What happens when you sign a parent into or up for Hospice care services?

Episode Transcript
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Nancy May, Host Eldercare Success: Hospice. (00:00):
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Hospice.
It's one of the most excruciatingdecisions you'll have to make.
What happens next?
Stay tuned.
This is part one of a two part show.
Hospice is one of the most difficultdecisions you'll ever have to make

(00:21):
in your caregiving life and journey.
I'm breaking this topic into two episodes.
The first, I'll share some things abouthospice that you might not have guessed.
Good things and maybe not so good things.
But it's important toknow how hospice works.
Part two, I'll go into details aboutmy own experience with hospice and

(00:43):
some of the experiences of others.
I might add an extra special bonus.
Stay tuned to the end of episodenumber two, because there I'll let
you know what's going on next in theEldercare Success Hospice Series.
These Eldercare Success podcastepisodes are designed specifically,
to make a difficult time,hopefully just a bit more bearable.

(01:05):
although that's next to impossible,if not outright impossible
impossible, because you'll be facingthe loss of your mom, your dad,
your spouse, or another loved one.
when that happens, the immediateemptiness of them not being in
the room with you is brutal.
I apologize if this is kind of harsh.
It's not intended to be.

(01:25):
My intent here is actually to help softenthis time for you and hopefully make the
time for your parent, the person who'spassing, just a little bit more gentle.
But let's get on with the rest ofthe show, First, let me explain
that hospice, like many businessentities in the aging care industry,
have changed over the years.

(01:46):
Hospice, which was first developedin the UK, is now alive and well in
the United States, as we all know.
However, although we typically knowHospice as a not for profit, mission
driven, charitable institution,Hospice has become big business here
in the United States and elsewhere.
Right now, 72 to 74 percent or 7 outof 10 hospice organizations are run

(02:10):
and managed as for profit companies.
The rest are government owned andlicensed not for profit entities.
private equity is now big into the hospiceindustry and this trend is increasing as
PE and other private investors are alsogetting into the aging care business.
unfortunately, thereare a lot of complaints.

(02:30):
although generally most ofus who deal with hospice have
had pretty good experiences.
Mine have been good except there area few little wonky things along the
way, which I'll explain in episode two.
but unfortunately.
When a private equity, venturecapitalist, or even private institution
gets involved in building or extractingvalue out of a hospice institution,

(02:54):
things may get a little wonky.
I'm going to stop right there for asecond and explain over the past 30
years, I've worked with public companiesand large for profit institutions,
when an investment group or other entityacquires another company, then says
something to the effect that they'relooking to extract the most value
for a company, for the investors andstakeholders, things more often than not.

(03:19):
Get unpleasant
and many, including customersin this case, caregivers and our
families lose out in the end.
it may not be obvious to them, or you,but it's the little, even the big things,
that can become more painful to ourpassing loved ones, and you, in the end.
let me back up here a minuteand explain that not for profit

(03:40):
institutions are created to fulfilla mission, hence they are also
called mission driven institutions.
The mission?
To do well for those that are passing,at least in the hospice industry.
While for profit or public and privateequity led companies are in business
to make money, Their prime objectiveis to pay dividends to their investors,

(04:00):
stockholders, and other stakeholders.
However, I'm sure you already know this,but not for profit institutions cannot
survive without, focusing on profit too.
That's important, especially inthis particular case, because we
don't want them to be destitute.
Especially when taking care of our folks.
the difference with the not for profitversus the for profit in this case is

(04:23):
that their revenues and profits arefocused on delivering more and better
services or products to the market,be they consumers or patients...
All that said, when you're facedwith a decision to put your parent
into hospice care or not, ask ifthe organization is a for profit
or not for profit hospice agency.
Please know that you may nothave a choice in this one.

(04:44):
when this time came for my dad, the firstthing I asked was this question, because
I'd heard all sorts of horror storiesabout for profit hospice organizations.
I was very bluntly told that the agencywas a for profit, but I was also told that
I didn't have the choice, because theywere the only agency serving our area.
You may not have a choice either, butit is certainly well worth asking.

(05:07):
If you do have a choice, please takethe time, as much as you have, it
may not be a lot, to make sure thatyou're making the right decision
on which agency to select, whetherit be for profit or not for profit.
And if there is more than one in yourarea, and they're both not for profit,
or they're both for profit, again,take your time to do your research

(05:28):
to make sure that they have a goodreputation, and that there are no,
I'll call them dings against them.
Now, let's move on.
The next thing that you're going to befacing is the actual signing of papers
for hospice, even making that decision,you are likely going to be pressured by
a doctor, the hospital, or other carefacility to make that decision to put

(05:50):
your mom or dad under the care of hospice.
It's a very difficult decision.
I don't care what anybody says, even ifthey think it's the best one to make.
It's still hard.
this is how things happened for me.
We knew we were dealing somedifficult times with dad.
But, unfortunately, it came to a pointthat Dad was in the hospital, and my lead

(06:11):
aid was the one who was pressured intotrying to make this decision for Dad.
Beside herself, shedidn't know what to do.
Well, I'm glad she didn'tmake the decision for me.
And she reached out.
She called, tears in her voice, barelyable to get the words out, and with
the help of a nurse told me exactlywhat we're dealing with and the
decisions that we had to make for dad.

(06:33):
I was 1200 miles away, and I haveto tell you, just thinking about it,
discussing it here, I'm losing mybreath as we're talking right now.
It's a tough decision no matterwhat, but we were pressured to do
what we were told was right for dad.
at this point, as hard as it was, Iknew we were making the right decision

(06:53):
because we couldn't go any further.
we fought like hell anddid a good job of it.
But finally, Dad's body was givingout, and there was no choice.
At 99, I think we did a pretty good job.
And, if Dad were here at myside today, physically, I
know he'd say the same thing.
but at this moment for me, papers werefaxed, signatures were required, I bought

(07:18):
an airline ticket and I felt as thoughI was in a fog moving at lightning speed.
I called my sister and explainedwhat was going on, and she met me
there too a couple of days later.
I'm sharing this because wereally do not know how we'll feel
or react when faced and in somecases forced into the decisions
of having to sign hospice papers.

(07:40):
when it comes to this point andpresuming your parent is in the hospital,
which is quite often what happens,You'll have a choice to take your
parent home, or hospice at home, orto take them into a hospice facility,
if there is room in that facility.
Hospice at home is just that.
you'll be responsible for most ofthe care that your parent will need.

(08:00):
With the guided, what I call a D.I.Y.
And how to question checklist.
You'll get regular visits by the servicecare providers and check ins from the
hospice agency health care professionals.
But the good news is that youactually have a 24 7 hotline to call
with any questions along the way.
This I highly recommendyou take advantage of.

(08:21):
Hospice will also give youa book on what to expect.
I I have to laugh because as I read thatbook and I went through it with a fine
tooth comb, I thought, hell, I couldprobably do a better job of writing
this myself to explain what's goingon, even at that stage of the game.
My lead aide Millie laughed andsaid, yeah, I think you could too.

(08:42):
but we were just in thethroes of what to expect.
the other type of hospice careyou'll have a choice of is
inpatient or hospice care facility.
This is a place that yourparent would be taken to where
there is on site hospice staff.
It's kind of like a hospital setting,although many of them really try and
make their facilities look homey andcomfortable And just nice, although

(09:06):
I'm not sure nice is the best word.
you can choose this option if you preferversus having mom or dad go home to pass,
but I have to tell you, there may not bespace for you, so please be aware that if
that's the case, don't take it personally,it's just that there's no room at the Inn.
the two descriptions I've givenhospice at home and an independent

(09:28):
hospice care facility arereally very simple descriptions.
There's a lot more detail to both,and I really do recommend that you
get to know your hospice organizationsbefore you even get to this stage.
I know, you really don't even wantto talk about it because that's
kind of facing the inevitable.
I didn't want to either, butit's important to know what your
choices are going to be whenand if you get to that point.

(09:52):
I say if, because sometimes death happensreally fast and we're not ready for it.
And yes, I'll have to admit, I hateto use that D word, but we're gonna
use it here for practical terms.
The next question you might haveis the cost of hospice care.
Now, you've probably been toldthat hospice doesn't cost anything.
Well, that's not entirely true.

(10:14):
Please, when and if you're readyto sign up for hospice care, ask if
there are any out of pocket costs.
See, if your parent doesn't haveany insurance at all, sometimes
you'll have to pay for this.
Although, many not for profits makesure or try to make sure that those
costs are covered by donationsand other support that they get.

(10:34):
But that's not always the case.
however, most of these costs ofhospice services, if not all, with
many agencies, will typically becovered by Medicare or Medicaid And
a supplementary insurance policy.
But it's always better to ask questions.
I say that because you don't wantsurprises at the end and find out that

(10:54):
you're stuck with a bill, and it couldbe a hefty one too, for equipment
or other things that you might notnecessarily expect that were not covered.
You don't want to be pissed off ashell at the end and just angry because,
honestly, dealing with the loss ofa parent or a loved one is difficult
enough, let alone to deal with angerbecause now you've got mounting bills.
It's okay to be angry at something alongthe way, but please don't do it now.

(11:18):
Reserve that for later.
It's just a heads up.
So the next steps, after mom anddad have been brought home or
in the hospice facility, theywill be officially admitted.
Meaning, they're going to be signinga lot of paperwork, you're going to be
asked a lot of questions, and this isgoing to be extremely, I'll say, clinical.
It's not about you, it's not aboutthem, it's just about the process of

(11:40):
what they need to go through, theymeaning the agency, the hospice agency,
in order to make sure all the T'sare crossed are dotted, and that your
parents get the best possible carethat they can provide at that time.
beyond the basic hospice agencydocuments, you may also be asked
to sign or hand over the following.

(12:00):
Necessary insurance forms, militaryservice documents, especially if they're
going to be buried in a veteran's cemeteryand you don't know where they might
be going to next, power of attorney,A living will advance directives.
A pulses a most or DNR by the way.
you are going to need a DNR at any case.

(12:21):
On all those three documents, you'regoing to need at least one, which will be
placed on a yellow sheet or red sheet orcolored piece of paper on the wall next
to your parent's bed while they're inhospice, either at home or at a facility.
It sounds really cool and callous.
But it's going to helpyou, and it will help them.
you'll also be asked to signa patient agreement or consent

(12:43):
to receive hospice care.
if your mom, dad, or loved one whoare being signed into hospice care
cannot sign this themselves, youwill be the one responsible to do so.
You'll also be asked to sign anagreement to the facility rules
or the requirements of the agency.
If it's a home hospice agency,you'll also be asked to agree
to their rules and requirements.

(13:04):
Typically, that includesagreeing not to call 9 1 1.
You see, if you panic and call 911when you're dealing with home hospice,
typically that means that your parents aregoing to be kicked out of the hospice care
system, but that's for another episode.
You will also lose your own physician andthe hospice physician and medical care
team will be in charge at this point.

(13:26):
The good news is that you can callthem at any point in time, not their
primary physician, but the hospicemedical care team and their switchboard
to ask any questions along the way.
This is something I recommend that you do,Even if you don't know what to do next.
They're there to guide youalong every step of the way.
Now, let's say hospice is in full swing.

(13:47):
We're going to talkabout home hospice first.
Your experience, no matter who youare, or what your agency is, whether
this is the first time, or yoursecond, or your third time, or you've
heard it from someone else, yourexperience is going to be different.
Every single time, trust me on this one.

(14:07):
This is because the team that you'redealing with is likely different.
The exact details of your parentshealth or health situation or passing
situation is going to be different.
Mom is going to be different than dad.
It was for us.
And I've seen that samething with other people too.
And your emotions are high no matter what.
Facing the passing or death of someonethat you love so much is excruciating

(14:31):
And we're either growing strong,sometimes callous, we may become weak
and fall apart, or learn to softenfor ourselves and others around us.
hopefully that understanding issoftening for the one that's facing
those final days, and yourself too.
I wish I had another way to describethis, but honestly, I don't.

(14:52):
I'll share more of my ownexperiences in part two next week.
Thankfully, the hospice teamthat we had was there to guide
us through every step of the way.
Quite frankly, my team, my sisterand I were, Kind of a PETA at times.
I'll call it a pain in the you knowwhat to the hospice agency, because
we called at the drop of a dimewith a question, whatever it was.

(15:13):
If we didn't see it inthe book, we'd call.
If I couldn't find it online, we'd call.
And they were always so kind and good inanswering our questions on what to expect.
They also always made sure, or we asked,what the ETA was of the care professional
who is coming out at any point in time.
Just knowing when somebody is goingto arrive is going to give you just

(15:33):
a little bit more peace of mind.
If this is your first time, or asI like to say, first rodeo through
this experience, ask tons ofquestions, as I said, and don't be
afraid to ask what death looks like.
Hopefully you'll have a close friendor family member who's willing to share
this intimate experience with you.
However, each person's passing,as I said earlier, is different.

(15:54):
Be that by a little or a lot.
I was really very fortunate tohave a good friend share what
his wife's passing was like.
He shared every physical little detailthat he saw and experienced with his
wife's passing in those final days.
What her body looked like, thetransition, tension in her body, the
modeling, anything else that mighthave happened that he could notice.

(16:17):
It was kind of hard to listen to,but I'm really thankful that I did.
and to be honest, It was alsocalming at the same time.
I don't know why and I can't quite explainthat, but just hearing what somebody else
had gone through and was willing to calmlywalk through every step and every stage
of that experience with me was reassuring.

(16:38):
I have so much respect for thisfriend of mine, and to this
day I am eternally grateful forhis kindness and his frankness.
However, with my mom and dad, theirpassing was different than his wife's,
and dad's was different than mom's.
I can guarantee that whateveranybody tells you, or whatever
anybody has experienced, that isgoing to be different than yours.

(17:01):
It's different also because it'syour parent, it's your loved
one, and it's your experience.
Now, I know I'm jumping ahead alot here, but I want to get through
these main things for you just sothat you understand what to expect.
At the time of passing, if they'renot there and you're alone or with
a friend or an aide or whoever mightbe with you, call the hospice office.

(17:24):
Let them know what's happening andthen let them know that mom and
dad have just passed or that you'reafraid that they're about to pass.
Again, make sure that you have theETA of that team member that's going
to come out and be there with you.
when they do arrive, and should yourparent or mom or dad be in the process
of passing, They will try to bethere with you right to that moment.

(17:45):
If they can't, and if they're not, theywill typically dive right into paperwork,
like time of death and everything elsethat needs to be signed to make sure that
it's on the up, I wouldn't say on the upand up, but it's something that they need
to get done for the funeral home and forthe death certificate and any other sort
of notifications that need to go out.

(18:06):
If you're not doing this yourself oran aide or somebody else is not doing
it for you, they will also gentlycare for your parents body and dress
them as you would like to be dressed.
They will then also call the funeralhome to make sure that they know
that it's time to pick up yourparent for their final destination.
If you have not given them a funeralhome name in the beginning or called

(18:27):
to make sure the arrangements are inplace, this is going to be a tough
one because those final decisions aregoing to be last minute and I got to
tell you they're likely to be costly.
I've heard families taken foras much as $50,000, and I don't
want this to happen to you.
Please do your homework well in advanceof making those final decisions on where
a body or a loved one is supposed to go.

(18:49):
I know saying it's just a body that'sleaving a house is kind of callous, but
as my mom used to say, we're just a shellat this point, and I kind of believe her.
I have several Eldercare SuccessPodcasts that we've done on funerals and
arrangements and costs and what to expect.
And I'll put those in theepisode notes as well.
There's so much more I couldgo into depth into this show,

(19:11):
but I'll go over some of those next week.
Before I end this show, I want to shareone tiny little belief that I think is
kind of interesting and I didn't evenknow about at the end of my parents life.
it was something that my aides toldme about, and I'm glad they did.
There's an old Danish traditionthat says opening a window in

(19:31):
a room of a dying person allowsthe soul to pass after death.
It's also considered a symbol ofletting go and allowing the fresh air
in and the promise of another day.
Many medical professionalsactually practice this belief
too, and our aides did.
aide's daughter is a nurse, and theydid it at the hospitals as well.

(19:51):
When I heard this, I asked,did we do that for dad?
And Millie said, you bet we did.
And when mom's time came,she did the same thing too.
So I kind of think that mom anddad found each other right outside
that window, or at least I hope so.
On that thought, I hope that thisbrief episode will help you get
through this incredibly difficult time.

(20:14):
Hospice is a good organization, nomatter what I said in the beginning
about for profit, not for profit,private equity, and the like.
but they too, like many organizations,are being faced with financial challenges.
That can potentially impact thetype of service and the quality
of service that you receive.
If you have any questions about any ofthat, make sure your voice is heard.

(20:34):
This is not the time to be quietor become a fainting violet.
I think that's the right term.
Here are five things that I recommendthat you do when facing hospice decisions.
the first is ask what you don't know.
The second, ask again if youdon't understand and don't be
afraid to continue until you do.
The third, get to knowwho your hospice team is.

(20:56):
Or, get to know them as individuals,who they are, what they're dealing with
themselves in their own personal lives.
our lead hospice nurse with mom, I foundout was dealing with the passing of
her husband while helping us with mom.
Honestly, can't imagine having todeal with that, But knowing that,
I tried to be there for her, too.
When all is said anddone, take a deep breath.

(21:19):
You will be out of breath.
And know that you'restronger than you realize.
Just mentioning the word hospicealone is tough, because it's a
realization that the end is near.
The end has come.
They may be taking care of us, butwe need to take care of them, too.
On that note, if you take a moment to givethe Eldercare Success podcast a rating

(21:41):
and share your thoughts and comments,I'd appreciate your help in doing so.
You can go to eldercaresuccess.
live and at the top of the page,there's a tab that says rate this show.
You can also leave me a voicemail messageor a comment or a question, whatever
you want in the little blue tab on theright hand side of the page that says,
Send a voicemail message to Nancy.

(22:01):
When you click on that, a popup will come up on the page and
just follow the instructions.
And then Finally, as I always like tosay, if this episode has been of help
to you, please share it with a friend,a stranger, or maybe even somebody that
you see is under a little stress onthe line at Dunkin Donuts, Starbucks,
or maybe even the grocery store.

(22:22):
It could be that they're a caregiver too.
It can be your gift to thembecause it's my gift to you.
Thank you for joining me here todayon the Eldercare Success podcast.
This is Nancy May.
Be well, stay well, take care and bye bye.

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