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September 15, 2024 23 mins

09/15/24

The Healthy Matters Podcast

S03_E22 - Caring Beyond Cure - Exploring Hospice Care

A birth is something that is often prepared for and certainly talked about without reservation, but conversations about death and dying can be difficult and something many of us would like to avoid whenever possible.  Although that's understandable, these conversations around end-of-life are likely among the most important ones we can have with those we love and our healthcare providers.

Hospice might be one of the most misconceived subjects in modern healthcare, and is, in fact, something that can be a liberating and even joyful experience for the individual and their loved ones.  It not only involves the doctors and nurses who give the necessary medical treatments, but also social workers, spiritual caregivers, and complimentary therapists from various specialties including massage and music.  On the next episode of our show, we'll be joined by Dr. Mariam Anwar, MBBS, who will help us get a better understanding of hospice, what it entails, and the positive role it can play in end-of-life experiences for patients and their loved ones.  Death and dying is a weighty subject that all of us will need to address at some point in our lives, and we hope this episode sheds light on helpful ways this can be approached with grace, dignity, and compassion.  We hope you'll join us.

For further learning:
National Hospice and Palliative Care Organization
Ecumen Hospice
Mayo Clinic - Hospice Overview

Got a question for the doc or a comment on the show?
Email - healthymatters@hcmed.org
Call - 612-873-TALK (8255)

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Find out more at www.healthymatters.org


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Episode Transcript

Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Welcome to the Healthy Matters podcast with
Dr. David Hilden , primary carephysician and acute care
hospitalist at HennepinHealthcare in downtown
Minneapolis, where we cover thelatest in health, healthcare
and what matters to you. Andnow here's our host, Dr. David
Hilden.

Speaker 2 (00:19):
Hey everybody, and welcome to episode 22 of the
podcast. I am your host, DavidHilden . And today we are gonna
be talking about a reallyimportant topic that being
hospice and what to expect atend of life. To help me out, I
have a physician colleague ofmine, Dr. Miriam Anmar . She is
the director of the Division ofGeriatric Medicine at Hennepin

(00:39):
Healthcare here in downtownMinneapolis, and she's a
hospice physician with Acumen,which is a leading hospice
organization that she is a partof. So thank you for being
here.

Speaker 3 (00:49):
Glad to be here.
Thank you for inviting me.

Speaker 2 (00:51):
Okay. So Dr . Anmar , tell us, first of all, if you
would, what is hospice care?
Just the basics of when you'reexplaining somebody the first
time. What is hospice?

Speaker 3 (00:59):
Yeah, I'd like to kind of talk about hospice and
how it differs from kind ofpalliative care. And if you
think about like the trajectoryof a chronic life-threatening
illness, palliative care canreally be involved at any point
in that trajectory. Um, ithelps to improve that overall
quality of life and, you know,navigate the difficult

(01:20):
circumstances. Hospice on theother hand, that comes into
play when there's a morelimited time of life expectancy
around six months, and thefocus shifts from a curative
intent to managing more of thesymptoms and the circumstances
at the end of life. So youthink about hospice when cure

(01:41):
is no longer possible, or theburdens of treatment outweigh
the benefits. So

Speaker 2 (01:46):
You are, as I said earlier, the director of
geriatric medicine at Hennepin,and I know what that is. But
just while we're doingdefinitions, what does a
geriatrician do?

Speaker 3 (01:55):
We care for older adults. Our specialty is caring
for older adults and helpingpeople navigate aging. So, you
know, we receive patients from65 and older. Our clinic
actually does 62 and older. Andfrom the robust elderly to the
frail elderly, we treat andmanage that whole spectrum and

(02:17):
either promote healthy aging orhelp with chronic disease
management and illness and makethem as functional and try to
improve the quality of life asmuch as possible.

Speaker 2 (02:26):
Yeah, thank you for that distinction, because I'm,
I'm so well aware of what yourdivision does. It's in my
Department of Medicine atHennepin, and I'm so impressed
with all of the physicians, theresearchers, the advanced
practice providers in thegeriatrics medicine division.
So I just wanted to get thatout there. Now, back to
hospice. So it's been around along time, people maybe have
just a smattering of knowledgeabout what it is. Could you

(02:49):
share with us what are some ofthe key principles of hospice
care when somebody isconsidering getting these kinds
of services? So

Speaker 3 (02:56):
It's really a holistic support. We support
the whole person, theirphysical, emotional, and
spiritual needs. The principlesinclude really focusing on pain
and symptom management. Youknow, we wanna maintain that
quality of life, but also thatdignity. I think that's also
kind of really important, likea team based approach with like

(03:18):
kind of good communication andproviding that really holistic
support. Providing bereavementsupport is also a key
principle.

Speaker 2 (03:25):
Well , now what you just said there makes 100%
sense to me in that wouldn'tevery single person want that
at the end of their life? You

Speaker 3 (03:33):
Know, we birth is a happy experience, we all plan
for, right? But death issomething we don't plan for. We
don't talk about enough. Evenearly end of life decisions to
talk to a physician are verydifficult for a lot of people.
And studies have shown thatpeople who have enrolled in
hospice, they are more likelyto have their end of life

(03:56):
wishes answered.

Speaker 2 (03:58):
That's exactly what I would think we would want. So
that was a good segue into mynext question for you is what
are some common misconceptionsabout what hospice care is? One
of them might be, at least thatI hear a lot, is, well , you're
throwing in the towel, you'regiving up on me.

Speaker 3 (04:12):
Yeah. And hospice is number one. It's not for the
dying. That's the commonmisconception that I'm, you
know, like when you're in the ,the active faith of dying, it's
only kind of when you'reenrolled in hospice, but
hospice earlier on is actuallymore benefit for that , um,
emotional and that support andthat that hope actually shifts.
You know, when you are nothoping for cure and when cure

(04:36):
isn't always possible, but thathope is for dignity, for
comfort, for peace, for familysupport to maybe be at your own
house, to may maybe , um, besurrounded by family instead of
having recurrenthospitalizations. You know,
another misconception is Ican't keep my own physician ,
um, which is not true. You cankeep your own physician. We
wanna maintain those lifelongrelationships that you may have

(04:58):
had , um, with family.

Speaker 2 (05:00):
So it's not a place you go. Is that true? Hospice

Speaker 3 (05:03):
Will come to you,

Speaker 2 (05:04):
They come to you, they come to you because you
said in your own home. I thinksome people have said, well, I
don't wanna go somewhere tosome facility. Now there are
some of those, there areresidential hospice where you
can go and live, but most ofthe time that's not it, right?

Speaker 3 (05:16):
No. They come to wherever you are. So if you're
in your home and you're in anursing home assisted living
facility, the hospital willcome to you, the nurses will
come to you, the team will cometo you and provide comfort for
you know, where you are andsupport that.

Speaker 2 (05:29):
Yeah, I hear that all the time. And , and , and
then you , you tell someonethat , no, you can live in your
own bedroom or, or , or yourown assisted living your own
apartment. And the people,their eyes light up. They Oh ,
really? That they, they reallylike to hear that. Any other
misconceptions that we haven'tcovered ? That it's not just
for the last few days of dying.
It's for emotional andspiritual part . You , your
physicians can come to you, youcan keep your physician. Could

(05:53):
you just delve a little bitmore into this concept of
hospice isn't abandoningsomeone who is in the last
several months of their life.
We're not giving up. We arejust shifting the focus of what
we're doing. Could you say alittle bit more about your
experience with that? What doesthat mean?

Speaker 3 (06:09):
I think a lot of family and patients notice a
natural decline. And there'skind of an intuition that, you
know, the body is shuttingdown, they're eating and
drinking. It's less, theappetite decreases and there's,
you know, more functionaldecline. And so sometimes when

(06:31):
we try to push someone to focuson that curative intent, when
their , their , their hope isjust to be comfortable. You're
actually not doing a service ora benefit to our family members
or loved ones. And so I thinkreally having that good
communication conversation withyour care team and your , um,

(06:52):
patients and involvingpalliative care to really think
about what is important to meor to my family member at this
time and what is the kind ofthe reality of the situation.
There's more focus on , um, youas a person and your comfort
than just maybe ending up inthe hospital, but you might not

(07:14):
want to have your last sixmonths in the hospital half the
time. Yeah.

Speaker 2 (07:17):
Yeah. I'm gonna shift a little bit about to the
eligibility and sort of thetiming of hospice, because a
lot of people think, well ,it's the last three days, it's
time to get hospice. That's notit. Could you just walk us
through what are the criteriafor hospice care eligibility?

Speaker 3 (07:32):
So Medicare is very specific disease criteria,
which are very helpful for aspecific, like, you know,
cancer or dementia or end stageheart failure, end stage lung
disease. But the overallprinciple is that infusion that
you have like six months orless to live, decrease in the
palliative performance scale,which indicates like your
functional decline, increaseddependency on your activities

(07:55):
of daily living, like youreating, you know, you lose your
, uh, ability to bathe or totoilet independently to shower
independently. Weight loss,which is not really due to a
reversible cause or it can belike a declining serum albumin,

Speaker 2 (08:09):
A blood test. We get a protein. Yeah, yeah.

Speaker 3 (08:12):
Um, difficulty swallowing, dysphagia, you
know, aspiration, pneumonia,progressive like ulcers, skin
ulcers can indicate lack ofnutrition and indicate end of
life especially, they're nothealing. So

Speaker 2 (08:24):
If a family member sees these things in their
loved one, that's maybe somesigns that it's saying and ,
but you also have to have adiagnosis, right? And then
don't you have to get a ,because I've done these, you
have to get a physician orsomebody to certify that you
perhaps have less than sixmonths to live. Although
nobody's can predict thatperfectly. But that has to be,
that's the general rule, right?

Speaker 3 (08:44):
Yeah. So the patient can call the hospice team
directly or they can bereferred to their hospice, and
then the certifying hospicephysician will determine their
eligibility

Speaker 2 (08:54):
Criteria. So I know it's really hard conversation
for many people to have withtheir family members about end
of life things, but when do yourecommend that people, not in
hospice, but just people ingeneral , um, should start
talking about their end of lifewishes with their families?
I've

Speaker 3 (09:11):
Had patients with, like, I have a patient with
Lewy body dementia, or apatient with a critical aortic
stenosis. And we've hadconversations when they were
healthy. So when they werealert cognitively , um, intact
, um, to some degree able tomake their own decisions and
really having the conversationearly on and at every decline.

(09:34):
Like if there's ahospitalization, there's an
event, it's another good timeto renew the conversation or
where there's new informationabout your disease illness. So
when my patient with criticalAOR stenosis, she knew she did
not want surgery. She knew shedidn't want to be intubated if,
if something happens

Speaker 2 (09:51):
Too down your throat,

Speaker 3 (09:51):
Right? And so when our dementia progressed and it
became more severe , um, it waseasier to have those
conversations with thosefamilies on how we, you know,
how we should proceed.

Speaker 2 (10:00):
And it's not just in cancer patients, is it? Hospice
isn't just, people also thinkthat it's, well, I don't have
cancer, you know, but youmentioned some other diseases,
dementia, advanced heartfailure, so it isn't just
cancer.

Speaker 3 (10:11):
So as a geriatrician, I , I'm
mentioning these more 'cause I,I see , uh, more of my patients
with , um, chronic lung diseaseor pulmonary disease or be a
lot of dementia patients too,when your decisions kind of
matter based on the cognitiveand the functional, right?

Speaker 2 (10:27):
So you have to have those conversations earlier.
This is a littleself-promotional plug here, but
about 15 years ago, I wasinterviewed by the New York
Times about this very topic andhow the New York Times got my
name here in the, in the frozentundra of Minneapolis, I'm not
quite sure, but it was anarticle about when do you have
end of life conversations? Andit was a bunch of cancer

(10:49):
doctors who were very reticentto have conversations. And so
people were dying withouthaving had these conversations
and they wanted some doctor totake the opposing view . So I
was that guy. I don't know why.
And I, I said we should havethat conversation a lot
earlier. Now that was about 15years ago. I do feel a little
vindicated because I hear thata lot from, from geriatricians

(11:10):
palliative care folks , uh,people who are in hospice, that
it's good to tell your familymembers well in advance,
especially if you havesomething like dementia. Well,
in anything, but for dementia,it's for sure because you can't
make those decisions later.

Speaker 3 (11:23):
Yeah. And decisions about feeding tube, you know ?
Mm-Hmm . familyfeels so conflicted sometimes.
Like , especially I , uh, Iwork at Good Sam , there's the
high population of Huntington'spatients. And, and often those
families make their decision totalk about, no, I don't want a
feeding tube at the end of mylife. They're very certain
about that. It helps familiesso much when they have that
stage five , um, end stage andthey're really declining in

(11:46):
their appetite, increaseddysphasia. So , um, I think
it's a , um, service to have toyour families to , and to
yourself when you wannaminimize that suffering. Yeah.
At the end of life.

Speaker 2 (11:57):
And that's what most people want. It's just what is
suffering. Um, and it'sdifferent, but for different
people. I'm gonna shift alittle bit about who's on the
hospice care team. When youenroll in hospice, what kind of
services are available andwho's on that care team?

Speaker 3 (12:11):
First having a nurse, and that's what patients
love the most frequent nursevisits. And also , um, having
that availability to call anurse twenty four seven.

Speaker 2 (12:21):
Shocking. It's never the doctor folks. And you know,
I know this, when patientsalways say who , whenever we
talk about care team, thenumber one person, and I will
second, this is always thenurses. They're the heroes of
medicine, to be honest. Okay.
They , you , so you have anurse available to you.

Speaker 3 (12:36):
Yeah. And you know, I , when I see my patients on
hospice, and it's , it's , it'sreally encouraging and
heartwarming when they havelike their chaplain visits and
their music visits and they'rereally singing along, you see a
completely different aspect ofyour patient when they're
singing with a mu with

Speaker 2 (12:52):
A , so a music person, a thera , a music
therapist.

Speaker 3 (12:54):
A music therapist, yeah. Um, those are kind of
complimentary therapies andmassage therapy for their back
pain. I think my patients gonnashave, you know, they're like
volunteers and things.

Speaker 2 (13:04):
You don't think about

Speaker 3 (13:05):
Things you don't think about know

Speaker 2 (13:06):
That music and maybe getting shaved. Yeah . You
know, you know, it makes youfeel a little bit of dignity
and then

Speaker 3 (13:11):
Social work. And it's really hard as you
decline, and especially ifyou're at home and you need
increased help and services. Sothat social work will really
help guide and help withplacement or increased
assistance at the end of life.
And then I would add that , um,bereavement care is there for a
year after the patient isdeceased for the family. And so

(13:32):
I think it's really a holisticpatient and family care .

Speaker 2 (13:34):
Mm . A year afterwards you get assistance
with, with the grievingprocess. That's the kind of
team, if you could do yourdream team of, of your
healthcare when you are in thelast , uh, phases of your life
here on earth. What a , that'sthe dream team you get. And you
get a doctor in there too.
? Yeah. Okay. We'retalking with Dr. Miriam Anwar .
She is the director of thegeriatrics division at Hennepin

(13:57):
Healthcare . And we're talkingabout hospice care. We're gonna
continue our conversation rightafter a short break, so stick
with us. We'll be right back

Speaker 4 (14:05):
When Hennepin Healthcare says, we are here
for life. They mean here foryou, your life, and all that it
brings. Hennepin Healthcare hasa hospital, HCMC and a network
of clinics both downtown andacross the West metro. They
provide all the primary careand specialty care you would
expect to find, but did youknow they also have services
like acupuncture andchiropractic care available at

(14:28):
many of their primary careclinics and at their
integrative health clinic indowntown Minneapolis. Learn
more@hennepinhealthcare.org.
Hennepin Healthcare is here foryou and here for life.

Speaker 2 (14:43):
And we're back talking to Dr. Miriam Anwar
about hospice care and end oflife issues. So Dr . Anwar ,
what I'd like you to talkabout, about, if you could,
about what some of the positiveimpacts of hospice care are on
patients and their families.
And maybe you could even thinkof a , a patient that you've
cared for or that you've been apart of , uh, to help
illustrate that I

Speaker 3 (15:02):
Had an elderly female with critical aortic
stenosis. That's a

Speaker 2 (15:06):
Heart valve problem.
Yeah.

Speaker 3 (15:07):
She also had dementia and she was very, and
we had early life decisionsthat she did not want surgery
and did not want intubation oraggressive care. So she came
with her daughter with kind oflike acute heart failure
exacerbation that , you know,fluid in her lungs, a lot of

(15:28):
edema, tried to manage her asan outpatient with diuretics,
you know, to get the fluid offand , um, wasn't successful. So
at that point we had thatconversation that we have a
life-threatening illness that'snot really reversible, you
know, in the absence ofsurgery, which she clearly was
too, you know, old and frailand deconditioned for , and she

(15:49):
was already on a palliativecare approach to, you know,
think about just beingcomfortable or, you know, we
could hospitalize and get thefluid off. Um, which I thought
was very reasonable too. Andshe was a very sparky and fun
lady , um, very pleasantly ,uh, demented and didn't have
any symptoms. You know, shefelt great, which

Speaker 2 (16:08):
She wasn't like gasping for breath or
something, or pain. That's whatyou get with aortic stenosis.

Speaker 3 (16:13):
Yeah. So we felt , um, very, I felt it was very
reasonable to hospitalize herto get the fluid off. And she
actually survived for a year.
Um , after that, a year latershe was readmitted for atrial
fibrillation. She had a, had astroke. She was, you know, more
confused and frail , um, atthat point. And so I had that
discussion again with thefamily about how to maybe focus

(16:35):
the care now based on herdecline, her recent
hospitalization, increasedconfusion, increased frailty
and deconditioning, andtransition to a more comfort
care and hospice approach. Sowe , she enrolled in hospice
and for a a , a few monthsafter it was very supportive to
have managed her comfort andthe pain and , um, therapy .

(16:58):
How

Speaker 2 (16:58):
Was her family through all this? Because
again, you know, this patienthas a heart valve problem. Yeah
. Which is basically terminal.
She's not gonna survive this.
There's no way to fix thisthing. Medications aren't gonna
work forever, but still, that'snot really in family's
consciousness. What , what doyou mean hospice? She's got a
heart problem. How did you getthe family to understand the
situation? I guess no

Speaker 3 (17:17):
Matter how much knowledge you have, I think the
hospice workers really helpground you and as hospice
physicians into the reality ofthe moment. Mm-Hmm .
because , youknow, when we are family, we
are kind of more protective andit's very difficult. And to be
in that reality of the moment,to see what's going on from the
perspective of those who arereally in tuned and experienced

(17:39):
at the end of life, that's oneof the benefits I think too,
that helped this family beinggrounded in the reality of the
moment and just having thatsupport of the staff that , um,
bereavement the poor , theirspiritual care, that family
care, and to see their lovedone, you really be comfortable
and peaceful and dignified atthe end of life.

Speaker 2 (18:00):
Yeah . And so that family experience, it sounds to
me like the full range ofhospice services, you know , in
a condition that they maybedidn't know they were gonna
have to do. You know, mom'sgetting confused. She has
dementia, she's got this heartvalve problem and what this
comprehensive multidisciplinaryteam can do for you sounds just
like a gift to me. It, itreally does. So Maria , you

(18:21):
can't talk about healthcarewithout talking about the money
part of it. So how is hospicepaid for? Is it covered by
insurance? Is it covered byMedicare?

Speaker 3 (18:29):
It's the Medicare benefit, a Medicare part a
benefit. Um, if you haveprivate insurance on Medicaid,
it also covers hospice. So itprovides that whole holistic
support and that team at yourplace covered by Medicare. It's
a great benefit for thepatient. That's

Speaker 2 (18:45):
Like super good news on the payment front for
listeners, Medicare Part A,that's the part it's covered
on. And that is the one thatkind of, everybody has, right?

Speaker 3 (18:54):
Medicare Part A covers your hospitalization,
that covers hospital , itcovers inpatient care. Medicare
Part B covers your outpatientvisits. Medicare Part D covers
your medications. The hospitalalso covers the medications
when you are enrolled, not forthe curative intent, but even
like, like anxiety or thingsthat provide comfort. So it

(19:16):
treats all those symptoms. So

Speaker 2 (19:17):
Don't worry folks, if , um, uh, most insurance
including Medicare would coverhospice care, that's actually ,
uh, encouraging news. AndWonderful. Before I let you go,
what advice would you give tofamilies out there who maybe
haven't considered hospice carefor a loved one?

Speaker 3 (19:34):
Talk to your physician. Keep the patient's
goals and wishes in mind.
Research shows that families ofhospice patients are more
likely the non hospice patientsto report that the loved ones
had their end of life wishesfulfilled. You know, with a
chronic disease, with a naturaltrajectory of decline, hospital
provides that comfort, thatdignity, that support to the

(19:58):
patient and the family andfamilies who fear giving up.
It's more of a shift fromfocusing on cure to focusing on
, um, comfort because you know,at some point your physicians
of advice that cure is nolonger benefiting the patient .
So we wanna support ourfamilies to what, what would

(20:20):
benefit them

Speaker 2 (20:22):
Both Dr. Anwar and I know a guy named Scott Davies,
he was my predecessor , uh, afew years ago as the chair of
medicine at HennepinHealthcare. And he always used
to say, you know, we're allgonna die. Our job is to help
facilitate a good death. Andhospice is one way . It's a
hopeful way to, to help usher ,uh, your loved one through
those last stages of their lifehere. So I actually think

(20:43):
hospice is one of the mostencouraging, hopeful things
that I encounter in healthcare.
And so I really appreciate someof those comments. So, beyond
our conversation here, Miriam ,where might people go to learn
more , uh, or get moreinformation?

Speaker 3 (20:56):
The National Hospice and Palliative Care
Organization and h hpco.org hasgreat information on the
website regarding bothpalliative care and hospice
care. So I would reallyencourage families to go to
that website to get moreinformation. I work with Acumen
and their website is also greatfor information regarding
Hospice

Speaker 2 (21:17):
Acumen is E-C-U-M-E-N listeners

Speaker 3 (21:19):
And the Mayo Clinic website. I would also recommend
for information,

Speaker 2 (21:23):
We have great colleagues with our, our
friends down at Mayo. So thoseare really three great places
to go. If you want moreinformation, we will put links
to those in our show noteslistener so you can get easy
access to great informationabout hospice care. Dr. Mary
Manir , thank you for being onthe show for enlightening us
about hospice care and aboutthe practice of geriatrics

(21:45):
medicine. I think you've givenhope and information for lots
of people. I really appreciateyou being on the show.

Speaker 3 (21:50):
Thank you for having me. I really enjoy talking with
you

Speaker 2 (21:53):
Listeners, be sure to tune in later this fall when
we will be talking about caringfor the elderly with
geriatrician Dr. Kerry Sheets .
And on our next episode, we'regonna be talking about measles.
It's back. And so are we In twoweeks, I hope you'll tune in
and in the meantime, be healthyand be well.

Speaker 1 (22:10):
Thanks for listening to the Healthy Matters podcast
with Dr. David Hilden . To findout more about the Healthy
Matters podcast or browse thearchive, visit healthy
matters.org. Got a question ora comment for the show, email
us at Healthy matters@hcme.orgor call 6 1 2 8 7 3 talk.
There's also a link in the shownotes. The Healthy Matters

(22:32):
Podcast is made possible byHennepin Healthcare in
Minneapolis, Minnesota, andengineered and produced by John
Lucas At Highball ExecutiveProducers are Jonathan, CTO and
Christine Hill . Pleaseremember, we can only give
general medical advice duringthis program, and every case is
unique. We urge you to consultwith your physician if you have
a more serious or pressinghealth concern. Until next

(22:54):
time, be healthy and be well.
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