.

>> Hi there.

I'm glad you're watching us tonight here on PBS .

For Wayne the name of the show is Lies Ahead and it's for a good reason.

What we do here on this topic on this show every week is present you with a big array of topics that hopefully will give you some education and information and help you with decisions in your LIFE Ahead.

That's the name of the show.

And tonight we're going to be talking about a situation and maybe some of you have already faced if not probably at some point in your life or someone make some decisions.have to- We're going to be talking about hospice and palliative care tonight with me is somebody you know because she's on the show a lot.

That's just I get the sense Jessica, welcome back.

>> Thank you.

Always glad to be back.

Always good to have you here.

And I know you have a vested interest in being on a committee.

>> Is it hospice with the committee you're on Stillwater Stillwater.

>> OK, so Jessica brings this topic to us often and Dustin Petersen, Dr. Peterman, nice to have you with us.

>> Thank you.

And you're in a position as an executive director.

>> I work as an associate medical director.

>> OK, so I work directly with patients and families.

Oh, all right.

Good.

I'm glad because we're going to ask you all to ask us questions.

That's why we have this show to do is to provide you with some things that you want to know about.

I'll be asking him questions but you're the real viewer right here.

So if you have something you'd like to know about, just give us a call.

The number is going to be down here on the bottom of the screen throughout the show and we'll ask Dr. Peterson or Jessica Jessica will be handling the questions.

She's an elder law attorney and we'll ask them to address your situation.

>> OK, let's start out by talking about hospice in general and I'm going to go to you first, Jessica.

>> This is your arena here.

What is hospice?

There are a lot of misperceptions or misconceptions.

>> Can you explain what it is now or what it has turned into ?

>> Well, the reason I picked the topic is because November is Hospice Awareness Month and as an attorney I get so many questions about what hospice is, what's covered , when do we call and seek hospice care.

Right.

I think Dr. Petersen can do a better job of explaining what hospice is but I know from my perspective as an elder law attorney this is a number one question I think a lot of people wait a little too long to get some of the assistance that they need.

They're afraid of it.

They don't really understand it.

And so I like to bring as much awareness as I can to what hospice is so they know when to call and who to call.

>> That's right.

We're talking about this tonight because again a lot of people don't really understand the whole picture or it's much different than it was 20, 30 years ago did exist in time.

>> Well, palliative medicine is a specialty has been around for about 30 to 35 years.

But hospice itself started in the in the UK in the late 1960s and then was brought over to the United States in the early 70s.

>> So it's been around for a little while.

OK, OK.

I don't know that I really started hearing about it that much until 15 or 20 years ago and I don't know how to say this.

>> It was kind of a hidden subject then if you had a grandma or a relative or somebody that had to go to hospice, you kind of didn't tell people it was kind of the family secret, if you will.

I hope that that has changed.

Have you seen that a possibility?

>> It's still struggle and I think part of it is just our culture in general as far as being comfortable talking about death and I'm sure Jessica sees this and her practices when people actually decide to come.

I do think that you know, part of it too is is the culture that we talk about fighting fighting illness, fighting cancer, fighting things and a lot of people have decided that ,you know, they think moving towards death or thinking about hospice is a matter of giving up and I think that's very much not the case.

So what we try to focus on is understanding what's important to people, what are our goals that are achievable?

How can we help them have the most good days possible that they have and how can we fight for that quality of life within within the constraints that we're dealing with?

>> I like that phrase the quality of life.

It's not over.

You're still experiencing life right?

So why not make it the best you can?

>> And Dr. Petersen, I want to understand a little bit more about palliative care is you know what it is and is that a part of every hospice situation?

>> Well, palliative medicine is the specialty that physicians practice that do hospice medicine as well.

>> So out of care is kind of a larger umbrella than hospice.

And when I think about it when I explain to folks about what palliative care is, even when I talk to folks in the hospital that are not necessarily looking at hospice is that one is where expert communicator.

So we try and work with the patient and the family to understand their values and their goals.

What's important to them?

What are the things that they're scared about?

Are they have fears on and how can we help them?

And we also make sure a lot of times when folks are have complicated or serious illness, they have many different teams, different physicians helping to take care of them.

And so part of that is to be able to help make sure everybody's on the same page and help make sure that the physicians are hopefully not making a recommendation just based on a disease.

Right.

But making a recommendation on what's the best treatment for that patient based on their values and goals.

>> And so that's what palliative medicine really is all about and it's a team of doctors that come together to serve their take care of each individual case.

That's one place that hospice and palliative medicine are a little bit different as like I said, the physician component in hospice is a palliative medicine physician.

But hospice itself is a great program that has a lot of different resources there.

It's really an interdisciplinary team that's largely led by a nurse case manager who really helps to understand what the needs of that patient and the family are and they work together with a social worker with other nurses that come to visit the patient with home health aides ,with the physician in the hospice agency as well and also chaplains or spiritual care padvisers.

>> How much input does the family have in designing the care of your person?

>> The family can have a lot of input.

I mean we we largely try to see that put around goals about what the patient wants.

Obviously as long as the patient's able to communicate with us, that's who we're primarily going to be looking to ask questions to.

But families very much so apart especially as patients get to a point where they're closer enough, where they may be in a situation where they're incapacitated or can't make those decisions.

>> This is the question that I've had asked before by viewers actually if you go into hospice because you're doing very poorly OK but then you kind of revive and you're getting back to being much better.

>> Can you drop out of hospice ?

>> Yeah, and it's not I wouldn't say that it's frequent that we see that but it's not uncommon among patients do sometimes either go out of area for hospice or decide to to come out of a hospice program.

The main difference as far as with palliative medicine and hospice really is that patty medicine can be focusing on people's comfort .

I usually talk about physical, emotional, spiritual and social health and well-being and suffering and focusing on that but those patients can be patients that are seeking curative treatments when it comes to hospice.

>> We're specifically looking at patients population of patients that have a life ending disease or life limiting illness and they have to be certified by the hospice physician that this illness likely under a natural course to to lead to their death and succeed.

There are oftentimes we have patients that for whatever reasons are feeling greater and do well and sometimes are on hospice much longer than six months.

>> Is it the family doctor or the palliative care doctor who determines how to put this delicately?

>> Your life expectancy when you come in as far as referrals that can be from other physicians, the hospice physician is the one who's actually documenting legally for reimbursement and things about that about that certification and there are rules on the insurance side about how often that has to be done.

I didn't think about that because other than people making their own choice to leave hospice, there are times when we can assess someone's condition and as the physicians say, you're actually doing much better than we expected you think you are you're being discharged from hospice.

>> That's not very common but that does happen to what you said the word insurance that always triggers a little alarm up here do most insurance policies health insurance or some insurance that you have cover palliative care or hospice?

Hospice benefit is pretty common.

It's in a Medicare benefit and most of the major insurers oh is it Medicaid or Medicare?

Medicaid, Medicare, Medicare benefit it does get a little bit different and when it comes to things about paying for the hospice program and care versus if someone needs say 24 hours care for instance, there is an inpatient and hospice level of care that we do see a small percentage of patients that have suffering or pain or other symptoms that cannot be controlled wherever they are be it at home for instance a lot of patients are on hospice at home if they need to then the hospice benefit will pay for those few patients to be in an inpatient level facility.

So that would be the equivalent level of nursing care they would get in the hospital.

>> Sure, but it's focused on their comfort primarily.

OK, I want to ask some legal questions now.

>> So Jessica, you're the star here for a moment.

>> What kind of legal documents would you suggest a client have or the family have if they're going to go see Dr. Peter Center to talk to somebody about hospice care?

They probably have to go with something in hand.

>> Sure.

So first and foremost you definitely need some sort of power of attorney document.

So of course, yes, always so a durable power of attorney and appointment of a health care representative.

>> Those are the two most common the durable power of attorney is going to be things more about financial components.

So a lot of times when we're talking about what type of care do you need, you may need more than just hospice care maybe you need in-home care.

Maybe you need assisted living or nursing home care.

And so the durable power of attorney is going to kind of help with that whole financial piece of how are we providing payment for care across the board?

But then the appointment of a health care representative is the person who's going to make those medical decisions when you cannot make those decisions for yourself.

>> Maybe they don't need that help when you first enter them but correct.

But maybe as they progress in their illness they might move to that level.

>> Yes, because our fear is always as an elder law attorney, our fear is always that you wait a little too long because you're feeling very can make these decisions but we- never know when we can't make those decisions anymore.

And if you don't have these documents in place, unfortunately your family is stuck having to get a guardianship over you and there are temporary guardianship.

It's an emergency situations but there's also permanent guardianship, all of which take time and court involvement which really delay the process of you getting the care that maybe you really wanted.

That was part of your comfort piece of things.

So the more you can plan ahead, the the better you are and eventually be able to avoid those situations.

>> Do you think most people know themselves or decide themselves what they want or what they perceive as the best hospice care for them or is this recommended by physicians or family?

>> I think it's more they know what comfort looks like to them .

They know what they want.

They know that they would like to be in their own bed at night.

They know that they don't want to have to go in and out of the hospital all the time.

They know how they want to move around their home.

They know what food they would like.

They know their kind of schedule.

Are they up all night or are they early mornings so they know what they want for their life and what that looks like and what pain management looks like to them.

And so I think as long as they can kind of vocalize a person can vocalize those things the people in their lives, whether it's their family, their doctors or attorneys, they can kind of help determine then what care to unique services do you need.

>> You know, people are so different and we've talked about this before, Jessica.

>> And I know when we've done shows on picking an assisted living or something like that, it's like you know, you should have some say yourself because some people might want a lot of activities and bingo and dancing and I don't know entertainment somebody else is no, just leave me alone.

Just leave me alone and bring me my lunch, you know, so that may vary may be the same way with hospice I'm guessing Dr. Peterson you can answer that.

Do they want somebody to read to them?

>> Do they want to be left alone, that kind of thing?

What do you find most discomforting?

Well, I think the biggest thing about that again kind of like Jessica mentioned is the patient is the expert and sure what quality of life is to them.

Right.

I mean the physician really should be the expert in the medical treatments.

But all too often I think we ask patients questions that they're not prepared to answer aren't fair questions about what what care do you want?

Do you want the surgery?

Do you want this ventilator and they don't know that's going to affect their quality of life and they don't know what's out there yet if they've never experienced it.

>> But if they can help the physicians by telling them what outcome they're looking for , what they're willing to give up or trade and what they what their hopes are, then it's easier for a physician to say OK, this is a treatment then that's not going to help you achieve your goals or this is a treatment that we should focus on to try and make the best of that.

>> Norma is on our on the line with us here tonight.

Right now I live ahead Norma.

Hi and thank you so much for watching us here.

Norma, what's your question for Dr. Peterson or for Jessica tonight?

Sure.

I kind of have a two part one and the first part I had mentioned so is it customary once I had an elderly mother that was in her 90s and she always had a history of urinary tract infections and it had been recommended to do some kind of homeopathic or some sort of preventative maybe antibiotics and cranberry and et cetera, et cetera.

But once she got on hospice they removed all those and you know and then you know, then things kind of went south from there and in the second question is, is what does a person who's looking for hospice how can a gauge the type of services or the ratings of agencies that provide hospice?

>> Great questions.

Great questions, Norma.

OK, Dr. Peterson, are you start and Jessica you jump in if you have a phone with this the urinary tract thing I think is a little bit difficult.

You know, patient situations can be difficult.

We you know, often it's not uncommon to have some protocols or things in place just like any other specialties of medicine as far as what to o a not uncommon practices to look for certain screening criteria and symptoms that a patient might be having to determine whether they need a urinalysis or urine culture just because back to your present doesn't always mean there's an infection either and being worried about antibiotic resistant infections.

>> But but to say to excuse me is it a typical thing for elderly people or women to have?

You know, it's not uncommon but I will say in general as far as hospice is concerned, a urinary tract infection would be something that would be a comfort issue for a patient and there's no reason at all just because the patients are not supposed to say we're not going to treat a UTI with codecs.

So I think maybe that kind of clarify some of that.

The other piece to that is that there there are medications that are sometimes patients come to hospice on that are not necessarily primarily for their comfort doesn't mean the patient can't be on those but sometimes those will be covered by the patient's insurance aside from their hospice benefit.

>> All right.

You're on Jesica attempt to second question there where the rate Hanauma find information about, you know, ratings of of places or what facilities or programs are available.

>> So there are there arepnatioe agency.

>> Where do you find it so you can find them online under what I think it's just Medicare gov but oh Medicare OK. Yeah Dr. Peterson may be able to correct me if I'm wrong but my my concern about sometimes those things is they're often delayed so often those are based on surveys that hospice agencies provide or give to their patients after somebody passes away and so sometimes that reporting is is a bit delayed so it could be accurate or inaccurate depending on how long it has been since it isn't like nursing home or assisted living facilities where there's like an annual actually in-person check that goes into those the state does come and visit and verify hospices do that usual on an annual basis in Indiana.

OK, very involved process so not too much unlike hospitals being accredited.

>> So is is it like Jessica said then go to Medicaid or dot dotcom and Google what I believe there's information on the other thing I think it's important for folks to know is at least when they're in a hospital setting, if there is a discussion about hospice that families can have a referral to hospice agencies even more than one, there's no commitment.

Oh, OK.

It's not like somebody has to make a choice before they ever talk to anybody, get more information to say I don't want to do life prolonging treatment anymore.

I want to go on hospice for instance.

They can explore those options and have the folks from hospice aencies more than one even come to visit them in the hospital and talk about what they have to offer help answer their questions before they make a choice.

>> Who would have the most input or information the people visiting you in the hospital or your own family physician that probably isn't it depends a little on their patient and that relationship that they have with folks and what the situation is the hospital OK, all right.

>> Here's the thing which sounds very simple but a lot of people don't know in the olden time I say olden back when palliative care and hospice first started becoming more popular around here people would go somewhere.

>> They would go to hospice facility.

>> Is that still what they do?

Jessica also mentioned home health care.

>> What's the correlation?

Some of it depends on what what the patient and the family are asking for what they want.

You know, some of it is dependent on resources and someone's depending on the quality or the amount of care that the patient actually needs.

So like I mentioned a little earlier, inpatient level of care.

Some patients require medicaton so frequently or adjustments of their meds yet there it's not really safe or it would not meet their goals for them to be at home or in a nursing home and they need to be in an inpatient level care for hospice even if it's for a short period of time to get their symptoms under control.

Aside from that, it's not uncommon to see hospice agencies have roughly half of patients receiving hospice care in a home environment and roughly half in a nursing home environmet.

>> Hmm, OK, I got that and this is a really individual situation I'm gatherng is going to be different for every one of you and every situation that you might have to face.

>> We're just kind of trying to cover the bases of what some of the possibilities are.

>> Jessica, when people come to you and want to search out at a hospice place, you make sure that they get a power of attorney and health care representative.

>> What else do you suggest they do before you send them somewhere or how do you decide where you're going to send them?

>> We spend a whole lot of time in these meetings talking about what care looks like, what type of help you need on a daily basis.

Sometimes we find that some families just maybe need a little bit of care.

They need some help with lawn maintenance, they need help with cleaning and they should help with those type of things .

Other times we find that maybe they need actual real assistance with bathing and dressing a handful of times a week or maybe it's even getting more than that.

We have somebody who's a wander risk and we need to take kind of more of a movement to a facility type of situation.

And so we spent a lot of time talking about what that care piece looks like so that we can make sure that we're looking at what benefits may be available maybe they're eligible for VA benefits, maybe Medicaid, maybe its long term care insurance, maybe it's just their Medicare insurance policy as well.

There are lots of things that we're just trying to figure out first what does care look like to you so that we can figure out then how do we pay for benefits or services are available to you because hospice will go wherever you are.

>> So that's one to explore that I saw of it in reading this afternoon hospice will go wherever you are.

>> What does that mean, Dr. Petersen?

Well, I mean it means if there's if there's a safe place for you to be where folks can take care of you some patients on hospice are still quite high functioning and don't necessarily need twenty four seven support hospice itself as a program does not provide 27 seven for seven excuse me support except for those few patients like I said that are in a situation where they require that inpatient level care.

What it does is frequently typically multiple times a week there's folks from the team that are coming to check on the patient and help help the family help provide teaching as well to help them support them.

The other thing I wanted to mention as a piece as far as where care takes place is that for folks that are receiving care from their family or caregivers in their home or in a loved one's home, part of the hospice benefit that's great is respite care and so respite care allows the family or the care respite care allows them to have that patient move to a facility where someone else can take care of them for a few days a month to allow them to have a break if they need to travel out of town, if they need to do something else and being a primary caregiver is very, very draining physically and emotionally and so right.

>> And if it's difficult on the caretaker, they're not going to be able to give as good a care, you know, and they need breaks to do so now.

So my understanding that some of the facilities, if you will, where someone might go for assisted living or whatever and be under hospice, there could be an arrangement where you could the care caretaker could take them there for a week or a week and give themselves a break and then take him back home so they could go in and out.

>> Is that true the respite as far as the hospice benefit for respite is limited to a few days a month and that's arranged within with that that nurse case manager will help set that up once you're in a hospice agency and they can then tell you what the options are, how that works is that usually insurance covered then or no that is part of the hospice benefit.

>> Yeah.

Oh I see.

OK, I got it.

>> OK all right.

Let's go back to legal Jessica in addition to the things that you always recommend that people have and you've worked with this now for several years what are some of the most significant or common kind of cases that come to you first as an estate planner?

>> So typically what happens is it'll be especially because we're right at the holidays.

Sure.

will be as family will be in town visiting and they will notice that something is a little different with mom and dad .

Yeah.

When they come home to visit.

And so a lot of times we're starting very early.

It may not even be somebody who's anywhere close to needing hospice but they're just seeing that mom or dad is needing a little bit more help and so they want to make sure all of our ducks in a row.

And so my advice to you is really get a good list of your assets, get a good understanding of how things are titled.

Is this title jointly between a husband and wife?

Is this really just in one person's name?

Does it have beneficiaries on it really knowing where all of your assets are and how they're titled then helps us really understand.

OK, well what what effect does this power of attorney really going to have on those things and you can't give them direction or make any decisions until you get all of those answers correct.

>> So what I'm hearing then is that while you have the right and you should have the right to make a lot of your own decisions or at least some input you as a family member that may be looking at helping out your loved one need do your work too.

>> You don't want a half hour is already over.

Always go so fast when we have a great topic and great guests as we do tonight.

Jessica, Dr. Petersen, thank you so much.

And for the rest of you will see you right here next Wednesday night at seven thirty with another topic and some good guests with us tonight