The Honeywell Center presents Annie, November 2nd.

The inspiring story of an orphan who looks for the good in every situation.

Annie - a musical for the ages.

Ticket Information at HoneywellArts.org.

good evening and thank you so much for watching us here on PBS Fort Wayne show is LIFE Ahead and for a good reason we try on this show to give you education and information which is always one of the goals of PBS but we try to give you a lot of information that might help you with choices you have to make on your LIFE Ahead.

So that's why we call it this each Wednesday night at seven thirty we're on and we have different topics.

We have different guests so we try to give it give you a lot of assorted bits of information and details and we always have guests that can answer your questions.

>> That's the case tonight we're going to be talking about hospice and palliative care.

I have an attorney here with me and I have it a hospice specialist.

So we really want you to come with any concerns that you might have the numbers on the bottom of the screen (969) 27 twenty if you're out of the immediate area, just put a one 866- in front of that and it'll be toll free for you.

OK, I almost don't have to introduce her anymore.

I'm sitting down at the end of the sofa is Jessica Thoreson .

>> Jessica, so glad to have you back.

And you were just on a couple of weeks go as well.

I was talking about guardianships.

Exactly guardianships and then we had talked after the show about you coming on here to talk about this.

>> This is a big, big thing for you and we're going to talk about why it is very important to her and I'm so glad that you invited Leslie to come on because she's a specialist in hospice.

>> Leslie Friedl Priddle.

OK, nice to have you with us.

Thank.

>> It's great to be here.

All right.

Let's talk about why this is an important topic and why for you personally, Jessica, why it's important.

>> So for me personally this is Hospice Awareness Month.

So I really like to kind of talk about this particular topic to educate people.

Yeah, but as an elder law attorney I counsel clients all the time about what hospice is.

There is a lot of misinformation out there and there is just a lot to kind of clear up.

And so any chance I get to educate I love to do that.

But just from a personal note, hospice nurses just have a special place in my heart.

I mean they are hard workers.

They are dedicated nurses and there's just a different level of care that they provide.

Then they have a different kind of compassion, an unbelievable compassion, you know, for the work that they do.

>> OK, Leslie, palliative palliative care we're going to talk about and hospice there is a difference.

>> Yes.

Can you explain that?

>> Of course.

Yes.

A palliative care is really talking about a person that maybe gets a diagnosis, maybe they're getting a diagnosis of cancer and they really are looking at maybe they have a prognosis of about two years left of maybe that's what the disease would progressive when it's normal we're trajectory.

So what they're looking at is maybe they're receiving treatment but along the same lines of when they're receiving treatment they may have the same symptoms that somebody that may be on hospice or as part of the disease may have they may experience pain, anxiety, agitation or they may be looking to figure out what's next in their in their health care journey and what they really need to know about that disease progression.

So palliative the palliative team really can step in and have those conversations and help with those symptoms that they may be receiving because of the chronic disease that they're facing.

>> So then likely I mean it would be customary that their level of care or type of care is going to continue to change as their illness progresses.

>> That's true.

And so what we might see is somebody is going through treatment and they decide this isn't something I want to continue to do.

I maybe have received chemo and and it really didn't go well and I maybe have to maybe facing another round of chemo and they can that's when maybe they talk to their physician and they decide that maybe hospice is more appropriate.

So I see hospice is really for those individuals that maybe have a prognosis of six months or less.

And so what they're looking at is getting a whole team individuals through the hospice team to surround them and take care of them for those that the time that they as they stop receiving treatment speaking and stop receiving treatment.

>> I think when we talked about this one other time with Jessica, isn't it true that like somebody could go into ospice and then they if they get better they can leave hospice and go back again whenever they need it?

>> Is that correct?

That's correct.

Oftentimes once they have the hospice team surrounding him and they're getting that pain under control, then sometimes they we call it graduate off of hospice and they know long rally they kind of rally.

They don't need that maybe don't need that level of care at that point and then they can go off of hospice and then maybe if something in the future happens they always go right back on if they need that.

>> I'm glad you talked about that because I think that's a big concern for a lot of people.

I mean just when they hear the word hospice, whether it's them personally or family members or friends, it's like oh no, they immediately, you know, get depressed thinking this if this is this is the end but it's not always the case.

Jessica, you said that you talk with people a lot about hospice.

What is their biggest fear or their biggest concern generally speaking?

>> The biggest concern is is that word hospice and the fact the doctor generally is going to give a prognosis of six months or less of life.

Yeah.

And so a lot of people were born to fight.

We want to live.

And so I think for a lot of people it feels like you're admitting some sort of surrender to the illness and people don't necessarily want to do that whereas I look at it as it's this team of people who could very well keep you with us for much longer and it is comfort .

So whatever however many days you have left months or even years, shouldn't it be comfortable?

And so if the hospice team can is that to me is a vital piece- of this.

>> You've both said a word that I want to follow up on here.

They both have said the word team, the hospice team or& palliative care team.

What does that mean?

It's not just one doctor that's taking care of you.

>> What is it, Leslie to the hospice team is really comprised of a doctor nurses certified nursing assistants to be able to help social workers spiritual spiritual guide people are guiding you through your spiritual care music therapists, massage therapists.

There's an entire team that surrounds the patient.

>> I just want all of my Koongarra, you know.

Yes.

Can you I mean as as the patient if you're going into, you know, saying OK, I do want palliative care.

I do want hospice, can you talk with them and tell them what you think you would need or want?

Yeah.

So I think that that's the most important part is to make the just to start to have the conversation and see both what's a two way conversation?

What is what is the person want and what do they need and then also what kind of what kind of support do they need from that team?

They may decide that they have their own spiritual leader, that they want to be involved in their care and that is completely fine.

They may want their physician to continue to support them through their hospice journey and that's OK too.

>> Who heads up the team?

How do they decide that?

So we have our own case manager really oversees the whole patient's care and they are kind of helping to determine what resources that person needs, what they need, what they want.

>> OK, got it.

OK Jennifer our Jessica do you want to be Jennifer that we can do that?

>> I was I was born at a time where Jessica and Jennifer were very popular names my daughter's name we thought oh this is unusual whatever until she got to grade school and there were like three more Jennifer's in her class.

>> Oh well anyway Jessica, let's talk about legal documents.

>> Let's say that you know, one of your clients decides or their family decide it's time for them to to seek hospice or palliative care.

What documents do they need to work with you on before you send them over to Leslie?

>> Well, hopefully as you know I always say plan ahead hopefully long before you ever need hospice.

You have talked to an elder law attorney about an appointment of a health care representative.

Sure.

Because that team is going to at some point going to need to be able to communicate with somebody other than yourself.

>> All right.

So explain what the health care representative does.

What's their job?

So their job is to be your voice and to to carry out what your wishes are in treatment plan your health for your health for your health for for treatment plans for comfort accessing your medical records to make sure you're receiving the proper treatment based on what your diagnosis is.

And so the the healthcare representative can can really truly stand in your shoes and be your voice.

So it's really important not only to pick a person that you trust who can really make some decisions quickly and in a very emotional setting.

>> Do they have to have a medical background or training?

No, naturally a lot of people will choose somebody in their family that maybe is a nurse if there is you know, ultimately it really does need to be somebody who can be levelheaded, who can receive that information and really process it and make a decision from the doctor, from the doctor.

OK, OK. What else do you need besides a health representative?

>> So besides that I always think it's important to have a durable power of attorney or some sort of power of attorney.

There's a couple of different kinds but the most common is a durable power of attorney and this is a document that's going to appoint somebody that allows them to handle your finances or business transactions for yourself.

So it's going to be things like maybe paying your bills out of your checking account, maybe it's finishing your tax return ,maybe it's selling your car, accessing your email on your on your computer, on your phone or something of that nature.

And so it really is somebody who kind of handles those day to day transactions that we all do for ourselves.

Right.

So this definitely doesn't have to be a financial background but it's got to be somebody who you trust who stays on top of their own bills and is a trustworthy person.

>> Could you have the same person for both both jobs you can and you can have co people too.

>> So a lot of families will choose if they have a son and a daughter they'll just choose both of them in both roles so that the the son and the daughter can kind of divvy up the work how they see appropriate.

You know, maybe the daughter will take the mom to the doctor and then the son will handle the finances.

And so it just it depends on the family makeup and most elder law attorneys are going to spend a decent amount of time just wanting to get to know you and your family and you know who is in your corner to help with this hospice team or to help with any medical decisions or financial decisions.

your medical team or hospice team would work with the power of attorney or health care representative comes into play a lot of the times a lot of the times we're talking with different family members but then we really need to know who that decision maker is within the family, whether it be financial decision making or health or health care decision making.

So it's really important to have those papers and have those documents and in place because you never know when you're in the different family dynamics different people make decisions.

So having those legal documents really makes a big difference when it comes time to make decisions.

>> I want to know where I mean people think hospice, hospice, hospice.

Do they do they take me someplace?

Do they come to my home?

>> How does that work?

Yeah, that's a really good question because a lot of people don't realize where hospice is where where they hospice care is provided.

So hospice care is predominantly provided in an individual's home wherever they call home.

So if they're in there, if they're in their own personal home or there may be an assisted living or a nursing community, hospice can be provided in any of those settings and they would come to in our team would go to the patient.

>> OK, all right.

Is there a building where people can go if they're not if they if their homes not appropriate or set up for physical care?

>> Many times hospice providers work with local nursing communities to ask for that type of if somebody is needing additional care.

24 hours a day and they don't have that ability to have that care in their home but they also there's inpatient there's inpatient hospice is also an option for those that are maybe having symptoms that they can't that can't be managed in their home.

They can come in and get those symptoms stabilized and then go back to wherever they call home.

So that's what people want to be when you end of life as they really want to be in their own person in their own home.

>> Yeah, we've talked about that a lot lately.

I mean whether it's it's been a case of estate planning or real estate or whatever.

I mean, you know, it seems like every expert advising on this show, no matter what the category, you know, has found that people want to be in their own home as long as they can, which leads me to ask questions about at home care.

>> Do you deal with this at all, Jessica, with clients that come in for legal input?

We do.

And so what we typically most elder law attorney is what they're going to ask for is a list of your assets and what your income is because they are going to want to do a deep dove of how are we going to be able to afford this.

>> Do we have long term care insurance that will pay for it?

Are you a veteran that maybe has some VA benefits that would help pay for these things?

Are you eligible for Medicaid?

So if we start with just getting ourselves organized, who are your decision makers?

What list of assets do we have?

What is your income to really try to figure out what is going to be the best care for you is your home suitable for in-home care?

A lot of older homes just you know, it's really hard to shower without a major remodel.

>> Yeah, that's what I was talking about with Leslie.

It's like what if where you live isn't really set up?

>> Right.

that care piece and that comfort piece and what does that look for you?

And oftentimes it involves in-home care and so a lot of times the in-home care providers are going to work with hospice so hospice will work with your whatever your home health care provider is, whether that is maybe somebody who is doing some light cleaning and some light meal prep and things of that nature or maybe more direct assistance when hospice can't be their medications that kind of thing therapy.

Well, let's talk about some of that in-home care whether it's at a hospice level or or just, you know, more minor needs.

>> Where can you go to find out about that and are there any programs that are lower cost or no cost?

>> How does that work?

Jessica, don't you start so Medicaid does have a benefit to help pay for in-home care.

It's a needs based program though so you would need to add assets on assets and on income and so you would really need to verify what your income and assets were to see if you were eligible for the program.

But then Medicaid does pay for in-home care.

You do have to also meet a health test though.

You have to show that you need help with at least three of your activities of daily living which oftentimes with somebody who is on hospice that's pretty common to help with your activities of daily living.

So it does kind of go hand in hand.

>> I mean for example, not just on those you have to prove three needs like maybe three meals cooking for yourself or maybe bathing and dressing maybe medications.

Would that be an example of the three kind of things?

Yes, more commonly is going to be a lot of mobility issues.

Can you get yourself from a seated position to a standing position?

How what kind of a fall risk are you walking around your home but definitely bathing dressing, incontinence management as well.

Those are all things that are going to be evaluated to see if you meet this level of care for the Medicaid program.

Once you know that you medically meet the level of care for the program, then you kind of shift the the the questions and do I meet the asset test?

Do I meet the income test?

And that's going to depend very much on whether or not you're a single individual or if you're a married individual.

Lots of different rules for both of those things but ultimately it's just good to know that we start with what is this list of assets and what is the list of income.

Sure.

And then we can kind of and what is your care look like?

What do you want for your care?

And then we can kind of come up with a good plan for that particular family.

>> If there were a situation where somebody met those those requirements in terms of the need the three maybe three different things that are classified as a need and they get approved for Medicaid.

Does Medicaid pay for home health care or do they can I hate to say myth because that's not an appropriate word but you hear people all the time talking about well they'll take my house, they'll take my car.

>> What's that situation?

So if you're living in your home you can qualify for Medicaid.

It's a Medicaid waiver program and if you're living in your home you can stay in your home.

There are things that we worry about estate recovery .

You know what happens after to my home after I pass away.

So that is something to talk about with with your attorney.

But if you're in your home, yes.

You will be able to stay in your home that in-home piece under Medicaid can vary for each family I've seen anywhere from somebody just receiving minimal hours, maybe ten hours a week in their home.

But then I've also seen up to 40 hours a week in their home and so it all kind of just depends on what support you have outside of that Medicaid provided in-home care.

Got it.

The idea kind of is is that if you need more than 40 hours a week of in-home care really you're probably more suitable for a nursing home setting nursing home or some kind of assisted living if you're going to need that much.

>> Yeah, exactly.

OK, and now what we've been talking about is not necessarily a hospice situation but if it is a hostage hospice situation, do you have clients or patients that are on Medicaid?

>> Sometimes we do Medicaid hospice is Medicaid covered benefit but oh it is OK that's if you don't have access to Medicare or private insurance.

So OK, hospice is typically covered for those that are on Medicare or any other insurance but there are times that we're partnering with patients that maybe are using a Medicaid waiver program like what Jessica's mentioning or they may be or they may have never been qualify for Medicare at that point.

So that does cover for hospice as well.

>> OK, all right.

So do you have like a financial officer or somebody within the hospice organizations that can work out those financial details with people?

>> Yep.

We have a team that works on making sure people are qualifying for the benefits tha they have and making sure that they get the full benefit of hospice OK and full benefits.

>> That's kind of what we're talking about here in terms of having the team.

>> How about palliative care?

How does that differ from hospice in terms of the the team that's taking care of you?

>> So palliative is really looking at maybe a physician or nurse practitioner that's overseeing those managing those symptoms, having those goals care conversations.

OK, so the team is a little bit smaller in palliative care because typically when somebody is on palliative care they have a team of whatever their chronic diseases the managing them to.

So if they have cancer they're working with their oncologist, they have a cardiac issue.

They're working with their cardiologist as well.

So they're kind of surrounded a little differently from the team standpoint.

But the palliative physician and nurse practitioners are really who's walking along that journey with them.

>> How do they work together?

I mean do they meet that team or do they email each other their observations from the last visit or how does that work for the hospice team?

They're really meeting every couple of weeks and they're meeting more frequently and that honestly but what they're really focusing on is what's going on with that patient and they're following the medical record and before they go in and talk with any patient, they're seeing what's going on with that patient and looking at the total care that's needed for that patient because they're likely changing fairly rapidly.

Yes.

Yes, that's the thing we're always watching to see, you know, making sure that if somebody is going, you know, having something happen that we're we're on top of that and we're helping them manage to be comfortable.

>> You know, I think it's interesting that the things have changed so much through the years in terms of what's available and what that means.

>> I mean what's provided for you it just seems like, you know, 10, 20, 30 years ago with hospice available than OK. >> Yeah, but often it meant again like a lot of people are, you know, sometimes thinking oh that's the end, that's it.

>> And that maybe there's it's just a matter of one person taking care of you whether it be a doctor or whatever else and then you think well what are they going to do?

They said that they're going to keep me comfortable.

Is that just mean OK, from now till the end they're going to give me pain medication?

Yeah, but that's not the case.

Not the case.

There's I mean there's a lot of other ways that people can be kept comfortable and also I just think having that team is watching over you and making sure that everything you are comfortable and making sure that you have if you needed massage therapy, music therapy, there's other interventions besides pain medication and I think that's the most important benefit of hospice is to recognize that some of some of the discomfort isn't just about physical pain, physical pain.

It's not all about it's not all about morphine.

Yes.

You're shaking your head a lot there, Jessica.

>> So this is an area you're familiar with from clients that you've had?

>> Yes, I think they're always surprised and pleasantly surprised, of course that it does involve some non what I would say nontraditional pain management as Leslie mentioned and I think people are pleasantly surprised to learn that.

>> I think the other piece that they're surprised to learn about is the grief counseling that comes with hospice.

Oh yeah.

Let's talk about that.

>> The grief counseling is this for the patient or for the family all of the above and it-.

>> So generally speaking, if you are on hospice you do have an end of life diagnosis of some nature and so depending on what that is, it could be prolonged.

And so for some people they're anticipating that moment for a very long time and so they need to be counseled even prior to passing same thing with the family and then after somebody passes of course grief counseling is just as important and so the hospice team is there for that as well.

>> I'm curious was is there something for children?

I mean it's not it's generally about adults but there may be children that are involved in the family that's experiencing that loss.

Is there anything for them in terms of in terms of counseling?

>> Yes, there's actually some great resources here in the community for children who are grieving and we really take care of you know, thinking about as some of these passed away we really try to take care of the whole family in that and to support anticipatory grief and supporting them through that and then afterwards you never know how that grief is going to show up.

It doesn't it doesn't just it goes on for you know, for those that are living in and so having that supports really important, isn't there?

>> I'm just trying to recall from our past shows that we've done on this and conversations aren't there some specialized or individualized grief counseling groups like maybe for spouses of the bereaved or children of the bereaved or whatever?

Is that right?

Yeah, there's different groups support groups really we find that peer support is really a great way for people to connect and feel like they're experiencing having a shared experience of loss of a spouse.

So having those groups are really important to be able to connect with because you feel like you're the only one that feels that way or the only one that experienced grief that way .

Jessica, we're getting close to the end of our show.

Unfortunately it always go so fast when you're here.

>> What advice would you give our viewers that we have the best viewers by the way, our hebes crowd out there and what advice would you give them in terms of anything they should be doing legally or how they should approach hospice and palliative care?

>> Well, I say it often plan early as hard as it can be to have some of these conversations with your family about what comfort looks like to you, what medical treatment you want as hard as that can be it really in a crisis it's really vital.

And so to have some of those hard conversations over the years and get yourself kind of organized, whether it just be your personally your own thoughts of this is what I want here where my assets are, you know, here's what I own.

It's really important to kind of have yourself kind of organized in that regard and planning ahead so that when the crisis happens we know who's going to be making decisions for you and it and it doesn't feel so emotional and you've had the opportunity and hopefully you you've taken that opportunity to discuss these things with your your family in advance.

>> So there are no surprises for them and so they know what your needs are or what your requests are.

Well, again, I want to thank you both.

>> Leslie, so nice to have you with us here and of course Jessica, we see you a lot and we're going to see you again real soon I'm sure for the rest of you, thank you so much for watching us tonight on LIFE Ahead and hopefully we'll see you right here next Wednesday night at seven thirty.

Meanwhile, have a great night and stay safe and stay healthy.

>> Good night The Honeywell Center presents Annie, November 2nd.

The inspiring story of an orphan who looks for the good in every situation.

Annie - a musical for the ages.

Ticket Information at HoneywellArts.org.