Good evening and welcome right here to PBS for Way Now the show is called LIFE Ahead.

Why do we call it LIFE Ahead?

Because each week we try to give you information that might help you with decisions that you have to make in your LIFE Ahead and different choices so that's our intent is to give you education and information and we're going to do that tonight.

Our main topic is about palliative care and hospice.

>> Now I want to remind you that this is your show so if you have questions we invite you to give us a call.

>> We'll have that phone number up on the screen periodically here in the next half hour and just give us a call and we'll have our expert guests give you that education and information.

Who are they?

Well, let me introduce to you one that's no stranger to us here on LIFE Ahead.

This is Jessica Thorson.

If you watch regularly you've met her many times here I think we said it's like maybe your fifth time this year.

>> I think it is, yes.

>> And Jessica is an attorney so she will be heading off questions that have to do with the legal ramifications and as far as hospice and palliative care, we have an expert here first time to the show.

>> Welcome, Mary.

Thank you.

This is Mary Willams acres and she is going to again be able to give you some education and information.

>> OK, let's get started.

Jessica, I want to talk to you first because you chose the topic for tonight.

>> Why are we talking about hospice and palliative care?

So November is Hospice and Palliative Care Awareness Month.

What is it?

And so it's a it has a special place in my heart because I work with older people all the time and this is a question that we get asked a lot about.

There's lots and lots of confusion about what palliative care is and hospice care is and so I thought it would be a great thing to talk about and revisit.

>> All right.

And speaking of the confusion, Mary, I'm going to direct to you the responsibility of defining hospice and palliative care.

What's the difference you can clarify for our our viewers?

>> Well, hospice care is something that is provided.

It's a Medicare benefit that's provided to individuals with a terminal diagnosis and a life expectancy of six months or less.

Palliative care is more so something that would be provided somebody with a life limiting illness, maybe a cancer diagnosis, congestive heart failure or something.

You know that we need to just look at as a whole would it be a disease or a disorder or would it have anything to do with post surgery at all?

>> Well, I mean I think it's it's usually more so what what I deal with and what I've known to deal with is more so disease management and progression.

But yeah, definitely when you have more than one thing occurring sometimes we have people with multiple diagnoses that are happening at the same time.

So palliative care allows for that practitioner or that team to come in and manage all of their care and look at it more holistically.

You talked about they all come in so with palliative care in hospice too, there's a team that oversees your care.

>> Yeah, hospice care especially there is a team we have an interdisciplinary group which consists of our medical director nurse case manager if social work, chaplaincy, music therapy, massage therapy sometimes we even provide physical therapy to our patients.

So there is an entire holistic approach to their care volunteers events in NSW with hospice patients.

>> How do they work together?

I mean do they they give each other information on their area or do they meet together before they work with the patient?

>> That's a really good question.

We actually sit with our medical director or you sit with your physician is managing that patient's care nurse, case manager, a chaplain, social work those are what they call core disciplines.

So those core disciplines will sit with the physician and review that patient's care every 14 days.

>> OK, all right.

Now we need to look at it from a legal point of view, OK?

That means you Jesica so what what about estate planning documents if you think you are headed toward day care or hospice, are there specific documents you should have in place or be taken care of ?

Sure.

So the things that we're most focused on are going to be documents that you need if you are incapacitated.

So we're thinking of attorney documents, OK?

We're thinking of an appointment of a health care representative and a durable power of attorney.

The appointment of a health care representative is somebody who's going to be able to make medical decisions for you when you can no longer participate in those care meetings and in those conversations it is somebody who knows what your wishes are and can really convey that to the team so that through the end of life you your wishes are being fully honored so that person would work with the team that is talking about and make sure that care is what that that patient would want.

>> Yes.

And so you've got to make sure it's somebody that you've shared your desires with and you can't leave it up to chance.

You've got to make sure that you've really kind of expressed what kind of treatment is that you want or at least some sort of big picture plan.

And generally speaking, I really recommend that you if you if you don't designate just one person designate two people to do that, you can do that OK that you can really have people who are being your voice when you can't be well do they have to have medical background?

>> You know, I could ask that question a lot.

>> It certainly doesn't hurt by any means but really it's got to be somebody who knows your wishes and who can be your voice, OK?

And isn't afraid to have those conversations.

Who isn't going to fall apart emotionally because they are going to be dealing with some very emotional decisions.

>> Yes.

What are some the the decision making issues, Mary, that people like Jessica is talking about that are are hard things to talk about?

>> What do you see in terms of typical problems?

>> There are so many different things.

I mean anything if you think about your your day, your day and what you do over the course of a day, I mean all of those choices, all of those decisions can be made while we're getting to a point where we're no longer able to speak or act for ourselves prior to coming on and I looked at a website called Prepare for Your Care Dog.

>> Prepare for your care.

Yes.

OK, And so that has a really nice worksheet that kind of walks through the different types of choices.

>> What's meaningful to you?

What's important to you?

It asks down to the question of how do you make your medical decisions?

You look at materials, do you ask your doctor questions?

>> You are you open to research?

Are you not?

So it breaks down step by step all of those things so that the person who is speaking on your behalf is really prepared and that's the most good that's the most important thing is that the person that you choose has to be able to speak for you and be willing to ask questions and to move past that emotion because that's so difficult to do in those moments.

>> Do they work with you throughout the entire O time period not just one meeting but the whole care time limit?

>> Yeah, that's the goal as a hospice social worker, one thing that I always tell our patients is wouldn't it be nice if you actually knew me and I knew you before I started to help you?

I want to know you and I want to know your family that way we can help make decisions that honor what you want in your life .

So it absolutely from the beginning of their hospice or palliative care journey, if you have that person decide and you know who is at your side, they should be able to walk through those things with you.

It shouldn't just be I went and I met with Jessica and I signed a form and so my sister is going to management because my husband's not able to I mean sometimes there are so many factors to all of this but if I were to do that I would want to make sure my sister knows what my wishes are.

We can't just say here's here's what's happening so that prepare for your Caradog has some of those questions and some of those things and other good resources.

The Indiana postbag and that goes over some end of life questions and a post post PEOC .

>> OK Doug OK there you go.

You've got some homework now check into those websites Jessica.

>> I want to go back to the legal situation now.

The person that's working with Mary is the health care representative and with the hospice or the palliative care team.

>> That's one thing.

That's one thing.

But they also have to work somebody has to deal with the financial issues which will be a part of me taking care of those issues as it is.

>> And so the durable power of attorney is somebody who's going to make all of those business type of decisions for yourself.

So I don't look at it as justice.

Who's going to pay your bills?

Who's going to go talk to the bank and write your checks?

That certainly is a very important role but it's also making those day to day decisions.

>> Who are you going to keep the newspaper coming?

Are you going to keep cable coming if you're going to cancel cable, somebody's got to be able to do that for you.

>> Yeah, all of those day a day decisions need to be handled and made and so it really is the appointment of a health care representative and a durable power of attorney working kind of side by side.

They each have a very important role.

There's lots of people who will choose the same person to do that because they feel the same person for health care representative and power of attorney.

>> Oh really?

Yeah.

There are a lot of people who do that maybe because that's just the size of their family and that's all that they have to to to yeah.

>> To choose from.

But then there are lots of people who just feel like that's the person who's most responsible and I trust that person the most other people like to separate the roles because it is such a big job to take on all of those tasks.

>> Yeah.

So it really just depends on the situation.

It's certainly a long conversation that most elder law attorneys are going to have.

It's not just a brief conversation.

OK, tell me who you want to pick.

I walk through all of those responsibilities to make sure that everybody understands what they're taking on and it is a big, big job and I'm not sure everybody's really aware how extensive that is and in terms of of the number of things you have to do and the time that you have to do them.

>> Yeah.

Yeah OK.

Very involved.

Yeah very involved.

OK, don't forget you can give a call here at (969) 27 twenty .

We're still here for a few more minutes until eight o'clock so we'd love to hear from you.

>> OK Mary let's go back and talk about hospice again.

There are a lot myths I think about hospice maybe because it's the way it used to be or just I don't know just rumors I guess we'll put it that way or gossip.

>> Mary, can you face some of those myths and tell us what the truth is and what's not?

>> Yeah, difficult to know where to even start with that one because there are so many different myths about hospice.

I think one of the main ones is hospice is only for cancer patients right.

We just see cancer patients.

That's not the case.

We didn't see anybody with a diagnosis that would cause for their life expectancy of six months or less.

Hospice is a place don't take me in a hospice.

I don't want to go to hospice.

Hospice is not a place.

Hospice is a Medicare benefit.

It is your last benefit that you will receive from Medicare.

So that is a service that encompasses all of those core disciplines that I talked about earlier.

So your medical the medical director becomes your primary care physician.

You have a nurse case manager who comes out to visit with you specifically and knows your care inside now speaking directly to that medical director social work chaplaincies, spiritual care, music therapy, massage therapy all of those things are entailed in that hospice.

Now you can go to a place there are places that provide inpatient hospice care but that's a very specialized different level of care.

So there are different like levels of hospice care.

>> What do you mean level?

Well, most patients who are on hospice will receive what's called routine hospice care.

>> So that means that they in their home, in their homes or in their home settings so their home setting could be a nursing home.

It could be their child's home .

It could be anywhere that they consider home.

We have OK as a hospice social worker I have served homeless patients who have no home.

I've served patients who are living in a hotel.

I've served patients across all different locations in areas.

We will go anywhere and meet patients where they are to make sure that they're receiving care that they need.

>> Good for you.

Yeah, good for you.

Yeah.

So I think those those mean things the last one I would really touch on is hospice isn't just for the last couple of days of your life we really want to come in and provide that care for as long as possible.

Oh my gosh yes.

So as soon as you get that terminal diagnosis it can be very difficult if you think about religious practices people say oh don't call the priest, we're not calling the priest.

We're not ready for that yet.

It's kind of like that with hospice.

But really the longer we get to know you, the more we know your family.

We're able to manage that illness and walk alongside you and journey alongside you.

It's better so hospice care not just for cancer patients not OK and can be for anybody with a diagnosis that limits their life expectancy to six months or less all right.

>> So you said that Medicare takes care of the hospice expenses now what about if you go to another level like go to one of the places buildings that provide hospice is that additional it is a different level of care so that level of care is something that is for symptom management.

So if you are on hospice service maybe I am taking care of somebody at home my one of my parents and their symptoms get to the point that my nursing team my physician isn't able to manage those symptoms in the home setting and they say you know what, it is required for you to come here so that we can monitor it.

>> We can monitor you 24 hours a day, make some medication adjustments and then return you to your home setting if possible.

Oh OK.

So sometimes it's kind of like an emergency room for hospice patients is that that's a good way to explain it.

>> I understand what you're saying now I have heard that you can go in and out of hospice.

>> That's a possibility but maybe you just happen to get the diagnosis but then you go in a remission and you are feeling great.

>> Yeah, you can drop past hospice sometimes we do see we have hospice graduates.

That's what we call them.

So yeah, sometimes people do graduate from hospice.

They have a diagnosis and again maybe not necessarily that cancer diagnosis but if they are doing well we will see people live beyond that six month time frame.

I've had patients that I've taken care of on hospice that have lived for months years even so we're always looking to make sure that they do still have that terminal diagnosis also that they are declining and continuing to show disease progression.

Yeah, but even then families can say, you know what, thank you so much.

We're doing so well right now that we don't need that which oftentimes with hospice you will see an improvement in your quality of life because your symptoms are managed.

You're not running to the doctor.

You're not doing all of the things that end stage disease management causes you to do.

>> So you see you're not running to the doctor all the time.

>> So does the team come to the patient?

Yes.

Yes.

All of those people yeah.

All of those people will come to the home the medical director, the physician that's managing the care.

>> Sure.

Similar to I always kind of liken it to our primary care physician.

If I need to speak with my doctor, I'm going to go through the phone nurse first and then that phone nurse is going to kind of direct me.

She's going to connect with my physician.

My physician will provide that direction.

>> So with our teams we actually have people in your homes coming to your home providing real time updates to your physician and then that that whole group is getting together once every 14 days to review your entire plan of care.

>> So that's really that's really amazing here.

>> Yeah, pretty amazing, Jessica.

All right now so say you you are going to a hospice building if you will, or that that level of services or maybe there are some situation where you need additional funds.

>> Are there programs that you can apply for that help with the care?

>> So a lot of times when I am working with clients we are oftentimes seeing that their home is maybe an assisted living or a nursing home.

>> OK, and so a lot of times a lot of people if they can't private pay for that, they do have to consider going on to Medicaid benefits in order to provide for that room and board and for the services that are not being provided by hospice.

And there are a lot of people who really do need both.

There are people who are also on assisted living.

As Mary said, your home is wherever it is that you are and so sometimes they do need extra an individual does need extra help and maybe it's a home health care aide.

>> Maybe it's yeah, right.

I mean in addition to their medical needs I mean maybe if they're in their home maybe they do need a home health care somebody to come in and do the cleaning or cooking or that sort of thing and that's where certain Medicaid benefits can certainly help with additional care whether it's a room and board at a nursing home or or maybe cost sharing help at an assisted living or helping pay for home health care services as well.

>> So it just kind of depends on where your home is.

But there are Medicaid programs that can help with those things .

>> I'm curious, Mary, how did you serve the homeless?

How do you do that?

I mean just hospice the entire hospice program is person centered care.

We just and that's a that's a key tenet of social work practice.

So we will meet people where they are.

So we our teams just work with people and thankfully one of those individuals was at rescue ministries so we had the rescue ministries team working in tandem with us.

Our organization works or the hospice program will work hand in hand with other providers and the local community.

So when hear Jessica talk about those Medicaid benefits, the social workers on those teams are really there to link you with services.

And then if we do happen to have one of those graduates, we're more than happy to always take a call and see how we may help.

But the social workers on the interdisciplinary team are really important because they're able to connect people with aging and in-home services, the VA, all of these different programs that can kind of try and circle in and just take care of those patients.

>> How does one start I mean say you have have gotten a diagnosis from your physician and and you know that you're going to need some extra care hospice or palliative care.

>> How do I go about it?

Yeah.

Where do I find that or does my doctor direct me to that your doctor will typically directly direct you to that but it is always OK and within your right to ask what are the ask the doctor ask the doctor ask your medical team if you're at the hospital asking to speak with you if those processes aren't working where you asking to speak with a patient advocate asking to speak with the hospital social worker asking to speak with your care team there people are usually happy to call the social worker in and try and find a solution because that's what we're there for .

So usually if you're like I need to talk to the social worker, I need to talk to somebody to help me what are the next steps?

>> I'm not sure what to do no matter where you're at you should be able to find some of those resources and then they need some financial help or some legal help.

And so, you know, they're directed toward an attorney, preferably an elder law attorney who's familiar with that situation.

>> Well, Jessica, do you want to add to what Mary's talking about?

Well, a lot of times I'm actually been working with a family for a number of years.

>> We've been for more than a year.

They even need hospice.

We've done estate planning for them.

Maybe we've done some asset preservation planning for them and then, you know, the kids will come home for Thanksgiving or they'll come home for Christmas or they'll just be home for a visit and they'll say hi, something's not quite right with mom and dad or maybe something's real bad with mom and dad's really covering for mom and you know, there's just all these things going on and so I'll get the phone call saying I don't know where to go.

I don't know what to do and so that is where a lot of times we'll start directing them to various social workers, various aging in-home services, the VA we start talking about a lot of those things to figure out what is it that we really need?

Do we need light home health care or do we need to talk about hospice to have kind of that holistic approach?

>> Well, that's interesting, Jessica.

You know, probably all of you have had some experience with someone who falls within that category and I'm thinking of some people that I know a couple an older couple and the wife started failing physically and and the onset of dementia and for probably two years her husband covered for her you know, just maybe excusing something if she couldn't think of the word got confused and maybe he'd say she didn't sleep very well last night, she's just confused or she's had a busy day or something.

>> Yes.

And then at what point do they need to seek some real help?

>> It's a good question because every situation is going to be different.

But I think that if you're starting to see some of that, it's really good to get a baseline doctors, family doctors as well as neuropsych doctors can really do kind of a baseline study just to see where we are if we're starting to see the early signs of Alzheimer's or dementia and the earlier that you start getting treatment for those things, hopefully the longer we can plateau that particular individual and keep them from progressing further.

>> OK, Mary, let's talk about that.

>> If somebody is entering that world of dementia Alzheimer's, do you how do you see people like that in hospice?

>> Often we do see people with dementia in hospice.

So end stage dementia is something that we will treat and it's funny to hear Joska talk about people covering for each other because I would guess that even in that situation where your friend was covering for his spouse, I bet there were things that she was doing for him that he was not capable of doing.

There's always something.

Oh really?

Oh my gosh.

He codependent often oftentimes you will see where we get somebody on a hospice service.

They come on and we're taking care of the wife and then as she progresses we start to notice other things occurring with the husband or the spouse.

So oftentimes we all age together.

I always that's something I say often we age together so we along with our spouses are going to progress through some of those illnesses.

>> Man it's all just so I wanted to say sad but it's not because it's promising with programs like you're talking about.

Yeah.

It's much more promising than it would have been a decade ago or two decades ago would you say so legally and and in terms of hospice and palliative care ,what would you say, John?

>> I would and there's still quality of life.

I think that there are a lot of people who will get those diagnoses and forget that there is still quality of life to be had.

It is not a death sentence.

Yes, it may mean that you've got to maybe adjust some things in your life , maybe get a little bit more help than you're used to but you can still enjoy your life and we have made advances in medicine.

>> We have certainly gotten smarter and wiser when it comes to a holistic approach and looking at it from a lot of different angles and that adds to your quality of life which adds to the longevity.

>> Well, I think that volunteers probably play a huge part in that Mary.

Is that right?

I mean do do you see a lot of people wanting to help with hospice or better care?

>> We have in that in the hospice that I work we have volunteers that do so many different things.

We have volunteers that do data entry for us.

We have volunteers that go and sit and pray the rosary with people.

We have volunteers that will do light housekeeping.

There are some pet programs then where they will take care of your pets really it is a holistic program that is looking at your entire life and and trying to give you the best quality of life that you can.

That illness is not going anywhere.

You're going to continue to have it.

But with the support of a hospice organization your last days should be some of your best days.

>> Oh, I like the way you said it should be some of your best and that's promising.

>> It is.

It's definitely promising.

Well, unfortunately we're nearly at the end of our show but I'm going to ask each of you if you'd give the best advice you can.

Jessica, let's start with you to our viewers in terms of how they should handle something like this plan early.

>> I say that often truly if you're 18 or older you need a power of attorney document.

You need a durable power of attorney appointment of a health care representative.

>> You never know where life is going to take you and somebody may need to make decisions for you so early and really have some conversations about who would you would want to make decisions for you if you couldn't.

>> And we're not just talking about an elderly person.

We're talking about you mentioned clients that were a young couple.

>> Yeah.

And that was smart of them to begin to make some of those decisions.

>> Mary, real quick, one sentence.

What can you say?

One sentence one I can't say one sentence.

My thought when I heard Jessica mention the holidays the holidays are a very good time.

Right.

Debbie Downer over here.

But I think this is a good time when you have your family in one space to talk about what do I want what what is important to me?

What do we need what as a family should we be focusing on should this happen so much good.

>> That's really good.

Well, I hope that you've all learned a little bit here in the last half hour with us on Life I had Mary Jessica, thank you so much and the rest of you we'll see you again next Wednesday night at seven thirty right here on TBS.

Fort Wayne , be safe and stay healthy