December 10, 2024 • 58 mins
Thanks for joining Hospice Nurse Penny and Halley (Hospice Social Worker) on the journey to #NormalizeDeath!
Our guest is Dr. Samantha Winemaker BSc., MD, CCFP(PC), FCFP. Dr. Winemaker is a graduate of McMaster University Medical School. She has completed residency training in Family Medicine, and fellowship training in Palliative Medicine. She is an associate clinical professor at McMaster University in the Department of Family Medicine, Division of Palliative Care. She is the co-host of the Waiting Room Revolution podcast, active educator, researcher, authour and advocate for palliative care reform.
The website is: https://www.waitingroomrevolution.com/; The podcast Waiting Room Revolution is on all podcast platforms.
Her book is Hope for the Best, Plan for the Rest, sold everywhere books are sold and is on the website as well.
TikTok: @dr.sammywinemaker
Instagram: sammy.winemaker
Thanks for joining Hospice Nurse Penny and Halley (Hospice Social Worker) on the journey to #NormalizeDeath! You can reach us at DeathHappensInsiders@gmail.com, on all places you find podcasts are found. A video option can be found on YouTube at https://www.youtube.com/@DeathHappensInsiders
Hospice Nurse Penny on the socials: @HospiceNursePenny
Halley on Instagram, TikTok, and Facebook: @HospiceHalley
Our intro music was composed by Jamie Hill (misfitstars.com)
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
No one should feel like no one's ever
done this before. People have done these things
before, and so we need to share with
people. This is how you have
a better in control
illness journey.
We may not be able to change the
illness itself,
and there's specialists to help with that, but
we can improve your illness experience. And, you
(00:23):
know, that that's worthwhile.
Welcome to the Death Happens podcast,
an insider's guide to dying. We're your insiders.
I'm hospice nurse Penny.
And I'm Hallie, hospice social worker.
(00:44):
We have a great episode for you today.
We are welcoming
doctor Sammy Winemaker,
a palliative care doctor in Canada,
and also,
one of the authors of
hope for the best plan for the rest,
which is
really one of my favorite
books right now. I I actually have just
(01:06):
ordered my third one because I keep giving
them away. I'll meet somebody who's going through
a situation,
with someone with a terminal or life limiting
condition, and I'm like, you've gotta read this
book. It is just amazing. So I'm so
excited to talk to her today. Me too.
Me too.
Well, before we get to her, let's chat
(01:28):
a little bit, about the evolution
of talking about death and dying and how
that's culturally changed, especially over the last few
years.
Yeah. It really has, especially since COVID. So
Mhmm.
I really have noticed,
when COVID came. You know? I say we
we tucked death and dying away in the
(01:50):
hospitals. It used to be in the home.
You know, grandma and grandpa that used to
die in the home with the family. It
was very normalized. They kept the body in
the house for the wakes. Mhmm. And then,
you know, with the advancement of medical technology,
people lived longer, but then they'd get to
a point where when they're sick and dying,
they need to be in the hospital to
be able to live longer, and then
(02:10):
they were dying in the hospital. So we
tucked it away. We tucked death away in
the hospital. It's funny. I was just watching
Tombstone the other day, and they you know,
this is the 18 eighties.
Yeah. And Yeah. They were showing
the procession
with the funerals and the, you know, the
people
displayed the coffins just out in the street.
And, like, that wasn't that long ago. And
(02:32):
then we went to, like, you're talking about
this into the hospital, tuck it away, don't
look at it, don't talk about it.
Right. Until COVID.
Yeah. I mean and then everybody's like, it's
in our face. People are dying
every day. Probably started a little bit before
COVID as far as we're starting that transition,
(02:52):
but, like, hospice been around for, you know,
40 years. And so that's baby steps started
the transition of talking about it. But I
think you're right. COVID really smacked us in
the face with it on top of social
media coming at the same time at TikTok
specifically.
Right. And I mean yeah. So the implementation
of the hospice Medicare hospice benefit happened in,
(03:14):
like, what, 1980
2. Right? Something Yeah. Something in the US.
In Yeah. In the US. Yeah. So, yeah,
it it did start to
start to resurface again.
Mhmm. But it wasn't really,
like, public
knowledge. You you really only knew about it
more if you were
(03:34):
involved in it in some way. And and
even I remember
as a teenager,
I was probably 17
years old.
1980
something. 9 1980. No. 19
Yeah. 1980.
So I was like 17 and 1980.
(03:55):
And my mom told me
that she knew somebody that was volunteering
for hospice,
and I didn't know what that meant.
Mhmm. What's hospice?
Yeah. What's what's that? I had no idea,
and my mom couldn't even really
describe it to me either. Right? It's about
people dying. That's, you know, that's what it
(04:16):
was. So it was, like,
people
knew about it if they were really involved
in it. But other than that, it wasn't
really out there that much. But it it
was COVID that that really kind of started
to bring the topic of death and dying
more to the forefront. For sure. It's on
the news, man. We're seeing refrigerator trucks packed
(04:37):
outside of Yeah. Parked outside of hospitals,
packed with people who died from COVID.
You know, we're just hearing a lot more
about it. And, also, you know, the technology
advanced too where social media became this thing
that is easily
attainable
Mhmm.
And consumable.
Yeah. Yeah.
(04:57):
It's easier to Facebook's been around for for
a long time,
but it wasn't the
you
know, little videos that you can watch and
go, oh,
there's a one minute video about, you know,
people dying in the hospital. Instagram didn't quite
have the same
No. Zhuzh, if you will.
Yeah. The reels weren't around yet. So yeah.
(05:19):
But then just check-in COVID brought you
brought all of us to you and you
to all of us,
miss OG.
Yeah. I guess you could say.
But yeah. And I mean, it's it's
fantastic. You know? I I really feel like,
I can see through my TikTok
(05:41):
and my Instagram and my YouTube and on
Facebook.
How many people change yourself.
You're doing a lot out there.
How many people are
really wanting to to know more about death
and dying? Mhmm. You know? I wonder how
much of that is autonomy based. Like, the
more you know, the more you can plan,
(06:03):
the more you can have control over it.
And we can't control that we're gonna die,
but we can have control over how we're
gonna live before that.
Well, I I think a lot of it
is autonomy based. And and also
because I and the other social media hospice
people like you also,
are talking to people about things that they
(06:23):
probably haven't thought about. Like and and on
this like, in the simplest
ways, like,
denying somebody,
alcoholic beverage when they're dying or
or pain medication if they're uncomfortable. And, you
know, and I make these videos about,
people like well, I recently did one about
family members not wanting, and it's a it's,
(06:43):
like, literally less than 15 seconds long. It's
just the words on the screen, and I'm
lip synching or something like that. And it's
about family member doesn't want a person to
have morphine because they're afraid they'll get addicted.
And how many people in my comment section
are like,
what? That's crazy.
And they probably never
have thought about that before. Right.
Exactly.
(07:04):
And so they do have like this idea.
Well, that's not what I want.
You know? So how much more do I
need to know about this just so that
I can
Yes. And that is why I am so
thrilled to talk to Sammy today because
her book is exactly what we've been talking
about, but further upstream, which is even better.
(07:25):
Yes. Yeah.
Yeah. I am very excited to talk to
her today. I think it's gonna be a
wonderful
episode.
I agree.
Well, let's do it. Let's do it.
Welcome, doctor Sammy. We're so happy to finally
have you on. I am Welcome.
Thank you so much for having me. I'm
(07:46):
so excited.
Oh, it's absolutely our honor. We are super
excited to talk more about your book, your
podcast, all the things. Tell us about yourself.
Okay. Well, it all started in 1970
when I was
born.
Now let's skip forward.
I've been in practice
(08:07):
as a palliative care physician for about 20
years. And
I work in people's homes. So,
I feel very,
privileged to work in people's homes and feel
like I have developed a whole different skill
set that my colleagues,
will never develop because
(08:27):
they haven't trained in this amazing
care setting called the community
and in people's homes. So
that's what I do. I'm part of an
outreach team and,
I go into houses every day caring for
people,
at the end of their illness.
And And I'm sure our listening listeners are
hearing that little bit of an accent. You're
(08:49):
up in Canada. Yes? Oh, did you hear
an accent? Did I say out and about?
Oh, you you have an accent. You have
an accent. Really? Oh, yeah. Okay. Oh, yeah.
Just, do you see a boat? A boat.
Oh, yeah.
A boat. Yeah. Or if I say sorry,
I think that's the other. Sorry. Yes. Yeah.
(09:09):
Yeah. So so to clarify, because in Canada,
palliative care is really what we call hospice.
Yeah. It's all mushed together in Canada. We
don't separate them. And when we refer to
hospice Which I love. Yeah, when we refer
to hospice in Canada, it is more a
bricks and mortar
place where people can go to die in
the last 3 months of life. And they
(09:31):
also have,
you know, day programs and some outreach programs,
but,
palliative care, you know, encompasses hospice. It's all
mushed.
We need to learn from Canada. Yes, we
do. The irony is people think that sometimes
that's what they think hospice is down in
(09:51):
America. Mhmm. And a place. Yeah. And then
most of us do not have access to
hospice care centers like Penny used to work
in. Mhmm. Mhmm.
Yeah. Well,
anyway, so that's what I do. And,
yeah, amongst other things that I've gotten myself
involved in in the last little while, which
maybe we'll talk about. Yes. Yeah. Oh, oh,
(10:13):
we're jumping right in
because all over this book. So your book,
hope for the best,
plan for the rest. I think this is
Penny and I's mantra.
Mhmm.
And absolutely, you guys, you and if I'm
saying this correctly, doctor.
You're perfect. I can't believe it. I've been
practicing. Wow.
(10:35):
Perfect.
So you and he have been working on
this also in it sounds kind of in
conjunction with your podcast.
Yeah. Because I did cheat a little bit
and listened to the first couple episodes,
which basically encompass the the book chapters, which
I thought was a great companion Mhmm. To
the book.
Love them both. So can you tell us
(10:56):
a little bit about how you 2 came
together?
Before you do, I wanna say something about
that title. I
really like the title because hope for the
best, plan for the rest
sounds so much better than hope for the
best, plan for the worst. Yeah. Because right
off the bat when you say that the
worst, it's like Yeah. It's putting this negative,
(11:17):
you know, connotation
to to death and and dying. And so
I'd love
it's catchy, and I also love the fact
that it doesn't like further stigmatize
end of life care. So Yeah. Yeah. Just
wanna say that.
Great point. And there was method to our
madness too because,
we wanted this information
(11:38):
to be offered to people as early as
possible in their illness journey.
And so what we couldn't do is try
to sell them something that was scary because
there's no readiness for that right at the
beginning, right? So we wanted the book to
look
pleasing and approachable,
and the title had to be full of
(11:59):
hope. And we needed people to buy it.
If I had written something that was,
you know, like I said to my sister
one day, I'm going to write a book
What to Expect When You're Dying, just like
What to Expect When You're Expecting, you know,
that book that pregnant women read.
The worry was that no one would pick
it up early in their illness, right? So
(12:20):
hope for the best plan for the rest
is something we thought people wouldn't feel uncomfortable
giving the book to people when they don't
know what else to do when someone's diagnosed.
So,
it's positioned early. I think that's
the difference
between this book and maybe some other books.
But how did we get together, Sienna and
I? Well, if I'm Well, before Yeah. Before
(12:40):
you even say that, I mean, now that
you're saying it, as I'm hearing you say
it, it it's
truly
transformational
as this is coming out. We were just
talking before you were on about how death
talking about death, normalizing death, the culture shift
between the decades and the centuries even and
how it's starting to come back into,
(13:02):
favor in
the world at large, if you will.
But it's not normalized quite yet. And this
book, like you were saying, I think in
your podcast and even in the book, that
if you're just teaching physicians, it's gonna take
too long to get to the public.
So I love your focus upstream.
Yeah. Okay. Well, that's a good segue into
(13:23):
how Sienna and I got so frustrated,
so frustrated in our careers. Like, both of
us wanted to just pack it in because
we had spent, like, very, very many years
trying to change the culture
of health care from, you know, behind the
curtains.
And,
that's
all very important, but not moving fast enough.
(13:44):
So we just got fed up, honestly.
He did not wanna do more research in
the same and I didn't wanna see the
same stories over and over again. So, we
decided to do something. I think that was
brave at the time and, you know, leapfrog
over healthcare providers and just go straight to
the public.
And, you know, when you're a doctor,
(14:06):
you of course belong to a college just
like nurses belong to a college and, you
know, we're all very mindful of the institutions
and the leadership roles that we have and
that stuff can be very silencing.
And I was
naive enough not to look too deeply into
it when we decided to go public facing.
And
I'm grateful that I didn't because had I
(14:28):
probably read up on what one is supposed
to and not supposed to do
in this profession, I probably would have been
inundated.
But,
anyway, yeah. So we decided to go, you
know, straight to the public, like many others
have had including you guys. I mean,
but for me, it was very new and
(14:48):
same with CN and we had a huge
learning curve, how to take
our skill set and offer it
in a different vibe
at a different
entry point in the illness journey
with a language that was going to be
acceptable to people.
And,
yeah. And so that's what we did.
(15:09):
And we're still learning. We were
yeah. Yeah. We were just talking, with another
interviewee,
Cody, and talking about the way that you
frame hope
and how you reframe it as the journey
goes along that there's never a time when
you don't have hope. It's just what you
hope for.
Yeah. I don't think I made that up,
(15:29):
but
people like it.
But, yeah, no, it's true.
You know, I guess I like to think
of the difference between a wish and a
hope, right? And a wish is something that
can be anything and it doesn't have to
be realistic. Just like I wish,
you know, I was a billionaire and I
wish,
you know,
(15:50):
no one was fighting in this world right
now. But a hope has to be more
grounded in reality.
And
the good news is, is that we can
still have hope no matter what stage we're
at of an illness journey, right? It just
has to change its color,
like a rain like a rainbow. Right? And
(16:11):
we can only do that naturally if we
have the scaffolding
of reality
that helps our hope shift
from hope that they got the wrong person
with this diagnosis,
fast forward down the road
to hope that
I have
reconciliation
with my family
(16:32):
before I die or hope that,
you know, I'm going to have little symptom
burden, hope that my family lives on and
takes care of each other. I mean, hope
is hope is hope. It can stay high,
but it can't be
mismatched
to where you're at in your illness. That's
when we get in trouble. If you're still
hoping for a cure, and you're bedridden,
(16:54):
at the end
of an illness,
we've got some explaining to do.
Yes.
Yeah.
Definitely.
I feel that so hard. I can't believe
how many people come to hospice, and I'm
pending I'm sure you've had this happen
where
you're doing your intake form, and they don't
(17:15):
nobody's even told them they have 6 months
or less. Oh. Mhmm. Like, they they haven't
had any conversation before. Yeah. It has happened.
And and speaking of that, Sammy,
what is the,
requirement for palliative care slash hospice in Canada,
with respect to diagnosis
and prognosis.
Yeah. I mean, don't you wish that I
(17:35):
could just give you a simple answer to
all these things, but it's not so simple.
So, I mean,
there are criteria
for services
that are different than
the
criteria for
receiving the care, right? So, if we're talking
about a philosophy
of palliative care, a palliative approach,
(17:58):
Really, anyone who's facing
a life limiting illness
deserves a palliative approach
peppered into their illness journey from the time
of diagnosis.
And that should be delivered by any doctor
and any nurse because we've trained them properly
and they just do it as the natural
part of their skill set.
Now, to qualify for a palliative care team
(18:20):
or doctor or nurse in the hospital or
any other care setting,
There
really isn't any criteria.
What happens though is that we tend to
be
the transfer of care team
that people pass the baton to very late
(18:40):
in the illness, and we're overly synonymous with
end of life care
in Canada.
Even though we've tried to market ourselves as
a helpful consult service
at any point along the illness journey.
We are still living in an old fashioned
healthcare system here where the baton is passed
(19:01):
and it keeps getting passed until they pass
it to the cleanup committee, the palliative care
specialty teams,
which
helps to stitch a person back together
to feel like
a whole person again right before they die.
When they've been reduced
to an organ, a diagnosis, a room number,
(19:22):
dismembered in many ways.
And once we catch them too late,
we try to put them back together and
then
off they go.
We have a problematic
definition of palliative care and people's understanding of
palliative care. It's usually over synonymous with cancer,
over synonymous with only elderly people, over synonymous
(19:45):
with end of life care, over synonymous with
hospital settings only.
And so I think we probably struggle the
same
type of problems, you know, across our borders.
Yeah. I would I mean, everything you just
said, it's like, oh, yeah, that sounds like
hospice. Yeah. That's exactly,
you know. So so here we are thinking,
(20:05):
yay. You guys have the right model. You've
got palliative and hospice. It's all one thing.
Yeah. And for us, it's it's the same
thing. People are referred too late. Mhmm. You
know? They're
it's it's the last, you know,
the last ditch effort to
to try to do something with them before
their death, and it's almost
I mean, it's often too late. So it's
(20:27):
it's so interesting. And so
do they in the US, they have
to stop curative treatment
in order to be on hospice.
So in order for the palliative team to
take over, which is what I kinda hear
as the hospice part of palliative care for
you guys. Mhmm.
(20:49):
Can they still seek treatment up until their
time of death? Or is there a point
where in order to qualify for your services,
they have to stop that treatment like they
do in the US?
So to have a palliative care service involved
in the hospital or at home, I'm part
of an outreach program, that is not one
of the criteria.
(21:09):
And you don't have to be and allow
natural death or DNR.
You can receive
palliative care
alongside,
you know, other disease modifying
treatments.
To go into a hospice in the last
3 months of life, you must be an
allow natural death or a do not resuscitate.
(21:32):
But if someone is in one of our
hospices
and they require radiation for pain management,
that's no problem, or they require a transfusion
because it's helped with their quality of life,
they can still
go to the hospital and get one. Or
if they need, you know, a venting PEG
(21:52):
tube or
BiPAP for comfort. They can still have those
types of
treatments.
Even
we've had people
with a feeding tube or
with come in with TPN
when the goals of care are though that
they understand there'll be a time where these
things will be discontinued. But we try very
(22:14):
hard to send a message that it's not,
you have to give up this
and roll over
and die and not receive any other
treatments.
These things can
coincide together.
And I think that is the right way
to go. I think the reason why it's
separated in the states is probably because of
(22:35):
funding.
It's not philosophy, it's funding. Well, yeah. That's
true.
We we do also allow
certain treatment
like you're saying Mhmm. Radiation to decrease tumor
bulk.
Yeah. Tube feeding. We don't typically do TPN,
but, you know, that type of thing
can be done as long as the like
(22:56):
you say, it's sort of the goals of
care. It's not to prolong life,
It's
to prolong comfort Mhmm. Prevent suffering. So we
can do those things in hospice.
One thing I really, really wish we had
that you have there is the hospice care
center for people because that is a
(23:16):
huge area
in our in in the US
that's it's it's lacking and caregivers
the burden of caregiving for our dying people
is on their family.
Yeah. And it's it's
so hard for them. So that's Broken on
every level. Well, can I can I be
(23:37):
honest with you?
Is that okay? I'm probably gonna get myself
in trouble, which is won't be new, but,
you
know, so we have these amazing
stunning beautiful
bricks and mortar hospices,
okay.
And there's probably
not every community has one, but those that
do usually have a 6 to 10 bed
(24:01):
unit, let's just say. Usually tucked in some
beautiful residential area and the rooms are stunning.
It's like being in a hotel. It's usually
nicer than any of our homes and they
get beautiful care.
But I will tell you that most of
the people that land in our hospices are
people with cancer.
That it is very inequitable when it comes
(24:21):
to identifying
other non cancer diagnoses and when they're in
their last 3 months of life.
So it becomes inequitable. And then the other
thing is,
you know, there is so much money that
goes into those 10 bed hospices
for Cadillac
care.
(24:41):
And that money could probably be used for
respite in people's homes.
More people could get
a Ford model car in their home
instead of 10 people getting a Cadillac
in a hospice.
I'm telling you, like,
I I find it,
(25:02):
disconcerting
that home care is so lacking,
but then we have a 10 bed hospice
that is like
for Hollywood movie stars.
The difference is so
unbelievable.
And if we just gave people in the
home
some respite blocks, like, you know, a personal
(25:22):
support worker or volunteer
or nursing hours to offload the family for
a couple of hours a couple times a
week, that might make the difference between someone
being able to stay home or not. So
I think that hospices make
communities feel secure.
They make politicians with the ribbon cutting
feel wonderful, and
(25:45):
donators love sending money to the hospice, but
they do not meet the needs of a
community.
You're speaking my language. Yeah. And and
it's kinda sounds like our hospice care center
is here too in a way. And,
you know, I can see where it would
be more challenging
(26:05):
to have that 3 month prognosis
if you're not if you're talking about a
noncancer diagnosis because then we're looking at
COPD,
dementia,
ALS
Mhmm. Cardiac disease. These things that are so
much more challenging to prognosticate.
Mhmm. You know, you can't it's harder to
get into that 3 month window. It's hard
(26:27):
to get into the 6 month window Mhmm.
You know, for hospice here.
But getting into a 3 month is even
more challenging. And so I guess, you know,
there are some things that we have that
are are probably a little
maybe a little better, like the respite benefit
that we do have, but then it's not
it's not in home respite. Mhmm. It's it's
(26:47):
trying to find a nursing home that you
can put them in. Right. And then you
are taking them out of their home to
do this. Yeah.
So yeah. That that presents a whole other
list of problems trying to pull someone out
of their home. Yeah. Yeah. Even if it's
for a real
needed respite break. Yeah. Yeah. Well, even just
finding a bed Yeah. Exactly. In a nursing
(27:08):
home more Yeah. Can be hard. It it's,
it's near impossible here.
So, yeah, we still have such
a broken system and this is why we
are trying to, with our work, prepare
people to become patients and prepare families to
become caregivers
and managers,
of their
(27:29):
illness.
Because if we can give them these skills
and information
and the reality of it all, what this
is gonna look like right from the get
go, they may have a fighting chance not
to find themselves
further along in the illness feeling very overwhelmed
and burnt out.
Proactive care is really the only way to
go. Right? Instead of being Yeah. Reactive
(27:52):
to everything. Reactive.
Yes. Yes. And none of this is new.
Like, we we we have the benefit of
seeing so many patterns, right? Like pattern recognition
is our best friend.
No one should feel like
no one's ever done this before. People have
done these things before, and so we need
to share with people,
you know, this is how you have
(28:13):
a better in control
illness journey.
We may not be able to change the
illness itself.
And, you know, there's specialists to help with
that, but we can improve your illness experience.
And,
you know, that that's worthwhile.
Well, I'm teaching people to be their own
advocates. Yeah. And I love you.
(28:35):
You say if that person is not ready
to have the conversation,
I love you so much.
Now you're you're talking to other people
in your group. Right? Like, one of you
should be willing to have that conversation.
So when you're ready, you know what's coming.
Yeah. Just like if one person can have
their eyes wide open, we're good. Mhmm. Let's
(28:57):
be realistic here. It's just like, you know,
realistic with our hospices. Like, we're giving 10
people
Rolls Royce Care is not gonna be the
answer when there are thousands of people in
the middle and at the end of their
illness at people's homes. So,
yeah, it's a little bit for everyone is
better than all of it for one person,
(29:18):
right?
Mhmm. Yes.
So What brought you to in home palliative
care versus hospital or any other model you
have up there? Nurses did. So when I
was a medical student, I don't know how
I stumbled upon
creating an elective for myself where I hung
out with a visiting nurse in the communities.
(29:41):
Someone must have told me to do that
and it wasn't part of our mandatory curriculum,
but I was absolutely
hooked and amazed.
You know, this nurse who was a palliative
care, you would call them a hospice visiting
nurse, you know, did the kind of work
that you guys do. And we went from
a fancy
(30:01):
house, you know, in a really affluent area.
A woman was in her bed with jazz
music and a fluffy duvet
and a white gown and
a fireplace in her bedroom.
And
we then went to another part of town
where it was in a more of a
(30:22):
rural area, a little bit of a farming
community where
a husband was taking care of his wife
on a mattress.
There were flies everywhere.
And, you know, I remember saying to her,
oh, we have to do something about this.
Like, this is not acceptable. And, you know,
she was explaining to me that a home
is a home is a home. And
(30:44):
that is not what,
is the deciding factor of who will pull
this off at home and who won't. And
sure enough- That's so true. Yeah, I later
learned that the woman
with the jazz music
ended up having to go to the hospital
because her family who were plentiful just could
not manage it.
They were not coping.
(31:06):
But the one elderly guy taking care of
his wife on the mattress
with the flies in the basically a barn
died in her barn,
which is where they live. And so
I I just thought it was the most
creative,
off roading,
artistic,
crazily
(31:26):
interesting,
if that's a word,
place to work. And I just
never wanted to work anywhere else. And I
still feel that way.
I love it. There's not a day
that I don't learn something new.
Every single patient, every home, every family throws
us
(31:46):
a challenge. And
I just love it. And I'm amazed at
what people do when they're not interfacing with
the healthcare system. I'm amazed what they pull
off at home.
It's incredible.
Mhmm.
Yeah. The resilience
of folks that
haven't had any other choice but to be
(32:07):
resilient. Yeah.
They are their own OTs, PTs, dietitians,
nurses, doctors, pharmacists,
rec therapists.
They're everything.
And they're treated like nothing in every other
healthcare system. Oh, thanks so much for driving
your loved one to this appointment
as a nice
(32:28):
chauffeur. No, no, I'm sorry. That is more
than a chauffeur, I tell you.
And I know when I leave a home
that the plan has to have been hatched
with the family, my care team,
and it has to be negotiated from what
is the standard in the hospital to what
is acceptable and doable and realistic in this
(32:48):
person's home. And that's very
creative and exciting, right? So
I don't know. The MacGyver. Yeah. The MacGyver.
We're we're we're the MacGyvers. Yeah. I mean,
that's what I also
loved about it. And and I started in
inpatient care, but we still had to
be very
ingenious with some of our
(33:10):
things that we did for wounds and, you
know, because,
you know, we see wounds in hospice that
you can't even imagine. They're not in textbooks.
You don't know what to do with them,
and you gotta MacGyver things. Yeah. But, the
other thing too about how,
you know, you were saying when they go
to the doctor, they're considered the chauffeur. Right?
(33:30):
Thanks for bringing them here Yeah. Without any
consideration to what they've been doing at home,
but also
being dismissed when they say that something's wrong.
Yeah. Right. Absolutely. And they're with that person
all of the time. And the doctor's like,
I look fine to me. You know? Yeah.
I've been here for 20 minutes and she
looks fantastic. What are you talking about? You
know? And and there's another kind of thing
(33:52):
that that happens is when they're just dismissed,
and told stop Googling. Stop Googling.
You know?
It's horrible. It's really we we really do
not know how to truly
incorporate
families into,
you know,
the health care at all,
or to incorporate us into their care. I
(34:13):
mean, we have as tokens on patient advisory
and family advisory committees and things like that.
And they barely get a say in those
committees. But on an individual basis, we have
really very little training on how to care
for people as a unit of care, right?
And what that really means. Yes. Unless you've
worked in the home environment where you you
(34:34):
really have no choice. You walk in the
door, you're on their turf.
This is their home,
and you are a guest. And there's no
white coat. There's no,
you know, fancy language. We just
we have to be real in people's homes.
So,
yeah, I think it's made it easier for
(34:55):
me to speak to the public because I've
never been fanciful in the way that I
talk. So
I don't know. Well, I think part of
it too is and and why we're probably
better at
including the family
in our
provision of health care in hospice and palliative
care both there and here is well, I
(35:17):
don't know what it's like there, but for
here, for us, we have interdisciplinary
care. So our palliative care in our hospice
is interdisciplinary
care teams. And part of that care team
is
the patient
and their family. They're considered a part of
that interdisciplinary
team.
There aren't any other models of health care
in the US where there is an interdisciplinary
(35:39):
team.
It's
your internist. It's your oncologist.
It's your OBGYN.
It's your there's there they don't
collaborate,
you know, in normal
health care.
Yeah. But in palliative and and,
and so that's where I think the the
family gets to be more involved because we
recognize them as a part of the team.
(36:00):
Yeah. I I think we do also again
in palliative care, but again, it's like too
little too late. A person may have had
their ALS for already, you know, four and
a half years by the time you catch
them. And so
I love what we do, don't get me
wrong, we meaning the 3 of us and
whoever else works in hospice or palliative care,
but
(36:20):
we
are providing this incredible
service at the 11th hour
after people have already become
almost like on a conveyor belt of a
factory.
And just before they fall off the cliff,
we we catch them. I hate I'm a
little bit cynical today for some reason. I
don't know why.
(36:41):
I'm sorry.
I'm not a real hoot today, but I
just That's a problem. We're gonna bring it
back to hope because I do wanna talk
about the 8 seasons of your podcast Yeah.
Waiting room Which is
waiting room revolution,
which is also
appropriately
named. Yeah. Yeah. Thank you.
And that's also with doctor Ciel. So
(37:04):
Yep. Again, tell tell us a bit about
how that came about
or was it in conjunction with the book?
It was in conjunction and we had Penny
on as a guest, which was awesome. Yeah,
so the podcast started first and neither of
us had ever
even listened to a podcast, let alone tried
to make a podcast.
(37:25):
So
it was very new for us
and low budget, let's just say.
And it was just a way to talk
out what we were thinking with different guests
and different stories. And we were able to
elaborate on some of our thoughts. And then
the book came afterwards.
So really, the podcast was just a way
to, you know, during COVID
(37:47):
to continue the work that we were thinking
about. And,
you know, we have to try to
be accessible to all different generations, right? So
I'm a certain generation,
and there are generations who just lap up
podcasts and others who like social media and
others who want a physical book and others
(38:07):
who want, you know, whatever.
So this is as part of a social
movement where we're trying to light a fire
in the community, in the public, and, you
know, create an absolute groundswell
of people who are gonna come to the
health care system with a new mojo.
And
that we're hoping is going to force the
(38:28):
system to have to say,
okay, we can't really just be the same
as we always have been. We need to
respond to this new
activated patient and family.
So, yeah, so it's it they're all all
these things are part of our social movement,
which we're hoping at some point
is less about CN and me and
(38:49):
more and it's already happening. We're getting signals
now that
other people in other countries
are taking our work and running with it
and adapting it. And yeah, it's great. We've
had people from the UK and Australia and
Tasmania
and in the US
doing different things,
and asking permission. Can I just adapt that
(39:10):
and change it a little bit for, you
know, this indigenous
group or, you know, so those are really
positive
signs? And
we have a workbook coming out because people
who read our book said, do you have
a course?
Do you have a workbook? So we've just
finished writing our workbook and it'll be,
I'll send you guys the advanced reading copy.
(39:31):
It'll be out in November, but the actual
workbook will be out in March,
and it goes even deeper
into sort of the practical
skills to help a patient and family
be in the know and feel like their
own individual
unique
person
throughout their entire illness and
(39:54):
push against
in in the most respectful way, becoming
a cog in a wheel or a widget
on a conveyor belt.
And so hopefully, when the 3 of us
are meeting patients in the future,
if our social movement goes well,
we won't be spending so much time untangling
them, and we can really spend the time
(40:16):
doing what makes most sense with them. Right?
And what they want it to be.
I was just gonna say, I mean, doctor
Sami, just even from reading this and listening
so
far, it's already made me think of different
ways to talk to my families
as we're still in this space. And like
you said, I'm hopeful that down the road,
(40:36):
it won't be so much of that, and
we can really spend time on focusing on
that quality of life. Yeah. Oh, that's really
wonderful.
I'm sure you're incredible at what you do,
both of you. Thank you. You know, this
is the best part of going public is,
you know, meeting people. Like, when we went
on social media,
I was shocked that all of this was
(40:58):
happening behind my back. You know, I couldn't
believe it. And
you guys are early adopters. Like, I was
so late to the game and I still
have no idea what I'm doing. Thank you
for your tips, Penny. I have, like, no
skill in this department. I just whatever.
But,
me Don't worry. OG helped me too. I
was new. I was new at posting, so,
(41:20):
yes, she's very helpful. You know, I I
was so interested in in your book, Penny,
if I could mention that, when you said,
you know, way back when before social media,
you
were, you know, developing web pages and on
on the Internet trying to, like, rally people
together. I won't I won't
it
this won't be as
a I won't spoil your book. But, like,
(41:40):
really,
you are the OG.
Really the OG.
Honestly.
Yeah. I always say to anybody who uses
GoFundMe,
you're welcome because
I I was
one of literally one of the first, what
they called Internet panhandlers
Yeah. Asking for money on the Internet
(42:02):
for a very good cause Incredible.
Before,
before GoFundMe was even around. And Facebook wasn't
around. None of that was around. You know?
I was highly criticized for it. But yeah.
Yeah. I've just I I think just kinda
like with you and doctor Siau, you know,
like, recognizing that that there's a lot of
(42:22):
strength in numbers socially. Right? Like Yes. In
our peer groups
that,
we can get a lot accomplished probably more
than politicians can.
If we rally around, you know,
each other and Yeah. And try to
Both to each other. Movements. Yeah. You know
what? Honestly,
(42:42):
I'm I think I've been surprised
delightfully surprised by the support that everyone gives
each other
while we're doing this public facing stuff because
I think in the hospital and other care
settings and amongst colleagues, it's not
it's not as supportive.
And,
yeah, I just have been
really touched by people's willingness to share what's
(43:05):
working, what's not working, try this, don't try
that.
It's it's amazing. There's so much
space for everyone.
Well, I think it's because those of us
who do put ourselves out there on,
you know, on the interwebs, on social media,
are
really
(43:26):
committed to advocacy.
We're passionate. I mean, that's what got me.
I didn't try to go on social media
to to become, like, TikTok famous. Mhmm.
I mean, originally, I just went on there
to learn how to shuffle dance as I
said before. I
I didn't. I never did.
But, you know, once I I've always been
a passionate advocate for hospice and great quality
(43:48):
end of life care since I became a
hospice nurse. And once I realized that there
were the public wanted to know more,
I was like, oh my god. You know,
I have this opportunity to bring my
experience and my knowledge and my expertise
to the public at a grassroots level, and
how cool is that? So I think that's
(44:09):
why we support each other so much is
we're kinda all in it for the same
reason. You know? It's not about, like,
trying to become a star.
It's it's really about
the mission, like,
that we're we're really trying to to to
change
health care Yeah. For the better,
for everyone.
(44:30):
Speaking about networking and advocacy, can we just
talk about your BFF, doctor Faith Banks for
a second? Oh, did you have her on
your
yeah. Yeah. Bless.
Yeah. Yeah. Okay. So
Faith
so, yeah, a palliative
veterinarian,
I guess. Mhmm. Amazing. I don't know if
she told you. We're high school buddies,
(44:51):
And we were in Yes, she told us.
Yeah, in class together.
And she always said she was gonna be
a vet, and
she was sort of a sure thing. And
I always said I was gonna be a
doctor, and I was a real long shot.
I don't know if
just to make you guys
feel better in whatever way this does. But,
(45:12):
I was a high school dropout, to be
honest with you. That's a that's Really?
Yeah.
So I think this is the first time
I've shared I've shared that on any podcast,
but I think, Penny, you made
me feel more brave to talk about
stuff that maybe is in the closet.
And you should. And you should because,
you know, I so I talk I've talked
(45:33):
a lot about my my past history with
legal problems, going to jail, drug addiction, alcohol
abuse,
and not becoming a nurse until I was
40 years old. So
people are really inspired by that type of
thing. You should be talking about that, that
you were a high school dropout and you
became a doctor. That's amazing. Just kidding.
(45:54):
Back to back to doctor Faith Banks. Yeah.
So
she and I had drifted for a while,
just because life takes you that way. And
it wasn't until I went on Instagram
almost like I had been
so I moved out of the city that
I grew up in, which was a little
bit of a suffocating
kind of community in a way,
(46:16):
you know. But anyway,
disappeared for decades
probably because I wasn't so proud of dropping
out and that wasn't customary where I came
from and whatever life went on.
And decades later,
so no one had heard or seen anything
about me since I was about like 19.
(46:37):
And then when I'm
50
or 52
reappear on
Instagram,
it was like a shocking
As a doctor,
as a doctor no less. Yeah. It was
sort of a shocking coming out in a
way. And, I reconnected with lots of people,
including Faith, and then she became very interested
(46:59):
in and and I was inspired by people
like you guys, and then I guess I
inspired her, and it's sort of like a
domino effect. Right? And,
yeah, she's really cool, and she's got such
a cool practice.
Yeah. Yeah. Yeah. She does. She is cool.
I I like her a lot. To it,
doctor Sami. I think we all inspire each
(47:19):
other to continue
Mhmm. This work, this advocacy,
connecting to each other networking. I mean, it
just growing and growing.
I know there should be a conference.
There should be like,
a conference for people like us. I don't
know what you would
call it.
But anyway, where we could all convene. Death
influencers.
Death the death influencers.
(47:41):
Conference.
Yeah. Why don't you guys start a conference
while you're doing this podcast?
What happens?
Sure. We'll get right on that. It has
to be in
Washington because I don't fly. Ally doesn't fly.
So Oh, hang on.
You know what? I didn't fly either. But
if you write a book and you wanna
(48:01):
go on book tours, you have to fly.
I've got a secret recipe for flying. If
you ever want to contact me, I'm telling
you, I have a secret recipe. I want
to I'm open to it. Nothing I have
tried has worked so far. So Really? Does
it involve Benzodiazepines?
Yes. I'm not saying. My my trial has.
Maybe there's a little,
(48:23):
recipe I'll tell you about offline, but
Excellent.
I'm I'm here for it. I'm here for
it. I wanna make sure we're honoring your
time. We have just a few questions left.
Our new season 2 question we're gonna ask
everyone is our coffin question. Okay. What would
you like to have done with your body
when you die?
Okay.
(48:49):
Oh, that's a good one.
Well
I can't believe you have to think about
this. How do you not know? I know.
You're crazy?
No.
That's the point. It's not crazy. Okay. So
I It's not crazy. Okay. If I could
if I could have a okay. So there
was a time where I thought I was
(49:10):
going to be a marine biologist
and I was a scuba instructor. Okay. That
was in the high school dropout days. But
anyway,
so
one idea I had was being, you know,
cremated and sprinkled in the ocean.
But I don't know if you know this.
I'm Jewish and Jewish people don't usually get
(49:31):
cremated. So I would have to be dismembered
and thrown into the ocean. And I think
that that would not be good. So there
goes that idea. And then, you know
so I think I'll be buried
whole, and I think that I I will
make sure that I'm not buried in anything
fancy.
So I don't want money spent on a
(49:52):
fancy like, a pine box is fine,
and my family can write
inscribe things on the box with them. Maybe
I'll have grandchildren at the time. They can
color on my coffin and
you know what? And plant me
under a tree,
you know, maybe a nice big willow tree.
And that's about it. I love it.
(50:13):
I really don't worry about that part at
all.
I don't really worry about any of it,
but I spend so much time thinking about
dying
that the dead part
seems pretty straightforward to me.
No. No.
I don't think that's unusual.
I'm sorry. I don't have a better answer
than that. I I think for a lot
(50:34):
of us, it it just doesn't matter. They're
just like, oh, we're dead. Do whatever. But
I think I think that who it's important
for is who we leave behind. Yes. Exactly.
Like, they can decide that they they can
have whatever
whatever. But they're gonna wanna know, though. They're
gonna be like, what she would what would
she although I will say, I recently had
Or at least what you don't want. That's
(50:54):
important.
Yeah.
Well, I recently had a conversation with my
sister and I told her that I wanted
to be body composted.
Oh. And she said, well, it it doesn't
matter
what you want because,
like, she doesn't like the she's she it
was clear to me that she thinks that's
very off putting. And she said, well, you're
not gonna be the one making decisions, so
(51:15):
you can want whatever you want.
Oh. That was like, okay. Well, so my
husband will be making the decision. He knows
what I want. Well, he might not go
along with it either. She said, well, he
better.
And then I said, Anne, you're if he's
not around anymore, you're my second.
Yeah. So are you telling me I can't
trust you to make decisions?
(51:35):
Because for me, it's it's really not like
I'm not concerned about
what happens to me. I'm concerned about the
environment because I have grandchildren. Yeah. And I
don't I I don't wanna be cremated. I
don't wanna have chemicals put in my body.
I don't wanna take up space in a
funeral home. And so that's what it is
all about for me. But I was just
like, wait a minute. You are my second
(51:57):
decision maker. So what are you telling me
here? You're gonna have to Doesn't matter what
you want.
You're gonna have to beg Hallie to be
your appointed decision maker. That's
a good idea. Yeah. Well, it's a little
tricky. We'll talk about that, miss.
Maybe another episode, we can talk about how
(52:18):
decision making works when you're alive versus when
you're dead. Oh, right. That's true. You're right.
Okay. Maker after you die.
That's right. It's your your POA. Yeah.
Yeah. Yeah. Stop being your decision maker when
you die. Mhmm. It's a whole other episode.
Yes. Yes. It really is.
Well, thank you for being here. Where can
(52:39):
people find you in the world? We've talked
a little bit about your book, but you
let us know. And all the details And
is there anything else that, we haven't covered
that you wanna talk about? Yes.
Nope. I think you covered it all. I'm
definitely really,
I'm really so excited that both of you
have read the book. We're hoping that people
(52:59):
in the US
think it's as helpful as people have in
Canada.
We try to make it non
country specific.
And so we're hearing from other countries that
it is helpful. And so
and I'm hearing from you guys that you
enjoyed the book. So that's wonderful.
No. I think that we're all part of
the same
(53:20):
broad movement, and I'm just
so tickled pink to have met
both of you and you now, Hallie.
And I'm
we're just part of one community now, and
you can just find me by just googling
my name, I guess.
Yeah.
Well, on on TikTok, you're
(53:42):
doctor
Yeah. Sammy Winemaker.
Honestly, I haven't been posting on TikTok for
over a year, but if you wanna see
some good old videos,
yep. I'm doctor doctor Sammy Oh, they are
good. Doctor Sammy Winemaker, or my Instagram is
sammy.winemaker.
Or our waiting room revolution is www.waitingroomrevolution.com.
(54:04):
That's our website.
Wonderful. Yeah. We will Stay in touch. Of
that in the show notes. We'll have the
book. Hope for the best. Plan for the
rest.
There it is. Thank you. Get ready for
the workbook. Thank you. Thank you, guys. Yes.
I'm so excited for the workbook. Yeah. Yes.
Thank you. I'm excited about the workbook.
(54:24):
Thank you so much. Thank you. Thank you,
guys.
Alright. That was mind boggling.
I knew we were gonna have a great
guest, but, like, so exceeded my expectations.
Right. Me too. Me too. And I've known
Sammy for a couple of years,
through,
you know, TikTok and and, like,
(54:45):
I'm mutuals with her. We text back and
forth. I was on her podcast.
You know?
And
it it even exceeded my expectations
because for 1,
she's so I mean, she's so well spoken,
but down to earth and hilarious.
Very funny.
(55:06):
Very spicy today. Yeah. Spicy. But also,
like and I know you'll agree with me
on this. Like, the things that she was
saying, it's just like it's like if as
if it came out of my own brain.
Yeah. You know? Like, what she's saying. It
it's so fascinating and fascinating to hear about
what's happening in Canada with their palliative slash
hospice.
(55:26):
Mhmm. They have struggles too.
At the end of the day, it's free,
which is nice for them. Yeah. We don't
have that. Well, Medicare, if you got Medicare,
hospice is free ish. You know? Yeah. Yeah.
You still have to pay for it. You
still have to pay for it. But that
doesn't include care. I don't I like caregiving
at all. So Oh, yeah. And yeah. And
(55:48):
but it was interesting too to hear about
the care centers
Mhmm. And how really equity. The equity, how
inequitable they are and, and true, you know,
like,
the the the cancer patients
do tend to get more
notice, I think.
And probably because a lot of them are
young,
(56:09):
but, yeah, fascinating episode. That was really fun.
Yeah. Yeah. I'm having her on. So many
times something comes up in the middle of
a conversation, I'll just have to stuff it
because, like, we do not have time to
be here literally all day. I know. We
could be here for
hours. Yeah. She'll have to be returned. Yes.
For sure. After she gets the workbook,
we should just do an episode just all
(56:31):
about the workbook. Yeah. Yeah. Yeah. I'm excited
to see it. That's Me too. I really
I'm so glad you told me about this
book so I could get it. And the
more I
deep dive into it, you know, flipping through,
you know, I I haven't read it cover
to cover quite yet. I flipped through a
lot of it. And then listening to the
podcast caught me up on a lot of
(56:52):
what was already in the book. And,
it yeah. I'm I'm not just that's not
just lip service. I am going to be
changing the way I approach conversations with people
even though we are at the end.
Now we're having those conversations. Unfortunately, it should
be upstream, but here we are. So Have
you seen the table yet in the book?
The table with the,
certain diseases and Oh, no. Oh, yeah. There's
(57:15):
a table in there with diseases that has
kind of like
a expectation
of, you know, what's gonna unfold with certain
diseases.
Nice. No. I'll check it out. I'm definitely
bringing this to work and I'm gonna
tell all my colleagues to listen in and
and check it out because it's Yeah. It
really is helpful.
It is. It's very helpful. It's really helpful.
(57:36):
It empowers people to ask questions and I
mean, because we can tell people all day
long, ask questions.
You know, when you go to the oncologist,
ask them some questions. What do you you
know,
but I think when you when you're armed
with more
specific
information and and guidance
Yeah.
When you ask the questions, the the they're
(57:59):
not you're not gonna be dismissed as easily
because you sound more like you really want
to know.
Whereas you're like, doc, I really wanna know.
Is this treatment gonna work? They're gonna work
most of the time. But if you have
more information to be able to present, then
they know you're serious and you really do
want the answers.
For sure. Yeah. Yeah. It was I love
it. Great episode.
(58:20):
Another great one in the can. In the
can.
Alright. Until next time. Remember to live.
Because someday, we'll all be dead.
No one should feel like no one's ever
done this before. People have done these things
before, and so we need to share with
people. This is how you have
a better in control
illness journey.
We may not be able to change the
illness itself,
and there's specialists to help with that, but
we can improve your illness experience. And, you
(00:23):
know, that that's worthwhile.
Welcome to the Death Happens podcast,
an insider's guide to dying. We're your insiders.
I'm hospice nurse Penny.
And I'm Hallie, hospice social worker.
(00:44):
We have a great episode for you today.
We are welcoming
doctor Sammy Winemaker,
a palliative care doctor in Canada,
and also,
one of the authors of
hope for the best plan for the rest,
which is
really one of my favorite
books right now. I I actually have just
(01:06):
ordered my third one because I keep giving
them away. I'll meet somebody who's going through
a situation,
with someone with a terminal or life limiting
condition, and I'm like, you've gotta read this
book. It is just amazing. So I'm so
excited to talk to her today. Me too.
Me too.
Well, before we get to her, let's chat
(01:28):
a little bit, about the evolution
of talking about death and dying and how
that's culturally changed, especially over the last few
years.
Yeah. It really has, especially since COVID. So
Mhmm.
I really have noticed,
when COVID came. You know? I say we
we tucked death and dying away in the
(01:50):
hospitals. It used to be in the home.
You know, grandma and grandpa that used to
die in the home with the family. It
was very normalized. They kept the body in
the house for the wakes. Mhmm. And then,
you know, with the advancement of medical technology,
people lived longer, but then they'd get to
a point where when they're sick and dying,
they need to be in the hospital to
be able to live longer, and then
(02:10):
they were dying in the hospital. So we
tucked it away. We tucked death away in
the hospital. It's funny. I was just watching
Tombstone the other day, and they you know,
this is the 18 eighties.
Yeah. And Yeah. They were showing
the procession
with the funerals and the, you know, the
people
displayed the coffins just out in the street.
And, like, that wasn't that long ago. And
(02:32):
then we went to, like, you're talking about
this into the hospital, tuck it away, don't
look at it, don't talk about it.
Right. Until COVID.
Yeah. I mean and then everybody's like, it's
in our face. People are dying
every day. Probably started a little bit before
COVID as far as we're starting that transition,
(02:52):
but, like, hospice been around for, you know,
40 years. And so that's baby steps started
the transition of talking about it. But I
think you're right. COVID really smacked us in
the face with it on top of social
media coming at the same time at TikTok
specifically.
Right. And I mean yeah. So the implementation
of the hospice Medicare hospice benefit happened in,
(03:14):
like, what, 1980
2. Right? Something Yeah. Something in the US.
In Yeah. In the US. Yeah. So, yeah,
it it did start to
start to resurface again.
Mhmm. But it wasn't really,
like, public
knowledge. You you really only knew about it
more if you were
(03:34):
involved in it in some way. And and
even I remember
as a teenager,
I was probably 17
years old.
1980
something. 9 1980. No. 19
Yeah. 1980.
So I was like 17 and 1980.
(03:55):
And my mom told me
that she knew somebody that was volunteering
for hospice,
and I didn't know what that meant.
Mhmm. What's hospice?
Yeah. What's what's that? I had no idea,
and my mom couldn't even really
describe it to me either. Right? It's about
people dying. That's, you know, that's what it
(04:16):
was. So it was, like,
people
knew about it if they were really involved
in it. But other than that, it wasn't
really out there that much. But it it
was COVID that that really kind of started
to bring the topic of death and dying
more to the forefront. For sure. It's on
the news, man. We're seeing refrigerator trucks packed
(04:37):
outside of Yeah. Parked outside of hospitals,
packed with people who died from COVID.
You know, we're just hearing a lot more
about it. And, also, you know, the technology
advanced too where social media became this thing
that is easily
attainable
Mhmm.
And consumable.
Yeah. Yeah.
(04:57):
It's easier to Facebook's been around for for
a long time,
but it wasn't the
you
know, little videos that you can watch and
go, oh,
there's a one minute video about, you know,
people dying in the hospital. Instagram didn't quite
have the same
No. Zhuzh, if you will.
Yeah. The reels weren't around yet. So yeah.
(05:19):
But then just check-in COVID brought you
brought all of us to you and you
to all of us,
miss OG.
Yeah. I guess you could say.
But yeah. And I mean, it's it's
fantastic. You know? I I really feel like,
I can see through my TikTok
(05:41):
and my Instagram and my YouTube and on
Facebook.
How many people change yourself.
You're doing a lot out there.
How many people are
really wanting to to know more about death
and dying? Mhmm. You know? I wonder how
much of that is autonomy based. Like, the
more you know, the more you can plan,
(06:03):
the more you can have control over it.
And we can't control that we're gonna die,
but we can have control over how we're
gonna live before that.
Well, I I think a lot of it
is autonomy based. And and also
because I and the other social media hospice
people like you also,
are talking to people about things that they
(06:23):
probably haven't thought about. Like and and on
this like, in the simplest
ways, like,
denying somebody,
alcoholic beverage when they're dying or
or pain medication if they're uncomfortable. And, you
know, and I make these videos about,
people like well, I recently did one about
family members not wanting, and it's a it's,
(06:43):
like, literally less than 15 seconds long. It's
just the words on the screen, and I'm
lip synching or something like that. And it's
about family member doesn't want a person to
have morphine because they're afraid they'll get addicted.
And how many people in my comment section
are like,
what? That's crazy.
And they probably never
have thought about that before. Right.
Exactly.
(07:04):
And so they do have like this idea.
Well, that's not what I want.
You know? So how much more do I
need to know about this just so that
I can
Yes. And that is why I am so
thrilled to talk to Sammy today because
her book is exactly what we've been talking
about, but further upstream, which is even better.
(07:25):
Yes. Yeah.
Yeah. I am very excited to talk to
her today. I think it's gonna be a
wonderful
episode.
I agree.
Well, let's do it. Let's do it.
Welcome, doctor Sammy. We're so happy to finally
have you on. I am Welcome.
Thank you so much for having me. I'm
(07:46):
so excited.
Oh, it's absolutely our honor. We are super
excited to talk more about your book, your
podcast, all the things. Tell us about yourself.
Okay. Well, it all started in 1970
when I was
born.
Now let's skip forward.
I've been in practice
(08:07):
as a palliative care physician for about 20
years. And
I work in people's homes. So,
I feel very,
privileged to work in people's homes and feel
like I have developed a whole different skill
set that my colleagues,
will never develop because
(08:27):
they haven't trained in this amazing
care setting called the community
and in people's homes. So
that's what I do. I'm part of an
outreach team and,
I go into houses every day caring for
people,
at the end of their illness.
And And I'm sure our listening listeners are
hearing that little bit of an accent. You're
(08:49):
up in Canada. Yes? Oh, did you hear
an accent? Did I say out and about?
Oh, you you have an accent. You have
an accent. Really? Oh, yeah. Okay. Oh, yeah.
Just, do you see a boat? A boat.
Oh, yeah.
A boat. Yeah. Or if I say sorry,
I think that's the other. Sorry. Yes. Yeah.
(09:09):
Yeah. So so to clarify, because in Canada,
palliative care is really what we call hospice.
Yeah. It's all mushed together in Canada. We
don't separate them. And when we refer to
hospice Which I love. Yeah, when we refer
to hospice in Canada, it is more a
bricks and mortar
place where people can go to die in
the last 3 months of life. And they
(09:31):
also have,
you know, day programs and some outreach programs,
but,
palliative care, you know, encompasses hospice. It's all
mushed.
We need to learn from Canada. Yes, we
do. The irony is people think that sometimes
that's what they think hospice is down in
(09:51):
America. Mhmm. And a place. Yeah. And then
most of us do not have access to
hospice care centers like Penny used to work
in. Mhmm. Mhmm.
Yeah. Well,
anyway, so that's what I do. And,
yeah, amongst other things that I've gotten myself
involved in in the last little while, which
maybe we'll talk about. Yes. Yeah. Oh, oh,
(10:13):
we're jumping right in
because all over this book. So your book,
hope for the best,
plan for the rest. I think this is
Penny and I's mantra.
Mhmm.
And absolutely, you guys, you and if I'm
saying this correctly, doctor.
You're perfect. I can't believe it. I've been
practicing. Wow.
(10:35):
Perfect.
So you and he have been working on
this also in it sounds kind of in
conjunction with your podcast.
Yeah. Because I did cheat a little bit
and listened to the first couple episodes,
which basically encompass the the book chapters, which
I thought was a great companion Mhmm. To
the book.
Love them both. So can you tell us
(10:56):
a little bit about how you 2 came
together?
Before you do, I wanna say something about
that title. I
really like the title because hope for the
best, plan for the rest
sounds so much better than hope for the
best, plan for the worst. Yeah. Because right
off the bat when you say that the
worst, it's like Yeah. It's putting this negative,
(11:17):
you know, connotation
to to death and and dying. And so
I'd love
it's catchy, and I also love the fact
that it doesn't like further stigmatize
end of life care. So Yeah. Yeah. Just
wanna say that.
Great point. And there was method to our
madness too because,
we wanted this information
(11:38):
to be offered to people as early as
possible in their illness journey.
And so what we couldn't do is try
to sell them something that was scary because
there's no readiness for that right at the
beginning, right? So we wanted the book to
look
pleasing and approachable,
and the title had to be full of
(11:59):
hope. And we needed people to buy it.
If I had written something that was,
you know, like I said to my sister
one day, I'm going to write a book
What to Expect When You're Dying, just like
What to Expect When You're Expecting, you know,
that book that pregnant women read.
The worry was that no one would pick
it up early in their illness, right? So
(12:20):
hope for the best plan for the rest
is something we thought people wouldn't feel uncomfortable
giving the book to people when they don't
know what else to do when someone's diagnosed.
So,
it's positioned early. I think that's
the difference
between this book and maybe some other books.
But how did we get together, Sienna and
I? Well, if I'm Well, before Yeah. Before
(12:40):
you even say that, I mean, now that
you're saying it, as I'm hearing you say
it, it it's
truly
transformational
as this is coming out. We were just
talking before you were on about how death
talking about death, normalizing death, the culture shift
between the decades and the centuries even and
how it's starting to come back into,
(13:02):
favor in
the world at large, if you will.
But it's not normalized quite yet. And this
book, like you were saying, I think in
your podcast and even in the book, that
if you're just teaching physicians, it's gonna take
too long to get to the public.
So I love your focus upstream.
Yeah. Okay. Well, that's a good segue into
(13:23):
how Sienna and I got so frustrated,
so frustrated in our careers. Like, both of
us wanted to just pack it in because
we had spent, like, very, very many years
trying to change the culture
of health care from, you know, behind the
curtains.
And,
that's
all very important, but not moving fast enough.
(13:44):
So we just got fed up, honestly.
He did not wanna do more research in
the same and I didn't wanna see the
same stories over and over again. So, we
decided to do something. I think that was
brave at the time and, you know, leapfrog
over healthcare providers and just go straight to
the public.
And, you know, when you're a doctor,
(14:06):
you of course belong to a college just
like nurses belong to a college and, you
know, we're all very mindful of the institutions
and the leadership roles that we have and
that stuff can be very silencing.
And I was
naive enough not to look too deeply into
it when we decided to go public facing.
And
I'm grateful that I didn't because had I
(14:28):
probably read up on what one is supposed
to and not supposed to do
in this profession, I probably would have been
inundated.
But,
anyway, yeah. So we decided to go, you
know, straight to the public, like many others
have had including you guys. I mean,
but for me, it was very new and
(14:48):
same with CN and we had a huge
learning curve, how to take
our skill set and offer it
in a different vibe
at a different
entry point in the illness journey
with a language that was going to be
acceptable to people.
And,
yeah. And so that's what we did.
(15:09):
And we're still learning. We were
yeah. Yeah. We were just talking, with another
interviewee,
Cody, and talking about the way that you
frame hope
and how you reframe it as the journey
goes along that there's never a time when
you don't have hope. It's just what you
hope for.
Yeah. I don't think I made that up,
(15:29):
but
people like it.
But, yeah, no, it's true.
You know, I guess I like to think
of the difference between a wish and a
hope, right? And a wish is something that
can be anything and it doesn't have to
be realistic. Just like I wish,
you know, I was a billionaire and I
wish,
you know,
(15:50):
no one was fighting in this world right
now. But a hope has to be more
grounded in reality.
And
the good news is, is that we can
still have hope no matter what stage we're
at of an illness journey, right? It just
has to change its color,
like a rain like a rainbow. Right? And
(16:11):
we can only do that naturally if we
have the scaffolding
of reality
that helps our hope shift
from hope that they got the wrong person
with this diagnosis,
fast forward down the road
to hope that
I have
reconciliation
with my family
(16:32):
before I die or hope that,
you know, I'm going to have little symptom
burden, hope that my family lives on and
takes care of each other. I mean, hope
is hope is hope. It can stay high,
but it can't be
mismatched
to where you're at in your illness. That's
when we get in trouble. If you're still
hoping for a cure, and you're bedridden,
(16:54):
at the end
of an illness,
we've got some explaining to do.
Yes.
Yeah.
Definitely.
I feel that so hard. I can't believe
how many people come to hospice, and I'm
pending I'm sure you've had this happen
where
you're doing your intake form, and they don't
(17:15):
nobody's even told them they have 6 months
or less. Oh. Mhmm. Like, they they haven't
had any conversation before. Yeah. It has happened.
And and speaking of that, Sammy,
what is the,
requirement for palliative care slash hospice in Canada,
with respect to diagnosis
and prognosis.
Yeah. I mean, don't you wish that I
(17:35):
could just give you a simple answer to
all these things, but it's not so simple.
So, I mean,
there are criteria
for services
that are different than
the
criteria for
receiving the care, right? So, if we're talking
about a philosophy
of palliative care, a palliative approach,
(17:58):
Really, anyone who's facing
a life limiting illness
deserves a palliative approach
peppered into their illness journey from the time
of diagnosis.
And that should be delivered by any doctor
and any nurse because we've trained them properly
and they just do it as the natural
part of their skill set.
Now, to qualify for a palliative care team
(18:20):
or doctor or nurse in the hospital or
any other care setting,
There
really isn't any criteria.
What happens though is that we tend to
be
the transfer of care team
that people pass the baton to very late
(18:40):
in the illness, and we're overly synonymous with
end of life care
in Canada.
Even though we've tried to market ourselves as
a helpful consult service
at any point along the illness journey.
We are still living in an old fashioned
healthcare system here where the baton is passed
(19:01):
and it keeps getting passed until they pass
it to the cleanup committee, the palliative care
specialty teams,
which
helps to stitch a person back together
to feel like
a whole person again right before they die.
When they've been reduced
to an organ, a diagnosis, a room number,
(19:22):
dismembered in many ways.
And once we catch them too late,
we try to put them back together and
then
off they go.
We have a problematic
definition of palliative care and people's understanding of
palliative care. It's usually over synonymous with cancer,
over synonymous with only elderly people, over synonymous
(19:45):
with end of life care, over synonymous with
hospital settings only.
And so I think we probably struggle the
same
type of problems, you know, across our borders.
Yeah. I would I mean, everything you just
said, it's like, oh, yeah, that sounds like
hospice. Yeah. That's exactly,
you know. So so here we are thinking,
(20:05):
yay. You guys have the right model. You've
got palliative and hospice. It's all one thing.
Yeah. And for us, it's it's the same
thing. People are referred too late. Mhmm. You
know? They're
it's it's the last, you know,
the last ditch effort to
to try to do something with them before
their death, and it's almost
I mean, it's often too late. So it's
(20:27):
it's so interesting. And so
do they in the US, they have
to stop curative treatment
in order to be on hospice.
So in order for the palliative team to
take over, which is what I kinda hear
as the hospice part of palliative care for
you guys. Mhmm.
(20:49):
Can they still seek treatment up until their
time of death? Or is there a point
where in order to qualify for your services,
they have to stop that treatment like they
do in the US?
So to have a palliative care service involved
in the hospital or at home, I'm part
of an outreach program, that is not one
of the criteria.
(21:09):
And you don't have to be and allow
natural death or DNR.
You can receive
palliative care
alongside,
you know, other disease modifying
treatments.
To go into a hospice in the last
3 months of life, you must be an
allow natural death or a do not resuscitate.
(21:32):
But if someone is in one of our
hospices
and they require radiation for pain management,
that's no problem, or they require a transfusion
because it's helped with their quality of life,
they can still
go to the hospital and get one. Or
if they need, you know, a venting PEG
(21:52):
tube or
BiPAP for comfort. They can still have those
types of
treatments.
Even
we've had people
with a feeding tube or
with come in with TPN
when the goals of care are though that
they understand there'll be a time where these
things will be discontinued. But we try very
(22:14):
hard to send a message that it's not,
you have to give up this
and roll over
and die and not receive any other
treatments.
These things can
coincide together.
And I think that is the right way
to go. I think the reason why it's
separated in the states is probably because of
(22:35):
funding.
It's not philosophy, it's funding. Well, yeah. That's
true.
We we do also allow
certain treatment
like you're saying Mhmm. Radiation to decrease tumor
bulk.
Yeah. Tube feeding. We don't typically do TPN,
but, you know, that type of thing
can be done as long as the like
(22:56):
you say, it's sort of the goals of
care. It's not to prolong life,
It's
to prolong comfort Mhmm. Prevent suffering. So we
can do those things in hospice.
One thing I really, really wish we had
that you have there is the hospice care
center for people because that is a
(23:16):
huge area
in our in in the US
that's it's it's lacking and caregivers
the burden of caregiving for our dying people
is on their family.
Yeah. And it's it's
so hard for them. So that's Broken on
every level. Well, can I can I be
(23:37):
honest with you?
Is that okay? I'm probably gonna get myself
in trouble, which is won't be new, but,
you
know, so we have these amazing
stunning beautiful
bricks and mortar hospices,
okay.
And there's probably
not every community has one, but those that
do usually have a 6 to 10 bed
(24:01):
unit, let's just say. Usually tucked in some
beautiful residential area and the rooms are stunning.
It's like being in a hotel. It's usually
nicer than any of our homes and they
get beautiful care.
But I will tell you that most of
the people that land in our hospices are
people with cancer.
That it is very inequitable when it comes
(24:21):
to identifying
other non cancer diagnoses and when they're in
their last 3 months of life.
So it becomes inequitable. And then the other
thing is,
you know, there is so much money that
goes into those 10 bed hospices
for Cadillac
care.
(24:41):
And that money could probably be used for
respite in people's homes.
More people could get
a Ford model car in their home
instead of 10 people getting a Cadillac
in a hospice.
I'm telling you, like,
I I find it,
(25:02):
disconcerting
that home care is so lacking,
but then we have a 10 bed hospice
that is like
for Hollywood movie stars.
The difference is so
unbelievable.
And if we just gave people in the
home
some respite blocks, like, you know, a personal
(25:22):
support worker or volunteer
or nursing hours to offload the family for
a couple of hours a couple times a
week, that might make the difference between someone
being able to stay home or not. So
I think that hospices make
communities feel secure.
They make politicians with the ribbon cutting
feel wonderful, and
(25:45):
donators love sending money to the hospice, but
they do not meet the needs of a
community.
You're speaking my language. Yeah. And and
it's kinda sounds like our hospice care center
is here too in a way. And,
you know, I can see where it would
be more challenging
(26:05):
to have that 3 month prognosis
if you're not if you're talking about a
noncancer diagnosis because then we're looking at
COPD,
dementia,
ALS
Mhmm. Cardiac disease. These things that are so
much more challenging to prognosticate.
Mhmm. You know, you can't it's harder to
get into that 3 month window. It's hard
(26:27):
to get into the 6 month window Mhmm.
You know, for hospice here.
But getting into a 3 month is even
more challenging. And so I guess, you know,
there are some things that we have that
are are probably a little
maybe a little better, like the respite benefit
that we do have, but then it's not
it's not in home respite. Mhmm. It's it's
(26:47):
trying to find a nursing home that you
can put them in. Right. And then you
are taking them out of their home to
do this. Yeah.
So yeah. That that presents a whole other
list of problems trying to pull someone out
of their home. Yeah. Yeah. Even if it's
for a real
needed respite break. Yeah. Yeah. Well, even just
finding a bed Yeah. Exactly. In a nursing
(27:08):
home more Yeah. Can be hard. It it's,
it's near impossible here.
So, yeah, we still have such
a broken system and this is why we
are trying to, with our work, prepare
people to become patients and prepare families to
become caregivers
and managers,
of their
(27:29):
illness.
Because if we can give them these skills
and information
and the reality of it all, what this
is gonna look like right from the get
go, they may have a fighting chance not
to find themselves
further along in the illness feeling very overwhelmed
and burnt out.
Proactive care is really the only way to
go. Right? Instead of being Yeah. Reactive
(27:52):
to everything. Reactive.
Yes. Yes. And none of this is new.
Like, we we we have the benefit of
seeing so many patterns, right? Like pattern recognition
is our best friend.
No one should feel like
no one's ever done this before. People have
done these things before, and so we need
to share with people,
you know, this is how you have
(28:13):
a better in control
illness journey.
We may not be able to change the
illness itself.
And, you know, there's specialists to help with
that, but we can improve your illness experience.
And,
you know, that that's worthwhile.
Well, I'm teaching people to be their own
advocates. Yeah. And I love you.
(28:35):
You say if that person is not ready
to have the conversation,
I love you so much.
Now you're you're talking to other people
in your group. Right? Like, one of you
should be willing to have that conversation.
So when you're ready, you know what's coming.
Yeah. Just like if one person can have
their eyes wide open, we're good. Mhmm. Let's
(28:57):
be realistic here. It's just like, you know,
realistic with our hospices. Like, we're giving 10
people
Rolls Royce Care is not gonna be the
answer when there are thousands of people in
the middle and at the end of their
illness at people's homes. So,
yeah, it's a little bit for everyone is
better than all of it for one person,
(29:18):
right?
Mhmm. Yes.
So What brought you to in home palliative
care versus hospital or any other model you
have up there? Nurses did. So when I
was a medical student, I don't know how
I stumbled upon
creating an elective for myself where I hung
out with a visiting nurse in the communities.
(29:41):
Someone must have told me to do that
and it wasn't part of our mandatory curriculum,
but I was absolutely
hooked and amazed.
You know, this nurse who was a palliative
care, you would call them a hospice visiting
nurse, you know, did the kind of work
that you guys do. And we went from
a fancy
(30:01):
house, you know, in a really affluent area.
A woman was in her bed with jazz
music and a fluffy duvet
and a white gown and
a fireplace in her bedroom.
And
we then went to another part of town
where it was in a more of a
(30:22):
rural area, a little bit of a farming
community where
a husband was taking care of his wife
on a mattress.
There were flies everywhere.
And, you know, I remember saying to her,
oh, we have to do something about this.
Like, this is not acceptable. And, you know,
she was explaining to me that a home
is a home is a home. And
(30:44):
that is not what,
is the deciding factor of who will pull
this off at home and who won't. And
sure enough- That's so true. Yeah, I later
learned that the woman
with the jazz music
ended up having to go to the hospital
because her family who were plentiful just could
not manage it.
They were not coping.
(31:06):
But the one elderly guy taking care of
his wife on the mattress
with the flies in the basically a barn
died in her barn,
which is where they live. And so
I I just thought it was the most
creative,
off roading,
artistic,
crazily
(31:26):
interesting,
if that's a word,
place to work. And I just
never wanted to work anywhere else. And I
still feel that way.
I love it. There's not a day
that I don't learn something new.
Every single patient, every home, every family throws
us
(31:46):
a challenge. And
I just love it. And I'm amazed at
what people do when they're not interfacing with
the healthcare system. I'm amazed what they pull
off at home.
It's incredible.
Mhmm.
Yeah. The resilience
of folks that
haven't had any other choice but to be
(32:07):
resilient. Yeah.
They are their own OTs, PTs, dietitians,
nurses, doctors, pharmacists,
rec therapists.
They're everything.
And they're treated like nothing in every other
healthcare system. Oh, thanks so much for driving
your loved one to this appointment
as a nice
(32:28):
chauffeur. No, no, I'm sorry. That is more
than a chauffeur, I tell you.
And I know when I leave a home
that the plan has to have been hatched
with the family, my care team,
and it has to be negotiated from what
is the standard in the hospital to what
is acceptable and doable and realistic in this
(32:48):
person's home. And that's very
creative and exciting, right? So
I don't know. The MacGyver. Yeah. The MacGyver.
We're we're we're the MacGyvers. Yeah. I mean,
that's what I also
loved about it. And and I started in
inpatient care, but we still had to
be very
ingenious with some of our
(33:10):
things that we did for wounds and, you
know, because,
you know, we see wounds in hospice that
you can't even imagine. They're not in textbooks.
You don't know what to do with them,
and you gotta MacGyver things. Yeah. But, the
other thing too about how,
you know, you were saying when they go
to the doctor, they're considered the chauffeur. Right?
(33:30):
Thanks for bringing them here Yeah. Without any
consideration to what they've been doing at home,
but also
being dismissed when they say that something's wrong.
Yeah. Right. Absolutely. And they're with that person
all of the time. And the doctor's like,
I look fine to me. You know? Yeah.
I've been here for 20 minutes and she
looks fantastic. What are you talking about? You
know? And and there's another kind of thing
(33:52):
that that happens is when they're just dismissed,
and told stop Googling. Stop Googling.
You know?
It's horrible. It's really we we really do
not know how to truly
incorporate
families into,
you know,
the health care at all,
or to incorporate us into their care. I
(34:13):
mean, we have as tokens on patient advisory
and family advisory committees and things like that.
And they barely get a say in those
committees. But on an individual basis, we have
really very little training on how to care
for people as a unit of care, right?
And what that really means. Yes. Unless you've
worked in the home environment where you you
(34:34):
really have no choice. You walk in the
door, you're on their turf.
This is their home,
and you are a guest. And there's no
white coat. There's no,
you know, fancy language. We just
we have to be real in people's homes.
So,
yeah, I think it's made it easier for
(34:55):
me to speak to the public because I've
never been fanciful in the way that I
talk. So
I don't know. Well, I think part of
it too is and and why we're probably
better at
including the family
in our
provision of health care in hospice and palliative
care both there and here is well, I
(35:17):
don't know what it's like there, but for
here, for us, we have interdisciplinary
care. So our palliative care in our hospice
is interdisciplinary
care teams. And part of that care team
is
the patient
and their family. They're considered a part of
that interdisciplinary
team.
There aren't any other models of health care
in the US where there is an interdisciplinary
(35:39):
team.
It's
your internist. It's your oncologist.
It's your OBGYN.
It's your there's there they don't
collaborate,
you know, in normal
health care.
Yeah. But in palliative and and,
and so that's where I think the the
family gets to be more involved because we
recognize them as a part of the team.
(36:00):
Yeah. I I think we do also again
in palliative care, but again, it's like too
little too late. A person may have had
their ALS for already, you know, four and
a half years by the time you catch
them. And so
I love what we do, don't get me
wrong, we meaning the 3 of us and
whoever else works in hospice or palliative care,
but
(36:20):
we
are providing this incredible
service at the 11th hour
after people have already become
almost like on a conveyor belt of a
factory.
And just before they fall off the cliff,
we we catch them. I hate I'm a
little bit cynical today for some reason. I
don't know why.
(36:41):
I'm sorry.
I'm not a real hoot today, but I
just That's a problem. We're gonna bring it
back to hope because I do wanna talk
about the 8 seasons of your podcast Yeah.
Waiting room Which is
waiting room revolution,
which is also
appropriately
named. Yeah. Yeah. Thank you.
And that's also with doctor Ciel. So
(37:04):
Yep. Again, tell tell us a bit about
how that came about
or was it in conjunction with the book?
It was in conjunction and we had Penny
on as a guest, which was awesome. Yeah,
so the podcast started first and neither of
us had ever
even listened to a podcast, let alone tried
to make a podcast.
(37:25):
So
it was very new for us
and low budget, let's just say.
And it was just a way to talk
out what we were thinking with different guests
and different stories. And we were able to
elaborate on some of our thoughts. And then
the book came afterwards.
So really, the podcast was just a way
to, you know, during COVID
(37:47):
to continue the work that we were thinking
about. And,
you know, we have to try to
be accessible to all different generations, right? So
I'm a certain generation,
and there are generations who just lap up
podcasts and others who like social media and
others who want a physical book and others
(38:07):
who want, you know, whatever.
So this is as part of a social
movement where we're trying to light a fire
in the community, in the public, and, you
know, create an absolute groundswell
of people who are gonna come to the
health care system with a new mojo.
And
that we're hoping is going to force the
(38:28):
system to have to say,
okay, we can't really just be the same
as we always have been. We need to
respond to this new
activated patient and family.
So, yeah, so it's it they're all all
these things are part of our social movement,
which we're hoping at some point
is less about CN and me and
(38:49):
more and it's already happening. We're getting signals
now that
other people in other countries
are taking our work and running with it
and adapting it. And yeah, it's great. We've
had people from the UK and Australia and
Tasmania
and in the US
doing different things,
and asking permission. Can I just adapt that
(39:10):
and change it a little bit for, you
know, this indigenous
group or, you know, so those are really
positive
signs? And
we have a workbook coming out because people
who read our book said, do you have
a course?
Do you have a workbook? So we've just
finished writing our workbook and it'll be,
I'll send you guys the advanced reading copy.
(39:31):
It'll be out in November, but the actual
workbook will be out in March,
and it goes even deeper
into sort of the practical
skills to help a patient and family
be in the know and feel like their
own individual
unique
person
throughout their entire illness and
(39:54):
push against
in in the most respectful way, becoming
a cog in a wheel or a widget
on a conveyor belt.
And so hopefully, when the 3 of us
are meeting patients in the future,
if our social movement goes well,
we won't be spending so much time untangling
them, and we can really spend the time
(40:16):
doing what makes most sense with them. Right?
And what they want it to be.
I was just gonna say, I mean, doctor
Sami, just even from reading this and listening
so
far, it's already made me think of different
ways to talk to my families
as we're still in this space. And like
you said, I'm hopeful that down the road,
(40:36):
it won't be so much of that, and
we can really spend time on focusing on
that quality of life. Yeah. Oh, that's really
wonderful.
I'm sure you're incredible at what you do,
both of you. Thank you. You know, this
is the best part of going public is,
you know, meeting people. Like, when we went
on social media,
I was shocked that all of this was
(40:58):
happening behind my back. You know, I couldn't
believe it. And
you guys are early adopters. Like, I was
so late to the game and I still
have no idea what I'm doing. Thank you
for your tips, Penny. I have, like, no
skill in this department. I just whatever.
But,
me Don't worry. OG helped me too. I
was new. I was new at posting, so,
(41:20):
yes, she's very helpful. You know, I I
was so interested in in your book, Penny,
if I could mention that, when you said,
you know, way back when before social media,
you
were, you know, developing web pages and on
on the Internet trying to, like, rally people
together. I won't I won't
it
this won't be as
a I won't spoil your book. But, like,
(41:40):
really,
you are the OG.
Really the OG.
Honestly.
Yeah. I always say to anybody who uses
GoFundMe,
you're welcome because
I I was
one of literally one of the first, what
they called Internet panhandlers
Yeah. Asking for money on the Internet
(42:02):
for a very good cause Incredible.
Before,
before GoFundMe was even around. And Facebook wasn't
around. None of that was around. You know?
I was highly criticized for it. But yeah.
Yeah. I've just I I think just kinda
like with you and doctor Siau, you know,
like, recognizing that that there's a lot of
(42:22):
strength in numbers socially. Right? Like Yes. In
our peer groups
that,
we can get a lot accomplished probably more
than politicians can.
If we rally around, you know,
each other and Yeah. And try to
Both to each other. Movements. Yeah. You know
what? Honestly,
(42:42):
I'm I think I've been surprised
delightfully surprised by the support that everyone gives
each other
while we're doing this public facing stuff because
I think in the hospital and other care
settings and amongst colleagues, it's not
it's not as supportive.
And,
yeah, I just have been
really touched by people's willingness to share what's
(43:05):
working, what's not working, try this, don't try
that.
It's it's amazing. There's so much
space for everyone.
Well, I think it's because those of us
who do put ourselves out there on,
you know, on the interwebs, on social media,
are
really
(43:26):
committed to advocacy.
We're passionate. I mean, that's what got me.
I didn't try to go on social media
to to become, like, TikTok famous. Mhmm.
I mean, originally, I just went on there
to learn how to shuffle dance as I
said before. I
I didn't. I never did.
But, you know, once I I've always been
a passionate advocate for hospice and great quality
(43:48):
end of life care since I became a
hospice nurse. And once I realized that there
were the public wanted to know more,
I was like, oh my god. You know,
I have this opportunity to bring my
experience and my knowledge and my expertise
to the public at a grassroots level, and
how cool is that? So I think that's
(44:09):
why we support each other so much is
we're kinda all in it for the same
reason. You know? It's not about, like,
trying to become a star.
It's it's really about
the mission, like,
that we're we're really trying to to to
change
health care Yeah. For the better,
for everyone.
(44:30):
Speaking about networking and advocacy, can we just
talk about your BFF, doctor Faith Banks for
a second? Oh, did you have her on
your
yeah. Yeah. Bless.
Yeah. Yeah. Okay. So
Faith
so, yeah, a palliative
veterinarian,
I guess. Mhmm. Amazing. I don't know if
she told you. We're high school buddies,
(44:51):
And we were in Yes, she told us.
Yeah, in class together.
And she always said she was gonna be
a vet, and
she was sort of a sure thing. And
I always said I was gonna be a
doctor, and I was a real long shot.
I don't know if
just to make you guys
feel better in whatever way this does. But,
(45:12):
I was a high school dropout, to be
honest with you. That's a that's Really?
Yeah.
So I think this is the first time
I've shared I've shared that on any podcast,
but I think, Penny, you made
me feel more brave to talk about
stuff that maybe is in the closet.
And you should. And you should because,
you know, I so I talk I've talked
(45:33):
a lot about my my past history with
legal problems, going to jail, drug addiction, alcohol
abuse,
and not becoming a nurse until I was
40 years old. So
people are really inspired by that type of
thing. You should be talking about that, that
you were a high school dropout and you
became a doctor. That's amazing. Just kidding.
(45:54):
Back to back to doctor Faith Banks. Yeah.
So
she and I had drifted for a while,
just because life takes you that way. And
it wasn't until I went on Instagram
almost like I had been
so I moved out of the city that
I grew up in, which was a little
bit of a suffocating
kind of community in a way,
(46:16):
you know. But anyway,
disappeared for decades
probably because I wasn't so proud of dropping
out and that wasn't customary where I came
from and whatever life went on.
And decades later,
so no one had heard or seen anything
about me since I was about like 19.
(46:37):
And then when I'm
50
or 52
reappear on
Instagram,
it was like a shocking
As a doctor,
as a doctor no less. Yeah. It was
sort of a shocking coming out in a
way. And, I reconnected with lots of people,
including Faith, and then she became very interested
(46:59):
in and and I was inspired by people
like you guys, and then I guess I
inspired her, and it's sort of like a
domino effect. Right? And,
yeah, she's really cool, and she's got such
a cool practice.
Yeah. Yeah. Yeah. She does. She is cool.
I I like her a lot. To it,
doctor Sami. I think we all inspire each
(47:19):
other to continue
Mhmm. This work, this advocacy,
connecting to each other networking. I mean, it
just growing and growing.
I know there should be a conference.
There should be like,
a conference for people like us. I don't
know what you would
call it.
But anyway, where we could all convene. Death
influencers.
Death the death influencers.
(47:41):
Conference.
Yeah. Why don't you guys start a conference
while you're doing this podcast?
What happens?
Sure. We'll get right on that. It has
to be in
Washington because I don't fly. Ally doesn't fly.
So Oh, hang on.
You know what? I didn't fly either. But
if you write a book and you wanna
(48:01):
go on book tours, you have to fly.
I've got a secret recipe for flying. If
you ever want to contact me, I'm telling
you, I have a secret recipe. I want
to I'm open to it. Nothing I have
tried has worked so far. So Really? Does
it involve Benzodiazepines?
Yes. I'm not saying. My my trial has.
Maybe there's a little,
(48:23):
recipe I'll tell you about offline, but
Excellent.
I'm I'm here for it. I'm here for
it. I wanna make sure we're honoring your
time. We have just a few questions left.
Our new season 2 question we're gonna ask
everyone is our coffin question. Okay. What would
you like to have done with your body
when you die?
Okay.
(48:49):
Oh, that's a good one.
Well
I can't believe you have to think about
this. How do you not know? I know.
You're crazy?
No.
That's the point. It's not crazy. Okay. So
I It's not crazy. Okay. If I could
if I could have a okay. So there
was a time where I thought I was
(49:10):
going to be a marine biologist
and I was a scuba instructor. Okay. That
was in the high school dropout days. But
anyway,
so
one idea I had was being, you know,
cremated and sprinkled in the ocean.
But I don't know if you know this.
I'm Jewish and Jewish people don't usually get
(49:31):
cremated. So I would have to be dismembered
and thrown into the ocean. And I think
that that would not be good. So there
goes that idea. And then, you know
so I think I'll be buried
whole, and I think that I I will
make sure that I'm not buried in anything
fancy.
So I don't want money spent on a
(49:52):
fancy like, a pine box is fine,
and my family can write
inscribe things on the box with them. Maybe
I'll have grandchildren at the time. They can
color on my coffin and
you know what? And plant me
under a tree,
you know, maybe a nice big willow tree.
And that's about it. I love it.
(50:13):
I really don't worry about that part at
all.
I don't really worry about any of it,
but I spend so much time thinking about
dying
that the dead part
seems pretty straightforward to me.
No. No.
I don't think that's unusual.
I'm sorry. I don't have a better answer
than that. I I think for a lot
(50:34):
of us, it it just doesn't matter. They're
just like, oh, we're dead. Do whatever. But
I think I think that who it's important
for is who we leave behind. Yes. Exactly.
Like, they can decide that they they can
have whatever
whatever. But they're gonna wanna know, though. They're
gonna be like, what she would what would
she although I will say, I recently had
Or at least what you don't want. That's
(50:54):
important.
Yeah.
Well, I recently had a conversation with my
sister and I told her that I wanted
to be body composted.
Oh. And she said, well, it it doesn't
matter
what you want because,
like, she doesn't like the she's she it
was clear to me that she thinks that's
very off putting. And she said, well, you're
not gonna be the one making decisions, so
(51:15):
you can want whatever you want.
Oh. That was like, okay. Well, so my
husband will be making the decision. He knows
what I want. Well, he might not go
along with it either. She said, well, he
better.
And then I said, Anne, you're if he's
not around anymore, you're my second.
Yeah. So are you telling me I can't
trust you to make decisions?
(51:35):
Because for me, it's it's really not like
I'm not concerned about
what happens to me. I'm concerned about the
environment because I have grandchildren. Yeah. And I
don't I I don't wanna be cremated. I
don't wanna have chemicals put in my body.
I don't wanna take up space in a
funeral home. And so that's what it is
all about for me. But I was just
like, wait a minute. You are my second
(51:57):
decision maker. So what are you telling me
here? You're gonna have to Doesn't matter what
you want.
You're gonna have to beg Hallie to be
your appointed decision maker. That's
a good idea. Yeah. Well, it's a little
tricky. We'll talk about that, miss.
Maybe another episode, we can talk about how
(52:18):
decision making works when you're alive versus when
you're dead. Oh, right. That's true. You're right.
Okay. Maker after you die.
That's right. It's your your POA. Yeah.
Yeah. Yeah. Stop being your decision maker when
you die. Mhmm. It's a whole other episode.
Yes. Yes. It really is.
Well, thank you for being here. Where can
(52:39):
people find you in the world? We've talked
a little bit about your book, but you
let us know. And all the details And
is there anything else that, we haven't covered
that you wanna talk about? Yes.
Nope. I think you covered it all. I'm
definitely really,
I'm really so excited that both of you
have read the book. We're hoping that people
(52:59):
in the US
think it's as helpful as people have in
Canada.
We try to make it non
country specific.
And so we're hearing from other countries that
it is helpful. And so
and I'm hearing from you guys that you
enjoyed the book. So that's wonderful.
No. I think that we're all part of
the same
(53:20):
broad movement, and I'm just
so tickled pink to have met
both of you and you now, Hallie.
And I'm
we're just part of one community now, and
you can just find me by just googling
my name, I guess.
Yeah.
Well, on on TikTok, you're
(53:42):
doctor
Yeah. Sammy Winemaker.
Honestly, I haven't been posting on TikTok for
over a year, but if you wanna see
some good old videos,
yep. I'm doctor doctor Sammy Oh, they are
good. Doctor Sammy Winemaker, or my Instagram is
sammy.winemaker.
Or our waiting room revolution is www.waitingroomrevolution.com.
(54:04):
That's our website.
Wonderful. Yeah. We will Stay in touch. Of
that in the show notes. We'll have the
book. Hope for the best. Plan for the
rest.
There it is. Thank you. Get ready for
the workbook. Thank you. Thank you, guys. Yes.
I'm so excited for the workbook. Yeah. Yes.
Thank you. I'm excited about the workbook.
(54:24):
Thank you so much. Thank you. Thank you,
guys.
Alright. That was mind boggling.
I knew we were gonna have a great
guest, but, like, so exceeded my expectations.
Right. Me too. Me too. And I've known
Sammy for a couple of years,
through,
you know, TikTok and and, like,
(54:45):
I'm mutuals with her. We text back and
forth. I was on her podcast.
You know?
And
it it even exceeded my expectations
because for 1,
she's so I mean, she's so well spoken,
but down to earth and hilarious.
Very funny.
(55:06):
Very spicy today. Yeah. Spicy. But also,
like and I know you'll agree with me
on this. Like, the things that she was
saying, it's just like it's like if as
if it came out of my own brain.
Yeah. You know? Like, what she's saying. It
it's so fascinating and fascinating to hear about
what's happening in Canada with their palliative slash
hospice.
(55:26):
Mhmm. They have struggles too.
At the end of the day, it's free,
which is nice for them. Yeah. We don't
have that. Well, Medicare, if you got Medicare,
hospice is free ish. You know? Yeah. Yeah.
You still have to pay for it. You
still have to pay for it. But that
doesn't include care. I don't I like caregiving
at all. So Oh, yeah. And yeah. And
(55:48):
but it was interesting too to hear about
the care centers
Mhmm. And how really equity. The equity, how
inequitable they are and, and true, you know,
like,
the the the cancer patients
do tend to get more
notice, I think.
And probably because a lot of them are
young,
(56:09):
but, yeah, fascinating episode. That was really fun.
Yeah. Yeah. I'm having her on. So many
times something comes up in the middle of
a conversation, I'll just have to stuff it
because, like, we do not have time to
be here literally all day. I know. We
could be here for
hours. Yeah. She'll have to be returned. Yes.
For sure. After she gets the workbook,
we should just do an episode just all
(56:31):
about the workbook. Yeah. Yeah. Yeah. I'm excited
to see it. That's Me too. I really
I'm so glad you told me about this
book so I could get it. And the
more I
deep dive into it, you know, flipping through,
you know, I I haven't read it cover
to cover quite yet. I flipped through a
lot of it. And then listening to the
podcast caught me up on a lot of
(56:52):
what was already in the book. And,
it yeah. I'm I'm not just that's not
just lip service. I am going to be
changing the way I approach conversations with people
even though we are at the end.
Now we're having those conversations. Unfortunately, it should
be upstream, but here we are. So Have
you seen the table yet in the book?
The table with the,
certain diseases and Oh, no. Oh, yeah. There's
(57:15):
a table in there with diseases that has
kind of like
a expectation
of, you know, what's gonna unfold with certain
diseases.
Nice. No. I'll check it out. I'm definitely
bringing this to work and I'm gonna
tell all my colleagues to listen in and
and check it out because it's Yeah. It
really is helpful.
It is. It's very helpful. It's really helpful.
(57:36):
It empowers people to ask questions and I
mean, because we can tell people all day
long, ask questions.
You know, when you go to the oncologist,
ask them some questions. What do you you
know,
but I think when you when you're armed
with more
specific
information and and guidance
Yeah.
When you ask the questions, the the they're
(57:59):
not you're not gonna be dismissed as easily
because you sound more like you really want
to know.
Whereas you're like, doc, I really wanna know.
Is this treatment gonna work? They're gonna work
most of the time. But if you have
more information to be able to present, then
they know you're serious and you really do
want the answers.
For sure. Yeah. Yeah. It was I love
it. Great episode.
(58:20):
Another great one in the can. In the
can.
Alright. Until next time. Remember to live.
Because someday, we'll all be dead.
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