view is more valid than fear based
policy of risk of transmission. But this is where we
get into what I call COVID as political kryptonite. Nobody
wants a damn outbreak in their hospital.
Speaker 2 (40:29):
All right, we'll be right back on solid healthcare radio.
We'll talk to kicks. It's better do your job and
roll up. And what's now we've rolled up? I take
that told the thing hopefully it's so nerds. I take
the sip for that. Yet I want to take the.
Speaker 3 (40:43):
Hit that the cabin.
Speaker 1 (40:44):
Stoop reallys dream us live at SAGA nine sixty am dot.
Speaker 2 (40:50):
C A the Ill Feel What Israel Lies wrapt? You're
listening to Solveing Healthcare radio doctor King. It's a tough
spot for administratives.
Speaker 4 (41:07):
But I.
Speaker 2 (41:09):
My biggest concern with in general, with with our approach
to COVID is a lot of it is fear based,
the fear fear to make the wrong decision. And you know,
I think we we do we. I mean, there's a
lot unown. You got to be able to accept the
fact that there's risks in our decisions, but there's also
(41:30):
a risk of inaction, you know, and I think that
that somehow falls through the crack by by us not
doing something, you know, after a decision is made that
still could be harmful. And so I think, yeah, it's
it's it's a really it's tough going through this. It's
tough seeing the families going through this, tough seeing our
(41:52):
patients go through this. That you know, I we got
a neighbor that's got a loved one and a nursing
home and and you know them having to back in
the summer going to get tested every week or two.
I forget what it was back then. Limited visits and
(42:13):
and you know their loved one is very near end
of life, is in their nineties and so forth, and
you think about, you know what, even what it's it
would be like as a ninety some year old and
your end stage of your life and not being able
to connect with your loved ones. I guess it's tragic.
(42:34):
It really is tragic.
Speaker 4 (42:36):
Well, and we know in the long term care sector
as well that when a person enters long term care
and you know this as a position, that typically they're
there for two years, right, macts like that's.
Speaker 3 (42:45):
Usually the longevity. So my question around these policies is
what are we saving? What are we protecting them from?
Speaker 2 (42:57):
You know what I love about that. It's been it's
so taboo to talk about it, but it's it's it's real.
It is real. Like I mean, I often give numbers
less than two years, but I guess it depends on
your source. But a lot of page we did some
studies on long term care and the outcomes of when
they come to our intensive carry in it. But yeah,
(43:17):
the prognosis once you walk in the door of a
long term care facility is very poor, and I think
that gets lost in the in the conversation when it
comes to U, when it comes to COVID.
Speaker 3 (43:31):
You know, it's interesting.
Speaker 4 (43:31):
There was a survey done recently, and I apologize because
I cannot remember the source, but it was talking to boomers,
so our aging population that are soon going to be
our you know, our seniors who are going to need
that that level of potential care.
Speaker 3 (43:45):
The quote was on, are.
Speaker 4 (43:47):
Saying that they want to age in place, they want
to age at home. My parents included, who were in
their late seventies, right. My dad was like, don't put
me in a home, whatever you do. And I'm kind
of laughing about it because like this massive pivot in
you know, people's perceptions of long term care and the
safety of it. But I think we're all as a
society seeing the harm that's occurring, and I think we're questioning,
(44:11):
you know.
Speaker 3 (44:11):
Are we support are we keeping them safe from COVID
or are we.
Speaker 4 (44:15):
Causing much more significant collateral damage in a different way.
And you know, and I know you're not in the
long term care sector, and neither am I really, although
our organization is very much supporting long term care to
help them sort of pivot in this time of COVID
and and supporting them with different resources and tools. But
(44:37):
we're all one system. And this is the thing that
sometimes I think we fail to recognize as individuals in
the system, but as a system, as an inst entirety
as you know, I think out of a hospital's at
niney nine percent capacity right now, A big part of
it is ALEC and ALC are those people who really
don't belong in hospital, but you can't bring put them
into long term care because there's an outbreak in the
(44:59):
home or there's not enough beds, or we don't have
enough beds where they're out of like you know, three
to four person environments, and so the system as a whole,
you know, is not set up in a way that
there is that efficiency.
Speaker 3 (45:13):
You know.
Speaker 4 (45:14):
Another topic that we haven't touched on is home care.
Home care got decimated.
Speaker 3 (45:18):
In a time of COVID.
Speaker 4 (45:20):
We cut back significantly on the resources dedicated to home care,
on therapies, on nursing hours. You know, I'm very connected
still to the pediatric medically complex community. I can tell
you you know, close friend who used to have seven
nights of nursing because she's got a medically complex child
who's got you know, intractable seizures. She's now got five
(45:43):
nights of nursing.
Speaker 3 (45:44):
So what does that mean.
Speaker 4 (45:45):
It means her and her husband share the one night
that someone has to stay up twenty four hours and
they have to stay awake. He needs constant monitoring. Let
me be really clear. This is also a child who
can't attend school because of risk of contracting COVID. So
because he's not in school, no physio, no occupational therapy,
no speech therapy, none of it because it's all delivered
(46:08):
in school, and we don't transition that to home care.
His nursing hours where his mom might have gotten respit
when he was in school. Those nursing hours are also
withdrawn because they're only school based and they're.
Speaker 3 (46:18):
Not home based. So we have major challenges with how
we structure the system to support patients and families, and
COVID has exacerbated that beyond measure.
Speaker 2 (46:30):
Wow. No, I mean I just finished an interview and
I was saying, how like COVID really puts a lens
on where our gaps are. And you know, I've been
trying to preach this as much as I can, Like,
there's a lot of areas that if we were smarter
about investing in would have, in my opinion, exponential impact,
(46:53):
like as you mentioned home care, when you could prevent
somebody from walking in our doors emergency department in a
nice cu because of the having that the level of support, Like,
that's an investment as far as I'm concerned, Okay, And
as much time as people could be at home, especially
with the complex needs, the better. And so I completely
(47:16):
hear you when it comes to these things. And I
mean and also I want to say it also you
wonder how much of that lack of home care right
now is exacerbating the ALC problem. You know, I it's
tough to know if you know, a lot of these
patients I think truly belong in long term care. But
if they did have that added level of care at home,
(47:39):
potentially some of these patients could be still at home. Wow.
It really, it truly has put a lens on where
our deficits are in healthcare. Man, Julie, like I'm cognizant
of the time, I know you are ultra busy, and
you got another meeting coming up here. It was a
(48:03):
true pleasure. You are a like a walking angel, the
work that you're doing the way you have honored Kate
and your family and impacted so many people's lives by
all the special things that you're doing and and the courage.
I want to emphasize this too to everyone that's listening.
(48:27):
This is you have to you have to have that gunction,
you have to have that drive, and it's not easy.
Every time she's having this conversation with someone like myself,
anytime she's walking into a pediatric hospital here, every time
she's hearing a story from another family that you know
(48:48):
is similar to experience that she might have experienced with Kate,
Like this is. This is hard, and so I just
want to truly commend you for the work you've done.
And it's one of the most special shows that I
must say I've had a chance to do. So I
really appreciate you taking the time.
Speaker 3 (49:09):
Like I said, I really appreciate invitation.
Speaker 4 (49:12):
I could talk with you for hours, and you know,
I appreciate the call out to you know, people who
have lived experience, who do really get involved in the
healthcare system and want to have these conversations. I don't
think I'm unique or you know, I appreciate you calling
(49:33):
me courageous. I think it's that I found a passion.
I found a place where I could honor Kate, but
I could also honor what we live through and what
I personally live through and lockstep with my daughter, but
also the background that I have both academically and professionally
in marrying up policy and seeing an opportunity to help
(49:55):
shift the system. So and I appreciate having these conversations.
You know, it's leaders like yourself who are willing to
kind of take the step and have these conversations and
push the barriers a little bit and be a bit
of a shift disruptor. So kudos to you for starting
this podcast or this this webcast and for bringing the
people that you're bringing in to have these hard conversations.
Speaker 2 (50:17):
I really appreciate that. That means a lot coming from you.
But thanks again, Julian.
Speaker 3 (50:23):
We need to talk again.
Speaker 2 (50:24):
Yeah, I think we'll be definitely doing that. Thank you
so much.
Speaker 3 (50:27):
Hey, take care.
Speaker 2 (50:28):
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(51:13):
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(51:38):
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Speaker 1 (51:56):
No radio, no problem. Stream is live on Saga nine
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Speaker 2 (00:11):
Turned my music ha ha ha, sure I do. I'm
from the streets where to third Broadcast Nation. It is
with absolute pleasure that we have Julie Guria on the show.
And let me know if I got this right, Yulie,
(00:32):
strategically patient partnership for c Fhi, am I getting that
at a long point?
Speaker 3 (00:40):
You're getting that right? Yeah?
Speaker 4 (00:41):
Amazing Canadian Foundation for Healthcare Improvement.
Speaker 2 (00:44):
Yeah, yes, amazing. And you've been busy? Is that fa
to say, Julie?
Speaker 3 (00:49):
Yeah, I think our entire organization has been busy.
Speaker 4 (00:51):
Anybody who's involved in healthcare delivery or healthcare system or
quality improvement these days has been really busy.
Speaker 2 (00:58):
Yeah.
Speaker 3 (00:59):
So yeah, that would probably be an accurate statement business.
Speaker 2 (01:01):
Yeah, I definitely hear you. So maybe tell us a
bit about your journey to your position, what life has
been like of late in terms of all you've had
to do for advocating for patients and then lived experience
and so forth. Yeah, just walk us through how you
got to where you are.
Speaker 4 (01:21):
Yeah, So thanks for inviting me to have this conversation.
I'm a fan. So I've been listening to your podcast
and love the people that you've been interviewing so far,
and really happy that you're bringing someone on who sort
of is an advocate and an advisor and a partner
in this lived experience space.
Speaker 3 (01:38):
So I came to this role a number of different ways.
My background is.
Speaker 4 (01:43):
In human connects and exercise physiology, and I've worked in
health policy now for well over two decades federally. So
I'm actually a public servant with Health Canada and I'm
on an interchange right now to develop this strategic leadership
role at the Canadian Foundation for Health Care Improvement. And
I've come to that because of my own personal lived
experience with significant interaction with the healthcare system with my
(02:08):
daughter Kate.
Speaker 3 (02:10):
So Kate passed away five years ago.
Speaker 4 (02:12):
As I was telling you, her birthday was actually on Thanksgiving,
October eleventh, and Kate had a rare form of mitochondrial
disease that wasn't diagnosed until she was about four and
a half. Through genetic exome sequencing. She was quite unwell
with multiple sort of organ issues. She had some developmental
delay and she gradually lost her hearing, so she became
(02:34):
profoundly deaf.
Speaker 3 (02:35):
Over the first few years of her life.
Speaker 4 (02:38):
Lots of interactions with the healthcare system I see you
admissions impatient. She was taking care by CHIO at Sick
Kids at SHO Saint just Stine in Montreal, by the
Mayo Clinic in the States, and also in England. The
National Health System in England also intervened in her care.
She has the reputation of being the first person in
(02:59):
the world diagnosed with TRNT one deficiency or si f D,
which is her rare form of mitochondrial disease.
Speaker 3 (03:07):
I now actually.
Speaker 4 (03:09):
Coordinate a family group of persons from across the world
in the UK, in Europe, and the States in Canada
who have loved ones affected by this condition. And Kate's
genetic material actually is at both you and at Carlton
University being studied in.
Speaker 3 (03:26):
Yeast models and mouse models to better understand this condition.
So she was a real trailblazer.
Speaker 4 (03:31):
In her life and she passed away following a failed
Bomera transplant to help to not cure her condition, but
to help to mitigate some of the symptoms, and her
ten year old brother was her donor at the time,
and she passed away from complications related to graph versus
host disease. I'm telling you all this because I want
(03:53):
to position the amount of and you can probably tell
as a physician, the amount of experience that I've had
with the healthcare system. Literally hundreds of doctors and nurses,
hundreds involved in Kate's care. And that's just the specialists
and the nurses. I'm not, you know, mentioning sort of
any clerks that we've had to work with, reporters or
hospital leadership, or quality improvement teams or patient safety teams,
(04:19):
and so you.
Speaker 3 (04:20):
Know, I bridged.
Speaker 4 (04:21):
I started to bridge that experience fairly soon in Kate's
journey into advising on Patient and Family Advisory councils and
getting involved with healthcare organizations to talk about lived experience,
how patients were experiencing the health care system and families
and what could be better. And so I've had the
privilege to work with many hospitals, many healthcare organizations. I
(04:45):
was the inaugural chair of the Minister's Patient and Family
Advisory Council, appointed by Minister Hoskins at the time, and
also worked with Minister.
Speaker 3 (04:51):
Elliott quite closely.
Speaker 4 (04:54):
I work with a number of different organizations, including the
Kade Medical Association, the Royal College of Physicians and Surgeons,
and other sort of national organizations to talk about meaningful
and authentic engagement with persons who have lived experience across
a health care system, to shift how our health care
is delivered, and to talk about policy and practice, and.
Speaker 3 (05:17):
To really truly.
Speaker 4 (05:18):
Bring us to a point where we have a patient
not just patient centered healthcare system, but a patient partnered
health care system.
Speaker 2 (05:25):
Wow. Wow, Like, first of all, hearing about Kate, you know,
as a as a parent, I just I just can't imagine,
Like I just I can't imagine. And I am really
sorry for the experience and having to lose Kate. And
I hope your family I wish the best for your
(05:46):
family in terms of all that you've had to go
through already. You must be don't take this wrong way,
ultra knowledgeable when it comes to the way the system
works from at all levels of the healthcare system. And
was there like some key themes that you saw where
(06:12):
it was clear we needed to do better, whether that's
through communication, whether that's through you know, just what we
put our patients through. Because you know, one thing that
I've learned from doing the show in the short period
of time is there's a lot to learn from the
patient experience, from the lived experience. There's tons, there's things,
there's angles that we don't appreciate as as as a clinician.
(06:37):
So was there key themes that you have noticed over
the years truly?
Speaker 3 (06:45):
Yeah, Well, I'm glad that you mentioned the word communication.
Speaker 4 (06:48):
If you follow the patient Almasman, our new patient Almasman
Kathy Fuchs now in Ontario, and our previous patient Almastman,
who happens to be now our Minister of Health, Christine Elliott,
when you read the reports from the patient amass Moonnitary
over the years, ninety five plus percent of patient complaints
or poor patient experience come from breakdown and communication over
(07:12):
ninety five percent.
Speaker 3 (07:14):
And so you know, I think there are many things
that are contributing to that. I think that we've.
Speaker 4 (07:19):
Got still an extremely hierarchical health care system and you're
probably experiencing that as a position as well. Means the
way that you're trained, the system is very hierarchical, and
we tend to historically do two patients or four patients
and less of doing with and in collaboration, and we're
moving into some of those better practices. We talk about
shared decision making, and there's better mentoring and better coaching.
(07:42):
But when push comes to shove, and when we get
into crises, COVID is a great example, we tend to
get right back into an overly medicalized, hierarchical health care system.
So I think the system itself is not structured to
be patient centered or patient partnered. You'll give you a
really clear example transitions in care from hospital to home.
(08:03):
And you know this as a position. I'm sure you've
experienced it on behalf of your patients. It's just next
to impossible to navigate and coordinate that.
Speaker 3 (08:11):
And to be.
Speaker 4 (08:12):
Truthful, the responsibility falls on the shoulder, oftentimes with the
patient themselves or a family member, but we've made it
near impossible to coordinate that effectively, you know.
Speaker 3 (08:24):
I mean, I'll share an anecdote.
Speaker 4 (08:25):
At the end of Kate's life, when we knew that
she was dying and she was going to pass away,
we decided to bring her home from Montreal back to Ottawa,
and we decided not to admit her into hospital at
CHIO because she was dying and we wanted her at home,
but to coordinate.
Speaker 3 (08:41):
That was a herculeian effort.
Speaker 4 (08:43):
We could not get home care in place because she
was coming home on a Saturday, while home care only
operates Monday to Friday nine to five. We couldn't get
proper pain medication again because the home care nurse wasn't
deployed in the appropriate.
Speaker 3 (08:55):
Amount of time.
Speaker 4 (08:57):
We had significant challenges and it requires a significant amount
of advocacy in my part to get the child home.
And you know, that's just one example of a poor experiences,
but you know there there are, there are many many.
I would challenge anyone to find me an example of
a completely efficient, effective and patient centered transition and care.
(09:21):
And again it's simply how the healthcare system is set up.
And so to your point, bringing in lived experience. One
of the tools that we use in patient engagement partnership
is what we call experience journey mapping, bringing in that
lived experience and going through the patient journey and recognizing
or comparing the lived experience to the structures and the
policies and process that we have in place, and understanding
(09:43):
the challenges and barriers, not just from a system's perspective,
from that lived experience perspective.
Speaker 3 (09:49):
That is the sweet spot.
Speaker 4 (09:51):
Right now that we're missing in the system. It's starting
to come. We're getting patient family advisory counsels in place,
and we're getting patient leaders like myself in place, and
you know, we're we're helping to to you know, create
what we call engagement capable environments, but it's still few
and far between.
Speaker 2 (10:07):
Wow, and yeah, I just I think it's so vital
and I appreciate the fact that this is we're seeing
more of this, but we need that advocacy when it
comes to decision makings at all levels. Like I I'm like,
I'm I'm convinced of this. It's too important when you realize,
(10:31):
like I don't really like with that story of Kate,
like put yourself those that are listening, like put yourself there.
You have a dying child that you want to bring
home and you got to waste this freaking energy and
bandwidth on the logistics of getting home, Like this is Canada.
(10:52):
We should figure this out, man, Like we should really
be able to say, you know when it comes to
especially I mean, I'm probably of care docs have a
soft spot for end of life care, Like we got
to figure a way to make this happen. You know
what I when i'm you know what I'm saying. And
that's why I think. You know, when it comes to
major policy, when it comes to decisions, when it comes
(11:12):
to research, when it comes to infrastructure in the hospital,
you know, our patients and their families need a voice,
They need to be advocated for. Because and the other
thing too is like some of the best ideas often
come from these conversations, like I mean, I don't I
don't know if you have an anecdote off the top
of your head, but just sometimes the and it's sometimes
(11:33):
it's just a little thing like I remember a colleague
of mine they actually I might be I don't want
to say the hospital because I'm getting it wrong. But
they even had like we're setting up like patient and
family navigators where they were, you know, like really, because
I mean, if you've got a new diagnosis of cancer,
(11:54):
you're trying to go home when you've got complex care needs,
this is it's not easy. As you lose to Julie,
like you need to be able to coordinate appointments, you
need to make sure people are home at a specific time,
Like to me, like this is what it's it's just
so important, so long winded question. Have you seen any
(12:15):
changes Have you seen any solutions of latenst either whether
it comes to the communication, when it comes to transitions
to care that really make you optimistic about our future.
Speaker 3 (12:28):
Absolutely.
Speaker 4 (12:30):
You know, as I said before, this is the really
the sweet spot right now, the unmined territory of healthcare
system transformation.
Speaker 3 (12:39):
So you know a couple of anecdotes.
Speaker 4 (12:42):
You know, at the king Foundation for health Care Improvement,
we've been working for the past eighteen to twenty four
months on what we call a learning collaborative and it's
called Bridge to Home and it's about transitions from hospital
home and it's leading healthcare teams from across the country
who apply to be part of our collaborative.
Speaker 3 (12:59):
On how to improve that journey.
Speaker 4 (13:01):
And so shout out to a colleague of mine, Shoshana Goldstein,
who is at the uhen Open Lab HGEN in Toronto
University Health Network, and she developed something called pots Patient
Oriented Discharge Summary. This was developed co designed with patient,
(13:21):
family and caregivers. It is a tool that ensures that
it's not just the healthcare team to start just charging
the patient so to speak, it is the patient and
the family caregiver, the essential care partner, not a visitor,
but person who's essentially partnered in care. And we're going
to talk about that a little bit. Who helped develop
the transition plan together or the discharge plan together, and
(13:43):
so everyone is fully informed and there is a plan
of action that is well executed. Homecreers brought in early,
family physicians or the home physician is brought in early,
and the patient and family are partnered in care. Just
a clear example of just just adjusting it and fine
tuning it and tweaking it so it works. And we're
(14:04):
proud that there's twenty four to twenty six hospitals and
healthcare organizations that are working with us to spread and
scale the use of that tool co designed by patient,
family and caregivers. You know, I'm sharing quite a bit
with you personally, which I don't often do anymore about Kate,
but I feel comfortable with you so and maybe I
want to celebrate her a bit. But Kate went through
(14:24):
some very difficult times in the last few months of
her life, and so did our family that significantly impacted
her safety and her care very unfortunately.
Speaker 3 (14:34):
And we went through a year.
Speaker 4 (14:36):
And a half process with a hospital to talk about
what happened to her, where the breakdowns and communication were,
where the breakdowance and policy and hospital practice were. And
that conversation, although very long and very difficult for my
husband and myself to go through, resulted in thirty policy
and program of practice changes at the hospital and these
(14:59):
were documented, they were shared with us, an action plan
was executed as part of their quality improvement initiative. And
I'm also proud to say that because of that very
first interaction of bringing a family into a patient safety investigation,
this is now more of a common practice at this
hospital where they bring in the patient or the family
(15:20):
member to talk about that harm situation or that patient
safety situation, and they're part of the quality improvement agenda
around this. And the investigation or conversation so to speak.
And how that had not been happening prior to this
is beyond me. I mean, I liken it to a
car accident. How is it that you might have a
collision at an intersection and you only go to speak
(15:41):
to one occupant in one single vehicle, and you don't
go and talk.
Speaker 3 (15:45):
To the other about their side of the story and what.
Speaker 4 (15:47):
They saw happened and so we are seeing that shift
and that change across the system and it really has
to do with leaders and I give a shout out
to some very strong leadership in hospitals across the country,
not just here in Ontario that understand that patient voice
and lived experience, as you said, just can create small
(16:09):
change or what I call the head tilt like the
Oh wait a second, I hadn't thought of it that way.
I didn't see it that way. When I speak at conferences, Quadua,
one of the things I look for is the head
tilt and I'd love to measure that angle and actually,
you know, sort of from a data point of view,
see how many hottels I can get or what the
angle the head.
Speaker 3 (16:28):
Tilt is because you create that aha moment.
Speaker 2 (16:31):
All right, We'll be right back on Solid Healthcare Radio
with doctor.
Speaker 1 (16:34):
Ka stream us live at SAGA nine sixty am dot C.
Speaker 2 (17:10):
You're listening to SOLVEMN Healthcare Radio with Doctor King. Wow.
I mean, can I just say, you know we're all
about like the show is about transforming healthcare and promoting
people that are doing that called changing the boogie. And
when you tell me that your meetings with the hospital
and Gage that was involved like impacted thirty decisions, thirty policies.
(17:38):
That is bettering the lives and the experience of future patients.
That's what we call changing that boogie. And this is
what it's all about. Like, maybe put you on the spot.
Can you give an example of something that maybe was
tweaked that you that was like a policy tweak, that
(17:59):
that was lamented.
Speaker 4 (18:01):
Yeah, sure, and I'll just be cautious because I don't
want to identify the organization. So Kate was a stem
cell transplant patient, but she wasn't oncological right, she wasn't
a cancer patient. And so the way the hospital organized
follow up for these children and where they might be
in crises when they came into clinic, into that clinic
(18:24):
where they were being managed, was only the cancer kids
or the oncological kids were put on the whiteboard as
actually being present, and so when the physicians were picking
up on who was present in clinic, they were only
seeing the cancer kids. So Kate was in crisis.
Speaker 3 (18:37):
She was having.
Speaker 4 (18:40):
An episode following her stem cell transplant. Stem cell transplant
is not a very linear journey when you're recovering from it.
And because she wasn't on this whiteboard, and identified. Because
she wasn't a cancer patient, she wasn't identified as actually
being present in clinic, and this created a slippery slope
of no one picking up on her care. So we
had no physician attending to her because no one was
(19:02):
assigned to her. So the simple tweak was all children
who come into the clinic, whether be they cancer patients
or not, are identified on that whiteboard and they're assigned
a clinical lead, a physician lead.
Speaker 2 (19:16):
Beautiful.
Speaker 4 (19:16):
It's small and it's simple, but quite frankly, that saves lies,
That changes harm, that changes you know what happened to Kata.
She got into a very critical situation quite quickly because
no one was following her, and it wasn't until she
was in crisis that someone was like, oh crap, you
better go to check on the kid in room one.
Speaker 2 (19:37):
Yeah. And I mean, the other thing that I like
about what you were doing is like advocating for like
if there's incidences, to have the family involved, because it
also I don't want to put words in your mouth,
but it also like that sounds in sense I don't
(20:02):
know how to say this in a sensitive way. It's
like there's at least some purpose out of the experience,
you know what I mean, Like there was I'm trying
to say that there was an ability for us to
learn and and do better for future patients. And and
the other thing too is and not to be too repetitive,
(20:23):
but that perspective. That really adding that perspective piece, Like
it's a good analogy you make, like if you're in
a car accident you only get talked to one eye
witness or whatever, one person involved, like you might be
missing something that that can't run out to the you know,
was that speed truly sixty kilometers an hour as they're claiming,
So it's just you know, adding that extra piece. I
(20:45):
guess what I was trying to say that it might
add assist with the closure when something happened, the negative
experience happened that you know, there was at least some
learning that happened along with it. Sorry, I'm fumbling there.
I just really don't want to sound insensitive.
Speaker 3 (21:00):
You're not at all.
Speaker 4 (21:01):
And I have a pretty thick skin, right I'm in
this space a lot, so please don't apologize. I think
there's a couple of things there that I want to unpack.
So certainly closure is part of it, and I think
that's incredibly important as a comment that we, as a
healthcare system, and I'm going to say we, because patients
are part of this as well, tend to circle the
(21:22):
wagons when harm occurs. And I think there's a lot
of work to be done there about you know, sort
of no fault transparency, coming up with apology early, and
you know, quite frankly, of you know, getting getting in
front of things early before we get into sort of
litigious or or legal issues. And that's just not how
we're structured right now. A complaint comes forward, a patient
(21:45):
safety incident comes forward, as soon as it's reported, the
wagons circle and it's very difficult for patients and families
to get closure. And we see that on repeat across
this country. I don't have to give you examples. I'm
sure your listeners know them well. I think the other
thing for our family, and we lost Kate at this point,
right this wasn't during her life. This was after her death.
Speaker 3 (22:05):
Was and we were angry.
Speaker 4 (22:08):
We were very upset, and we were very angry, and
we wanted to change something. We wanted to change something
for Kate, even though she was already gone. We wanted
to change something for her. Because what happened to her
wasn't right. And the reason I'm sharing that quadra is
it's very important we tend to as a system get
really concerned when a patient or family carever is angry.
Speaker 3 (22:29):
Ooh geez, they're angry, Like, we can't go there.
Speaker 4 (22:32):
Let's put them through the patient relations patient experience office,
kind of set them aside, push.
Speaker 3 (22:37):
Them over there.
Speaker 4 (22:38):
We can still engage and partner when people are angry.
I still carry a little bit of anger with me.
I carry a lot of guilt and shame and grief
as well, and those are complicated human emotions. But it
doesn't mean that I can't do my job and that
I can't advise and advocate and partner and so finding
you know the ways to work with families even in
(23:01):
a time when you know they have met with crises
and they might be angry. And I think the way
we currently structure, with all due respect to those people
who lead in patient relations and patient experience, I think
the way we currently structure that does a real disservice
to our healthcare teams and to our patients and families.
We expect them to come to meetings if they're going
to be held at the hospital Monday to Friday nine
(23:24):
to five where their trauma might have occurred.
Speaker 3 (23:26):
We expect them to meet.
Speaker 4 (23:28):
With teams that are of the hospital where the harm
might have occurred, rather than maybe meeting with a neutral
mediator or a neutral part third party. We tend to
not share information transparently. We tend to value the chart
and the information of the medical and healthcare team over
the experience of the family, to your point, and so
(23:49):
I think those are some of the you know, the
current barriers to understanding that patient safety, patient harm, patient
complaint can actually illustrate some really great opportunity used for
change in the system. But we've got to rethink how
we've designed that and keep everybody safe, not just the
patients and families who've experienced harm, but the physicians as
(24:11):
well and the healthcare teams as well, and we don't
do a great great job of it. I will say
that when we went through this experience, it was very traumatizing.
We walked into a neutral space that I had advocated
for that was outside the hospital, into a room we're
literally on the wall where these massive printed charts that
they called swim lanes, and it was a timeline with
(24:33):
every single team who had touched and or been involved
in Kate's care, and it outlined the last two weeks
of her life where the harm had occurred. And then
the expectation was, okay, we were going to add in
our narrative to that. And it was all based on
the chart and so important to do, but really hard
for us to my husband, I had to walk in
(24:55):
cold into that room and to see that there'll be
the last two weeks of my daughter's life documented on
these walls. And so patients and families can help to
design that process.
Speaker 3 (25:04):
You know.
Speaker 4 (25:05):
I've offered feedback to the hostel that what could change here?
How could this process be different? How could I feel
more safe and more partnered in this? And all this
to say is that there's a richness and a value
of information there. It's about closure for the family, but
it's about shifting the system as well.
Speaker 2 (25:21):
We'll be right back on solving healthcare. Radio with doctor k.
Speaker 1 (25:25):
Out of the night into the water.
Speaker 2 (25:29):
It push the boat from shure, breaking it and the
stillness of.
Speaker 1 (25:37):
The no Radio, No Problem stream is live on SAGA
ninety sixty AM, dot C O one AM, Jewels Fast
one and one dam Jewels, Fast one and.
Speaker 2 (25:54):
The Slow Mo. You're listening to Solving Healthcare Radio with
doctor k. I'm just hearing you speak, Julie. It's just
you know, it's not only inspirational, like I'm motivated to
do more, to learn more, to really give that avenue
(26:14):
for our patients and their families to express their experience,
but just also I mean, I'm in awe of how
courageous you guys have been. How like the thing that
when it comes to something like this is that you know,
speaking to it now, like I mean we're on zoom,
(26:36):
but I could see it in your eyes, like this
is not easy whenever you have to go back and
think about what you went through, that lived experience, and
you guys, you and your husband being courageous and and
and being those being those advocates, being the leaders that
that are going to help so many people. And you know,
(26:58):
it's funny because you you telling me that story about
the charts on the wall. I'm being one hundred percent
honest with you. I would have never registered that as
being potentially traumatic, never in my life, like you know,
you like I didn't do it there because I'm like now,
Congressant but head tilt, like my head would have been
like the degree of skilt would have been like you know,
(27:21):
like when you're throwing down that that information, it's like
it makes sense as you say it, but I would
never have pieced that together. And so I think what
you're doing is just it's it's magical. If it's okay
with you. I want to speak about what's going on
(27:41):
with COVID because my god, you know, as as a
as a guy that has seen firsthand what the experience
has been like for patients and families, especially early in
the pandemic, it melted my heart seeing people I alone,
seeing the inability of people to see their loved ones
(28:04):
at the end of life. I oh, it was just
straight up nasty. You must be busy now regarding the pandemic.
I don't even know where to start, Julie, Like, what
have you been involved with or hearing about in terms
(28:25):
of patients lived experience or families lived experience when it
comes to our pandemic.
Speaker 3 (28:31):
Yeah.
Speaker 4 (28:31):
So, because I'm out there publicly and because I've been
doing this for so long, you know, one of the
roles that I tend to play that is deeply personal
to me is I advise families a lot, and so
just as recently as yesterday evening, a colleague connected me
with a wife whose husband is going through significant, a
(28:52):
significant cancer journey, multiple rounds of chemo and has now
come through a stem cell transplant and started in February
that as of March mid March, as you know, she
was no longer able to participate partner in his care
or be there to support him. And so she's reaching
out to me now because this journey is continuing and
(29:14):
we're going to have a conversation soon to talk about,
you know, what I would advise her to do to
be able to reintegrate her role as an essential care partner.
So that segues me into what am I doing now,
So we you know, our organization, it was very much
about championing the role of family caregivers from an open
(29:36):
family presence policy point of view. So for the past
five to six years, we've worked across the country with
the major hospitals one hundred and thirty one hospitals across
the country, like the largest hospitals in Canada, to re
examine this whole thing around visitors and visiting hours and
to start to talk about what would it look like
to have open family presence policies and to welcome families
(29:59):
as part of healthcare teams and to talk about what
partnership and care look like not just for the patient
but for family caregivers. And so, over the course of
five years of an initiative that we called Better Together,
where we had all these major hospitals on board as
well as some of the leading healthcare organizations, we advanced
open family presence policies from approximately thirty five percent across
(30:21):
the country to seventy three percent. So that means that
seventy three percent of hospitals pre COVID had relatively flexible
policies where families could be present really whenever they chose
to on a twenty four to seven o'clock and that
was supported and that was part of the practice of
that healthcare organization. And then COVID hit and overnight, all
(30:44):
of a sudden, everyone became a visitor. And we did
not differentiate in terminology between what is a visitor, which
is a social visit and important, and what is an
essential care partner a family caregiver who partners in gas
here provides emotional, psychological, physical support, offers continuity of care,
(31:06):
patient history and supports care coordination. And I'm being very
clear about this squadrill because this is based in the literature.
This is based in research and evidence the impact that
family caregivers have as care partners on patient experience, but
also patient safety and patient outcome. Patients have better outcome
(31:28):
when their essential care partner, be it a family member,
a trusted friend, it might be a substitute decision maker,
but identified by the patient, as that essential care partner
is present, their outcome is better. They are safer in
the healthcare system. And in mid March we lock them out.
(31:50):
Now why did we lock them out? Well, because COVID
and we were all freaking out. How does this thing
get transmitted? What are the risks here?
Speaker 3 (31:58):
We don't have enough.
Speaker 4 (31:58):
Ppe are we all wearing you know, gowns, gloves, mass
shields and the whole nine yards. What's the most effective thing?
And so in early days the pandemic, absolutely we got
to kind of get our footing here and figure this out.
Speaker 3 (32:12):
But we are now close to.
Speaker 4 (32:13):
Nine months in and many hospitals are still restricting visitors.
So the guidance and directive has come from ministries of
Health and chief metical lossters of health and some of
them are shifting. You know, we've seen shifts in BC
albertas Asketchewann and their terminology, they're differentiating between a visitor
and essential care partner. We're seeing shifts and some of
(32:33):
the terminology here in Ontario as well. We're seeing some
hospital leadership where they're like, Okay, we know we need
caregivers back because they are essential. They're not only we're
not only risking patients safety, but we're seeing moral distress
amongst our health care providers. They're watching people die alone,
or they're watching people go through extremely challenging health care
journeys without without a family caregiver present and there to
(32:55):
help navigate. And that's not anecdotal. This is again bearing
itself out in some of the early research that we're
seeing around the pandemic. And so they're starting to put
together sort of training programs or education knowledge programs for
family carevers to help them understand ipack in infection prevention and
control procedures, masking, physical distancing, hand washing, just so that
(33:17):
they're prepared to be in a hospital COVID environment, and
also that staff are reassured.
Speaker 3 (33:23):
That okay, that caregiver they need to be here.
Speaker 4 (33:26):
They've got they've got some training and some knowledge about
you know, what it is to be in a COVID
environment and Okay, we're more comfortable with than being here.
And so we're seeing that organizations like Hearth Puron Healthan
Hearth's cur On Sorry Perth cure On Health Alliance, Jennis Kepper,
the CEO of Hotels Geograss Hospital, Kevin Smith at UHN,
(33:48):
we're seeing some great leadership of bringing back family caregiver presence.
Speaker 3 (33:52):
We're also seeing significant gaps still.
Speaker 4 (33:54):
Where visitors are restricted, family carevers are restricted, and so
a big part of my policy worker the past six
months has been the release of a document in June
called the Reintegration of Family Caregivers in the Time of
COVID nineteen hashtag more than a Visitor. And over the
past five months we've conducted a series of policy labs
(34:15):
with expert advisors from all sectors of the healthcare system,
and we'll be releasing that report, we hope, in about
a week or two, and it'll be very much policy
guidance about how to bring back family caregivers and then
slowly releasing resources, tools and the forms of webinars, caregiver
ID programs, learning collaboratives, coaching and mentoring from myself and
(34:39):
our team at CFHI to support organizations to bring back
family caregivers. But I can't be adamant enough that for me,
this is deeply personal. I'm hearing about this every single
day from patients and families, and the harm that's occurring is,
in my opinion, exponential, and we have to balance it
with a risk approach. And I don't think right now
(35:01):
we've struck that balance.
Speaker 2 (35:04):
Not even close. Like if we think about like we
learned so much over the last few months, we know
that our personal protective equipment works. We're not seeing a
spike in and healthcare providers that are engaged in COVID
patients getting sick, you know, like we know that stuff works.
(35:25):
We know how important it is to have loved ones
at the at the advocating for their patients or for
their loved ones and being at their bedside. And especially
like you know where I like personally when I find
it the most value, especially when patients have chronic disease.
Like I can't count how many times where you know,
(35:48):
I'll see somebody that has a you know, for example,
they're the chronic respiratory problem and they've had it from
a young age, and you know, I look at the patient,
I'm thinking, we need to do X. Family members expresses.
You know, this is normal. They'll do this for a
few hours and they'll get better and be like thank you, Okay,
We'll sit tight avoid every intervention that I was about
(36:13):
to order because of they know that their loved one,
they know what they how they respond. They know. You
know what I see as agitation, they actually see it
as pain. And so you know, instead of giving something
for agitation, you get something for pain. I gets so
important and we all want the same thing. And so
what COVID just destroyed was to be able to have
(36:35):
that advocacy. And it also you know, and once again
when it came to end of life, it was just
it's no one deserves to dialogue as far as I'm concerned,
no one at all. And so yeah, I'm a It's
one of the things that I'm extremely The term is
(36:58):
anxious or sad about Julie is just how in some
ways when it comes to COVID, we've been really nimble
in terms of adjusting to the new information you know
what ppees involved, what treatments we need and so forth.
But this seems to have not trickled down quick enough
when it comes to, you know, having a loved ones
(37:20):
at the bedside. It's just I don't know what the
fears are. Like I know what the fears are, but
are they based on not reality but on on something valid,
you know, Like, I don't know what. I don't know
what we need to do to be able to push
this forward.
Speaker 3 (37:42):
I think what you're asking is, is the risk real?
Speaker 4 (37:44):
Is the risk of transmission from a family caregiver to
a patient or a family caregiver to staff or to
other people in the hospital real? And so we're working
on that right now. We're working with KADATH, the King
Association for Drugs and Technology in Health, who can drive
this evidence base for us. But we're hearing ancdotally that
(38:06):
it's it is fear based policy. To your point, we
know the effect of measures to control transmission of COVID.
We can educate family caregivers and and help them to
adhere to these practices. I mean, when they don't addere
then yeah, they probably shouldn't be there. But but I
would say for the most part of family caregivers. You know,
(38:27):
they can adapt pretty quickly, and they understand the hospital
environment pretty quickly if they've been there for a while.
And so I think, you know you talked about it
hasn't trickled down. My argument hasn't trickled up. It's got
to trickle up to hospital leadership, to the people who
are the policy developers and decision makers, and quite frankly,
to our to our governments, and again not just Ontario,
but across the country. You know, I have great respect
(38:51):
for for two of your colleagues who work in geriatrics,
doctor Nathan Stall and doctor Semir Sina, and they have
been incredible advocates in the long term care sector where
we've seen just.
Speaker 3 (39:04):
Unbelievable harm.
Speaker 4 (39:05):
And we know that in long term care thirty to
thirty five percent of care is delivered by family caregivers, feeding, toileting,
bathing hygiene, you know, managing bed source, hydration, ambulation, and
getting people to move around, getting them actually do their
exercise in their therapy, emotional and psychological and and you know,
(39:27):
stimulation and locking out those family caregivers has created exponential
collateral damage to COVID. There is no doubt the evidence
is clear on Drake Picard just wrote a book about it.
I don't know how he pulled that off in the
middle of a pandemic, but he did because he's andre.
Speaker 3 (39:47):
Like, what the heck?
Speaker 4 (39:49):
But so, But what I'm getting at is that what
is the risk of locking out the family caregivers as
opposed the risk of letting them back in? We do
not have any clear that they are an additional risk
of transmission and back at staff that are transmitting for
many reasons. Uh and and you know I would I
(40:10):
would agree with you like that the argument for having
them there from a patient safety and patient outcome and
experience point of view is more valid than fear based
policy of risk of transmission. But this is where we
get into what I call COVID as political kryptonite. Nobody
wants a damn outbreak in their hospital.
Speaker 2 (40:29):
All right, we'll be right back on solid healthcare radio.
We'll talk to kicks. It's better do your job and
roll up. And what's now we've rolled up? I take
that told the thing hopefully it's so nerds. I take
the sip for that. Yet I want to take the.
Speaker 3 (40:43):
Hit that the cabin.
Speaker 1 (40:44):
Stoop reallys dream us live at SAGA nine sixty am dot.
Speaker 2 (40:50):
C A the Ill Feel What Israel Lies wrapt? You're
listening to Solveing Healthcare radio doctor King. It's a tough
spot for administratives.
Speaker 4 (41:07):
But I.
Speaker 2 (41:09):
My biggest concern with in general, with with our approach
to COVID is a lot of it is fear based,
the fear fear to make the wrong decision. And you know,
I think we we do we. I mean, there's a
lot unown. You got to be able to accept the
fact that there's risks in our decisions, but there's also
(41:30):
a risk of inaction, you know, and I think that
that somehow falls through the crack by by us not
doing something, you know, after a decision is made that
still could be harmful. And so I think, yeah, it's
it's it's a really it's tough going through this. It's
tough seeing the families going through this, tough seeing our
(41:52):
patients go through this. That you know, I we got
a neighbor that's got a loved one and a nursing
home and and you know them having to back in
the summer going to get tested every week or two.
I forget what it was back then. Limited visits and
(42:13):
and you know their loved one is very near end
of life, is in their nineties and so forth, and
you think about, you know what, even what it's it
would be like as a ninety some year old and
your end stage of your life and not being able
to connect with your loved ones. I guess it's tragic.
(42:34):
It really is tragic.
Speaker 4 (42:36):
Well, and we know in the long term care sector
as well that when a person enters long term care
and you know this as a position, that typically they're
there for two years, right, macts like that's.
Speaker 3 (42:45):
Usually the longevity. So my question around these policies is
what are we saving? What are we protecting them from?
Speaker 2 (42:57):
You know what I love about that. It's been it's
so taboo to talk about it, but it's it's it's real.
It is real. Like I mean, I often give numbers
less than two years, but I guess it depends on
your source. But a lot of page we did some
studies on long term care and the outcomes of when
they come to our intensive carry in it. But yeah,
(43:17):
the prognosis once you walk in the door of a
long term care facility is very poor, and I think
that gets lost in the in the conversation when it
comes to U, when it comes to COVID.
Speaker 3 (43:31):
You know, it's interesting.
Speaker 4 (43:31):
There was a survey done recently, and I apologize because
I cannot remember the source, but it was talking to boomers,
so our aging population that are soon going to be
our you know, our seniors who are going to need
that that level of potential care.
Speaker 3 (43:45):
The quote was on, are.
Speaker 4 (43:47):
Saying that they want to age in place, they want
to age at home. My parents included, who were in
their late seventies, right. My dad was like, don't put
me in a home, whatever you do. And I'm kind
of laughing about it because like this massive pivot in
you know, people's perceptions of long term care and the
safety of it. But I think we're all as a
society seeing the harm that's occurring, and I think we're questioning,
(44:11):
you know.
Speaker 3 (44:11):
Are we support are we keeping them safe from COVID
or are we.
Speaker 4 (44:15):
Causing much more significant collateral damage in a different way.
And you know, and I know you're not in the
long term care sector, and neither am I really, although
our organization is very much supporting long term care to
help them sort of pivot in this time of COVID
and and supporting them with different resources and tools. But
(44:37):
we're all one system. And this is the thing that
sometimes I think we fail to recognize as individuals in
the system, but as a system, as an inst entirety
as you know, I think out of a hospital's at
niney nine percent capacity right now, A big part of
it is ALEC and ALC are those people who really
don't belong in hospital, but you can't bring put them
into long term care because there's an outbreak in the
(44:59):
home or there's not enough beds, or we don't have
enough beds where they're out of like you know, three
to four person environments, and so the system as a whole,
you know, is not set up in a way that
there is that efficiency.
Speaker 3 (45:13):
You know.
Speaker 4 (45:14):
Another topic that we haven't touched on is home care.
Home care got decimated.
Speaker 3 (45:18):
In a time of COVID.
Speaker 4 (45:20):
We cut back significantly on the resources dedicated to home care,
on therapies, on nursing hours. You know, I'm very connected
still to the pediatric medically complex community. I can tell
you you know, close friend who used to have seven
nights of nursing because she's got a medically complex child
who's got you know, intractable seizures. She's now got five
(45:43):
nights of nursing.
Speaker 3 (45:44):
So what does that mean.
Speaker 4 (45:45):
It means her and her husband share the one night
that someone has to stay up twenty four hours and
they have to stay awake. He needs constant monitoring. Let
me be really clear. This is also a child who
can't attend school because of risk of contracting COVID. So
because he's not in school, no physio, no occupational therapy,
no speech therapy, none of it because it's all delivered
(46:08):
in school, and we don't transition that to home care.
His nursing hours where his mom might have gotten respit
when he was in school. Those nursing hours are also
withdrawn because they're only school based and they're.
Speaker 3 (46:18):
Not home based. So we have major challenges with how
we structure the system to support patients and families, and
COVID has exacerbated that beyond measure.
Speaker 2 (46:30):
Wow. No, I mean I just finished an interview and
I was saying, how like COVID really puts a lens
on where our gaps are. And you know, I've been
trying to preach this as much as I can, Like,
there's a lot of areas that if we were smarter
about investing in would have, in my opinion, exponential impact,
(46:53):
like as you mentioned home care, when you could prevent
somebody from walking in our doors emergency department in a
nice cu because of the having that the level of support, Like,
that's an investment as far as I'm concerned, Okay, And
as much time as people could be at home, especially
with the complex needs, the better. And so I completely
(47:16):
hear you when it comes to these things. And I
mean and also I want to say it also you
wonder how much of that lack of home care right
now is exacerbating the ALC problem. You know, I it's
tough to know if you know, a lot of these
patients I think truly belong in long term care. But
if they did have that added level of care at home,
(47:39):
potentially some of these patients could be still at home. Wow.
It really, it truly has put a lens on where
our deficits are in healthcare. Man, Julie, like I'm cognizant
of the time, I know you are ultra busy, and
you got another meeting coming up here. It was a
(48:03):
true pleasure. You are a like a walking angel, the
work that you're doing the way you have honored Kate
and your family and impacted so many people's lives by
all the special things that you're doing and and the courage.
I want to emphasize this too to everyone that's listening.
(48:27):
This is you have to you have to have that gunction,
you have to have that drive, and it's not easy.
Every time she's having this conversation with someone like myself,
anytime she's walking into a pediatric hospital here, every time
she's hearing a story from another family that you know
(48:48):
is similar to experience that she might have experienced with Kate,
Like this is. This is hard, and so I just
want to truly commend you for the work you've done.
And it's one of the most special shows that I
must say I've had a chance to do. So I
really appreciate you taking the time.
Speaker 3 (49:09):
Like I said, I really appreciate invitation.
Speaker 4 (49:12):
I could talk with you for hours, and you know,
I appreciate the call out to you know, people who
have lived experience, who do really get involved in the
healthcare system and want to have these conversations. I don't
think I'm unique or you know, I appreciate you calling
(49:33):
me courageous. I think it's that I found a passion.
I found a place where I could honor Kate, but
I could also honor what we live through and what
I personally live through and lockstep with my daughter, but
also the background that I have both academically and professionally
in marrying up policy and seeing an opportunity to help
(49:55):
shift the system. So and I appreciate having these conversations.
You know, it's leaders like yourself who are willing to
kind of take the step and have these conversations and
push the barriers a little bit and be a bit
of a shift disruptor. So kudos to you for starting
this podcast or this this webcast and for bringing the
people that you're bringing in to have these hard conversations.
Speaker 2 (50:17):
I really appreciate that. That means a lot coming from you.
But thanks again, Julian.
Speaker 3 (50:23):
We need to talk again.
Speaker 2 (50:24):
Yeah, I think we'll be definitely doing that. Thank you
so much.
Speaker 3 (50:27):
Hey, take care.
Speaker 2 (50:28):
I want to thank our sponsors better help dot Com
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(50:51):
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(51:13):
improve our health and wellness. Check out twenty eight Day
Reboot dot co dot co. That's twenty eight Day Reboot
dot co. You want to learn more about what we
throw down, go to doctor Quadro dot ca. And lastly,
if you want to sign up for our newsletter, that's
Quadcast dot substack dot com. Quadcast dot substack dot com.
Connect with us on Twitter, Instagram, YouTube, Facebook, TikTok threads
(51:38):
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nine at gmail dot com. We'd love to hear from you.
We constantly want to improve on the show's content. Don't
be shy. I remember seeing you when spaghetti strap It
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Speaker 1 (51:56):
No radio, no problem. Stream is live on Saga nine
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