>>lori casey:coming up next on being well, we'll have a discussion about hospice care with lisa karolewiczof lincolnland hospice. we'll learn more about what's involved inhospice care, from the types of services provided, to where it takes place and for how long.lisa will also address questions that you may have about hospice care, and if it's theright choice for you or a loved one. that's coming up next on this edition of beingwell. [music plays]production of being well is made possible in part by:sarah bush lincoln health system, supporting healthy lifestyles.eating a heart healthy diet, staying active
managing stress, and regular check-ups areways of reducing your health risks. proper health is important to all at sarahbush lincoln health system. information available at sarahbush.org.additional funding by jazzercise of charleston. thank you for joining us for this editionof being well. i'm your host, lori casey.and today i'm joined by lisa karolewicz from lincolnland hospice.thank you so much for stopping by the show today.>>lisa karolewicz: thank you for having me.>>lori casey: well, our topic of discussion is hospice care,and the first question that probably a lot
of people have is really, what is it?>>lisa: hospice is actually a service that is providedfor people who have a terminal diagnosis and a limited life expectancy.it's a focus on quality of life vs. quantity of live, and really when someone chooses totake a comfort care measure to their health, instead of a curative measure.>>lori casey: mmhmm.so, is hospice care only, is it for people who are dying?>>lisa karolewicz: it's for people who have limited life expectancy.and you know, we all have a limited life expectancy; none of us are going to live forever.but it's for people who have six months or
less life expectancy.and you know, any time your physician has talked to you or a loved one about, you know,that months instead of years, so you know, that is the time to look into hospice, whenthey start having those conversations with you.>>lori casey: so, in your area of work, what do you thinkis the biggest misconception out there about hospice care that people are just not awareof? >>lisa karolewicz:you know, i think, one of the things that we hear is that "i wish we would have knownabout hospice sooner." so, it's, you know, i truly believe it's abouttaking control of your health and, you know,
having those conversations with your physicianand, you know, asking, you know, what do you think for the next year in my life?you know, what am i to expect as my healthcare needs come up?and you know, it's sooner than later, and let's have a plan for that.>>lori casey: and it's a hard thing probably for families,loved ones to even think about. so, how does it even come up in conversation,or how does the thought of hospice care usually bring itself, present itself as an option?>>lisa karolewicz: a lot of times, it's, you know, when patientsare in the physician's office or, you know, more so when they're in the hospital, andthey've had multiple trips to the hospital.
you know, the physician will start talkingto the patient about hospice and, you know, talking about, you know, what is our nextplan of care for you, and really starting to go with that.>>lori casey: so, really it's probably, or should maybebe a part of the overall care plan for somebody. >>lisa karolewicz:absolutely. and you know, like i said, you know, takecontrol of that and, you know, start talking to your physician about that.you know, and don't always wait for the physician to bring that up.if you are seeing a decline in your health and seeing a decline in your loved one's health,you know, start talking about that and having
a plan of care.>>lori casey: so, do you think that choosing hospice caremeans giving up on life? >>lisa karolewicz:absolutely not. i think it's about taking control of yourlife and, you know, you will hear, we hear patients talk about all the time of, you know,i'm tired of being in and out of the hospital, i'm tired of having x-rays done, i'm tiredof going for chemo when there may not be a positive outcome.so, it's about quality of life. you know, we once had a patient tell us that,you know, why do i want to be in and out of the hospital?why wouldn't i rather spend extra time with
my family and enjoy them for the few monthsi have left? >>lori casey:so, where does hospice care actually take place?>>lisa karolewicz: hospice care can take place anywhere thatperson calls their home. we're in the residence home, we're in nursinghome long term care, and we're in assisted livings.so, anywhere that you call home, we're able to be.>>lori casey: mmhmm.now, does it have to be something that your primary care doctor has to suggest or offer?or is it something that anybody can, you know,
if they're in that situation, or they havea loved one in that situation, that they can pursue?>>lisa karolewicz: you can, you can wait for your physician tobring it up. but also, you can go and seek information.you know, call hospice organization, call lincolnland hospice and, you know, ask themquestions, you know. it's all about knowledge is power and havingthat knowledge, so you know when the right time for you is to start hospice.>>lori casey: so, what kind of services does hospice provide?it's not like, probably like make-a-wish, where you get to, you know, go to disney world.but what are some of the things that a hospice
service provides?>>lisa karolewicz: some of the things that fall under the hospicebenefit is you have a registered nurse that comes to your home, and they really take careof the symptom control. other people that would be visiting your homeare certified nurse's aid and social workers, and we have volunteers that can come intoyour home, and that's such a great relief for a spouse or caregiver, our volunteers,that they're able to leave the house, and get out and run errands, and go have theirhair done, but know that there's somebody sitting with their loved one.we have chaplains that are, respect every religion, and are really there, you know,just to hold hands and to give that spirituality
and talk to them.once the patient has passed, we have a 13 month bereavement counselor that will be ableto help with the family members for 13 months after the patient has passed.you know, some of the other things that are included in the hospice benefit is, you know,durable medical equipment. you know, or, i apologize, hospital beds,oxygen, wheelchair, walkers; anything that they may need in their end of life, we'reable to have that for them. and that's all covered under the hospice benefit,and it is billed under the hospice benefit. pain medication, any kind of medication thatis needed for that specific diagnosis is also covered.>>lori casey:
mmhmm.so, it goes way beyond just medical care and someone administering medications or doingwound care, or anything like that. there's a, you know, other aspects, as well.>>lisa karolewicz: absolutely.you know, that's, you know, part of the social worker's responsibility and, you know, theygo in and have a lot of those tough conversations of, you know, let's plan, and let's plan forthe end. you know, let's make funeral arrangements,do we have a healthcare power of attorney in place.and you know, really getting the family and the patient on board with what is going onin their healthcare, and what the expectations
are.>>lori casey: because there are a lot of decisions to bemade, and we've done a couple of programs on dealing with death, and there are so manythings that come up that you don't even think about that need to be taken care of once aperson passes away. i would imagine, through hospice care, youcan have those conversations and get some of those details taken care of while the personis still alive. and you know, it's better to be prepared forthat. otherwise, you're making rushed decisionsand, you know, it's an overwhelming process. it is.i mean, even when you do prepare for it, it's
still overwhelming.but hopefully it's a little less overwhelming. studies have shown that people who have beenon hospice for two or three months, their family copes better afterwards, they're betterprepared for that. you know, everything is still difficult but,you know, it's just an easier process for them.>>lori casey: so, is there a time limit for hospice care?can you only start it if you're given six months to live, can you only start it at threemonths, or two, or two weeks? we actually talk to your physician and havethem, you know, if they say that yes, to the best of their knowledge, i believe that thispatient only has six months or less of life
expectancy, that's, you know, what we reallylook for, and a terminal diagnosis. and once we have that, we can start somebodyon hospice care. now, say they live beyond that six months,that's okay. you know, one of the things, as long as they'reshowing decline. and we have people that graduate from hospicecare, that they come on the hospice, and they all of a sudden get better.>>lori casey: have a rebound, or their cancer goes intoremission, or something like that. >>lisa karolewicz:and that makes us so happy when that happens. i mean, you know, a lot of times their cancerdoesn't necessarily go into remission, but
they just start feeling better, and they dorebound. but you know, once they start to make thatdecline again, we're able to bring them back onto hospice.>>lori casey: as we're talking about cancer, is hospiceonly limited to people with certain types of diseases, say, cancer?or is it open to anybody? >>lisa karolewicz:it's open to anybody with a terminal diagnosis. cancer, we do have a lot of cancer patients.we also have a lot of cardiac patients and people with respiratory issues, such as copdor emphysema, stroke patients, alzheimer's, and lou gehrig's disease.so.
>>lori casey:i would think that alzheimer's has got to be, is a long term illness and can take severalyears to progress, but i would think alzheimer's, any type, the dementia forms are quite common.>>lisa karolewicz: i think it's becoming more common, you know,as they are doing more research with alzheimer's, we're better able to identify when that endstage for alzheimer's patients really is. so, i really think that is becoming much,much more common. >>lori casey:so, when i think of, not knowing a lot about hospice care, i would maybe assume that it'sfor the elderly. is there an age limit?>>lisa karolewicz:
absolutely not.we take care of patients from zero to 100 plus.not every agency is pediatric trained, but we have taken care of pediatric patients.so no, there is no age limit with hospice. >>lori casey:so, are there differences in the care if you're caring for a child?do you do more of, maybe if they're able to, maybe more of those kind of make-a-wish sortof things? or is it any different than if the personis elderly? >>lisa karolewicz:not really. we give everybody the same care.we do have a grant-a-wish foundation that
we offer to all of our patients.and you know, it's just really neat to be able to grant one last thing to a patientor a family. a lot of things, one of my favorite thingsthat we do is life celebrations, where we just, you know, celebrate their life and havea party, and invite, you know, their family and friends in to enjoy just some extra specialtime. we've rented limos and taken them out to eat,and taken them to a play, you know, with their close families.so, we've done all sorts of things. we've had harley rides and done pool parties.and it's just really neat, you know, that we're able to do that for the patient andtheir families.
>>lori casey:so, let's talk about the cost of hospice care. we'll get a little more into the specificarea that lincolnland serves, but in general, so if people are watching this program andthey're not in an area served by lincolnland, in general, who pays for the cost of hospicecare? >>lisa karolewicz:hospice is covered by medicare, medicaid, and private health insurance, as long as youmeet the requirements to be on hospice. and that's all stuff we research and lookat, prior to having anybody admitted to hospice. >>lori casey:okay. so, let's talk about lincolnland.you serve a large area here in east central
illinois.>>lisa karolewicz: we do, we cover 20 counties around the colescounty area. >>lori casey:so, in other areas, is hospice affiliated with a hospital, or are they usually a separateentity from a hospital? >>lisa karolewicz:it can be both. there are, you know, hospices that are ownedby hospitals, and there's national hospices out there.>>lori casey: okay.so, if someone is seeing this, whether on broadcast tv on weiu or watching this online,and maybe they're in another part of the country
or their loved one is in another part of thecountry, what should someone be looking for when they're looking for a hospice program?>>lisa karolewicz: well, they want to call the hospice.you know, we do informational visits with our families, which actually gives the familiesa chance to meet the nurse or the social worker that may be taking care of them.so, that's a great one on one time. to make sure they offer all the services thatthere is. like i said, the registered nurse, which theyall offer that, and the cnas, and you know, the chaplains and the volunteers.volunteers are a huge part of the hospice. and that is something that gives just thecaregivers some time away, and the reassurance
that their loved one will have someone there.even if they're sitting in the other room, they're not left alone.>>lori casey: mmhmm.so, make sure that they have proper credentials, that they're...>>lisa karolewicz: absolutely.>>lori casey: is there a certification process or something?i mean, i know you would want to look for someone that's an rn and a certified nursingassistant, those kind of professionals. but is there anything else we should be lookingfor? >>lisa karolewicz:well, the hospice program itself should be
credentialed.so, you know, those are, like i said, those are good questions to ask.and you know, the best advice i can give is to call your local hospice agency and justask questions and, you know, get that, you know, informational visit.and you know, everybody should do informational visits, and you get to meet them and, youknow, get one on one time with them prior to signing on to hospice.>>lori casey: so, what advice would you have?maybe there's a family out there, and maybe it's dad that is, you know, terminally ill,and maybe the children want the hospice care, but maybe the patient is reluctant to do that.does that ever come up, where maybe the family
wants it, but the patient doesn't?>>lisa karolewicz: yes, and we also have vice versa where, youknow, the patient, we actually see it a little more where the patient is ready; they're readyto select hospice and go towards comfort care, instead of a curative measure, and the childrenaren't ready to, ready for that step in life. so, you know, it's all about that open lineof communication, you know. invite everybody in and sit around the kitchentable. you know, have a nice little dinner and, youknow, start to open up the line of communication and make that plan.you know, a lot of times, our patients are not ready, are ready to be done with the inand out of the hospital and being admitted
to the hospital every couple months, and allthe testing that's involved with that. and they're just ready to be at home and,you know, be comfortable. >>lori casey:so, if someone is at home and they're in hospice care, and maybe they take a turn for the worse,who actually in the hospice care team decides, you know, what we can't, the level of careyou need, we can't do that in the home, and you need to go back to a hospital?>>lisa karolewicz: it would be the registered nurse would bewho the patient and the family would be talking to, but our registered nurses work closelywith their family physician in, you know, really creating that planning of care.they're in contact with them a lot in, you
know, discussing what is going on with, youknow, the patient today and, you know, every time there's a visit, you know, the physiciangets a report on what's going on with that patient.>>lori casey: so, does that happen quite commonly, wheremaybe the patient started hospice care in their home, and then they do have to go backto the hospital? >>lisa karolewicz:it does happen, it doesn't happen a lot. a lot of times when that does happen, it's,you know, we're not able to get some symptoms under control in the home.when they do go into the hospital, they're still considered under the hospice benefitand, you know, the same nurse, and their family
physician can see them.>>lori casey: so, that whole care team can kind of comealong with them. we don't discharge them once they go backinto the hospital. it's an inpatient hospice stay within thehospital, and then we continue to take care of them.>>lori casey: so, at most hospitals is it, if you're readmittedto the hospital, are you just in the regular hospital, or at sarah bush, is there a hospicearea or hospice wing, or is it just part of the general hospital patient rooms?>>lisa karolewicz: it's in the same area.you know, there are a couple rooms that are
dedicated if we do have a patient that ison hospice in the hospital, but it's all part of the same area.and you have access to the nurses on the floor, along with the hospice nurse and your familyphysician. >>lori casey:can you talk about, you've mentioned it a couple of times, about how hospice care reallyeases the burden of the caregiver. i would imagine that that's a difficult positionto be in, providing care and dealing with the emotional and physical strain that a terminallyill loved one can have. can you address how that can really take theburden off the caregiver by having hospice care?>>lisa karolewicz:
it's the additional support that they receive,you know. as they, you know, our nurses come in andsee the family members and see the patient, they're also placing focus on the family andaddressing any questions or concerns that they may have, and really helping them throughthis process. you know, you can receive visits one timea week or seven days a week from a nurse. and you know, along with that nurse, you canreceive that visit from that cna and social worker, as well.we really do not limit how many times we are seeing our patients.and you know, we want them to be comfortable and have that support that they need.a lot of times, it's reassuring that yes,
you are doing the right thing.and you know, what, you know, your husband or wife is going through, it is normal; it'sjust reassuring for the family member. >>lori casey:well, that's what i was going to ask. how do you determine like how many days aweek you come for how long? how is that all figured out?>>lisa karolewicz: you know, for each and every patient, it isdifferent. you know, it depends on when we get them intheir disease process. you know, if we get them early on, and they'restill going out and about, we may only need to be in there once a week, or once everyweek.
and you know, on our off weeks, we just doa follow up phone call to them. so, it really depends on where they are intheir disease process. >>lori casey:so, it may not be you're going to have someone in your home every day for four hours a day.>>lisa karolewicz: absolutely not.typically, if we're in their home, it's for an hour, maybe an hour and a half, two hours.and it could be more. just, like i said, it really depends what'sgoing on within the home, and what kind of symptoms the patient's having.but no, you know, once a week to seven days a week.>>lori casey:
mmhmm.when we started the show, you had said you've had a lot of people say, i wish we would havestarted it sooner. what is the reasoning behind that, do youthink? >>lisa karolewicz:well, i think there's a large misconception of hospice, and that it's only needed in thelast couple of days of life. and you know, if you, you know, are proactivein your health and what is going on in your healthcare needs, and have those conversationswith your physician to have it two to three months prior, you know, it's just that extraadded support to the loved one, to the family members, and to the patient.people really try to, you know, handle things
on their own, and usually, a lot of timeswhen we get called in, you know, we're getting called in at the very last couple days toa week. >>lori casey:so, if you can, and you have the forethought, think about calling someone and getting theprocess started early on, if possible. >>lisa karolewicz:absolutely, you know. and even if you're not ready for hospice atthis time, you know, have that information, that way you're able to make that decisionwhen the right time for you. just because the right time for somebody istwo days ahead of time, doesn't mean that's the right time for you.there is no process that is the same.
each and every patient, you know, what wedo for them is different. it's all the same in the care that they receive,but it varies because everybody's disease process is different, and nobody follows thesame way. >>lori casey:well lisa, we're all out of time. i want to thank you so much for coming bybeing well today and talking to us about hospice care.i hope that, i think it's probably cleared up a few questions that people have had, andif you're ever in that position, that it's something that people would consider.>>lisa karolewicz: absolutely.thank you for having me.
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