HOSPICE NURSE PENNY HAWKINS SMITH: UNRAVELING HOSPICE CARE & NORMALIZING DEATH AND DYING ONE VIDEO AT A TIME

Episode Transcript
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Susie Singer Carter (00:00):
Hi. This is Susie Singer Carter, and before

(00:02):
we start today's episode, whichis on the current state of
hospice care, I wanted toclarify a few of the most recent
facts, because the topic can beso confusing, even for the
experts. According to theUniversity of Pennsylvania,
Leonard Davis Institute ofHealth Economics, there are
ongoing concerns that hospiceseligibility and payment systems

(00:23):
do not support consistent, highquality care. They encourage
profits over patients.
Medicare's hospice benefit hasbecome a topic of concern in the
year 2000 the annual Medicarespending has gone from $3
million to $23 billion today,75% of all agencies are for
profit. It's reported that wellmanaged nonprofit hospice

(00:44):
agencies yield an annual profitmargin of about five to 6% while
for profit, public or privateequity agencies yield about 18
to 22% in recent years, the forprofit dominated industry has
been the subject ofinvestigations and exposes
questioning the qualitystandards and financial
practices. The issues revolvearound racial and ethnic

(01:07):
disparities. They also revolvearound quality measures. While
there are systems that exist tomeasure these, there's a wide
variation in how they areapplied, gamed or even avoided
by hospice agencies. In fact,Medicare's care compare reports
that 47% of the quality data ismissing. The number of hospice
patients whose primary residenceis in a nursing or assisted

(01:29):
living facility has grownexponentially. Hospice agencies
can't always control the qualityof care because it's delivered
by staff in those facilities.
And finally, we are experiencinga for profit downward spiral in
the early 2000s some of the verybest for profit programs went
through initial public offeringsand became publicly traded.

(01:50):
After that, we watched theHospice Quality spiral down and
the attitudes of the newmanagement focus on finances.
While there are still excellentprograms, many of the for
profits maintain their highprofit margins by skimping on
services, tolerating unmetneeds, shifting costs to
families, short staffing onnurses, maintaining unreasonably

(02:11):
high case loads and shortstaffing doctors, in fact, too
many doctors are leaving hospicecare. It's such a cruel irony to
know that in the beginning, wecreated hospice in part to
ensure dying patients had accessto physicians. Now a number of
hospice programs have themselvesbecome the barriers to dying
patients being able to accesstheir doctors. Having said all

(02:34):
that, hospice has improved endof life care for millions of
people over the course of itshistory, as with everything else
in healthcare, more oversightand enforcement is required to
ensure that everyone receivesthe quality care they deserve,
when and where they need it. Andnow here's our episode.

Unknown (02:53):
when the world has gotyou down.

Don Priess (02:56):
Alzheimer's sucks.
It's an equal opportunitydisease that chips away at
everything we hold dear and todate, there's no cure. So until
there is, we continue to fightwith the most powerful tool in
our arsenal, love. This is loveconquers all, a real and really
positive podcast that takes adeep dive into everything,

(03:17):
Alzheimer's, The Good, the Bad,and everything in between. And
now here are your hosts, Susiesinger Carter and me Don priess,

hello, everybody. I'm Susie singer
Carter

Don Priess (03:37):
and I'm Don priess, and this is love conquers all.
Hello. Susan

Donald, good morning. How are you? Good
morning?

Don Priess (03:43):
I'm great. It was a nice weekend. We actually got
outside, got to the beach area,which haven't done in so long.
And, yeah, so actually there,you know, experience what they
call life, which is something wehaven't been doing for the last
two years. Yeah, and

it was, it was actually very scary and just
and very exhausting. That thingcalled life was really
exhausting. We had my two littlemy two little granddaughters,
who are four and under two, wholike 19 months, and we, and we
decided to take them to theVenice pier, Santa Monica Pier.

(04:23):
Santa Monica Pier, yeah, whichis literally on a summer day.
It's like, it's like, you're insome, I don't know there was at
least 100,000 people there.
Like, we just literally was,like, it it was hot, and we're,
like, making our way throughcrowds of folk, and we're like,
so frightened that we're gonnalose one of them or something's
gonna happen. Yeah? Who knows?

(04:45):
It's all up in the we did, wedid, you know, we

Don Priess (04:47):
did good.

We did pretty good. We did

Don Priess (04:50):
two, yeah, we got we arrived with two, and we came
back with two. So that came backwith two.

Need to figure out how to go close.
Closer to bathrooms when someoneis potty training. That's very
that was interesting. But thankGod for there was a lot of sand.
It was like a kitty litter boxfor my for the four year old. So
it was great.

Don Priess (05:10):
Oh my god, what a picture.

Yeah, picture that you guys don't

Don Priess (05:16):
actually don't pictures.

She's a go with the flow kind of girl. Yes,
all right, so I'm gonna, I justwant to jump in and just say I'm
very, I'm very excited aboutthis conversation we're gonna
have today, Dawn, with withhospice nurse Penny, which
you're gonna introduce herproperly. But I just, I, I, you

(05:43):
know, I am very excited to havea different point of view on on
the topic that we, we tackle oneof these topics in our in our
documentary, No Country for Oldpeople, which is the the
corporatization. Of our healthcare system in nursing homes,

(06:06):
and particularly in the past, Iwant to say five years, it's
really come to the surface inour news reporting and from the
experts that hospice has becomea big target for this
corporatization, because there'sa lot of money to be made in
hospice because of the the waythat it's structured

(06:27):
financially. So, you know,normally, in a in a long term
care setting, Medicaid takescare of will cover when, if
you're on Medicaid, it willcover your living expenses. So,
but it only does that in a longterm care setting, not in your
home. So then often people thatcan't be in their home and need

(06:52):
to need to transition intohospice are therefore in their
in the same facility, or perhapsa different facility. They may
have to move. In my mom's case,it was the same facility in now
into a hospice situation. And sothere it's often now. Now
hospice is now taking care ofvia Medicare, and the the the

(07:18):
amounts that they pay Medicareis, you know, significantly
higher than Medicaid will pay.
Medicaid is anywhere from like250 a day to like sometimes 300
something like that. It variesacross the country. But then,
you know, hospice can startanywhere from 300 and go above.
You know, well above $1,000 aday depends on where, what your,

(07:41):
you know, acuities are, whereyou are, what you need and and
so, you know, in the nature ofhospice, and I just thought it's
important to like, express like,what, what our what we've been,
you know, given as informationfor hospice, right and and based
on the people that we spoke tofor the for the documentary,

(08:04):
which is, it's, it's reallybecome big business, and because
it is a Comfort Care program,it's a it's it you must be
diagnosed from A doctor to havesix months or less to live you,
and you are provided, you know,comfort care, anything that

(08:26):
keeps you comfortable forhowever long you're going to
live within that six months, andthat doesn't include anything
that's going to be a curativekind of treatment. So, you know,
unless

Don Priess (08:39):
that treatment at it lends to the comfort, you know,
if it's just specifically totreat that to to make it more
comfortable for them, then therewill be some of that, right,

right? The way one of our experts puts it,
he said, you know, if you havecancer, you're not going to get
chemo. But if a tumor is, is,you know, you you form a tumor,
and it's, it is, you know,

Don Priess (09:00):
causing a lot of pain or no hindering you from

breathing, or something like that, like,
you know, then, then they'regoing to, they'll, they'll
address that situation, but notto extend your life. Let's put
it that way. So what's happenedthat we've discovered in our
research is that it can, thiskind of program can get taken
advantage of because it they'regetting higher rates of pay, you

(09:26):
know, billing. They can billhigher rates and they don't.
They can put less effort andless staffing and less resources
towards this issue and so, ortowards this program and so.
Often people are either arepushed into it or, you know,
invited into this programearlier than they need to be,

(09:47):
and then often are given lesstreatment than they need,
deserve and want, becausethey're just kept comfortable
and so, and that's all due tothe. The issue of understaffing.
And understaffing is, is, it'san epidemic, you know, in all of

(10:08):
our facilities, because that isthe business model that that the
corporation bases their theirbusiness model on. I mean, this
keeps this key. You know,staffing is the most expensive
part of any business employees,and that is how they keep their
their costs down. Yeah,

Don Priess (10:27):
and they're that.
And so therefore, in thisscenario, hospice is not doing
what hospice is supposed to bedoing, and when hospice is done
properly, it's amazing. It's abeautiful thing. But in this
case, it's, in these cases, it'sbeing abused and not so that's
right, that's that's theposition, right?

So we wanted to hear the when it is a
beautiful thing, and what, whatdoes that look like? How does
that look like? How do we getit, you know, how and how do we
not end up in a situation thatmy mom and millions of others
have experienced So Teddy thatleads it to you dawn to make an

(11:08):
introduction of our guests thatI'm really excited to talk to.

Don Priess (11:13):
Penny Hawkins Smith is a nationally certified
hospice nurse working ininpatient hospice home, hospice
case management, hospice,quality, regulation and
education during the covid 19pandemic, Penny found her way to
social media, where she quicklyrealized that she had an
excellent platform to bringeducation about hospice, using

(11:34):
trends, humor, stories and Q andA's. Penny has found a wide
audience and currently has over2 million followers on social
media known as hospice nursePenny, her goal is to normalize
death, because, as she says,Death is normal, and we're
delighted to have her with ustoday, so let's not take any
more time and say hello toPenny. Hawkins Smith, hello

(11:56):
Penny.

Hospice Nurse Penny (11:57):
Hello there.

Hi, Penny.
Hi. Thank you for coming andtalking to us. I am so

happy to be here.

Oh, good. I am so glad because we met on
Tiktok, and, you know, you werevery bold, and you responded to
my to some of my posts, like,you know, girl, get it straight.
You don't know what you'retalking about, data. I'm like,
what? Who is this person? Iwould I've been, you know,
researching for two years. Iwent through this, so I finally,

(12:25):
I thought, you know, we need totalk like get I want to you to
come on the show and give meyour point of view, because I
think it's important, because ifwe can have a beautiful
experience, then let's have it.
I mean, we deserve it, right?
Yes,

yeah. So, so many things I want to
address, okay, you know, as faras the reimbursement, first of
all, I want to acknowledge thatthere are bad actors, right?
There are always in in anybusiness, healthcare or non
healthcare, you can always havesomebody who does unscrupulous
things and takes advantage ofpeople and, you know, and that

(13:00):
can happen in hospice, and ithas unfortunately. And of
course, a big deal is made aboutit when it does happen. But
there are so many other hospiceagencies that that don't operate
in that same way. And many,many, many of them are
nonprofits. In fact, I've onlyever worked for nonprofit
hospices, so I know it soundslike this big business thing,

(13:21):
and there's all this money to bemade, but the reality is routine
hospice care only pays around. Ithink it's 270 or 280 a day per
person, and it doesn't matterwhat we do for that person, we
get the same amount of money forevery single patient, whether
it's a person who is in anursing home, and we're seeing

(13:43):
them maybe every two weeks. Thenurse sees them every two weeks.
Maybe the aide is going a coupledays a week, or three days a
week. We get paid the same forthat person as we do for
somebody who's in their home whohas four infusions running. I've
had that person. The nurse isgoing every day. The chaplain is
involved, the social worker, theaide is there. Every day, we get

(14:04):
paid the same amount of money.
It doesn't matter what DME webring in durable medical
equipment, what medications wecover, everything like you're
talking about palliativetreatment. So let's say we have
somebody who does have a tumorthat's encroaching on their on
their trachea, right? And theycan't breathe. And we need to do
something. So we want to dodebulking with radiation. We're

(14:26):
paying for that. If we'reputting in a pleurex drain into
somebody's abdomen to drain theascites off, we're paying for
that, and it still comes out ofthat same little $280 a day that
we get so and then the otherlevels of care are also a flat
rate. So general inpatient,which is what you were talking

(14:46):
about, when somebody has ahigher acuity, they might go
into a hospital or a hospicecare center or a skilled nursing
facility so that they can have24/7 nursing while we get. Their
symptoms managed. It's reallymeant to be short term. The plan
is to always stabilize and sendthem back to wherever they came
from, usually their home.

(15:08):
Because, you know, when they'reat home, we're not managing at
home as well. And so we get theminto a Care Center. I can tell
you personally from working incare centers, there's no money
to be made in a hospice carecenter. A Hospice Care Center
really usually has to besupported by an agency that has,
like a robust home hospiceprogram as well, because that

(15:30):
will carry the hospice carecenter. In fact, one of the care
centers that I worked for had toshut down because it was a
nonprofit. It had a foundationthat was raising money for it,
they were paying for all of thiscare and the rent and everything
else. And it wasn't sustainable.
It could not be sustained. Therewas just not enough money to be
made in that. Also, you know,you're talking about Medicaid,

(15:53):
Medicare. If a person's in anursing home and they have
Medicaid paying for their roomand board. And Medicare comes
into the picture. Medicaid stillpays for the room and board. So,
you know, Medicare, you know,let me again, like, let me give
you the caveat. I don't thinkthe hospice program is perfect.

(16:13):
I wish it was better. I wishthat people could get concurrent
treatment.

People do, which means what concurrent to
sit for people that so

somebody, let's say somebody, has cancer,
and we know that they are reallyat the end of their life, but
there's still some treatmentthey want to try, you know, we
should be able to bring theminto hospice and allow them to
continue that treatment, youknow, so that they can kind of
make their own mind up aboutquitting. And it is an elected

(16:44):
benefit. People elect hospice.
Nobody's forced into it. They'renot pushed into it. I think
Susie, you had said you feltmaybe like you were kind of
railroaded into it, or coercedinto it, if I remember
correctly, and and that'sunfortunate, you know? And
that's like, that's bad. That'sjust people marketing. And I
hate that. I hate that, youknow, people need to have an

(17:05):
opportunity to really know whatit means to elect the hospice
benefit and to make thatdecision, to come to that place
on their own, in their own time.
And you know, it doesn't alwayshappen that way, unfortunately,
but you know, do you think,

do you think Penny that when you say
nonprofit, and I want to, youknow, I also want to give a
caveat to nonprofit, because,you know, the the experts that
we that have done, like forensicaccounting on all different
kinds of scenarios in terms ofprivate equity and private

(17:43):
private equity, like businessmodels, which do, which do
actually cover 70% of ourcountry's, you know, nursing
home facilities, a lot of them,like my Mother's was, so you
know, to the to the public, itlooks like it's a nonprofit.

(18:04):
It's not when you go deeper andyou find out that it's that just
one portion of this corporationis a nonprofit, and that they
get and there's ways to getaround it, and that's why we're
all of these experts fordecades, have been calling for
transparency, because it reallyis very difficult to find out
who the actual owners are, andso there's all kinds of ways to

(18:25):
game the system, and that's theproblem, because there are
amazing, good good there's goodactors, and there's good
facilities that want to do agood job, but they are. They're
beholden to their owners, andthey're and those and they're
what what is between the ownersand those facilities are, you
know, it's, there's a, there's ahuge chasm between them. So you

(18:47):
have these, you know, it'slegal. It's really legal money
laundering. There's all kinds ofrelated parties that the monies
go through and they own thesecompanies. And there's, there's
tricks that you know have beenaround for ever, in terms of
this kind of a it's corruptsystem. And and vulnerable
people are they are targeted.
That's the problem. And andpeople and caregivers like me,

(19:10):
when you are at a very emotionallevel in your in a in a in your
life, and you're dealing withsomeone that you love very much,
and so much is happening, andsomeone says, this is where they
should be. This is, this iswhere they're going to get the
best care that they need. Andyou're like, Sign me up. Okay, I
get it, you know? And, and Donyou were there with me. It was

(19:34):
and it was exactly Penny Well,it was like, yeah, when

Don Priess (19:40):
you have a doctor saying this is where she's going
to go, you don't know at thetime. You don't have time to
say, well, let me go down andstart doing some research on
this. Your loved one is sittingthere, you know, in theory, on
their last days, which is whatshe was told. So we don't have
time to go and research. What'sthe best facility, what's my
best option? You know. Soeducation is so important, yet,

(20:02):
unfortunately, people don't getthemselves educated before all
this happens, because we don'tknow where, so we don't, we
don't, we don't, you don't need,not necessarily railroaded.
You're just like, this is theonly option. You know this this
is as far as Susie knew. Thiswas the option. What was the
best option? Yeah,

after this, you know, avalanche of horrible
things that were happening to mymom. And even though the doctors
from the hospital were sayingshe can get back to her base,
she's very strong, she's she'sfine. Don't get so dramatic
about it, because I was like, Ismy mom dying? I was, I wanted to
embrace what was going on. No,stop it. She's not dying. Dadada
and so. And suddenly I'm like,Oh, she's, she is dying. Wait,

(20:42):
what's going on? I'm soconfused. Meantime, mom doesn't
want to die. Mom's like, youknow she's and I'm, I have no
idea what to do, and all I wanther to do is be not in pain and
not to be a zombie either. Like,let's let you know which is the
best case. You know, if we haveto take her out, let's take her
out now. I don't want her tosuffer for six months. I

(21:05):
certainly didn't want that, youknow. And so you're just not
given enough information. And itall also to the layman. I'm just
giving this to you. Penny isthat it feels it's very
confusing as well. What's thedifference between palliative?
Is there a difference betweenpalliative you know, when my mom
was rushed to the hospital forthe third time because they

(21:26):
didn't, wouldn't take the Foleycatheter out, and I was saying
it, I did research. It doesn'tsound like this is a healthy
thing. She doesn't need a Foleycatheter. She urinates on her
own. Sure enough, she'shemorrhaging in her bed, and now
she's got to have bloodtransfusions, and now she's got
to be flushed, and that doctorwho was attending to her said
she needs to go into palliativecare. This is why she's not

(21:47):
getting cared for. This is whyshe's not getting the care she
needs, because she's in hospice.
And I was like, oh, okay,suddenly my mom's moved to
another and

Don Priess (21:54):
it's the first time we heard that word ever. We did
not hear that the wordpalliative as an option. Before
that, it was just basicallyhospice. So how do we get around

that?
Palliative is not well, it's notpart of hospice. It's the
umbrella. It's a completelyseparate program. Palliative is
not any part of the hospiceprogram. The hospice program is
Medicare program is completelyseparate from palliative, but
palliative and hospice are puttogether like I am a certified
palliative and hospice nurse.

(22:28):
Because palliative is somepeople think of palliative as
the stepping stone to hospice.
It's kind of got a little bit ofa similar structure. As far as
being interdisciplinary, hospiceis one of the hospice is the
first medical program that isinterdisciplinary, which means
that we have nurses, hospiceaides, social workers,

(22:49):
chaplains, doctors. There's awhole team of people. We do
whole person, person centeredcare. Palliative is similar to
that there. It's not justlooking at the disease. So
Susie, when you're talking aboutyour the doctor is telling you
she's not dying. You want toknow he's saying, No, she's not
dying. Oh, whoops, guess what?

(23:11):
She's dying. I went through thatwith my dad, and I had been a
hospice nurse for five years,and I kept telling them every
day, I'm a hospice nurse. Youcan level with me, what is going
on? Nobody ever said to me. Hereare our two options. One is to
treat and the other is forhospice. No one ever said that.

(23:32):
And I kept saying, Look, exactlyyou're treating him for this.
Okay, now he's got PneumocystisCarini. I do a little research
somebody with immunocompromisedsystem like he had from steroids
from his lung disease, has a 50%chance of survival rate. So I'm
like, he's already got aterminal disease. He's already

(23:53):
now he's got this infectionthat's got a 50% survival rate.
The doctors are still telling mehe's going to be okay. No
worries, no problem. He ended upin on a BiPAP in the hospital,
and I called his new First ofall, I walked into the room and
my dad said, it's not lookingvery good. They're talking about

(24:16):
hospice, and I might have a yearleft to live. And I said, that
doesn't make sense, becauseHospice is a life expectancy of
six months or less. Now, when Isay they're talking it's not
hospice, it's telling them this.
Okay, it's the doctors at thehospital. My mom says, we're so
confused, can you please callhis pulmonologist? I call the
pulmonologist. Yes, he had arespiratory crisis. If it
happens again, we'll have tointubate him. I don't think he

(24:37):
wants that. I said, I know hedoesn't want that. I also found
out no one had talked to my dadabout his code status. He was
still a full code at this point.
And I know my both, both myparents, did not want life, you
know, prolonging intervention.
And I said, Is it time for ahospice consult? And he said,
Yeah, it is. My dad died lessthan 12. Five hours later in the

(24:59):
hospital, and I'm a hospicenurse who kept telling the
doctors that I needed to knowwhat was going on, because I
could sense that somethingwasn't right. And this is the
problem. I mean, it goes deeperthan just hospice. It goes into
our whole medical system.

(25:21):
Percent doctors that are like,this is your only option. They
tell cancer patients this allthe time, this is your only
option. Do everything. What ifit wasn't? What if it's like,
not do everything, do somethingelse. Like, right? No treatment.
You know, like, I can't tell youhow many patients I've cared for

(25:41):
who did treatment it was futile.
They died anyway, and they had ahorrible quality of life while
they were doing that treatment.
So, and that's what hospice cando, is bring you a better
quality of life. You know, it'snot just comfort care, it's
improved quality of life. It'shelping people achieve their
life goals, whether that's, youknow, getting married. We've had

(26:05):
hospice weddings, a patient whowhose daughter was getting
married, and his his goal was towalk her down the aisle. And so
part of our care plan was to gethim the DME that he needed, so
that he could do that, to gethis pain managed, so that he
could do that. You know, likethis is what we do is to try to
improve quality of life at theend of life, right? But the

Don Priess (26:28):
system doesn't allow us to get to that. I mean, our
system is so difficult. You had,you couldn't get there. You knew
what was going on. Our systemdoesn't allow us, or doesn't
give us a big opportunity to getthere because we don't know. And
we asked 10 different doctors,what is hospice and they all
gave us a different answer,including,

don't know, because

hospice doctors. But this is we
interviewed people fromMedicare, Medicaid. Are, you
know, hospice doctors, hospicenurses, lawyers, who are also
advocates from canner. Youmight, you might be aware of
Cantor, which is in NorthernCalifornia. So they're, they're
citizens and attorneys forNursing Home Reform. They've

(27:09):
been around forever, and, youknow, they are, they are there
for the they're not, they'renot, you know, litigious
lawyers. They're there toadvocate for quality nursing
home care and hospice care, andthese are the things that we're
hearing is that you know whatyou're talking about is the
ideal and what we hope for. Butwhen I'm told, Oh, your mom's

(27:32):
been getting the wrongtreatment, this is why, because
my mom went into the hospitalwith a stage four pressure wound
when the nursing home, a fivestar nursing home here in Los
Angeles, didn't even tell me,and when I when she got to the
hospital, they didn't want tohave they didn't want it on
their hands. So they were like,your mom is just, you know, she
was just admitted with this. Andso I called the facility. They

(27:54):
said, Didn't happen here. Didn'thappen here. And I said, So when
did it happen? I'm trying

to think it happened, yeah, in the
ambulance, of course,

in the ambulance. So, you know that. So
she was admitted with sepsis andeverything else, because they
didn't, they didn't take care ofher. She had, you know, she had
pneumonia, she had, she washighly dehydrated, you know,
you're a nurse, and on and onand on, all of the comorbidities
that happened with that and soas a result, she was intubated,
which she didn't need to be. Butno one asked me, because it was

(28:25):
covid. I couldn't get in, youknow, she they gave her a G
Tube. They gave her a G Tubewithout asking me, oh, my God.
And then so when we finally gother back after horrible things
that, you know, just anavalanche of things. And this is
why I know I was meant to dothis documentary, because Why
did all these things happen thatshouldn't have happened? You

(28:48):
know, I She's back at her at herfacility in hospice with a G
tube with a catheter, andtelling me that she's aspirated
so she can't so she's NPO, whichis nothing by mouth. And I'm
saying my mom is literally dyingof thirst. She can swallow, have
her assessed. Yeah, okay, we'lllook into that. Okay, we'll look

(29:08):
into that. Is my mom going tosee a wound doctor, because the
hospital said she has to have awound doctor. I mean, even if
she's dying from it, get a wounddoctor in there and take care of
it. Why should she be in thatkind of pain? And why should she
live if she has six months,which she did, you know,
horrible quality of life, wemight as well to be not to be

(29:29):
dramatic, but to be dramatic.
Let's shoot her instead. BecauseWhy should she live six months
like a zombie? So, you know,what is? What do you say at the
end of the day? Is that followthe money. Why would you keep
somebody alive in a zombiestate? That's ridiculous.

So yeah, and you know, in hospice, I
mean, we don't do anything toprolong life, nor do we hasten
death. But I don't have a wholelot of good things to say about
nursing homes, because I haveseen nursing homes keep people
alive by shoveling, insuring totheir. Mouth. You know, every
day, as long as they can get itinto them, get them up, get them
dressed, get them going, theyget paid. That's how they get

(30:06):
paid. Nursing homes and hospicesare separate. I mean, I would, I
would be very reluctant to putsomebody into a nursing home and
that owned a hospice, unlessit's like a hospice care center,
dedicated hospice care center,but like a nursing home that

(30:26):
also owns a hospice. Peopledon't know this, but you get to
choose your hospice. You don'thave to have a doctor's
referral. You can self refer tohospice, and you can choose your
own hospice agency. You do nothave to go with the one that
you're referred to. You can lookup the hospices online at the
Medicare Compare website. Youcan look at their quality

(30:47):
scores. You can see like, who isavailable in your area.
Something about California thatI think is kind of not great,
and it's different thanWashington. Is that in
California, anybody can open ahospice. I mean, you can just do
a hospice right in Washington.
It's a certificate of needstate, so you have to petition
the state and show a goodbusiness case for why a hospice

(31:09):
is needed in an area, in my areawhere I live, which is very,
very rural, there is one hospicethat serves this area. That's
it. There are no others, becausethe states has said there's not
enough people to support morethan one hospice, which is kind
of bad, because we don't getchoice, but the hospice that
serves as areas top notch. It'sone of the best in the state. So

(31:31):
no worries there. But so whenyou have, like in California,
these hospices that are justopening up right and left. And
you know, like you were sayingabout the nonprofit following,
sometimes there is profit. Now,the ones I've worked for are
truly nonprofit. They're right,huge organizations that put the
money into other programs thatare very underfunded. Right?

(31:52):
Palliative care is not fundedvery well, for one. But like
there are also for profithospices, and those are, in my
mind, the worst, because theytend to put in a lot of a lot of
things into place in thebeginning, a lot of help, and
then they pull back on it, youknow. So that's how they get

(32:14):
their money. But so I thinkthat's kind of one thing about
California that's different, andunfortunately, so then you're
going to get a lot more peoplewho are trying to look for
money. And again, there are somehospice agencies. We know about
them, they were highlypublicized, who have done things
to get money. They've falsifiedcertificates of terminal

(32:36):
illness, and Medicare isconstantly trying to improve the
program. There are some thingsthat they have done to really
try to improve the program. Oneis they reduce the rate after
day 61 so when a person is onhospice for the first 61 days,
they get a little bit higherrate for routine hospice care at
62 days and beyond, it dropsdown because Medicare figures we

(32:58):
get them into the program, weget all these things in place.
Now you're just sailing along.
And you know, you can kind of,you don't need as much overhead.
So they've done that. They'realso now doing a pilot program
where they're allowing somehospice patients to receive
dialysis. Unfortunately, whenpeople have kidney disease and

(33:21):
they're on dialysis, they can'tqualify for hospice if they're
doing the dialysis, and whenthey stop the dialysis, they
have a very, very, very shortlife expectancy, like three
weeks or less, so they don'teven get to benefit from the
hospice program, because theydie so quickly. So Medicare is
looking at that and going, maybewe can go ahead and do dialysis
for a while for these people sothat they can have an

(33:44):
opportunity to take advantage ofthe hospice program. But the
reality of hospice is, you know,you have a life expectancy of
six months or less. People canstay on longer than that.
Happens a lot. We don't knowwhen people are going to die, as
long as they meet thateligibility at any given time
during their hospice stay, theycan be on. We've had patients on
for one year, two years. I sawone for five years once. But the

(34:07):
average length of stay is like82 days. And the median length,
the median length of stay islike 47 days. So people have
this life expectancy of sixmonths or less, but not very
many of them actually reach thator exceed that. They usually die
quicker, and that goes back tothe hospitals not being willing

(34:31):
to talk about, you know, the Dword that's going to happen to
every single one of us until theperson is already like at
death's door or close to it.
Yeah,

right. Go on, Don were you gonna say
something? No, it's

Don Priess (34:47):
gonna say You said something. You said one sentence
a little ways back that was soimportant. You said, people
don't know this, but you canchoose your own hospice. That's
exactly right. People don't knowit because we're not. Not told
it. And also, you know, as faras the nursing home and being
owned by the hospital, beingnursed by the nursing home, that
happened in Susie's situation,but they're named something

(35:10):
different. The hospice has adifferent name. So you think,
Oh, that's a different hospital.
And they're just, this is wherethey you know, it's so
confusing. They're

also under, so confused, also under a name.
I won't say, I can't say itbecause I will not say it on my
on my show. But, you know, theyare a very respected
organization here in LosAngeles, and, you know, in the
community, and so, so it has agreat name. You think, Oh,
bloody blah, my mom's in greathands, you know. And, and also,

(35:40):
oh, she's going to be, she'sgoing to have the help from the
nursing home as well as thehospice team. But the hospice
team it, it was, you know,initially, when we first met the
social worker, it sounded likethe best thing ever, and then,
like the doctor was the she toldus, this doctor is a few, she's
a she's a feminist rock star.
She goes at least once a week.

(36:04):
Well, she never met my mom once.
She told me she doesn't. In sixmonths, she said she'd never she
said, your mom's gonna do Let'stake her off. I said, I want my
mom off the G Tube. She can eat.
She wants to eat. That's herlife. She likes eating. Let her
eat, please. And she said, youknow? Yeah, I want to take her
up, but we're gonna then, don'tfeed her. Let's just let her
die. And I said, What is wrongwith you people? And she said, I

(36:26):
know you don't want to hearthis, but that's what, that's my
opinion. I said, but you haven'teven seen her. And I said, Can
we get a, you know, anevaluation. Let's evaluate this
before you make a decision.
We'll look into it. We'll lookinto we'll look into it. We'll
look into it, you know. And alsowith, with, you know. And then
it's then you get like, well, ifyou're not happy here, you can
take her home. Well, no, I can'ttake her home now, because her

(36:46):
acuity is so high. Look what youdid to her. You got her here
when she wasn't like that so,and it's not due to her
Alzheimer's. This is neglect.
This is the hallmark of neglect,right? And I and I know Penny
that the weather, the way thatyou described it, which is why I
wanted to talk to you so bad, isthat that's the way it should

(37:08):
be. That's the way that shouldbe,

Don Priess (37:11):
the way you do it, the way you do

you're breaking my heart. Susie, I have
to tell you, I'm just aboutready to lose it, because I
what, what you got was nothospice. I mean, the fact that
they told you that if theypulled the tube, that you
couldn't feed it like you thehospice, Medicare, hospice
regulations say that we aresupposed to be providing, you

(37:37):
know, therapists to determinethese they should have, they
should have had a speechtherapist come in there, and

Don Priess (37:44):
she asked for it

every day.
Was not hospice.

It took me seven weeks to get a nurse to
finally get it. Was on mymother's birthday two years ago,
on April 1, and they finally gotsomeone in because one of the
nurses took pity on me. She waslike, I'm gonna, I'll call her
in. The girl came in. I lovedher. She was very sweet, but she
did a two finger test and said,Yeah, she can't swallow. I said,
What? Wait a minute. Let me showyou I've been sneaking, you

(38:11):
know, drinks to her. And I showher and my mom. Because, first
of all, I was like, why you haveyour fingers here, you know? So
I show her into my mom's like,look like she always did, and
she goes, Oh, she can swallow.
Well, I'm going to allow you tolet her suck on a sponge, but
nobody else, because I don't

that is not hospice. That's not what we we
educate about the risk ofaspiration. And then if you want
to continue to give that personsomething by mouth, then you
can, like we had, I wanted

to sign something. We had a patient. She

Don Priess (38:42):
said, I'll sign a waiver. And she said, they said,
No, we No, no, no, no, and takeher home. If they take her home
then, or finally, she's theysaid, We don't trust any of our
staff to do this. So to do it,be you and to do with the spine,
I

know I'm gonna let you talk, Teddy, but I
just want to say that, yeah, shethat. Since then, I've, I have,
and this is, and you'll knowthis as a nurse, that you know,
G tubes cause more aspirationthan anything else, because,
yes, it's actually food. It'sactually coming up. Whereas, if
you're giving someone water orjuice, we all aspirate on water
every once in a while, you knowit's okay anyway, go on,

because tube feeding, because the as a
body shutting down too, it's notgoing to absorb the tube feeding
and that tube feeding, then canI have suction tube feeding
formula out of a trach, out of aperson, because the family kind
of continued to want to tubefeed even when the person was
really close to the end of life.
But we had a patient at ourhospice care center who,
culturally, they feed this,like, really thin soup at the

(39:40):
end of life. For these in thisculture, and I don't remember, I
think it was an Asian culture,but they were feeding soup at
the end of life. And we justeducate them, look, you know
what? There's a writ becausethis guy, I mean, he was pretty
unresponsive, and they're stillshoveling soup in his mouth. And
we just have to say, look, youknow. Um, we don't recommend it
because he could aspirate.

(40:05):
That's that's what we're justtelling you, okay and and then
let them, if they want to do it,they do it. I gave a guy a
popsicle at the end of his life,he had been in the hospital.
Came over to the care center. Iasked his daughter, how are you
guys doing? She said, Well,we're okay, but he really wants
a popsicle. And I said, Well, Ican get him a popsicle. And she
said, Well, they said at thehospital you can't have one

(40:26):
because he'll aspirate. And Isaid, Well, he's on hospice, so,
and she said, and she said,yeah, so I gave him a blue
raspberry popsicle, and he righton. Did? He loved it, you know?
So, like, also, I want to saysomething about the doc. You
know, the hospice doctors hardlyever visit the patient. That's

(40:46):
actually normal for the hos.
It's the hospice nurse who isthe liaison, you know, like we
are the ones who who are therewith their eyes and ears on on
the patient, and we report backto the doctor and we get the
orders. And sometimes, if it's acommunity doctor that's managing
the care, we make therecommendations on on things,
because we know better. And Ialways say, if you want to know

(41:07):
when a person is going to ismore likely to die, don't ask
the doctor, ask the hospicenurse, because we see it all the
time. People and doctors in thehospital, they don't, they don't
see it as much. They see it inthe ICU, that's a very different
looking death. They see it inthe ER, that's a very different
looking death than a naturaldeath, you know. And so don you
were saying, like I said, peopledon't know this. The problem is,

(41:31):
in the hospital, they don'tspeak for hospice because they
don't know. And when you getyour hospice referral coming in
there, they're not going to tellyou that you get a choice.
They're supposed to. They shouldbe saying, by the way, you don't
have to go with our agency. Youcan find another one. But they
but they're not. They don't tellyou that if you don't like your

(41:54):
hospice, like Susie, you couldhave transferred to a different
hospice. They probably didn'ttell you that you can do that
the nursing home, just becausethe nursing home is owned by the
hospice agency, and that's theirhospice agency. You don't have
to go with that hospice agency.
They can't they can't force youto use their hospice agency
because your mom is in theirnursing home. They can't do

(42:17):
that. It's not legal, you know.
So there's all these things,like, you have the right to
revoke hospice at any time. Youcan say, You know what I'm done
with hospice. I'm taking my momback to the hospital. You know,
like people have the right to dothat and, but, but, yeah, not
everybody knows that, which iswhy I'm on social media
education,

which is why we're doing this. Yeah,
thank you. And that's why we'redoing the documentary, because
you also have rights to decidehow you as either you or your
surrogate, how you want to, youknow, what kind of treatments
you want, whether you like, mymom wanted to eat and I said she
wants to eat, and we will signa, you know, a waiver of to

(42:58):
mitigate any kind of, you Know,responsibility on your part, we
will take full responsibility.
This is what we want. Absolutelynot, absolutely not. Now, I
didn't know what my legal, youknow, rights were at the time,
because you kind of don't thinkthese that in this arena, in
this kind of business industry,that you're going to be lied to
for what to what end, I didn'tthink I didn't have my, you

(43:20):
know, my, my, those, thoselenses on at the moment, I had
the lens of, how do I take careof my mommy, right? And how do I
make her have the best days ofher life at the end, you know,
like, as beautiful as possible.
And, and it was I didn't, it'sso it is horrible to be out

(43:42):
there floundering and not reallyknowing what what to do, and
you're only trying to do thebest, and you're not trying to
cast blame. You're trying to bea nice person, and you're trying
to just, you know, you reallybecause you

Don Priess (43:55):
don't want to ruffle feathers, and all of a sudden
they're, you know, then there'sretaliation, yeah, all those
good things.

Oh god, I people hated me after a while. I
walked in and was like, and Iused to, and you were nice. I
was nice. I used to go in andsing every weekend for the for
the residents, you know, andlike, and was I loved going and
visiting. I walked in and it waslike, you know, yeah, I was
like, frozen, you know, suddenlyI was, I was, I was on a and,

(44:20):
and I would, I had no idea, butI and I could have been tougher.
I should have been tougher. Ishould have demanded more, but I
didn't, because I didn't know myrights. And I all I knew is that
my mom, when the when thehospice nurse would come in, or
the social worker would text me,go mom looked great. We were
there today. She lookscomfortable. I would go there
later in the afternoon, she's ina hot room, facing a wall.

(44:43):
Hasn't been turned the musicthat I asked to keep on wasn't
on. She's lying there, like,like a, like, a lump of rice,
like nothing, like no, like, noquality of life at all. So, and
also,

Don Priess (44:57):
yeah, the bedside manner also is so important. The
beds of the one of the nurses,because some of them literally
treated her like a piece offurniture when they were, like,
turning her whatever, like, asif she didn't, wasn't even there
when they'd hurt her, like theycaused something that would
cause her pain, not like, Oh,I'm sorry, you know, I'm sorry,
honey. And she would, you know,you feel that. And that's so

(45:18):
completely opposite. When Iheard she was going to hospice.
I had, in my mind, hospice in acomfortable bed, there's
flowers, there's music, there'slovely nurses who care like you
and and it was just socompletely polar opposite. It
was shocking. And I know that'snot everyone, but there's still,

(45:40):
like you said, there's, youknow, there's a lot of
unregulated, you know, or, orwhen they're it's the same, you
know, facility as the there's sotoo much of that. How can we get
more of what you're doing outthere?

By knowing what you can what you can ask
for and knowing your rights. Imean, really, that's, that's how
and nursing home, I mean, so,like, I know your hospice was
awful, obviously, but also thenursing home part of it, like it
typically, the nursing home isseparate from hospice. So where
I'm at, if I have a patientthat's in a nursing home, you

(46:18):
know, I'm going in there to domy thing with the patient, and
then I am managing the plan ofcare. But when I'm not there, I
have no control over what thenursing home is doing. And I I
recognize that, you know, yousaid something about five, five
years ago. Since five years ago,nursing homes have started to be

(46:39):
bad. It's been longer than that,because when I became a nurse,
which was about 20 years ago, Idecided that I was either going
to be a hospice nurse or I wasgoing to work in nursing homes.
Because at that time, there wasabuse going on in nursing homes,
and I thought, I want to gosomewhere where I can really
make a difference. So nursinghome was my second choice,
because there was so much abusehappening. We were hearing about

(47:01):
it all the time. You know mymother in law documentaries

about, yeah, I just want to correct you
and say I didn't, not. It wasn'tthe nursing homes that were
getting bad in the past fiveyears. It was hospice Oh, yeah,
because nursing homes have beenbad for 50 years. Yeah. More,
yeah, yeah, yeah.

My mother in law is in a in a nursing
home. It's, it's owned by a hugeit wasn't when we put her there,
but it's now owned by a hugecorporation. We're constantly on
their case, and I'm a nurse, soI know what to ask for. I know
what to do. You know, if Iwasn't, she probably wouldn't be
getting as good of care. But youknow, it's, you just have to

(47:42):
walk in a nursing home and knowthat it is not the place to be.
But like you, with your mom,Susie, we didn't other option.
You know, my husband and I bothwork. All her other kids work.
It's a lot of care to take careof somebody. It's a lot of care.

I was just going to ask you that because,
you know, people on on socialmedia who don't know, don't
understand, haven't been throughthey'll say, Well, I wouldn't do
that to my mom. Take care ofher. I would take care of her
like they took care of you. AndI was like, Oh, my God, are you
kidding me? This is my favoriteperson in my whole in the whole
world. I would do anything forher. Yeah, I can't. Yeah,

(48:20):
there's something. Yeah,

I couldn't do it. My mother in law had an
altered mental status. She wentinto the hospital. They she was
there for about a week, and theywere, of course, trying to get
her discharged as fast aspossible. What's the discharge?
But I said, Okay, I'm a nurse.
We'll take her home. I'll takecare of her. We'll do it. We'll
make it work. She was at ourhome for one day. She was
confused, and in the middle ofthe night, she fell I called 911

(48:46):
I said, take her back to thehospital. The nurse at the
hospital said, We're dischargingher back home with you. And I
said, No, you're not. She's notgoing back home with me because
there's something still wrongwith her. You discharged her too
early, and we need her to bebetter before she goes back
home, because we can't take careof her like this. And I am a

(49:06):
nurse, so I am very sensitive tothe fact that that one people
have to sometimes put theirperson who they love so much
more than anything, into anursing home, into an adult
family home or like a board andcare, I think, is what you call
them in California, you know, orassisted living, or we have to
do it, and those who are able totake care of them at home often

(49:30):
sacrifice their own health to doso. You know how you hear about
somebody that died and then ayear later their spouse died?
It's because you have an elderlyperson who's on hospice and
their elderly spouse is takingcare of them to the detriment of
their own health, and then nowthey're gonna die because they
were not able to, you know, takecare of themselves while they're

(49:51):
taking care of their person.
There is another problem withthe Medicare Hospice Benefit. I
will 100% Absolutely. I love,I love. The name of your
documentary. What is it? No, NoCountry for Old people, right?
Yeah, because it's true. It's sotrue. We have an aging
population that and we don'tknow what to do with them.

(50:11):
People are living longer becausewe can make them live longer
and, right, keep them living aslong as we can. And and there's
what do you do with them,

right?
Exactly. That's the problem.
There's ageism and ableism. Andwe have these people that you
know, and that's why they fallprey to a corporate, corporate
situation, because theyvoiceless. There's a lot of
misunderstanding, you know, andthe families you know are they
want to believe? Who wants tobelieve their family members not

(50:41):
getting the right help, and whowants to believe that they're
doing a bad thing? We want youknow, that's why we look to
these experts. I'm a writer. Iwrite films, I you know some, I
bring me that I'm your expertthere, right? I don't I'm not a
doctor, but I did know my mom,and I did, as a human being,
have instinct and intuition. I'ma mother myself. I knew when

(51:03):
she's ready to die. I knew it.
And I said, Mom, my I will knowwhen my mom's ready to die. I
100% I will know. And I didknow. And I told her the night
before she left, I knew she wasdying. I said, You taught me how
to live, and now you've taughtme how to die, you know. And I
think that she she she was arock star, but she really wasn't
ready. And that's that is theproof is that she lasted six

(51:25):
months under such horribleconditions, and I fought for her
so hard, and I couldn't make achange. So how do if we have
hospice at home? And I've heardpeople in different states that
I've interviewed that said, youknow, home hospice was
wonderful, and other people thatsaid it was awful, like they
they didn't show up when theywere supposed to show up. They

(51:46):
didn't provide the kind ofmedication that they would hoped
for. So how I mean, do you thinkthat home hospice is better if
you can and and there, and willyou agree that there, there's
sometimes home hospice isimpossible for the families. Am
I right or wrong? Yeah, no,you're

right.
You're right. I mean, home isthe best place to be if you're
dying who doesn't want to die intheir own home, but it's hard
for the caregivers. Ideally,there would be, you know, there
would be some kind of programthat could pay for caregivers to
come in. Now there is Medicaiddoes do that for people who
don't have money, and then ifyou have money, you can pay for
it privately. And if you'resomeone like me who's right in

(52:26):
the middle of the road, thenyou're screwed, right? You can't
Middle America cannot affordcaregiving, and they can't get
the free help from the state. Sowe're doing all the caregiving.
So you know, it really dependson the experience that the
person has with the hospiceagency, how good the hospice is.
A lot of people have thisexpectation that they're going
to have a nurse coming in doingall the care and and that is not

(52:49):
how it works. We are teachingthe family how to care for the
person. We're educating. We arenormalizing, you know about what
to expect, so that they're notafraid. We're helping them, like
learn how to actually do thehands on care. And we do hand
hands on care as well. You know,we assess and we and we will do

(53:10):
care, changing catheters,accessing parts, doing that kind
of thing, to wound care,whatever. But we don't do 24/7,
care. It's just the Medicarebenefit does not allow for that.
There's not the money for that,unless it's a continuous care
situation, which, again, is likethat General Inpatient where we
put someone in a hospice carecenter. It's very time limited.

(53:32):
It is you get, you know, a nurseto come in and get these
symptoms managed, and oncethey're managed, we're out of
there, and we're just going tokeep checking in, checking in.
So, you know, I It's, I hate toI hate to give people homework.
But again, it boils down tounderstanding what you are
entitled to through the hospiceMedicare benefit, and knowing

(53:55):
how to advocate for that, andknowing that you know, if you
don't like what you're gettingfrom the hospice you're with,
that you can get in, you can goto another hospice, and should
also be reporting that hospiceto CMS, to the Medicare
services, because we did, yeah,I mean, they should be reported
if they're not doing what theirenforcement

Don Priess (54:16):
is not, and CMS is enforcement. This

is the problem with that's why we're
doing the documentary. It's,it's, it's the opposite of not
great, and that's the problem.
It's horrible, um, or nonexistent. Oh, shoot, I had a
question. Um, wait, wait, wait,well, while

Don Priess (54:32):
you're thinking, Should I ask a question? Yes, go
ahead. Okay, so, so you toWhere's, where's the great
resources for people to do theirhomework.

Well, the Medicare Compare websites like
medicare.gov, compare, dash, Ican't remember, what is you
Google Medicare compare, andyou'll find it and you can and
this is not just for hospices.
It's for nursing homes. It's forhospitals. You can put in your
zip code and it will. Bring upall of the Medicare certified
agencies in your area. I saynever, ever go with a hospice

(55:04):
that is not Medicare certified.
You want a Medicare certifiedhospice? Because even with as
little oversight as they have,they have more oversight than
somebody who's not Medicarecertified. So that's a start, to
be able to go and see like, whatare their ratings? How are they
doing? Like in their qualityratings? The Medicare Hospice
program is is very focused onquality of care, and we are

(55:29):
required to have a qualityprogram. That's what I do. Now
I'm a quality nurse. Now we haveto do performance improvement
projects. We have to monitordata we like there is a lot we
have to do for quality of carewith Medicare. The other thing
you can look at is the nationalHospice and Palliative Care
Organization, the nhpco.org theyalso have a lot of information

(55:54):
in there for caregivers. So Irecommend that website as well,

and how.
And you know, you were sayinglike, the like. So just, just
to, just to clarify what we weretold from all of our experts,
the daily rate for hospice underMedicare is, is quite a bit
different than what you weresaying Penny. So I'm, I'm just
encouraging people to go out andand, you know, do your research.
How can we find out, you know,how much our hospice is getting

(56:19):
paid by Medicare? Is there a wayto do that, like a daily rate,
that it's publicly

available.
You can find it on the internet.
It's publicly available. It's,let me think of the name of what
it's called, The something rule,but yeah, you can find it, and
it'll get it'll give you therate for there's four different
levels of hospice care. There isthe routine hospice care, that's
the one that's around like 280 aday. And then there's general

(56:49):
inpatient, that's the acute carethat's significantly more like
1000 $1,100 a day. Again, verytime limited. You have to meet,
you have to meet criteria forthat level of care, and they are
very strict about that, thenthere's a respite level of care.
So this is another thing peopledon't know. If you have your
person at home and you need abreak for whatever reason, you

(57:13):
need to go to a family reunionor a wedding, or you're sick or
you're tired, you can put yourperson into a contracted
facility with the hospice agencyfor five midnights, and that is
covered by the respite benefit,that's for the family. And then
there's continuous care, whichis when they can bring someone

(57:33):
into the home to like I had apatient we did continuous care
on she was a young woman. We hadall kinds of infusions going on
her. And that pays more, and itpays per hour, not, not per day,

right, right? Okay, so that really
clarifies that that's reallygreat, yeah, to to understand,
because I think you know, andthis is the problem that,
because we don't know, we canget taken advantage of and be
told that this is going tohappen, like when my mom was put
into palliative, which honestly,like you've just described
palliative very, verydifferently, which is the way

(58:08):
that I pictured it, is how youdescribed it, is that, you know,
it's a separate program, right?
And when my mom was supposedlytransferred from hospice to
palliative, suddenly she's on adifferent floor, and now a new
social worker came in and said,Now your mom, these are all the
programs that she's gonna she's,you know, are available to her,
you know, all kinds oftherapies. And by the way, none

(58:30):
of them, nobody came in forthem. I couldn't get them. You
know, it was just sort of just,you know, the rundown sales
pitch, the sales pitch, and thenI never, and other of experts
who are in this field have saidthey describe it different than
you. So it's like the palliativeis the umbrella for for hospice,
for all kinds of comfort care.

(58:56):
See, this is audience. This is

completely different palliative palliative
is also like, you can havetreatment while you're on
palliative care you can't whenyou're in hospice. You know,
like they're they're reallyclosely linked, but they're not
the same program at all, not atall, although some like my
hospice agencies, we do havepalliative programs in my

(59:20):
hospice So, but it's not thesame. It's not the same, it's
completely different. There wehave a palliative program and we
have a hospice program, right?

See, that's how I pictured it, because I was
like, okay, hallelujah, it'sbeen four months, and my mom's
been suffering. She's going togo into palliative and now she
can get a wound back and awound, and

it may she should have been, she should
have been able to do that. Yeah,right. And

the whole thing that she actually needed,
that I was begging for, becauseobviously they didn't want to
pay for it. So, you know, thisis what we were going through
and, and, yeah, I think it'swell, and

it's not, in your case, I'd say they
didn't want to pay for it, but,and we don't do wound vacs
either, because, you know, we dopalliative. Of wound care. What
are what? We know that. You knowthe skin is an organ, and when a
person is dying, their organsare shutting down, and they're
going to get wounds. We havesomething called a Kennedy ulcer
that patients can get wheretheir skin is just it's beyond a
stage four, it melts away. Youcan see their bone. You can see

(01:00:15):
their tendons. We can't fixthat. Their nutritional status
is in the tank. There's no, noway we can fix that. And so we
do what we can do to make surethat the person is comfortable,
you know, as pain free aspossible. There's no smell, you
know, from the wound. We do whatwe can palliatively, so we can't
cure it, and so that's why wewon't do a wound vac. But also,

(01:00:36):
I want to tell you something,you know, I know it seems like
that the government's not doinganything about these bad actors,
but I can tell you from myexperience in my agencies that I
work for are top notch. Theyare. There's nothing you know,
we're above board on everything,like we don't do anything we're
not supposed to be doing. We'vebeen audited multiple times.

(01:00:57):
They read our documentation if aperson did not qualify for
hospice, if they did not qualifyfor General Inpatient level of
care, we pay back money.
Sometimes it's hundreds of 1000sof dollars, sometimes it's
millions of dollars. It happensI more than one hospice agency
that I have worked for has hadto pay back money. The first one
was probably about like 16 or 17years ago, and I will never

(01:01:22):
forget, we weren't on an EMRelectronic medical record at
that time. It was all paper.
They were in our conferenceroom. There were charts spread
from one end of the table to thenext, like all this long tables
all pushed together with allthese charts, and we had to pay
back millions of dollars becausewe had patients who they said

(01:01:42):
did not qualify for hospice,

Susie Singer Carter (01:01:45):
and we, we were they not, did they not
qualify? Or do? Who? Whosemistake was it?

Hospice Nurse Penny (01:01:50):
So it was, it was our well, it was. So
here's the problem. It's like,it's a mistake, according to
Medicare, but these are patientswith dementia, and dementia is
insidious. You never know howlong it's going to last. It's
very, very hard to prognosticatedementia patients right. They
can go for years with dementia,and you think that they're

(01:02:12):
failing, and what happens a lotof times is they'll get an
infection. And we haveguidelines we have to follow
that determine like, if a personis likely to live six months or
less. There's a specialguideline that we look at so
they're failing. They get aninfection, they go to the
hospital, and we're like, okay,they they're going to need to go
on hospice. It looks likethey're really at the end. Now,

(01:02:33):
they get antibiotics whenthey're in the hospital, then
they come home and they're onhospice, and guess what? Those
antibiotics kick in and theylive longer. And we're like,
ooh, like, what do we do? Weneed to kind of watch and wait a
little bit. We need to make sureMedicare says from the moment
that you determine that a personis no longer eligible for
hospice, you have to dischargethem. Well, we're in this

(01:02:53):
position where now we have thisperson in hospice. We've got all
this equipment in there supportfor the family. And are they
gonna Are they just having agood little rally and they're
going to dive again? Or what'sgoing on? You know? It's very,
very tricky. Or we'll keep themon for a while, and then they
start to improve, and we'relike, ready to discharge them,
and then they fall, andsomething happens, and we keep
them on longer, you know, andMedicare will say, at any given

(01:03:15):
time, if they didn't have a lifeexpectancy of six months or
less, they don't qualify forhospice. So it's really tricky.
And, you

know, can I just say, you know, for someone
who caregiver, for someone whohad Alzheimer's for 16 years,
that's a very long time, and herprogression was very slow,
obviously. And so, you know, Ireally have an issue that I've
since learned of this one sizefits all for, you know, to to
to, you know, say, Well, this isgenerally what happens to people

(01:03:46):
with dementia. Well, you can'tgeneralize it, because
everybody's, you know, somepeople get dementia early onset,
and they die very quickly. Somepeople get it very, you know, a
long time, like my mom got it inher early 70s, and, you know,
and it lasted a very long time.
And so I watched her, but Iwatched her so carefully, like I
didn't want her to live pastwhere she should be living. Who
would want that? That would becruel, right? And so I

you have a great attitude, Susie, but lot,
not everybody, not everybodyfeels. So I understand

that. And it can go either way. Some
people push their family memberout the door, kick them out,
whether you know, they're oldand they have directions, you
know, and I've seen that too. Ithappened in our family, right?
But I can I ask you one other,you know, professional question,
because, and I'm going to get alittle bit, you know, selfish
here with my question, but Ithink a lot of people will learn
benefit from this. Is that whenmy mom after her first, her

(01:04:39):
second, she was, she was she wasdischarged too early on that
first hospitalization, she hadto go back, and then she was
discharged. And long storyshort, but she ended up having
to go to a emergency hospitalbecause they, for some reason,
didn't send her back to they tothe regular hospital, and she
ended up in you. In a very smallemergency hospital here in Los

(01:05:02):
Angeles that I didn't know thatthey were notoriously not good,
and I had already, at that pointsaid I gave a directive of no
intubation, no more intubation.
I do not want her intubated ifshe can't breathe on her own,
then that she cannot breathe onher own. And so when I got to
the hospital, guess what? Theyhad intubated her. So I get Uh
huh. So I get a call from thedoctor, the ER because they told

(01:05:26):
me to go home, because only oneER doctor and they would call me
the next day, not that day. Thenext day, I get a call from the
ER doctor. You just say your momis on life support. What do you
want to do? Well, okay, I didn'tknow she was going to be on life
support. That's not the last Iheard. But let me get my family
together. And you know, ofcourse, we don't want to keep

(01:05:47):
her on life support anyway. Longstory short, we My family comes
together. We say, of course, wedon't want her on life support.
Take her off of the breathingtube. And I say, one of my
questions is, how long do youthink it will be? You know, what
should we expect? And, you know,he said the in the state she's
in two hours a day tops. So, youknow. And so they had turned off

(01:06:11):
her G Tube. They turned off anyoxygen, any oxygen, everything,
you know, nothing. She hadnothing. Four days later. And I
know we talk about rally, and Iknow what rally is i Well, first
of all, let's just preface thisby saying my niece came. Who's
when i She said, Oh, nanny's notfeeling anything. She's they've
got her on it, on a fentanyldrip. And I was like, Why is she

(01:06:34):
on a fentanyl drip? And I calledthe doctor, and he said, Oh,
because she's allergic tomorphine. Well, first of all,
she's not allergic to morphine,okay, but why is she even on?
She's not in pain. Mom wasn't inpain. And if we're letting her
die naturally, if it was, if itwas, you know, and I'm learning
all these terms, if it was, youknow, a lack of, what is it an

(01:06:55):
oxygen when she has a oxygen,hypoxia, yeah, then that would
be one thing, but I get that,but it wasn't that there was
something wrong. Something hitme wrong about it. So four days
later, we're sitting vigil,vigil with her, and my nephew's
there, and we all love her somuch. And she looked like she
was dying, like her mouth waslike, you know, the jaw was down

(01:07:16):
to her belly button, right? Andshe and we were like, you know,
just, I literally my daughtersand I were, like, pushing her
over to the other side, like,it's okay. We love you go, you
know. And I mean, my daughtersuffered incredible, horrible,
you know, depression after that,because she felt like she was
like, accomplice, you know,trying to kill my mom before she

(01:07:40):
was ready. And my mom out ofnowhere, my nephew said, Aunt
Susie, I don't think nanny'sdying. Look at her. And I went,
this is like, at three in themorning, and my mom is, like,
wide awake. She's like, and I'mlike, she's like, hallelujah.
What? I'm hungry. And I'm like,Oh my God. I go, Mom, you're a
troublemaker. You're a freakingtroublemaker. What is going on
here, right? I call the doctor.

(01:08:02):
The doctor tells me that she is,he said, what I've never seen
this is he goes, Well, first ofall, I just want you to
understand that by now, herorgans are starting to shut
down, and there's no turningback. I said, Okay, well, can
we, can we test that? Just so Iknow that that's the truth is
that they are shut down. And hesaid, Yeah, we can do that. So

(01:08:24):
my daughter and I went to, likea local hotel just to take a
shower. By the time we got back,my and he said he was going to
take her off of the fentanyl fornow. And so by the time we got
back, my mom, my mother, wasback to the jaw, down to her
belly button. And we said, why?
What? Okay, is this that she wasrallying what's going on? The
nurse comes running. She goes uptaking your mom off of fentanyl

(01:08:45):
doctor's orders. And I said,Well, I thought she was supposed
to be off the fentanyl. No, hecame this morning to see her,
and he said, to up the fentanylevery half hour. And then when I
when he came to see me, he said,So you're right, your mom's
organs haven't shut down, so I'mgoing to start the feeding tube
back up, and we'll release herand get her back to the and put

(01:09:07):
her in hospice. That's whenhospice came into the play. So

this thing about then she lived longer
after that, six

Unknown (01:09:16):
months, six months. So

I mean, I've never worked in the ICU,
but I think it's pretty standardto put somebody who's into
extubated onto some kind of adrip, because they could
experience respiratory crisis.
And even if a person is activelydying, you know, we still want
to make sure that we're managingany symptoms that they're having
so that they can be comfortable.

(01:09:41):
So I think that's prettystandard, but it definitely
sounds like she was probably alittle over medicated. When

Don Priess (01:09:47):
they took her off the ventilator. She was
breathing fine. She had oxygen.
Was fine, you know. And in fact,he said, everything's back to
normal. I goes, I've never seenthis.

He literally said, Penny. He goes,
I've never seen this before.
It's a miracle. It's a miraclelike that. And I was like, I
can't believe it planning, am Ion? I

know I can't believe they intubated her
when you I mean, I believe youdon't. You know twice well that
she when you told them not to.
And I just, I feel like you havea lawsuit. Like, what the hell
you were her? I'm assuming youwere her healthcare
representative,

right person, legally? Yes. I mean,

I don't understand how they were doing
all of these things, even whenyou expressly said, don't it's
one thing, if you don't say, doit, you know, like, if you don't
say, Don't do it, becausethey're going to err on the side
of life, they always do. But ifyou're saying, Don't do it, and
then they do it. I mean, that'sunethical. And I'll tell you
something else about withdrawingso and you were comfortable with

(01:10:49):
it, and that's great, butsometimes people have a really
hard time withdrawing. It'seasier to say don't do it than
it is to say, take it out.
Because when a person has anevent, it's and you don't do an
intervention, they're dying fromthat in that event, right?
They're gonna die from whateverhappened to them. But when you,
like, say, put in a feedingtube, and then you feed them for

(01:11:11):
a week or two, and then you'relike, oh, things aren't going
well, let's pull the feedingtube. You're so far away from
that event that it now feelslike you're starving the person
to death, and you made thedecision to do that, and it's so
much more personal. And, youknow, it's just a harder thing
to do than to to just say, Don'tdo it in the first place,

right? And I would have, you know, listen,
I'm not, I'm not a doctor, but Iwould have known that if my mom
stopped eating, if she went likethis, you know, turned her head,
but my mother was a, like a,like a baby, used to break my
heart, because I'd come in andgo, morning, Mommy, I'm here,
and she'd have, as you probablyknow, as a nurse in hospice,
because she was on MPO there,there was like clogs of like

(01:11:55):
mucus that were stuck to the topof her mouth, in the back of her
throat, that I had to pry outfirst,

because she was so uncomfortable, they weren't

doing it.
Open her mouth, up like this,like a little bird, and go like
that. To show me, I go, I know,I'm gonna get it out. I'll get
it out. And then I give herjuice. She was just, you know,
just, there was no life until Iwalked in. And then I'd give her
juice, and she'd go like that.
It's heartbreaking. Yeah, it'sheartbreaking. My

dad was Was he loved food too. He grew up
really poor in Texas, and thenhe went in the military and
really made a good life forhimself, and worked at Boeing
for a long time, and died whenhe was 69 and he loved to eat.
Loved to eat, and that was theone thing we always say hospice
did for us was when he was inthe hospital, he was on a fluid

(01:12:44):
restriction, he was on adiabetic diet. He was just
miserable. And as soon as we gotthe hospice consult, I was like,
here's your Dr Pepper. Called mysister. We need a big, huge
vente, Starbucks. Stat. We wentto an all you can eat buffet
that's called the Golden Corral.
It's like the all you can eatmeat buffet. We piled that plate
with meat, took it back to him.

(01:13:08):
He had a really great last meal.
My sister and I still morbidlyjoked that we think we might
have killed him with that lastmeal, because it was just
outrageously huge. But he What away to go. Ate it, you know, and
then he told the nurse thatevening, I'm about ready to hang
it up. And she went to go getsome Lorazepam for him. She came
back in, he was having agonalbreasts, and he died. None of us
were there. We'd already saidgoodbye. The plan was to take

(01:13:31):
him home. The next day. I wasgoing to be his hospice nurse.
We were going to take him home.
I was completely blindsided. Ihad no idea that he was going to
die that fast. It was, Icouldn't believe it, but it was
the way he wanted to go. He wasjust ready. He was like, I'm

out of here. That's so important. It's
like, you know, we interviewedpeople that have been on MPO
that, you know, have had to doit, that are caught, you know,
cognitively, very healthy, andsaid it, nobody wants to live
like that there that is not aquality of life. You know,
there's when, and especially ifyou are toward at the end of

(01:14:08):
your life, in your last chapter,your last you know, in your
Epilog really, there's nothingthat is a visceral life. Thing
is to eat. It is what it is thelast joy that we have next to
music and, you know, those andtouch and and it was like, why
would you want to take that awayfrom anybody? It doesn't make

(01:14:29):
any sense to me. You know,

they give death toll prisoners their final last meal.
They give death toll prisonerslast meal, anything they want.
Why do you think they do that?
Because that's in as a humanbeing, that's that's their last
joy, and that's so why would wedeprive our loved ones anything?
But that, it does not make anysense, that is live an extra
day. Yeah,

that's one of the big myths about hospice.
And obviously it wasn't a myth,in your case, Susie, it was. It
was your reality. But. That westarve people and no, we want
people to enjoy whatever theywant to have at the last part of
their life. Usually they don'twant too much because they're
dying, and their dying bodydoesn't need food, but we
encourage them to eat whateverthey want. Like you don't need

(01:15:14):
to be on a diabetic dietanymore. If you're on hospice,
you can have whatever you want,you know, and food. Food Food is
love. Like we celebrate withfood at funerals. We eat food at
weddings, birthdays. You know,it is love, and it's the one
thing that family can do fortheir person, that's you don't
have to be medical to givesomebody food. You know, you can

(01:15:35):
give them. But a lot of times,people have a hard time letting
go of food when, when the personis dying and and feeling like,
now that they're not eating,they're going to starve to
death, and that's going to bepainful, you know? And we say,
no, they're not going to starveto death, they're not, they're
not. They're going to die fromtheir disease. They're not going
to die from starvation, youknow, it's just part of the

(01:15:56):
process.

When you're ill, like when I'm ill, I don't
feel like eating, like, youknow, right? So exactly, and you
know, I'm not gonna have myfamily's not gonna come and go.
You have to eat. Eat this. No,I'm gonna, you know, it's like,
you don't want to eat. You don'tfeel like it. If you're close
your mouth. When I'm depressed,I don't want to eat like that.
You can't get a morsel in mymouth and I'm depressed. That's
just the way. I'm the

opposite man. I'll eat in the damn house
if I'm depressed. I know

there's two ways to go. Yeah, there's both
ways. It's either like me, Donknows me forever. I'm like, I
can't, he'll go, do you want alittle No, don't I don't want
anything. Like, I cannot eatwhen I'm depressed. But I mean,
I mean, I looked for those signsin my mom. I looked for those
and I knew I was, you know,those are, those are things that
you know, as a human being,that's instinctual, like, if

(01:16:42):
someone doesn't want to eat, whywould you force them, unless
they were, you know, unless youhad a doctor going, listen, this
is a little baby that has tohave this nutrition, and then
you would do it, you know,intravenously, whatever the case
may be. I'm getting off topic,but the point is, what else,
anything else you want to sayabout our conversation? And I
really am so appreciative. Icould talk to you for like, two

(01:17:03):
more hours just so I could just,I could just be cathartic with
you so you can go, Oh my God,you poor girl, because I wanted,
because when you were, when youwere writing back to me, I was
like, oh my god, she doesn'tknow me. She's thinking, I'm
like, crazy. I didn't do myresearch. I mean, honestly, like
you have to, I hope I encourageyou to watch our documentary,
because I'm very proud of the ofthe experts that we aggregated,

(01:17:26):
who are truly, you know, justbrilliant, genius people that
have been doing this fordecades, who know that industry,
know the business of theindustry, that part of it and
the things that we're upagainst, and their only goal is
to is for the quality care ofour you know, it's, it really is

(01:17:48):
a, it's, it's a, it's a humanit's a humanity problem. It's a
problem. It's, it's, what we'retalking about is humanity, and
people have lost that, for theaged and for people that are
disabled, there's a lot ofthere's a lot of stigma, and a
lot of, you know, disregard,disregard, because there's a lot

(01:18:10):
of misunderstanding. So

so do you want everyone to have that
opportunity, to have to have thetype of care that you give, the
type of hospices that yourworld. We want everyone to have
that opportunity, because theydon't right now, and I think
that's, that's our goal, yeah,

and we exist and we're not. We're not,
you know, like the red herring,there's more of us than than the
bad ones. If you have a bad one,and you look for the bad ones,
you're going to find all the badones. But there are, are many,
many more really great hospiceagencies. People who go into
hospice mostly go into itbecause they do care about other

(01:18:56):
humans and want to providecompassionate care for them at
the end of their life. And it'sreally disheartening to know
that there are not only theseagencies that are bad, but the
people who work for them. Youknow, life breaks my heart to
know that there's these nursesor social workers that really
don't give a damn about thedying people. And it's it's

(01:19:16):
really hard to hear that. I knowit exists, but in my experience,
and I've been in this fordecades too. I haven't met a
whole lot of people who weren'treally good at what they do in
hospice. And all the agenciesI've worked for or worked with
have been fantastic. So, youknow, I think that the most
important thing is, again, justpeople really need to know what

(01:19:38):
their rights are. Make sure thatyou advocate for yourself if
you're not getting the care thatyou want for your person, and
that doesn't just go forhospice. That goes for anywhere,
whether your person's in anursing home or in a hospital or
wherever they are, if they'renot getting good care, you know
advocate you know nobody caresabout you or. You're a person

(01:20:00):
more than you do. You're not.
You're not. You know you it'sjust important to be able to
stand up for yourself and say,This isn't right. And you know
what if, what is it? They say,if it quacks like a duck and
walks like a duck, it's a duck.
If you have a bad feeling aboutsomething that's going on,
you're probably right.

Yeah. So I agree. I agree. What do we do
about the people that don't haveadvocates? That's the thing that
breaks my heart, because soyou've got all the and that's
why it can go that's why thisneglect and this abuse can go
on. Because many, many peopledon't have it, even if they have
families, their families don'tunderstand what can go wrong. So

(01:20:39):
they figure they're in a they'rein good hands. Like, you know, I
used to say on my podcast when Igot my mom into this five star
facility here in Los Angeles, Ican sleep at night now my mom's
being well taken care of. Thankyou. Thank you so much. I feel
like I was so proud of myselffor getting her in there, right?
And, you know, we don't know.
Yeah, we don't know. So what?

(01:21:01):
Any, any, I

don't have the answer. I don't have the
answer for that. You know, Idon't know because, again, it's
like, I've had patients who hadguardian ad litem, they had no
one to advocate for them. AndI've had fantastic guardian ad
litems, which are legalguardians who who did advocate
for their person. They caredabout the person. And then I've
had some that they didn't give ashit about them. They were just

(01:21:22):
collecting a paycheck. You know,I mean, you report them, you
report them. That's all you canreally do. You know, it's, it's,
I don't, I don't know. That'sthe only answer I have. I don't
know what the answer I think,like I said, the healthcare
system is broken. It's justbroken. It it's, it's
everything. It's not justhospice it's not just a nursing

(01:21:43):
homes. It just goes deeper thanthat. It's just really, really
broken, really broken.

Hey, listen, thank you for what
you're doing out there, like youhave such a good following, and
that is fantastic, because, youknow, listen, nobody wants to
talk about death. You want to.
You're talking about it. And Ias a person who been scared of
dying since I'm three years old,my first anxiety attack was
like, asking my dad, where doyou go when you die? And he was
like, you have 97 more years.

(01:22:10):
Get back to bed. And I was like,but I need to know. I need to
know. I want to understand. Idon't get this heaven thing. I'm
not sure. Do we dress up? Do wego to school? What do we do? You
know, I didn't. I was very, verydisturbed about this whole
concept. And, you know, aseveryone knows, my mom and I had
a pact, we're not dying. That'sfor other people, right? So it
was a joke. And, of course, youknow, but you know, I think that

(01:22:34):
that we all do not embrace it.
And when I say that my momtaught me how to die, that's,
that's no small potatoes. Thatwas a huge, huge thing. And it
was. And as one of my otherguests told me, who was a doula,
said, when you're, when the timecomes, you're going to be,
you're so strong, you're goingto you're going to see what a
beautiful experience it can be.
And it was, and I was so glad Iwas there with her. Like I

(01:22:57):
wouldn't trade that foranything, anything. And so what
you're doing is to talk about itand normalize it is such a gift.
So thank you.

Thank you for having me on. I really
appreciate you inviting me on.

Thank you. All right. Well, very happy to have
you. Yes. I mean, this is, thisis a conversation that should
keep going. We should keep thisalive, because we have so many
loved ones, you know, our lovedones, and then ourselves. This
is, this is for everybody.
Because unless you're in the top1% everyone's gonna

have to, don't you like me, don't do la,
la, la, la,

okay.
Everyone's good. No, you can'tbe an 8% 100% with death,
whether it's somebody that we weknow or we care about, or
ourselves,

right, right? Yes, absolutely, and,
and, yeah. Well, we're gonna,you know, tie it all up, Don
bring it home, absolutely.

Well, this is in the long run, really, this is really
all about love, isn't it? SueYes. It is always yes, and that
is because love is powerful,love is contagious, and love
conquers all's we thankeverybody for watching,
listening today. If you likewhat you see, like us,
subscribe, do all those funthings, and definitely visit
hospice nurse Penny. We'll haveall her information up in the

(01:24:20):
show notes and anything else.
Susan,

no, go on and have a great day, and we'll
see. We'll talk to you nexttime.

Absolutely Take care everyone. Bye, bye. You.

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.css-r6mb8g{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:1;overflow:hidden;}Bookmarked by Reese's Book Club

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HOSPICE NURSE PENNY HAWKINS SMITH: UNRAVELING HOSPICE CARE & NORMALIZING DEATH AND DYING ONE VIDEO AT A TIME

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