Season 2, Episode 8: End stage and the blame game

Season 2, Episode 8: Disease progression and self harm judgement Today’s episode is a deeper dive with just Penny and Halley to discuss diseases that may be considered to have a self harm origin, along with their progression and treatment.  Thanks for joining Hospice Nurse Penny and Halley (Hospice Social Worker) on the journey to #NormalizeDeath! You can reach us at [e-mail] , on all places you find podcasts are found. A video option can be found on YouTube at https://www.youtube.com/@DeathHappensInsiders Order Penny’s book: Influencing Death: Reframing Dying for Better Living on Tertulia, Amazon, Bookshop.org, and Barnes & Noble. Audio available as well! Hospice Nurse Penny on the socials: @HospiceNursePenny Halley on Instagram, TikTok, and Facebook: @HospiceHalley Our intro music was composed by Jamie Hill (misfitstars.com)

Episode Transcript

(00:00):
There are lots of diseases that could potentially
be caused by our lifestyle choices,
but I think it's really important
not to focus on that at the end
of a person's life.
Welcome to the death happens podcast, an insider's

(00:22):
guide to dying. Where are your insiders?
I'm hospice nurse Penny. And I'm Hallie, hospice
social worker.
Today, it's just Penny and I. It should
be your favorite episode.
We're gonna do long form education today about
disease progression,
and specifically, we're going to focus on

(00:43):
diseases that may
appear to be self inflicted at times, but
we're going to treat them the same regardless.
Correct. Correct. I think we should say
long form information
or storytelling
because people hear education, they're gonna be like,
what?
Tune out.

(01:03):
Very good.
And we know it's way more exciting than
just
boring textbook stuff. Right? Of course. But, you
know, we have a little bit more time
to flush out our ideas when Yes. You're
now on TikTok and you're doing your education
pieces or
long form storytelling. It's still only a few
minutes. Yes. This is true. This is true.

(01:23):
So we do have some more time to
take a deep dive.
Yes. So let's start with let's just jump
right in and let's start with heart disease.
So just as a foundational approach to these
as people are listening, we're gonna talk about
what the disease is,
what you can expect from that particular disease,

(01:45):
what kind of symptom management that we're gonna
use to treat that, and what kind of
death might you expect.
Because really, that's the important part we want
you to understand is there are some deaths
and some diseases that are definitely
scarier and or may take more symptom management
to not be scary. So we don't want
you to be afraid. We want you to

(02:06):
have information and be prepared.
Right. But we may as well, like, skip
ahead and talk about the fact that most
of these diseases, if not all, will result
in the same type of death at the
end. Like, we're gonna see
the same
dying symptoms when somebody is actively dying,
they're having a natural death, meaning there's no
medical intervention

(02:26):
that's keeping them alive or prolonging their life
and they're dying from natural causes most of
the time. Had some patients on hospice that
didn't die of natural causes, but
it's gonna be a,
similar approach to to the end of life.
People look the same at the very end
when you say, Ali.
Yeah. Oh, yeah. I totally agree with you.
I think what I'm thinking of and specifically

(02:48):
we're gonna get into this, I think, with
the heart disease
is there can be more symptom management
before we get to that active dying stage,
and that's what people worry about when
Yeah.
When I've had people come on earlier and
they've had time to ask questions about that,
the things they're worried about,
especially breathing, we know we're gonna talk about

(03:08):
COPD today.
So there's gonna be some symptom management things
that I wanna make sure we're reassuring folks,
especially
you, Penny, on the nursing side can give
people an idea of what kind of symptom
management we can use.
Right. Yeah. So in shortness of breath, so
let's go ahead with with cardiac, end stage
cardiac disease. People who come on hospice have

(03:28):
end stage cardiac disease.
So we're we are looking at shortness of
breath, with that disease.
We are looking at fatigue.
I like the term
chair to bed existence.
Mhmm. People can't really
get around anymore. They're exhausted. They're very fatigued.
We can see chest pain sometimes with with

(03:50):
end stage cardiac,
but it's really weakness,
fatigue,
shortness of breath.
And
some might think that fatigue isn't that bad
of a symptom. Right? So you're just tired,
whatever.
But you know, I've known people, patients,
who have fatigue who,
you know, it's exhausting.

(04:10):
It's exhausting to be fatigued to not have
the energy to do what you wanna do,
especially when you're looking at the last part
of your life and you do wanna try
to check off your bucket list, but you
don't have the energy to do that anymore.
So we treat we treat, cardiac disease symptoms
with oxygen. That's something that we use very
often

(04:30):
successfully with people to to kinda give them
a little more energy.
We can give steroids, but we typically don't
use a lot of steroids for end stage
cardiac. But if somebody's very fatigued, we can,
that'll give them a little perk,
little perk up.
And, and then of course, morphine, you know,
is our gold standard for shortness of breath.
So we can, we can treat cardiac disease

(04:52):
with that. We may also see with cardiac
disease, a lot of edema,
especially in the lower extremities. So we can
see swelling in the legs,
weeping edema. We sometimes see where the legs
are so swollen that they're they're literally like
weeping. There's there's fluids
coming out of the legs.

(05:13):
And unfortunately, there's not a whole lot we
can do for that. We we can give
diuretics to people and that's the the water
pill that, you know, makes people pee more.
But when we see it at such an
advanced stage, that doesn't usually help very much.
And so it's more just kind of managing
that with,
you know, wrapping them, keeping them elevated, putting

(05:34):
checks under them.
Well, and as you're speaking of things, Penny,
I'm gonna jump in like I'm the listener
and ask questions that I I have been
asked by patients that so they can understand
that. So I wanna go back to shortness
of breath. So what causes shortness of breath
when you're talking about a cardiac
type of terminal illness?

(05:56):
A couple things can cause it. If they
have congestive heart failure, fluid around the heart
can cause the shortness of breath
or also because the heart's not pumping oxygenated
blood,
that can cause shortness of breath.
And then with the fluid, I know I've
certainly had
folks that had little tree trunk legs, and
that was really hard for them to walk.

(06:18):
Yeah. And, of course, oftentimes, those folks also
don't feel like they can breathe very well
when they do put their legs up. So
they're in this kind of forward leaning tripod
stance,
to to relieve their breathing.
They often will have their legs down, which
of course then the edema
does not get better.

(06:40):
So
I know we, at our place have used
massage,
very gently and very specific
type of massage,
to alleviate some of that. Drainage. Lymphatic drainage.
Yeah. And when we're talking about somebody whose
whose legs are just so profoundly
edematous,

(07:01):
you're gonna try to you're gonna you're always
gonna look towards whatever is gonna make them
feel more comfortable. Mhmm. And the breathing is
a biggie. Right? People don't like to not
be able to breathe. That's that's real true
suffering when somebody can't breathe. And so if
they have to have their legs down to
be honest, I
mean, I've had patients who
kept their legs up all day long and

(07:22):
it didn't matter. Like the edema is so
massive that it just it doesn't even help
to keep the legs elevated.
And we would wrap I I I mean,
whenever I talk about stuff like this, somebody
will pop into my brain. Right? Somebody will
pop into my mind. Oh, yes. I remember
this one patient. Mhmm. Her legs were just
giant and we wrapped them tight, you know,

(07:43):
tried to wrap them tight with bandages, kept
them elevated,
and they just it was just it didn't
work. Nothing worked. They were just so huge
and just leaking, constantly leaking, changing the Chuck's
pads out from under her legs,
you know, every half an hour, every hour
because they were
saturated.
Yeah. The body fluid. I I do the

(08:04):
same. I've had I have people pop into
my mind as we're talking, and I can
think of one particular patient that
they actually
the their end was
sitting up in bed with their legs down
on the ground, and that's how they died
because it was the most comfortable position.
I felt had a lot of folks kind
of living back and forth in that chair

(08:25):
to bed existence, but but oftentimes, mostly in
a recliner
because that's what was most comfortable.
I know. I joke that hospice nurses have
to be able to put a Foley catheter
in a patient who's in a recliner
because so often that's where they live. They
live in that recliner.
Yeah. And, you know, sometimes wrapping it is

(08:45):
more uncomfortable
than the actual
weeping edema. I mean If it's weeping,
you know, at least you're getting some of
that fluid out of there. Mhmm. And the
and the wrapping doesn't really help.
Yeah.
That's a tough one because there's just some
things we're not gonna be able to prevent,
but certainly we can

(09:05):
help people with different forms and things and
ideas to try to make them a little
more comfortable.
Right. Right.
And and also speaking about,
you know, the medications that we use to
manage,
people often think that we immediately stop all
medications for our patients when they come on
to hospice and we don't do that. You

(09:27):
know, we do a thorough
medication review
and the doctor will determine what is really
gonna still benefit the person. So we aren't
necessarily gonna stop medications that could benefit the
person.
You know, we might still give nitro tabs
if needed for somebody that has, you know,
is having,
angina,

(09:48):
you know,
heart Chest pain? Chest pain. Yeah. Or diuretics,
like I said, you know, that we still
are gonna,
you know you know you know, I knew
I was gonna say you know a 1000000
times, and here I am doing it.
Only because you're in your head about it.
And you don't know.

(10:08):
I say you know, but you don't know.
I'm actually telling you.
Yeah.
K. Yeah. That's a great point about the
med review because we do have people that
are that come on and they're afraid that
they're gonna have their medications taken away.
I know a lot of times that has
to do with other
side effects too, not just is this the
most effective at this stage of life, which

(10:30):
I've heard our doctors say a lot.
But it makes me think of drugs like
warfarin, for example, that may make you,
a more of a bleeding risk or a
fall risk. And so it's important that we
have the conversation of not just, hey, we're
recommending
that we take this medication off your list,
but here's why.
So as a case manager, I was the

(10:52):
queen of getting people to stop taking their
warfarin, which is also known as Coumadin. It
is a blood thinner and it requires
test blood tests to make sure that your
dose that you have
is effective
and not too much. And so we would
do, it's called a PTINR
and we can do that test in the
home with a little handheld device and we

(11:13):
have to poke people's fingers to do that.
Mhmm.
So immediately I would always talk to the
patient about, you know, do you wanna keep
getting your finger poked
or Yeah. Would you like me to talk
to your doctor and see if we can
switch you to something else and we would
typically switch them to an aspirin and take
them off that. So
that is something that I always like to

(11:33):
do and
but I found, you know, people don't want
to get rid of their medications,
but I've also found that some people are
really happy when they get to. Yes. Because
a lot of times when they come to
hospice, they are taking a handful of pills.
Mhmm. And so and they're choking them down.

(11:54):
They're hard to swallow. You know, you've got
this whole couple of pills.
And so
I found that patients are usually pretty happy
to get rid of them but there are
those who don't wanna get rid of anything
including their vitamins and minerals and their Oh
yeah. Cholesterol lowering medication. I was just gonna
say statins.
Statins, yes, which have terrible side effects too

(12:14):
by the way. Statins are not necessarily the
best drug to take
if you're dying especially but
taking these medications
away sometimes
makes people feel better. Yeah.
And I can't blame them for wanting to
keep taking these things because what are they
told?
Mhmm. You need to take this. Or you
will die. You're told by their doctor,

(12:37):
you need to take this. You have high
cholesterol, you need to take this. You need
to take this vitamin. You're low in vitamin
d, you need to take this. You're low
in calcium, you need to take this. So
then we're telling him, no, you don't need
to take it anymore. Mhmm. What do you
mean? I've been taking these for years. My
doctor said I need to take these for
years. I've been taking these. So
I think where that education piece comes in.
That's why you have a holistic team and

(12:58):
that the patient is a part of the
plan of care. You're not just having that
paternalistic
relationship where you're saying, I know what's best
for you.
Right. We're coming in and saying, here are
some possible improvements in quality of life improvements
specifically
related to your medications, and here's why we're
making these suggestions.

(13:18):
Now there are gonna be times when you're
on a medication that is really expensive,
and Yeah. We've talked about this before. We
only get so much per day per Medicare
patient
Yeah. And we just can't afford it. Yeah.
And there's there's gonna be an evaluation of
whether or not that medication
is still effective, whether there's a different medication

(13:39):
that might work better, and it's less expensive.
And so we've gotta have those conversations.
Right. Right. Is it is it effective? Is
it gonna benefit you? Does the benefit outweigh
the risk for the cost, which we do
unfortunately have to think about? Mhmm.
So now we've gone down a different
That's all of our conversations.

(14:02):
I know.
I know. Nothing is an easy conversation when
it comes to hospice and end of life.
You know, and so so stay wanna stay
with the medication thing again. So that I
think sometimes when we're talking about these
conversations that we have
with people,
probably the best approach is to ask them,
what do you think about taking all these
medications? What would you think about maybe streamlining

(14:25):
your medications?
You know, open ended questions about how they
feel about taking these medications.
Uh-huh. And and what are your concerns about
stopping these medications?
Yeah. How would you feel about having
a reduced pill burden?
Talking about taking handfuls of meds.
Yeah.

(14:46):
Yes. Yeah. My dad had pill burden before
his death, but he
he was he was the kind of patient
who wanted to take those pills.
Yeah. He was he was all about it.
He had his little pill case, and he
took everything he was ever told to take.
It's interesting that he did that, you know,
he he wouldn't do anything else that the

(15:07):
doctors advised, like quit smoking,
but take the pills, take all the pills.
Yeah. I'll take all the pills. No problem.
Taking something is very different than quitting something.
That is true. That is true. Good point.
Good point. And that's a great segue.
Yes. Okay. Yes. Let's do a segue here.

(15:28):
Back to our topic. We're gonna segue
back to what we were supposed to be
talking about the first I know. It's a
it's a great segue into
COPD.
So, Penny, tell us what COPD is
and what that looks like for folks.
Chronic obstructive pulmonary
disorder, which is kind of an overarching

(15:49):
term for lots of different respiratory
diseases.
So like if you have bronchitis
more than I forget how many years in
a row, then that's considered COPD.
Emphysema,
COPD.
So anything that is is caused by
your lung failure basically is is under the

(16:10):
umbrella of COPD.
Although we typically refer to
things like cystic fibrosis
as cystic fibrosis,
That's its own disease, but it has the
same type of well, not necessarily the same
type
of of symptoms. But COPD
causes people to have
a reverse in their respiratory

(16:31):
drive.
And I should have studied that before this
so I could remember exactly how to say
this, but
so we are
not driven to breathe by a lack of
oxygen, we are driven to breathe by a
presence of carbon dioxide.
And when a person has COPD,

(16:52):
their switch gets flipped.
And
so then if you give them too much
oxygen,
it's it can actually cause them to suffer
shortness of breath or to have respiratory failure
because now the body is responding to,
too much oxygen in the system instead of
too much carbon dioxide, if that makes sense.

(17:14):
Mhmm.
And and hopefully nobody's gonna be, like, coming
back at me by, yes, I did all
wrong, but
that's kind of the
the whole idea. Right? Basically,
COPD means a person
is very very short of breath, they have
air hunger where they can't breathe very well,
again fatigue,
again
chair to bed existence,

(17:36):
tripoding so they can get their their breath
sitting like a triangle,
tripoding
to catch their breath,
very uncomfortable.
I would say
out of the patients that I've cared for,
pain is bad, but
air hunger is worse.
People
who can't breathe

(17:56):
really, really suffer.
Mhmm. They panic. They have high anxiety.
And that's such a vicious circle, that anxiety,
because, of course,
physically, you are struggling to breathe.
So it is not in your head that
you can't breathe. You can't breathe,
then you become anxious. Once you're anxious, it's

(18:17):
harder to breathe and round and round we
go.
Exactly. Exactly.
And so the response is people wanna turn
the oxygen up, and that doesn't help. That
does not help. Right. We use lower flow
oxygen for COPD patients.
They can also have the same types
of swelling in their legs, in their hands,

(18:37):
same type of thing, circulation is is poor.
They can still have those types of symptoms
as well.
But, again,
morphine, gold standard. That's what we use to
treat COPD steroids. Steroids really help. In fact,
I remember before I was a hospice nurse,
I worked in a clinic, and I would
have COPD patients who would come in, and
they want more steroids, more steroids, more steroids,
because steroids can make them feel so good.

(19:00):
They can breathe so much easier when they
have steroids,
but the side effects of steroids
definitely
prohibit
long term use. We cannot use steroids ongoing
for long term. Usually what we'll do is
we'll give steroids in a in a big
dose, like a big blast, and then we
taper them down off of them, but they

(19:21):
can make brittle bones. So if people have
long term steroid use because of COPD, oftentimes
they'll start having pathological fractures from that. I've
had patients who have pathological fractures because they
have brittle bones
from from steroid use. So I'm not even
counting how irritable you can get with your
caregivers on high doses of steroids.

(19:42):
Irritable,
insomnia,
yeah, agitation,
giving steroids, you gotta give earlier in the
day.
Again, those steroids are one of these drugs
that are
really
fantastic
sometimes
for people who are
fatigued
and they're still far enough upstream from the

(20:04):
end of their life that they just wanna
have a little more energy and they wanna
have an appetite.
Mhmm. And so we'll do a little steroids,
perks them up. They feel so much better.
But, yes, if you give too much,
they can be agitated. It can cause problems
with sleep,
severe insomnia.
Give them earlier in the day. Steroids are
also good for pain relief

(20:26):
too.
So, yeah, we love steroids, but can't can't
use a lot for a long time because
it could be detrimental.
Oh, and I think this is a great
time to pause and get a little deeper
into morphine.
Why and how does morphine work? People are
so freaked out about morphine.
We know in hospice, it is the gold

(20:46):
standard, but what makes it the gold standard?
I think now would be a good time
to explore that.
Well, people
will read the box of morphine and they'll
see on there where it says may cause
respiratory distress and that's their panic. Right? May
cause respiratory distress. Respiratory
distress
and that's their panic,
right? That's the way it works. It slows
the breathing down so people can get their
breath.
It's also,

(21:07):
as far as opioids go, probably on par
with any other opioids that we give for
for pain. And by the way, other opioids
can work
for,
shortness of breath as well. But morphine liquid
works very fast,
you know, put in the mouth works very
fast,
and it's cheap.
Mhmm. And, again, you know, we hate to

(21:28):
say it comes down to the almighty buck,
but when when it comes to hospice, we
aren't reimbursed at a very high rate. People
don't understand that. We could do a whole,
I don't wanna go. I'll take us down
another rabbit trail if I do this. I
don't wanna talk about the difference between how
hospice is reimbursed, but but it is, it's
an inexpensive drug. It's tried and true. We've
used it for decades,

(21:48):
centuries probably. Right? Like, they use
they used,
morphine opioids
way, way long time ago. But
it it just works very quickly, and it
eases
the respiratory
rate to help people catch their breath. And
that's why we love it. And that's why
it's the gold standard.
Yeah. I was actively listening to you, and

(22:08):
I lost my thought about morphine. I'm sure
it'll come back to me.
I'm thinking about yeah. It it's used for
so many different things. It's used for the
pain. It's used
absolutely used for shortness of breath. We're talking
about really
small doses. And I know I've heard you
say this, Penny,
what equivalent of the dose of morphine that
we usually start on? I know you've, you've

(22:29):
equate equated that to like a Vicodin.
What that's another thing I think is a
great a Percocet.
Yeah. It's a great equivalent.
It's about the same as a Vicodin, but
it's actually less than Percocet
because
oxycodone
is what's in a Percocet and and that's
7.5
milligram equivalent to 5 milligrams of morphine. So

(22:50):
if you give 5 milligrams of oxycodone, that's
equivalent to 7.5
milligrams
of morphine.
It's more potent
per milligram
than morphine is and people
often do not have a problem with Percocet.
Exactly. Percocet,
but morphine, no, no, no. And we usually

(23:11):
start people who are opioid naive on 5
milligrams of morphine. Mhmm. That's what we usually
start people at. So it's Which is literally
just drops if you're doing liquid. It's not
very much at all. It's a 20 milligrams
per ml, so it's 0.25
ml.
And that's another reason why we love it
because we can give it in the mouth.

(23:32):
Mhmm. And somebody doesn't even have to be
swallowing
to be able to have the effect because
it can just
drip down the back of the throat slowly
and seep in and absorb in
and and be really effective in a small
dose.
And I don't want people to have unrealistic
expectations. You're not gonna just put this in

(23:53):
your mouth and it works as fast as
the nitro. It's not instant.
Right. Right. But it will quickly though. It
does work it does work quickly.
And people it's so
I don't want you, Hallie, but
maybe you haven't had this experience as a
social worker. You've pro you've probably seen this.
So where somebody's hesitant to take it and
we finally get them to agree to it

(24:13):
and it's just like a miracle for them.
Mhmm. They're like, oh my god, that works
so well. I could breathe again. I feel
so much better. It doesn't take a whole
long time. Like you say, it's not as
fast as nitrile, which is instantaneous practically.
But morphine 15, 20 minutes later, they start
to have an ease in their breathing and
they feel so much better. And for the
symptom of shortness of breath, that's why you

(24:34):
have a holistic team. You have your nurses
and your docs that are the experts in
medication, and they're gonna talk you through that.
To your point about being hesitant to take
medications, we've had folks take literally a drop
of it while the nurse is there to
make sure that they feel comfortable
being able to take it and know that
it's not gonna have this huge effect.

(24:54):
But then
we have the social worker side, the counselor
side will talk you through all of the
things that will help you with your breathlessness
while you're waiting those 15 to 20 minutes
for it to take effect.
Right. That could be a fan. That could
be
reading a a poem to yourself or playing
music or doing a guided meditation or breathing

(25:15):
exercises
while you're waiting for that medication to take
effect.
I'm so glad you brought that up because
as a nurse, I do always educate about
the medications, but non pharmacological
interventions
are also
utilized in hospice
very well. They're very effective.
And so like you say, a fan in
the room, cooling the room down, they can't

(25:37):
breathe in a warm stuffy room. The tripoding,
helping people to sit up, lean over can
help.
So, yeah, non pharmacological
interventions are very, very effective for many of
the things that
we treat. Mhmm.
Well, and speaking back of you don't have
COPD, do you?
Speaking of COPD,

(25:59):
what kind of death would you expect to
see before active dying? What kind of at
the very end are we expecting to see
with folks?
So we're gonna see an exacerbation of shortness
of breath. They're gonna have much more difficulty
breathing. People with COPD are usually going to
have oxygen,
because they want to. I always say oxygen
is is for comfort in hospice and not

(26:20):
everybody is comfortable with it. The exception is
COPDers they love their oxygen. So they're usually
going to be using oxygen.
They will probably be in a recliner or
sitting up in their hospital bed most of
the time because you really can't breathe when
you're laying flat. Also, we could see hypoxia,
which is a lack of oxygen to the
brain, which can cause extreme confusion,

(26:42):
agitation, confusion. We do see that. Had several
patients like that who were so confused and
agitated. And, again, cranking up the oxygen isn't
necessarily going to help them, so we often
will have to treat them with haloperidol,
which is an antipsychotic
or lorazepam
to calm their anxiety. Lorazepam and morphine together

(27:02):
are are just a really wonderful combination of
drugs
to help people be more relaxed and breathe
better.
Mhmm. But, yeah,
COPD patients can be climbing the walls because
they're they're so short of breath, and then
the hypoxia can really cause them to be
so confused and agitated.
Also,
we are likely to see more of the

(27:22):
kind of,
like,
blue blue modeling,
hands, feet,
nose, ears,
lack of tissue perfusion where oxygen is not
perfusing through the body. So we're gonna see
more of that kind of loss of color
or blue or marbled color. Oh, circumoral cyanosis
where they're kind of pale around the mouth.

(27:43):
That's really normal as well.
Yeah. I don't think we mentioned that in
the heart failure or heart disease part, but,
yeah, the, That would be something in those
2. Cooling in the extremities, not, you know,
having diff more difficulty with circulation in your
extremities, that kind of thing.
And and that can happen with all diseases,
but especially

(28:04):
with anything that's really impacting greatly impacting the
circulation of oxygen through the through the blood.
Yeah. And both of those diseases, and specifically,
I'm thinking about COPD,
we are going to see folks
as they typically would
because we're using more symptom management. They're going
to probably be sleeping more.

(28:24):
And, you know, that that's it.
Yes. We're likely to see more shortness of
breath,
and that's why it's great to have this
extra support of hospice because we are the
experts in that kind of symptom management,
and we can move quickly to change the
medication or adjust the medication to make sure
your symptoms are covered to the point that

(28:45):
you want them to be, because maybe you
don't.
That might even involve things like a nebulizer,
which are a little less
Let's talk about nebulizer.
Oh, yes. Yes. Yes. Thank you very much
for reminding me. That's another thing. So people
will often come to hospice with their Spiriva
inhaler and their little albuterol inhaler,

(29:06):
and they're married to them. They use them
way, way more than they're supposed to. Again,
albuterol
is a steroid,
and they shouldn't be using that very often.
And then it's a rescue inhaler, and so
they are going to.
We don't like the Spiriva because it's it's
a powder. It's a capsule that you the
inhaler

(29:27):
punctures the capsule and releases a powder,
very, very expensive. Another one. It's expensive.
But also
people who have COPD
lose their,
ability to,
inhale those. Like, they they don't have an
effective,
inspiration anymore. So it's hard for them to

(29:47):
actually breathe those in. And so we have
to usually switch them over to a nebulizer,
which is
it's a like a steamed
medication
and it'll be albuterol,
epetropium,
combination of those 2 sometimes
that they can we call it a peace
pipe because it looks like a peace pipe

(30:08):
and they could just inhale the the steam
and that's more effective. But getting people to
switch over is often
a challenge. They don't wanna let go of
the rescue inhaler even though really it's not
gonna be as effective for them because they
can't
suck that into their lungs anymore. They don't
have the ability to suck it in as
far as they need to for it to
work. Suck it in and hold it.

(30:30):
I mean, that's what's great about the nebulizers
is as you're changing, as you're
declining,
it's a much more passive situation. So we
even have, like, the masks. If you're physically
not able to hold the peace pipe,
then we can put a mask on you
and you can just have that just as
a passive breathing option

(30:51):
that does open up your airway and relieve
that and also get out some of that
gunk because you're also getting that kind of
phlegmy
Yeah.
Congested feeling.
Yeah. That'll loosen that up better than the
inhalers were will because it's it's steam.
I'm thinking, I'm the nurse and you keep
bringing up the, interventions that I'm completely forgetting

(31:11):
about.
Only because I've been around amazing nurses, and
I'm here
to support what they're doing with the patients.
I mean, again, holistic team. I am not
the one Yes. Making these recommendations.
I am
supporting the education that the nurse has given.
That's really one of my roles is to
support. Oh, hey. I'm at this visit, but

(31:31):
I see that you're short of breath. Well,
let's talk about what the nurse has offered
you and see if that might work in
this situation. And then,
you know and same with if a nurse
is there and they're seeing someone short of
breath and they're giving medication, they can say,
okay. What did your counselor talk to you
about as far as the non pharmaceutical
options?
Right.

(31:52):
Teamwork. Yeah. Teamwork makes dream work.
My least favorite phrase. I forgot.
But I remember everything else about COPD. I
think I got I think we covered it.
No. I think that's pretty good. Yeah. Steroids.
I didn't think of steroids, steroids, inhalers.
And COPD
is
really I mean, heart disease also, but COPD
is the first one

(32:14):
on our list that it kind of leads
us into the lung cancer discussion, which is
we're talking about diseases that some folks feel
like are self inflicted. They're,
lifestyle choices that came to this.
There are health options. You know, some of
this is genetic too,
And regardless of how you get to this
disease, regardless of how you come to hospice,

(32:36):
we are going to treat you the same.
But I wanna make sure we're clear
with folks that sometimes people get the wrong
impression that it is self inflicted,
regardless if it is or not, we're treating
you the same. Yeah, people can get lung
cancer without ever smoking a cigarette. I want
to touch on something else about COPD as
far as what dying looks like.
Dying looks like a roller coaster for people

(32:59):
with COPD
and we often will have patients with COPD
who come on to hospice in the fall
when it the weather's changing, they're getting the
flu, they're getting sicker
and then come late spring, summer, they improve,
and now we think they're gonna live longer
than 6 months and they're not gonna be
on hospice anymore. So this is one of

(33:19):
those diseases where we do see long length
of stay
and frequent flyers. They come on, they go
off, they come on, they go off.
COPD is very, very
hard to prognosticate,
and many of our patients with COPD will
end up in the hospital on event
because even if it's not their plan to
be,

(33:40):
in the hospital on event,
They eventually when they get this severe shortness
of breath, they call 911,
the paramedics come,
and let's transport to the hospital, let's intubate.
You know, that's what happens often with COPDers
because that
not being able to breathe is such a
horrific
feeling for people. Suffocating to death is awful.

(34:02):
And so I've had lots of patients who
ended up back in the hospital, in the
ICU, back home again on hospice, back in
the hospital ICU.
Very, very much the roller coaster
hospice stay.
And it's hard for caregivers to watch that
too. I mean Yeah. Your loved one is
going through this thing that's suffering and you
have been taught all your life that if

(34:24):
there's a medical emergency, call 911.
Right. So it is your default to do
that. It doesn't matter about our education.
Most of the time, people do default to
that, and,
you know, it's okay. Yep. We're not judging
you for that.
Right.
Alright. Let's move on to our next

(34:45):
disease.
Alright. So we're gonna slide right into lung
cancer since we're already talking about respiratory issues.
Lung cancer,
so yeah people can get lung cancer without
ever having smoked, they could be
they could get it from secondhand smoke or
they could get it just because it's genetic
and they can and they can get it
from that.
Lung cancer will typically metastasize

(35:07):
to the bone in the brain,
so we can start to see pathological
fractures when people have lung cancer. We can
see confusion, agitation
because of the brain involvement.
It can be painful.
Lots of times it causes back pain. I've
known of patients who died from lung cancer
who just thought they had a backache
from, you know, lifting too much furniture

(35:29):
during a move and Mhmm. Come to find
out they have lung cancer.
Symptoms are gonna be similar otherwise as far
as respiratory
to COPD. They're gonna have lots of shortness
of breath with lung cancer.
They can have the same kind of hypoxic
reaction where they're not getting enough oxygen to
the brain, so they're that's causing confusion as
well.

(35:50):
Treatment's gonna be similar.
They're gonna be getting steroids. They're gonna be
getting oxygen.
They're going to be getting inhalers,
nebulizers,
to that type of
thing. And steroids, I hear, is very good
for bone pain specifically.
Yeah. Steroids is excellent for bone pain. Absolutely.

(36:11):
People have meds to the bone.
Steroids work fantastic for that pain.
And that would be an instance where we
wouldn't be probably more of the burst symptoms
like respiratory, but like a low dose
ongoing. Yeah? Yeah. Yeah. Usually,
dexamethasone,
4 milligrams twice a day early in the
morning and late in the afternoon so that

(36:32):
it doesn't keep them awake.
Yeah. Lung cancer does seem to be one
of those tricky ones where folks
often won't find out that they have it
until really late because
the symptoms are mild maybe
or
folks are just hesitant. They're the type that
are very
stoic
and don't think anything is wrong. And then

(36:52):
by the time they go in to find
out, it's it's really too late.
So the earliest sign of lung cancer is
usually going to be a bloody cough,
coughing on sputum that has a little blood
blood tinged
sputum in there. And then again, you can
have back pain with lung lung cancer.
It's another sign. So interesting. All these three

(37:13):
diseases we've talked about so far. How many
folks have you had that have this per
slip shortness of breath breathing, and you ask
them if they feel shortness of breath and
they they say no?
Yeah. They live they live their o two
sats are in the seventies. They live in
the seventies.
That's what we say. They live in the
seventies. They live in the eighties. That's what

(37:33):
they're used to when they're, you know, when
you check-in o two sats, they're low
and people might freak out. Oh my god.
75%.
That's what they're at. That's what they live
at. They're used to that. They do compensate
with the pursed lip breathing.
Yeah. So yeah. That's exactly why I bring
that up is because numbers, people can be
just so
wed to these numbers,

(37:55):
and it really is about how are they
feeling.
Right. Exactly.
You know, and, so speaking of pursed lip
breathing, that is just pursing your lips and
breathing little
short breaths to help you breathe better.
So speaking of lung cancer being caused by
smoking, which it can be. I mean, it
is the number one cause of lung cancer,

(38:16):
but people can get lung cancer
without smoking.
Smoking also is the number one cause of
bladder cancer.
Interesting. I did not know this. Don't know
that. Yep. Yep. It is the number one
cause of bladder cancer.
You know, our whole vascular system runs throughout
our whole entire body, and we're taking nicotine
and it's going everywhere, and it it can
cause bladder cancer.

(38:38):
Yeah.
Coming back to smoking,
I'm thinking about
so many of our folks that continue to
smoke while they're on hospice.
Yes. And so I wanna talk about 2
different things with this. Number 1, we're not
gonna ask you to stop smoking.
It's too late anyway.
It's really not gonna help. If it has
sailed, it's it's too late. But I also

(39:00):
wanna talk about the fact that,
oxygen
talk about oxygen safety for us. Right. Oxygen
safety. So oxygen
is flammable,
and people will say, no. It can't it's
not flammable. It won't blow up. Like,
tell that to my patient who burned down
his trailer that he was living in by
smoking a cigarette.

(39:21):
And here's something interesting. It's not flammable it's
an accelerant or something like that. Accelerant, nothing
I I don't have an argument with the
patient about Yeah. I don't know the whole
I don't know the whole chemical thing. All
I know is smoke a cigarette in the
presence of oxygen go boom. It happens all
the time. We have had many patients
who have caught their faces on fire. Yes.
So, yeah, flammable or not, it is

(39:43):
it is
there is a capacity for fire to start
when you smoke. Yes. Or and I and
I wanna say,
not just smoking. So at my agency,
we were having a rash of people
catching themselves on fire, catching their places on
fire by smoking with oxygen. So we really,
really started focusing on,

(40:04):
making sure that people knew they shouldn't smoke
with fire
or smoke with oxygen.
Well, then,
that was our that's what we leaned into.
Like, don't smoke. Don't smoke.
Then we had a patient
on Halloween who wanted to make it spooky
for his grandchildren,
and he lit a candle
and caused a fire.

(40:25):
And we realized
that we were leaning too heavily into the
don't smoke with oxygen and really it should
be no flame at all. No spark, no
flame.
You know, we have people who live who
actually heat with wood.
I actually heat with wood, but we have
people who heat with wood who would be
sitting close to their wood stove
with their oxygen on.

(40:45):
And the other thing about oxygen
with smoking is you can take off your
nasal cannula, that's little prongs that go in
the nose to
deliver the oxygen.
You can take that off, but you're you
can still have oxygen
around you. Yes. Thanks for talking about this.
And so you really have to air out
before you smoke.

(41:07):
Don't just take it off,
turn the concentrator off. Yes. Turn it off
for what? 10 feet away from it at
least, 10 feet away,
and and wait for a moment before you
smoke,
your cigarette because that oxygen can still be
there and can still cause fire. So Yeah.
And we talk about, you know, not using,

(41:27):
not so not only smoking, not only open
flame, but electric razors
can be dangerous around smoking.
Anything with a spark.
A spark. Right. Mhmm.
The interesting thing is they always say don't
use any petroleum
products. Mhmm.
There are has never been, from what I
heard from our educators,

(41:48):
any situation that's documented where a fire was
able to be spontaneously
started
by the presence of
a petroleum product such as Vaseline and oxygen
in the same environment.
But that's always when they're like, don't use
petroleum based products.
Probably if you were smoking or there was
an open flame or a spark

(42:09):
and there was petroleum and oxygen, yes. Mhmm.
But it's still one of those things where
they say don't do it, and there's never
been any evidence
that that it can cause
in fact, our education department did their own
little test trying to
start a fire with oxygen and
and some petroleum based products that we were
using. Because we had a patient

(42:30):
who was smoking in her bed,
she had oxygen,
and she set the oxygen
down next to her
and,
caught fire on her nether regions.
And she they were using a product on
her skin
that was,
petroleum based. And so we were thinking, did

(42:51):
that cause the fire? Mhmm. And they did
all kinds of testing, and they could never
reproduce any kind of flame with oxygen in
that product.
So Yeah. I know they always recommend us
to, tell folks to use, like, beeswax
ChapStick.
Yeah. Mhmm.
Yeah. I both of us. You and I
both have had patients that have had horrific

(43:12):
outcomes from smoking and oxygen. It's
it I can't describe it. It's awful. And
they
I've had a patient that
didn't die right away
after that. We had one that was on
a vent in the hospital in the ICU
after that.
Yeah. It's traumatic. And that's just if if

(43:33):
they're the only ones that get hurt. I
mean, that's not even mentioning like you're saying,
burning
a house down or burning an apartment building
down. Where there's neighbors. Yes. Yeah. It can
cause harm to other people in the area.
Yeah. So if if you're someone that is
worried about that and you just cannot give
up your nicotine
or,
you know, smoking, but you need oxygen,

(43:55):
consider
if you can at least take it off
for a few minutes, air yourself out, turn
that oxygen on, step outside.
And if you can't,
try to consider another way to consume nicotine.
Use Not vaping. Not vaping. Not vaping. No
no sparks.
Use thing. Yeah. Nicotine patch. Use the, you
know, the chew patch. Gum.

(44:17):
Yeah. Yep. Nicotine gum, like anything else because
Yeah. You're putting other people in harm's way,
not just yourself.
But let's circle back to letting people smoke
who have lung cancer or COPD.
Mhmm. You know, patients' families are so worried
about that. Like you say, the ship has
sailed.
It's it brought them
there is probably nobody in the whole world,

(44:39):
at least not in the US, who doesn't
know that smoking can cause
COPD, can cause cancer, can cause death. Mhmm.
They know it. Yeah. But it is so
highly addictive, and it brings them pleasure. They
don't wanna quit. My dad did not wanna
quit. He died from a smoking related disease.
It's it brings them pleasure and at the

(45:00):
time of their life when they're at the
end of their life, let them have their
little pleasure. Yeah. As long as they're doing
it safely. Yes. As long as there's no
oxygen,
let them do it. It's it's really
it's not gonna hurt anything. It I will
say I've educated my patients before on this.
If you're feeling short of breath

(45:21):
and you smoke a cigarette, you're gonna feel
short of breath. It's not gonna make you
feel better
respiratory wise to smoke. Although I've had people
argue that with me that they feel better
while they're smoking. Well, it's probably psychological
because of the
anxiety reducing.
Mhmm. And the addiction part of it. Smoking

(45:41):
and the addiction part of it. Yeah. I
had a patient who was 42 years old
with lung cancer
and she smoked.
She'd go out back and smoke. And when
she could no longer hold the cigarette,
the aids would hold the cigarette for her
so that she could smoke. Because she'd be
slumping over and dropping the cigarette in her
lap, and the aids would hold it for
her so she could smoke. It's the only

(46:02):
thing
that brought her
pleasure anymore. You know? She couldn't do anything
else.
So yeah.
I will add on for folks that may
end up having to use placement for
care for their loved one
that almost no facility anymore.
Very, very rarely could I find a facility

(46:24):
that allows for smoking.
Yeah. They used to have, like, a smoking
area, but they don't even they don't do
that anymore. In fact, I think there's only
home.
One
that's not an adult family home
in anywhere in the big area that I
serve that does allow smoking. So
it's pretty rare,
and that's a hard transition. You're already being

(46:45):
moved into a facility,
and then you're gonna have to give up
smoking too, and it's Right. It's a lot.
So that's just something to consider. I'm not
saying you have to quit. I'm just saying
as a system of care,
consider that that is something you will have
to look at if you're looking at a
placement option.
Right.
Probably the last thing unless people think about,

(47:06):
but it's important.
And I don't know about your agency,
but so nicotine patches aren't generally considered a
covered medication
for hospice patients,
but we typically
will make an exception and cover them for
people who are
Especially if it's a placement situation. Yeah. I
mean, it's case by case, but Right. We

(47:27):
have done that. Yeah.
And I mean, it's a comfort med, so
it really kinda should be covered by everybody,
but I know not everybody will cover them.
Mhmm.
But
sometimes they get covered.
Yeah.
Alright. The next disease,
just as we're talking about cancer and we're
finishing up this conversation, before we started, we
had been talking about breast cancer.

(47:49):
Oh.
And the reason this So we're not gonna
take a deep dive into every cancer there
is because there's too many cancers. No. But
But we are touching on kind of the
ones that we see that are most
significant.
And, specifically,
what we were talking about was when people,
for one reason or another,
choose or don't have the option,

(48:10):
to get this treated
and how that can result in
some catastrophic
symptom management.
Right.
So tell us a a story, Penny. Tell
us about a breast cancer story.
Okay. So fungating tumors
look like fungus. That's why they're called fungating
why it's called fungating breast cancer because it

(48:32):
looks like fungus. It's it's hard and
raw and
very, very painful,
can leak,
fluid out of it,
can grow,
and I had 2
patients who were
at the same time on my caseload who
had fungating breast cancer,

(48:53):
fungating tumors. And before you get too much
further, just for clarity for folks outside of
the hospice world,
most people I think think of cancer internally,
this is something that is breaking through the
skin and is outside of the body.
Yeah. And and lots of cancers can do
that by the way. I've had a lung
cancer patient who had little tumors all over.
Oh. Oh, yeah. Yeah. But my lung cancer

(49:15):
patient had little tumors protruding all over her
little body. They were everywhere.
But, yes, people think cancer is internal, but
it can be external.
Mhmm. And that's what this fungating breast cancer
is.
It's external,
and it can grow very rapidly.
And I had 2 patients on my caseload
at the same time. 1 had undergone
chemotherapy

(49:35):
drugs
and nothing worked so she came to hospice.
Her tumor
was
all the way in both breasts and all
the way around into her back.
Oh, gosh. Very, very, very painful.
And
she died pretty quickly after she came on
to hospice. She didn't live for a very

(49:56):
long time. My other patient
was really into
holistic medication and had been going to a
naturopath
for years
and keeping her cancer at bay. Mhmm. Her
tumor was quite a bit smaller,
and she was treating it with food grade
bleach.

(50:16):
Wow. So gauze in food grade bleach
and put that on her tumor
Oh. And kept that at bay. And it
never got so had the one that was
getting bigger, bigger, bigger all the time, and
this one who's
was growing very slowly. And I actually got
an order
from the doctor for my other patient who

(50:37):
had the big one to use the food
grade, it was food grade peroxide,
to use that on hers.
But unfortunately,
she died before the daughter could ever even
go and get any of that. So my
other patient lived for quite a long time
and she was very resistant to taking any
medications. She did not wanna take any any
opioids
at all. She was just

(50:58):
drinking
coconut water before coconut water was in fashion.
She was doing just all kinds of holistic
naturopathic
things.
Towards the end, the pain didn't exceed
the ability for anything natural to work for
her, and I was able to convince her
to use a fentanyl patch. Mhmm. And that
worked for her, and and she was comfortable

(51:20):
at the end when she died. But I
just the comparison between the two women who
treated their cancer is completely different and how
one went,
you know, versus the other one was so
so such a stark comparison for me. It's
interesting.
Mhmm.
Yeah. I've definitely had folks that came to
us after

(51:41):
holistic care and or
religious object objection to
modern medicine
and both with
fungating tumors,
unfortunately.
And, yeah,
I don't think we're here to say
what you choose to do and how you
choose to treat it is right or wrong.
There's no right or wrong. Sometimes folks that

(52:03):
do holistic medicine
don't stave off their cancer, and they die
just as fast.
Right. Sometimes folks will live for 10 years
treating their cancer and going in and out
of remission. So it really has to be
a decision you make about your body
and with your doctors or, you know, with
some kind of informed decision making.

(52:24):
You just never know.
Right. Right.
I wish that that one way would work
for everybody. You know?
Yeah.
Me too.
But I think the reason we brought that
up is because we wanna say it doesn't
matter.
We're going to still treat your symptoms
the way that you want them to be

(52:44):
treated, like, to Penny's point
is we're going to allow you to continue
to use your holistic medicines
Yep. And offer
modern
medicine for comfort if and when you're ready.
Right. And if you never are, that's okay.
Mhmm. Yeah. Exactly. We let we meet people
where they're at.
Yeah. They get to they're steering the ship.

(53:06):
They get to decide
Mhmm. What they wanna do.
Alright. Well, let's get into
cirrhosis
quote of the liver.
Cirrhosis of the liver.
This one, I think, is one of the
bigger
it's not controversial for us, but I think
for the wider public can be controversial because
people think that cirrhosis is only from

(53:29):
drinking yourself into that state, which is not
accurate. No. So tell us about cirrhosis. Don't
drink. Yeah. Cirrhosis of liver, liver failure.
Basically, your liver is failing.
So your liver is the,
it's the toxin cleaner of your body. It's
the your your filter in your body that
filters out your blood and filters out everything

(53:49):
bad out of your blood.
And
when people get cirrhosis, which they can get
from drinking too much alcohol, and they can
also get it
never having drank alcohol, which is more uncommon,
but it can happen. So don't assume that
somebody with cirrhosis of the liver
is necessarily
somebody who is

(54:09):
a drunk. Right?
Somebody living on the street pounding down mad
dog 2020, 247.
It's not necessarily caused by alcohol.
So people with cirrhosis of the liver are
going to it it's another roller coaster type
of progression towards the end of life, and
that's because the liver to some degree has

(54:30):
an ability to regenerate itself. So sometimes they'll
get better, and then they're worse again, better,
and then they're worse again.
So
we see with cirrhosis,
fluid building up in the abdomen that can
happen.
And by the way, we we can also
see fluid building up with lung cancer too
around the chest,

(54:50):
or heart disease,
and we can drain that off. So in
the in cirrhosis, it's called ascites, and people
will literally look like they're
10 months pregnant. They have huge, huge belly.
It's all
fluid that's in there, and that can be
drained off.
They can go into interventional radiology and have

(55:10):
that drained off, or we can put a
tube in, called a Plurex drain or an
Aspira drain
that they have in there permanently, and then
we can drain them at home to help
people stay at home.
They get,
levels of ammonia because the filter is not
working anymore. We're gonna see more levels
of ammonia rise in the bloodstream, and that

(55:31):
goes to the brain, and people can be
extremely confused and agitated.
Very, very, very, very confused and agitated. They
are not themselves at all when they're like
this.
Mhmm.
We can also see jaundice, which is kind
of a yellowing of the eyes. Usually, the
eyes first are where you're gonna notice it
where the whites of the eyes become very

(55:51):
yellow
and then the skin yellows.
That is not really necessarily painful, but it
can cause a lot of itching.
So cirrhosis of the liver can cause pain.
It's not as painful as some other diseases,
really more than confusion,
agitation,
and the ascites.
Mhmm. The ascites can cause pain, all that

(56:12):
pressure, and the gut can cause pain. And
shortness of breath. And shortness of breath. Yes.
Ascites can cause shortness of breath because, again,
you got all this fluid in the belly
pushing on everything inside, and that's gonna make
you have a harder time breathing.
One of the drugs that we use to
treat cirrhosis is
lactulose,
which is a disgustingly

(56:33):
sweet thick syrupy medication
and I know how disgusting it is because
my daughter was treated with lactulose when she
was a toddler
for constipation
and I tried it and it was
disgusting. She loved it
It was horrible.
But the way that it works is it
causes people to

(56:53):
basically shit constantly because that's how they eliminate
these toxins from their blood
is by shitting. And so
they don't wanna take it because it causes
so much diarrhea.
So and they have to drink so much
of it, and it is disgusting. If you're
not 4 years old,
it's disgusting.
So they don't like taking it.
And then sometimes people get beyond the point

(57:15):
of where it's gonna work anyway.
So we can do
Aspira drains, like I said, or Plurex drains
for the fluid. We can do the lactulose
if they'll take it,
They won't.
And then we can do
paloparidol
antipsychotics
for the agitation.
We can do opioids for the pain, if
they're having pain, for the shortness of breath,

(57:38):
as you pointed out.
Yeah.
And as people are listening, they may think,
well, why can't you just
use that drain like a faucet and keep
draining it out?
I know
for our folks that have gone through this,
personally and professionally, I've had folks that in
my life that have had to deal with
this.

(57:59):
There comes a point where,
number 1, it's it's
painful
if you don't have the drain already and
you have to get
jabbed.
But, also,
it's not one big
pot of fluid. Like, sometimes,
there's tiny little fluid pockets everywhere, and there's
no possible way to drain

(58:21):
all of that because you'd be stuck 50
times.
Yeah. We can drain the majority of it,
but not all of it. And also, it
gets worse and worse. It just you you
would never be able to keep up with
it.
It just continues to
to get worse.
So people
might come on to hospice, they're still going
to interventional radiology

(58:41):
once a week.
And then
after a while, we're draining that drain in
their home
every day Mhmm. Because there's so much fluid
building up. And you can and you can't
you can't drain off too much at one
time too because that can cause problems as
well. People can get very hypotensive,
meaning their blood pressure will really drop.

(59:03):
It's dangerous to drain off, and it's a
it can be a source of infection.
Yeah. And you're also draining off
essential,
elements like sodium and potassium and other Right.
Chemical issues that happen. So Right. It's not
just as easy as, you know,
turn on the faucet and let it drain.

(59:23):
Right.
Right. It's not that easy, and and it
can be painful to drain it too. It
can give them relief, but it can also
be uncomfortable
to drain it off.
So yeah, cirrhosis is one of the I,
I don't like cirrhosis.
I don't like it. I don't like any
diseases that are terminal, but cirrhosis is especially

(59:44):
bad. And I've had patients who were lovely,
you know, and then all of a sudden
they're not. And then they're back to themselves
again, and then they're awful again. And it's
just such a roller coaster. It's really, really
hard for the family
to to see somebody go through that. And,
you know, I did a video.
There's a woman on TikTok
who

(01:00:05):
is has had
liver failure because of drinking too much alcohol,
and she was a young woman.
And most places will not do a liver
transplant unless you've had at least 6 months
to sometimes a year of sobriety before they're
willing to do a liver transplant.
Mhmm. She was in a teaching hospital where

(01:00:25):
they actually did took it on a case
by case basis.
And she was a single mom,
young woman.
She got a liver transplant.
And I stitched her video to talk about
the fact that,
you know, liver disease,
cirrhosis,
is caused
by self harm, by drinking too much alcohol,

(01:00:47):
but alcoholism
is also a disease. So I like the
fact that
that they can do liver transplants
sometimes for people who have ruined their liver
by drinking too much alcohol.
And there were people in the comment section
who absolutely
vehemently
disputed that and said if you drink yourself

(01:01:08):
to death, then you should not get a
new liver when other people are waiting for
a liver. Now I never said that they
should be prioritized over somebody who's young, who
has,
fulminating cirrhosis that never started from alcoholism it
started by something else or some other reason
for their liver failure. I've never said they
should be prioritized.
I'm just saying they should be given the

(01:01:29):
chance if that's available for them
And people were just a whole other episode
about donations. I have a lot of soap
boxes about that.
You just, you know, you drank yourself to
death. You don't deserve to have
a new a new liver.
But there again, we're looking at other diseases
where people have
a person can have idiopathic

(01:01:50):
pulmonary fibrosis is what my dad had
and qualify for a lung transplant.
But they caused it by smoking. So what
is you know, it's almost like there's there's
more
stigma
around
drinking too much and causing your liver to
fail than there is around other things that
cause people to have health issues. Mhmm.

(01:02:14):
Very stigmatized.
Well, we didn't go through prohibition for nothing,
I guess.
Yeah. You you cut out there just for
a second, so I don't know if you
heard me. I I have so many soap
boxes about
Oregon donation, so I don't wanna go off
on that. Talk about a rabbit trail. I
could go in a whole other state with
that.
But coming back to the drinking and having

(01:02:36):
it be self inflicted, I mean,
as a social worker, I'm thinking about
why people are drinking
and the likelihood
that something
not great has happened to cause them to
use that as a self medication.
Mhmm.
Why we use that as a a moral
righteousness that they can't

(01:02:57):
get healed or get care or get a
donation, you know, organ transplant,
it's it's infuriating. So,
yeah, I I just wanna reassure folks when
you're coming to hospice.
Number 1, we're not gonna tell you to
stop drinking because, frankly, it's gonna cause more
harm and could kill you. Yep. That's true.
Abruptly
quit. It is it is like

(01:03:19):
maybe the only
drug
that will kill you if you stop it
abruptly.
Yeah.
I mean, we've had we've gone so far
as to
have family ration
out so that they can reduce alcohol use
as people are declining
just to avoid
the detox effects of alcohol.

(01:03:40):
Well, and people are gonna wanna know too.
What if they don't do that? Then what
do we do? Well, then we treat them
with other medications as they're going through their
withdrawal
for symptom management.
We treat them with lorazepam. We treat them
with morphine. We give them what we need
to make them comfortable
as they're going through that.
The outcome is death either way, but Yeah.

(01:04:00):
That's what we're gonna do is make them
comfortable at the end of their life.
Mhmm. So
Oh, goodness. Cirrhosis.
Alright. Yeah. The last thing we're gonna talk
about today since we're already I can't believe
it, an hour in because you and I
can talk all day long, I think. I
know.
It's about diabetes.
And this is another one where it absolutely

(01:04:21):
can be genetic. There's different types of diabetes.
It can be lifestyle
affected.
Yeah. But there are a lot of differences
when we're getting into end of life about
diabetes. So tell us a bit about that.
And
I don't know if you have had anyone
I don't remember having anyone come on specifically
only for diabetes, but it's a pretty big
factor when we're talking about terminal illness.

(01:04:44):
Yeah. It's not really considered a terminal illness.
So we don't usually have people with diabetes
as their terminal
diagnosis or their hospice diagnosis, but it can
be a comorbidity.
And you have all kinds of things that
fail when you have diabetes. So
because you're gonna have,
respiratory problems sometimes with diabetes. You're gonna have

(01:05:08):
vascular problems.
So we see people who
lose their toes, lose their legs because they've
had vascular issues. So they they have gangrenous
wounds on their feet, in their legs, in
their hands sometimes too.
Yes. Sometimes you're not going into the hospital
for that because you're you're already,

(01:05:28):
like I said, at the end of your
life from something else.
And so you're not treating it with a
typical what would be like an amputation.
Right. And so sometimes we have body parts
that fall off of our patients while we
are there with them in the home.
We don't try to tightly manage blood sugars
for people who have diabetes.
We usually are

(01:05:50):
steering away from doing
long acting insulin.
We're
usually gonna switch over to
checking if they're symptomatic.
Not checking all the time, but checking if
they're symptomatic and then treating them with with
a short acting sliding scale insulin
because
people are gonna eat less as they're getting

(01:06:11):
close to the end of their life. So
it's very, very difficult to try to balance
out insulin
with diet when somebody is
at the end stages of their diseases and
they're on hospice.
I'm trying to think of comorbidities.
I've had patients who use I'm trying to
think of with my patients that had diabetes,
what their primary was, and I wanna say

(01:06:33):
it seems like
renal disease maybe,
heart disease,
that it goes kinda hand in hand with
those those diseases.
That's a good question. I'm gonna have to
start paying more attention to see what the
commonalities
are. I I love that you talk about
just not poking someone as much to get

(01:06:54):
that blood sugar because
the same with the oxygen saturation levels.
Yeah. We are not
focused. We, hospice,
not focused on the numbers, but more of
the how are you feeling and how are
we gonna manage that. But when you've had
a lifelong,
you have to be on top of these
numbers or else,
that's a really hard transition, especially for caregivers.

(01:07:17):
Right. We always wanna ask ourselves, what are
we gonna do with the information?
Yes.
And if we're not gonna do anything with
the information, then why put somebody through that?
I don't know about you, Hallie, but I,
to me a finger poke is way worse
than like a blood draw in my arm.
Yes.
I don't like finger pokes. I hate finger
pokes. Mhmm. It's very uncomfortable.

(01:07:40):
So and and we we actually
don't you we we will
pay for insulin, but
hospice nurses typically are not gonna be checking
the blood sugar. It's gonna be the patient
or the family.
Mhmm. Because I don't know about other states,
but,
you know, I actually think it's a federal
requirement. It's called a CLIA waiver, and and

(01:08:01):
it's something that allows us to do point
of care testing in people's homes.
So that would include the PTINR
machine that I talked about earlier, where we
can poke people's fingers and put the strip
in, and we can see what their reading
is for their warfarin therapy.
And so we can do lab draws. But
if we're using equipment to do a test

(01:08:22):
on somebody, then we have to
be comped in it. We have to be
comped in that. There has to be a
competency done.
And because there are so many different glucose
monitors
out there, there are just dozens of different
brands of glucose monitors.
We can't be comped in every single one

(01:08:43):
of them because
patients own their own monitor.
So we can't be comped in them. So
we we don't typically do the blood glucose
test. It's gonna be a family member or
the or the patient who's gonna do the
poking and checking that.
That is an interesting point and totally makes
sense. I I would have thought we didn't
do it because we're not there all the

(01:09:04):
time. Just a common misconception
that we are there. There though? Yeah. We
don't do it if because we're not there
all the time. But if we're there and
Right. And they're symptomatic,
then then we might be looking at they
need to check the blood sugar. Mhmm. But
we're gonna ask a family member to do
that. We're not gonna be the ones to
usually do that. We might help them by

(01:09:26):
poking the finger and showing them how to
put it on the strip and where to
put the strip and and all of that.
But, yeah, it's really hard to manage blood
sugars in somebody who is
at end of life.
So, yeah, I think to the point,
diabetes is generally not gonna be your terminal
diagnosis, so it's not necessarily
going to be

(01:09:47):
what we're focused on most, but it certainly
can contribute to symptoms.
And most of that's gonna be around the
natural
lessening of your appetite, lessening of eating,
and managing that.
Right.
Yep. Exactly.
Alright. Well, that is all of the diseases
I had listed for us to talk about

(01:10:08):
today. Do you have some kind of final
wrap up thoughts on
diseases that may otherwise be considered
self harm or contributing to?
Oh, you know, I mean, we could think
about
a lot of diseases in terms of self
harm if we look at breast cancer can
be caused by estrogen
and people use estrogen

(01:10:30):
birth control that can cause
breast cancer and
colon cancer can be caused by poor diet
and
there are lots of diseases that could potentially
be caused by our lifestyle choices.
But I think it's really important
not to focus on that at the end
of a person's life.

(01:10:50):
Mhmm. We don't wanna treat somebody
like they are less than because
they may have done something that caused their
own death. We don't know the circumstances
behind that. Right? Like you said, Hallie, we
don't know. Mhmm. We don't know if somebody
is eating a poor diet because they can't
afford a good diet. We don't know if

(01:11:10):
they're smoking cigarettes because they were abused as
a child or lived in a household where
they didn't have any parental guidance or good
role models and they started smoking at 9
years old or Or they were given cigarettes
in their rations when they were in the
military.
Yes.
Yeah. Were you given cigarettes in your rations?
No. Thank god. That was done by the

(01:11:31):
time I went through. But I mean Okay.
For the older generation, yeah, that was that
was the thing. That was a not only
a coping mechanism, but they were handed out
for free. That's true. That's true.
Yeah. So I think it's important not to
ever lay blame on
somebody. Like, if you wanna be mad at
somebody for or something for your person having

(01:11:51):
lung cancer, be pissed off at big tobacco
companies, but don't be mad at your person.
And I think it's normal too, though. I
wanna say I think it's normal for people
who are grieving to to have anger and
to need to know where to channel that
anger and sometimes it's not their person. I've
heard that. I'm sure you have too. You're
a social worker. You've probably heard it hundreds
of times
that somebody is so angry because

(01:12:14):
Meemaw
kept smoking and if she would've quit smoking,
she would've lived longer, and now I'm losing
her because she didn't quit smoking.
Yeah. The fact is there are people who
smoke who live to be in their 100,
you know, and then there are people who
don't smoke, who die young of cancer. So
I think it's just important to meet people
where they're at when they're at the end

(01:12:35):
of their life and to not try to
lay blame on on anyone for choices that
they made.
That comes to us all. And even healthy
to us all. Healthy people can drop dead
of a heart attack. You don't know. People
that didn't smoke may have been raised in
a smoking household and got something from secondhand
smoke. I mean Right. Blame is not going
to be helpful

(01:12:56):
in your end of lifetime with that person,
whether it's you or your loved one.
Do you want to spend your time being
resentful
and have complicated grief,
or do you just wanna enjoy the time
you have because we're all gonna get there?
And
that's, I guess, up to you to decide.
But for us not in hospice yeah. And
then feeling regretful.

(01:13:17):
Yes. Yeah. Present leads to regret.
So, yeah,
death comes to us all. And on that
note
Well, if we come to hospice, just know
that we are not gonna be the ones
judging you. We're gonna help educate and treat
your symptoms and try to give you the
best quality of life you have
because ultimately,
someday we'll all be dead. But what do

(01:13:38):
we have to do to remember?
Remember to live.
That's right.