good evening.

I'm so glad you're watching PBS for Rain Tonight we have a very interesting show a topic that you may need right now but perhaps at some time you will with your family or a friend we're going to be talking about hospice this evening and I have three people here that are very experienced and educated in the area of hospice.

I would encourage you to give us a call here (969) 27 twenty .

You can see that number there on the bottom of the screen and that'll be appearing frequently here in the next half hour.

This is your chance to get some of those questions answered.

I'd like for yo to meet although if you watch City or live here I am said City St.

15 that was a show I did many years ago.

>> But welcome to that as well.

OK, like the is the name of this show and we call that by the way because we have different topics each week and we try to give you information and education in areas that you might need in your LIFE Ahead.

>> So that's why we're doing a hospice here.

Jessica Forssmann, attorney right here.

>> You've met her many times here on Life Life Hand and about a year ago you were here, right?

Dr.

Petersen?

>> That's correct.

This is Dr.

Dustin Petersen and you are a physician with hospice basically correct to see patients in the capacity of hospice and also palliative medicine.

>> OK, and then also working with hospice we have a chandy steal love your name.

>> OK, thank you Judy.

I have to I get right OK that's the difference there in Qandi what is your position with hospice?

>> I'm a hospice care consultant OK a care consultant.

Do you meet with the families then before somebody goes into hospice or what do I do meet with families, patients and their families to talk provide education about hospice care and what we do in the services we provide.

And then I also do community education similar to this.

>> Oh, and this is community education.

All right.

Certainly that's tonight will be Jessica, you have been on the board of hospice for how many years a number of years, right?

>> Almost nine .

Wow.

So very dedicated to the topic .

Why did you choose to spend part of your life or energy with hospice?

>> Honestly, I really truly love hospice medicine because I think it's so important to have that kind of holistic care and of life and honestly hospice nurses just have a special place in my heart.

I mean they just are just amazing individuals that provide really great care at a really difficult time in families lives.

>> You know, we were talking some of in the break room before the show started and I think before you guys got here about the values of hospice and the people that volunteer or hospice care givers are amazing in a rare kind.

>> I mean it takes a special person I think to be on hospice.

Dr.

Petersen, you've probably worked with a lot of different volunteers, caregivers during hospice.

>> What would you say are the criteria is there characteristics that make somebody really good at it?

>> I think the biggest thing is just someone who enjoys being with other folks and spending time with them.

I think that what a lot of patients and families appreciate especially on that side is being with someone who doesn't necessarily bring some particular stigma about end of life for some health problems but somebody just to be there and experience time with them some yeah.

To have some things to look forward to somebody to visit somebody to help them with somebody to be a friend.

>> And then as a physician, what are your duties or how often do you see a person that has been instigated into a hospice that physicians are very much involved in patients care once they come into hospice a lot of our work tends to be a little bit more behind the scenes and working with coordinating with the nurses.

There are weekly or biweekly I'm certain meetings where the entire team has representatives that come together to come together to help come up with a care plan for patients.

I will often see patients that are in an inpatient level of care which is a very small proportion of our population here we have a building here in Fort Wayne .

Do we have one in every county?

It depends on the hospice agency, OK, but every hospice agency is part of their requirement to participate in a hospice program.

It has to have a plan and a facility in place for patients that are having an acute episode where there are symptoms are being difficult to manage at home or wherever they might happen to be where they can basically get the same level of nursing care and help from the physician as they would if they were admitted to a hospital.

>> Are they always right now from what you've told me before you serve is it nine counties, 13 counties?

>> So we cover thirteen counties and oh OK.

So all the way north La Grange to ban all Muslims to Ben Noble DeKalb over to Kosciusko and all the way down by Adams Adams for Grant OK a lot of areas so each one of those counties then we'll have some sort of a separate agency within that county there's agencies available all over hospice itself as that and Chaney can probably talk better to this as generally a Medicare program and different insurances are going to have that benefit as well.

But that's part of the key thing to like what I do as a physician between palliative medicine and hospice is that hospice is palliative medicine is a specialty just like a cardiologist or an neurologist.

But our specialty really I like to say our toolbox we use medications and things to help patients but our toolbox really is time and communication.

Yeah.

And we are really there to sit and understand what's important to patients and how can we help them have the best time that they can whether it's in during whatever medical treatment they're having or close to the end of their life hospice itself really works together with palliative medicine as a program to bring resources to the patient, to their loved ones to help care for them.

>> What do you do for the family's genealogy?

We answer that when you're you know, as a consultant and all of the responsibilities you have you've met with a lot of clients and a lot of the family.

>> So what is your job to the families, your responsibility?

>> Sure and I love that question and it goes right along with what Dr.

Petersen was saying.

So when we talk about hospice care, what I really want your viewers and what I really want people to know about hospice care it is it's a specialized team so not just the physician but you have a nurse team is a key word.

>> A team is a specialized team and they come in and they provide personalized care.

So that's really what we're talking about.

I want people to understand that hospice is more it's a very specialized approach to care.

So it's for someone who isn't one isn't focused on curing the illness.

Right.

But caring for the person.

Yeah.

And so it's not giving up hope.

It's redefining hope having those goals of conversations.

Yeah.

What do you want this journey to look like?

How can hospice come alongside you and support you through that journey so you would talk to the families about that as well.

Absolutely.

>> What are their expectations?

What can you do for them?

Absolutely.

And with that team is a nurse and aid social worker, non-denominational spiritual care counselors.

We have hospice trained volunteers.

We have music therapy, massage therapy.

There are a lot of disciplines on that team, that specialized care team that we talked about that come alongside.

So it's not just care and support for the patient but also for the family.

So hospice is a very holistic approach to care.

Right?

We're not just talking about medications for the physical, not just talking about pain management.

That's right.

It's not just about the physical symptoms emotional, spiritual, all of those different things that come with an illness again for the patient and the caregivers and the family.

We want to continue with you on this as far as giving care to those patients and their needs, does every patient or client that you have have an opportunity to have a complete team meet with them or what?

>> How does that work?

Every patient every patient on hospice care has access to all of those team members if they choose so they can choose they can choose to have a social worker, they can choose to have spiritual care.

But you typically will always see your nurse in your aid.

They're the core care team that are going to come in and manage your medication man help with daily activities of daily living, bathing and things like that.

>> Dr.

Peterson, as far as medications or whatever are these things that you prescribe for the patient or their family physician?

>> How does that all work?

>> And I know that sounds like a similar question but I don't know the answer.

It's important at some patients come with a very strong relationship with their physician.

Yeah, And with most hospice agencies they're going to respect that.

They certainly don't need to and most most transition over to the hospice medical director.

There's always a physician that's going to be on call 24/7.

So no matter what the problem might come up, you have the family.

There's always someone they can get in touch with and those nurses have a physician available if they need to change orders, if they need to call medications whatever they need to do to make sure that that patient in their family is supported.

>> Do you need to travel to all those counties for patients or how does your job work there are members of the team that are going to travel most of the time A physicians are not going out.

I see patients homes or nursing facilities but they are always involved in all of those patients care in making the decisions.

>> Do you meet with the family before somebody is enrolled or signing up for hospice care on the clinical side there there are going to be folks both on Cheney side and as well as on on site that would meet with a family.

Part of that is she can speak to you as far as what resources are available and how things work logistically on my side part of it is to make sure that we understand first of all does a patient qualify?

>> Yeah.

So they have to have a medical diagnosis that works for hospice, make sure we restate all that very clearly.

>> All right.

The question or the comments that Dr.

Petersen is going to talk about her qualifications to be a hospice patient, you know, OK, so for if I'm seeing a patient in the hospital for instance, and patients can come to hospice without being in the hospital but if I'm seeing a patient in the hospital, I'm often seeing them as a palliative medicine consult.

OK, they may hospice may or may not be appropriate for them if they have a diagnosis where it's normal course of playing out with that with that disease process is that we expect them to live no more than six months then they would qualify for hospice as a benefit.

>> Is after magic number six months correct.

>> And that's something that's going to be reassessed on a daily basis.

There's rules that's part of that biweekly meeting is to talk about are all their needs being met and on rare occasion patients prognosis improves and patients can be discharged from hospice.

>> My question I think that we talked about that when we talked about this last year that if somebody improves during their hospice time or staying or whatever, then they can say see a goodbye and leave and come back later if they need you know, OK, does that happen very often?

>> It's not very common but it does happen on occasion.

OK, so it's not like you're committed.

>> Totally correct.

And patients and families also have a choose to a choice of their own to revoke.

Sure.

If they either are not happy for some reason with the agency I mean I'm sure every agency that I would be aware of would encourage them to talk about their concerns to try and address them.

But folks do sometimes change agencies or to decide the hospice for whatever reason is not right for them.

>> OK, again, not very common.

I think most people are very still very supported by do something I can tell.

>> Yes I just because I I think we're on such a good part of the topic right because I think that six months or less is scary and I think that that's the stigma that we really that challenges us when we're talking about hospice care.

It's part of the reason that people are afraid to talk about hospice care.

And I just want again people to know that that six months or less that's the verbiage that we have to use.

Right.

But no one sitting here and no one that I'm aware of knows.

But when you're going to pass away no one knows if that's truly in six months or less.

That's just that's just saying if your illness takes its normal progression you could pass in six months or less.

But Dr.

Peterson's point is if their doctor makes that it's the physician decision that makes that decision correct your decision or their family for hospice.

>> Well, a family physician may refer someone or suggest into hospice based on that but the hospice physicians, the one that's going to certify their illness to participate there are people out here watching it maybe with their family or friends, whatever that somebody is very, very ill and they think hospice will be appropriate but their family doctor has told them that or they don't have one.

>> I mean can they contact hospice directly?

Yeah, Yeah, yes they sure.

OK, all right, good.

And if they do, we have our legal expert here.

>> Jessica, what kind of legal documents do you have or should have in place if you're going to consider hospice?

The most important one is some sort of advanced directive and appointment of a health care representative.

This is somebody to be your voice in this journey when you cannot express your wishes anymore.

>> And so the advanced directive piece of it is where you really do have the ability to spell out what maybe some of that care plan looks like very detailed or very just kind of broad desires that you want what comfort looks like to you.

>> And so that not only helps the team know what you want but it also reassures your family that they are making the right decisions they're advocating appropriately for you.

>> Right.

Personalized care I guess.

Yes.

I mean the family could talk to Sandy or Dr.

Peterson and say, you know, my mom loves music.

>> That would be a good thing for her.

Don't read to her.

She didn't like that you or whatever but they can maybe give you some input as to what might be appropriate.

>> OK, legal documents how about power of attorney all those things that we always talk about.

Yes, So a durable power of attorney is going to be something that is going to help your family make financial or business decisions.

>> So oftentimes when you are on hospice you may be at home, you may not be at home and so figuring out how you're going to provide for the other care that you're receiving, whether that's some sort of rent room and board things of that nature, the family needs to be prepared on how to handle that and so a durable power of attorney is going to allow them to do those decisions and make those decisions for you then of course either some sort of last will and testament or maybe a trust depending on the circumstances to handle your affairs for when you are gone who is going to make those decisions or at least handle those type of things?

>> Where are we going to sell these things right away or are we going to donate you know those things?

Yeah, And of course the more you communicate with your family about what you want to happen with your possessions the better but some sort of will or trust in place so that people know where you want your possessions to go when you pass.

>> That's a tough one.

I never talk about that.

Just a moment here.

I think older generations are much more private than people are right now and they even like to share often.

>> Maybe I'm just assuming this but from what I've you know, people I've met and things I've heard they don't really like to even share their financial situation with their own children or they are just not comfortable talking about what are you going to do with my things or here's the nursing home I want to go to or they just don't talk about it.

What's a good way to get them to open up and share that information just so you really start a conversation?

>> Really just tell me about your family and the dynamics of your family and generally speaking, if I can get a family talking about those type of things, we can maybe start talking about some big picture things of what is it that you want?

What are you comfortable with having somebody come into your home or going to an assisted living because believe it or not, some people don't want somebody in their home.

They would feel more comfortable going to an assisted living.

So sometimes just starting a general conversation about the Dinham of your family and who who helps with this and who helps with that even if it's talking about Thanksgiving, those things kind of get the ball rolling and then we really start trying to narrow down from there of what does care look like to you?

What type of medical treatment is appropriate?

I mean sometimes we try to get very specific sometimes sometimes you just have to refer them to you all because you have better words than even I do.

I'm usually dealing a lot with the dynamics making sure that the family is going to be working together to support and advocate for this person.

>> All right.

I should just endorsed you, Dr.

Peterson.

>> I I think that's very similar advice to what I would give the the the peace that I usually say when I do.

It's difficult to think about do I want CPR for instance and folks don't want to talk to you know or a lot of times a patient may want to talk about those things but their family member doesn't want to hear it.

Yeah.

And so the advice I give usually is what is what what brings you joy?

What is quality of life for you?

What are the things that you look forward to when you get up during the day because those are the things when they really understand that about you when they hear that about you, when they're sitting down in an unfortunate circumstance and you can't speak for yourself and they're talking with a team of physicians or a medical team those are the things that they can say well will they be able to do these things again or what types of treatments are we looking at to have a chance to be able to recover to that point?

Yeah, that really helps them I think to make the best decisions for that loved one is is thinking about the outcomes.

Are those outcomes likely are those outcomes acceptable to someone rather than the medical treatments that nobody else really is an expert in?

>> And as conditions change those treatments, the outcomes are that's why they have you you know Chandy what about your experiences with client?

What are some funny question here?

But I am curious what are some of the most unusual things that patients request or the family requests for them or what are the most common things?

>> Sure.

So well if you want to I mean unusual unusual for hospice is probably every single day.

Oh my yes.

I would think so yeah because every family is different.

Every patient is different but it goes right back to that personalized care because you're having everyone come in from if it's me meeting with them for the first time or someone on our team meeting with them for the first time just to provide information to talk about hospice and provide information and it's just what Jessica said you do more listening than talking.

Tell me about yourself.

Tell me about your family.

That's when those things will come out and then you can provide the best plan of care specifically for that patient and family including the quirky things or not.

>> Yeah, yeah.

What about volunteers that help with hospice and go and be with the patient or the client?

>> What do you require or if you're interviewing people for want to come and help what would you look for .

>> What characteristics so our volunteers they actually go through the same training that our dulais do they do and we're very fortunate we have a robust volunteer group at where we're at with our house agency.

So we're very fortunate about that hospice volunteers it's a requirement as part of that program so you will train them another way, correct?

Every agency has to have volunteers and they get trained they're trained through the same program typically as the employees would be and they provide so much additional support to patients and families they can go in because they don't provide direct patient care.

They can go in and really focus on those things that bring those that joy right that that they maybe can't do for themselves anymore.

But the volunteer can help them do whether it's reading maybe sewing all types of things that volunteers can help do and really, really focus on quality of life.

>> Do you wonder most people want somebody to be with them much of the time or I do think that a lot of our patients I mean again that's I would say that's different for every case but most patients and families really enjoy once you get to know your team because the hospice team should be generally the same people you should be seeing the same people and you just get to know them.

They often become like family.

And so yeah, I think that most of the time people really enjoy having their care.

>> Come visit them and see them.

Jessica, aside from the legal questions I ask you were you've had so much experience here with all these years with hospice, anything to add with what Chandy was seeing in terms of what it takes to be a caregiver?

It's of course it's patients but at the same time it's just listening.

It's really, truly listening to what it is that that individual wants so that you can be their voice and advocate for it.

>> And I think everybody's a little bit different about whether they want pets there or if they want music therapy or things of that nature.

But they really do want somebody that they can trust to really, truly be their voice.

>> And so I always say plan early have these conversations even if it's very broad conversations try to plan early as much as possible because then you know that this person is really going to speak for you and get the things that are going to bring you joy that are still going to give you quality of life and be with you through the end.

>> Well, you know, it may be harder for the family sometimes to be with you, you know, there toward the last months or weeks because of the emotions involved and maybe an outside person that comes in and as a caregiver might be able to supply that more easily I guess or with less emotion.

>> We're down to just about a minute left here, Jessica.

>> How would people contact hospice if they want to volunteer or get involved?

>> So generally I would recommend you find a hospice agency that you're comfortable with and then contact them.

They most of them will have a direct line to kind of sign up to volunteer for them and walk you through the process of being trained and going through that process.

OK, and I'll say I'll add to that I'm sure that it's really important that everyone knows that you have a choice so there's always a choice and I encourage people we encourage people all the time to interview hospice agencies just to make sure that you're getting that right fit for you and your family.

>> What do you mean they have a choice?

Do you mean in which agency or what they do in which agency you choose?

You always have a choice.

Patients have the right to choose who they're going to receive their care from, whether that's the physician, a hospice agency, whatever you're talking about, patients always have the right to choose.

>> You know, one of the reasons or maybe their main reason we're talking about this tonight is that November is National Hospice Month.

>> So you may be hearing about it from a lot of different sources here and in the next couple of weeks.

Meanwhile, glad you were with us tonight here as we talk about this topic here on LIFE Ahead and you know, every Wednesday at seven thirty right here on this set we have another topic and other guests that will help you with your decisions and your LIFE Ahead.

Meanwhile, you can watch this show again now throughout the weekend I think it was four more times or you can check on to YouTube and that's where you can also watch the show or other LIFE Ahead episodes.

Thank you all.

Qandi, Dr.

Peterson and Jessica, so glad you're here with us tonight.

Happy to be here.

Good night