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You're listening to the Assembly
on Behavioral Science and Health Services

Research podcast, brought to you
by the American Thoracic Society.

Welcome everyone

to another episode of Pulmonary
Palliative Medicine.

with the American Thoracic Society.

I'm Patricia Fogelman with my co-host
Jennifer Wesco from the Western Foundation

for Pulmonary Fibrosis,
and we are just beyond excited today

to have as our very special guest, Doctor
Yasin Mehta, who is an interstitial lung

disease and critical care physician
at Geisinger Health System.

And I'm going to let him
take a few minutes

just to introduce himself,
and we're going to dive

into some fascinating conversation.
Doctor Mehta, welcome.

Thank you.

Patty and Jen, it's,
so exciting to be part of the podcast.

That's so hard,
you know, very widely across the world.

And yet, as Patty said, and,
I'm a practicing pulmonary care physician

director of the program at Geisinger,
for the past, you know, ten plus years.

And I think that we are going to discuss
today is quite exciting.

So looking forward
to start our discussion.

I want to share with the
with our listeners that Doctor Mehta has a

very unique connection to palliative
medicine in that he is married to Mrs.

Doctor Mehta, who is a palliative medicine
physician as well.

And so since he has us inside track to

palliative care and its intersection
with lung disease and critical care

medicine, I thought maybe we would dive in
with the tough question first.

And so, you know, doctor, to tell me
a little bit about your perspective

about the collaboration
with palliative medicine,

especially as it intersects
with interstitial lung disease

and kind of the the taboo
that often surrounds palliative medicine?

And how do you broach the conversation
with patients, families and caregivers?

And how do you help, you know,
not just the patients and families

overcome it, but also even your colleagues
and staff providers?

That's a great, question.

Very.

And, when it comes to interstitial lung
disease, iconic progressive,

you know, fibrotic disease,
you know, an IPF being

probably the most recognized out
of all of them, when it comes to chronic

lung disease, there is a plethora of data.

These patients, actually have
significant symptoms that are coming from

not just early,
but because of this situation they're in,

which includes, you know, depression,
anxiety, insomnia, fatigue,

apart from the symptoms
that directly originate from the disease

itself, which is,
you know, breathlessness or dyspnea and,

you know, managing these, it's
certainly difficult.

And finding the right partners, you know,
to manage patient symptoms is critical.

But having said that,
there is a taboo around

palliative medicine because oftentimes

not just patients, but even providers

equivocate
that with hospice or end of life care.

And that is certainly,
you know, one of the big impediments

to why these patients
get pretty late referral.

If you look at the published data,
you know, for the IPF patients, 70

plus percent of patients
will have a medicine

that will in the last three days
of their lives.

And more than 60 to 70% of patients
will actually die in the hospital,

as opposed to probably at home
or near their loved ones.

Essentially.

And if once you acquire a client disease,
you suddenly have time period to address

some of those deficiencies that we see in,

healthcare systems
across a wide variety of reasons,

and there are a few factors
that actually lead to apart

from the misconceptions
about what palliative care is.

Delayed referral,

and that includes uncertainty
about the disease, prognosis says

maybe the providers their own skills
to initiate the discussion

about palliative medicine,
and then fear of prescribing medications

that may help assist patients symptoms,
so on and so forth.

So that is, you know,
one aspect is essentially the taboo

around palliative medicine,
which we know for any advanced

lung disease, should really be part
and parcel of their care plan

and not just as an end of life,
you know, management tool.

Then the second piece, as I discussed,
is to provide this, you know,

only limitation that comes,
you know, from, disease

prognosis and, and the skills to,
you know, initiate the discussion.

Doctor Mehta,
being a patient advocacy organization

and working very closely with patient care
partners,

really in the trenches
in navigating pulmonary fibrosis,

I alda and having the opportunity unity

with supportive care through this whole,

wraparound approach
and having these conversations.

And really what is so,

so important is also in the big picture
is not only with providers,

but with patients and care partners
in educating them

and having this information to them.

Be that catalyst in the conversation,
in talking about palliative medicine

and and Doctor Mehta,
you had mentioned it about a taboo

type of topic in terms of prematurely

getting to the place of advanced
care planning when that's so essential

in making sure that the next steps

in navigating pulmonary fibrosis, ILC,

are looked at in a way
that one is prepared.

And being like I mentioned before,
being a patient advocacy organization,

working with patients and educating
and having that opportunity to do that,

that collaborative partnership
with providers in palliative medicine

and providers in that space,
really coming together

and having the resources

for the community to then
bring it into the appointment

with, with the pulmonologist
or whomever that you're talking with.

Hey, this is something
that I would like to learn more about.

We do a lot of that in our support
groups and education programing as well,

but what other ways
can we really bring that to the forefront?

To making sure our community patient
led care partner

led to make sure that they are bringing
that into this conversation?

Education is so, so important. Of course.

But what other ways
would you recommend mend, for the patient

and care partner community
to really be, a catalyst in that process?

You know, it really starts
with the education of patients themselves

and about the role that medicine can play
in chronic diseases.

Oftentimes, just like as I was
mentioning earlier, when the providers

themselves equivocate palliative medicine
with the end of life and hospice

care, patients
have the same perception at times.

And when we are talking about,
on one hand, therapies

that can actually improve their longevity
and, and, you know, with the intent of,

you know, even if not cure,
but management,

we need to introduce the concept
of palliative medicine to the patients

themselves, saying that this is not really
because that is imminent

or this is because just because you have
a, you know, disease that's going to

be lethal in, in a certain time period
and so on and so forth.

But I think that these are the partners,
in your care team

that are going to assist you
as we go through the journey

in this disease
that we know is not durable as of now,

but only manageable and, and educating
about the role of palliative medicine

to the patients themselves,

I think is critical as it is,
you know, for the providers

who are providing the care for them.

And as you know, in medicine,

the is never delivered,
you know, by one person or one team.

It is its ability to provide
the care and imperative medicine

as part of that village.

When it comes to chronic disease,
especially disease,

interstitial lung disease. As such.

And I think this is so important
because I think these conversations

about prognosis,
especially with ILD patients,

has a substantial amount of variability,
right, because it's

dependent upon their performance status
and their age and time of diagnosis.

And at what point in this trajectory
are you seeing them?

And, you know, what are the interventions
that you can offer at those points?

And so I would want to ask you, you know,
following along with what Jen is saying,

how do you initiate
these prognosis discussions with them,

kind of that very nuanced balance,

right, of hope with realism
and then kind of how does that segue

into like that collaboration
with palliative medicine for these folks?

And so I think it would help us to

maybe hear a little bit more from you
about the prognostic

variability of ILD from your perspective
and experience, and then kind of

how do you initiate these conversations
with patients?

Absolutely.
I think that's a great question.

And you know, I would like to,
you know, provide some practical pointers,

you know, that providers can use
because we talked a lot, you know,

in the beginning about timing of referral
and and prognostication.

And so, you know,
how what do I use, you know,

what is my threshold
to refer to patients, repetitive medicine.

Certainly you can use disease
severity scores

such as gap score,
which is one of the, you know, scores

we use for patients with IPF and somebody
with the moderate and advanced disease.

You can use that as your trigger.
If you need.

If you are a person that acquired,
you know, relies on objective data,

but some other practical,
you know, pointers, you know, for referral

would be if a patient with,
you know, interstitial lung disease or,

or IPF require hospitalization,
that really should trigger,

you know, a referral to get into medicine,
because oftentimes

that tells you disease severity
and potentially about the trajectory.

Any patient that is oxygen dependent,

you know, that I use as a threshold
to introduce

the concept of is palliative medicine
for symptom management.

So those are some practical pointers
that our listeners can take from this,

that,
those are the, you know, three at least,

you know, ways
I actually, you know, assess

when is that the right time, to,
you know, refer the patient and earlier

the better we know that we have that
as a data, you know, in cancer literature

that earlier involvement of palliative
medicine improves quality of life and,

in these patients and improves outcomes
and ideally is no different.

We just don't think of early
in the terms of cancer.

And, you know, even though we know
that the median survival

for some of the,
especially for IPF is 3 to 4 years.

So we really need to think, you
know, a long, you know, in those terms.

And those are some practical pointers

for the providers
when to actually initiate conversation.

And then comes the how to initiate
the conversation.

That's the second piece are and
and how to do

that is again, you know, I'll go back
to framing the palliative medicine

in the context of a care partner
as an end of life, situation.

Referral is, I think, critical.

And so that they feel that,
that this is not because I'm going to die

or I have a bullet prognosis and hence
I'm being referred to palliative medicine.

I think the perception
around the palliative care,

they certainly needs to change.

And so I think that starts

with the provider themselves
having the clarity when to refer and then,

you know, discussing that with the patient
and putting it in that perspective

that this is not because you're going
to, you know, die or

but this is because we want to provide you
the best quality of life,

which we know that is not always feasible
in the doctor's office.

You know, we are very good at addressing.

And this is a lung disease
that treatment options managing

probably the symptoms such as this
then maybe cough.

But when it comes to the,
you know, emotional needs,

that spiritual needs, that social needs,
we may not often do a great job.

And that's the deficiency
that I see that emerged in the field.

And that's really the education
we want to provide to the patient

that, you know,
that is not just the symptom

and the disease aspect
that we need to manage,

but we need to manage the person
and that whole person.

Management can not be done by just,

not just so you know,
I think I'm going to add

a lot of boundary points
with my wife today, but

like, you know, we say I say that a lot.

I mean, Jen's heard me say that I say this
in teaching in academics to patients,

the residents,

the whole person is this entity
that extends beyond just the patient.

Right?

There is a family,
there are children, there are caregivers.

So whole person care
has to take into consideration

kind of the whole of the entity
that you're serving.

Right. And at the end of the day,

we're in service to our patients
and to their families.

And I think that balancing hope
with realism is is tricky, right?

Because there's a comfort level
that's required.

There's a certain level of gravitas that
we need to bring to the conversations.

But then there's also kind of
if we're honest as providers

and we've all been there a certain amount
of courage that we need to have

and then build and sustain
to keep having these conversations.

So if if I was your new ILD patient
in your clinic

with you and I come in and I'm,
I just started oxygen therapy

and my pulmonologist sent me to you,
but I don't know my,

lung function at this time, but,
you know, it's not great.

And maybe my gap score is moderate.

How would you kind of
have that initial conversation with me?

Like. Like you like.

I don't know, doc. I'm here
for you to fix me.

Which is, you know, I,
I hear this a lot, right?

This is a bit of,
role play here, isn't it?

But,
I feel like putting people on the spot

to really add to the value,
the experience.

I think it's, you know,

it's the way to frame that conversation
of how I go about, you know, doing that

be what I would say to you,
you know, in that situation

is that this is education, that we are
dealing with a serious disease.

We know that it has a progressive nature,
and we are going to do everything we can

to prevent a disease from progressing,
right, giving you the best quality of life

in which we are going
to use therapeutic options,

to use the options of,
you know, exercise.

We're going to option options have,
you know, simple management

and part of that symptom management
that improves your quality of life

and keeps you
functional is involvement of a specialty

that actually can assist me
in providing the best care for you.

And I think that is,

you know, and would you be open to that,
you know, idea, you know, care plan.

And I think that, often gives them
the opening

to ask further questions, about medicine.

So that's really how my pitch,
you know, to that patient is.

And I think that's amazing, right.

Because there's literature that says
when we explain something to our patients

and then follow it up with, does
that sound reasonable to you?

The extension of the question
is really I'm collaborating

and in partnership with you.

And does that sound reasonable?

Also kind of says,
I think it's reasonable.

Do you think it's reasonable?

And, you know, if we can agree on that,
we can follow down a path.

I would then kind of say, though, I think
when you have these conversations, you're

dealing clearly with very sick patients.

You know, it's very advanced lung disease.

How do you manage kind of the emotional
weight of these conversations?

If you're a critical care physician,
you're an advanced lung disease physician.

So in all honesty,
the emotional weight of the conversations

you carry on a regular
basis is fairly high.

And so if you're if you're speaking
on the level of physicians, the position

of providers to providers, you know,
how would you kind of address

the emotional weight of the conversation
and how do you balance that?

Yeah, that's always tough, isn't
it's not easy to have these conversations

over and over again. Right.

And so there is a certain amount of,
you know, a skill that's needed to deal

with that.

Those outreach

and those conversations are not easy,
certainly for the providers,

as much as they're not easy
for the patients at times.

And putting yourself in the patient's,
you know, shoes, I think and that empathy

you know, that one needs to,

you know, have in patients who are in,
you know, with the serious disease

I think really helps balance
that conversation, with the patient.

And that's what I find
that is helpful in,

bringing that patient,
the ideal, you know, care that they need.

And have you found document out
have there been like,

these high tech type of interventions
that you think

are either over utilized or under utilized
or have low utility?

So are things like high flow
nasal cannula particularly

effective in the long term
for these folks are particularly helpful.

Like what?

What would you say of these
existing therapies right now that you find

helpful versus not helpful?

That's a good question.

I think what
we should probably talk about,

what's the most helpful
that's proven by literature?

You know? Right.

For these patients
and I think one of the most important,

you know, that two things that have rise
to the very top of what's helpful.

One is a pulmonary rehabilitation.

Which we know has proven benefits

in improving quality of life,
functional capacity.

And data says that, you know, once
patient goes through the rehab programs,

what they get is, essentially improvement
in their FVC, as well,

not just the improved quality of life
from building the exercise endurance.

So that's, you know, definitely,
you know, one therapy that's very helpful

and oftentimes

not often available to the,
you know, the patients in other locations.

And depending on where they live
and proximity to a center

that provides that service,
the second is assuring appropriate oxygen,

you know, dosing and that, you know,
I divide it into two different categories.

Is this a patient that, you know, really

has good functional capacity
and still has mild disease?

And, and what will keep them mobile?

Because we know that getting oxygen tanks
are not easy at times for these patients,

that there's certain amount of

difficulty that comes along with that
and change in lifestyle that it requires.

And so there are patients with, let's say,

mild to moderate disease that can easily,
you know, use that oxygen therapy

to improve the quality of life, exercise,
endurance with the portable devices,

so that I find very helpful
for those patients.

But then there are some patients who have
really advanced disease with portable

concentrators themselves,
do not provide sufficient oxygen dosing.

And in which case, you know,
the best source would be the liquid

oxygen, which is often difficult
to deliver at their home.

But continuous flow liquid oxygen,
you know, really works probably the best.

I'm not so sure,
you know, that hydrogen and oxygen

have that much,
you know, utility when it comes to,

you know, longer term,
because they're not easy to tolerate.

The flow being
higher is not always comfortable.

And, and there are other ways
to improve their listening devices.

These gets to the point.

We will talk about

some of the pharmacotherapy
that we could use, in those patients.

So oxygen by itself

may not be the only therapy
that we would employ for those patients.

So very advanced disease.

And I'm sure we'll talk,

you know, more about symptom management
when it comes to dyspnea.

Apart from the pulmonary rehab and oxygen
therapy that we just talked about.

Well, and since you opened the door,

the symptom mentioned,

because you've noted
and I think this is important

that these patients struggle
with anxiety, insomnia, dyspnea, fatigue,

and probably
all of those are top symptoms, right?

As far as intensity, I don't know that
any one is less intense than the other

because they can feed into each other
and, you know, shared patients.

Right.

And so just excited
just becomes this vicious circle.

So if you're seeing them
kind of at those initial visits,

like what are some of the medicines
you like to consider using

to kind of intercept
that cycle of intensity for them?

Yeah, that's a great question.

I divide them into two categories.

The categories
that I'm very comfortable prescribing

and the categories that I need my partners
to prescribe.

Right. You know.

In life, that's how I divide

the divide that, you know, treatment
for when it comes to symptom management.

So let's say, you know, let's say
start with the, you know, dyspnea.

And so in my wheelhouse to alleviate
dyspnea is, finding them, you know,

a rehab, you know, program, finding them
appropriate oxygen supplementation.

And if that is not sufficient
and dyspnea remains

persistent,
especially with advanced disease, then

that's, you know, when I call
my palliative medicine colleague and say,

I need help in helping this patient,
and because they're

so much better at managing that symptom
with opioid therapy.

But for most pulmonary physicians,
you know, I would say

that they are not always comfortable
prescribing and managing chronic opioids,

drug and directing,
you know, changes in the,

you know, opioid formulations themselves,
how to dose convert, so on.

And so there are so many nuances
to prescribing opioids

that I've learned through my collaboration
with the medicine

that I certainly feel that
that's that's the, you know, the service,

that provides the best
when it comes to symptom management.

So, so that's, you know,
when it comes to this,

I, which is one of the biggest symptoms.

The second is, you know, chronic cough,
and,

and that's,
you know, always a challenging symptom.

We can certainly, you know, provide

the therapeutic, options, from the,
you know, and non therapy,

you know, are what I call,
you know, some other, other supportive,

you know, treatments
when it comes to hot honey, some lozenges,

Tesla pilots, you know,
some patients would respond to those.

There are some that just haven't tractable
cough.

And, you know, I use, you know, grant
and or gabapentin,

you know, for, for that purpose,
for management of cough.

And those are the medications, again,
I say within our wheelhouse.

But, you know, opioids certainly help
with the symptom of chronic cough as well.

So if you have a patient
that has progressive disease, that is,

suffering from,
you know, significant dyspnea and cough,

you know, again, the role of,
palliative medicine, you know, is

critical in managing those symptoms
along with that.

And would you,
would you use nebulizer for these folks?

Is there a role for for nebulizer medicine
in this population?

Because I see that ordered so often.

But there are question is there
is there a valid utility to it.

I don't find them, particularly helpful.

You know, in this patient population,
just because oftentimes

these are coming from the distortion
of the area and inflammation

and reactive airways,
which is what the disease pathology of IPF

or any chronic lung disease would be that
these are the patients.

So abnormal morphology of the airway
you just difficult

to address with the inhaled
bronchodilators or inhaled steroids.

And so so document
and let's unpack that for a minute.

Right.

Because the kneejerk response
when someone comes in and we're short of

breath
is to order the bronchodilator, right.

And then the equal knee jerk response of
comfort is to sustain the bronchodilator.

Because finally, you know, from a provider
perspective, that's what helps.

Breathlessness is our
is our generic thought, right.

It's it's what we've accepted
as a conventional practice.

And so then it becomes on some level
kind of

it's not a crutch,
but it's kind of almost like the same.

Right.

Patients and also patients buy in like,
oh, if I don't have that, I won't breathe.

Well, that's what they told me.

But can you explain a little bit more
about

kind of the the airway issue
and kind of why

a bronchodilator or those medicines
won't be particularly helpful?

I think it's such a key
piece of, of therapy.

Right.

You don't want to order things

that aren't necessary,
but you also want to not give false hope.

And a medicine's going to work.

It really is right.

I think, you know,
that's a that. Yeah, absolutely.

That diagnose
one of the diagnostic criteria.

Right. For especially for IPF.

We use radiological findings is element

of traction project assist which
ultimately leads to honeycomb changes.

And what that that changes
the morphology of the anyway

the fibrosis in the surrounding them
tissues

opens up and increases the, you know,

the size of that airway, which is what
we call, you know, bronchiectasis.

But this is unlike any other
bronchiectasis that you see from that

results, from infections or,
you know, or occurs

in the setting of asthma,
which are all primary energy disorders.

We have in, in, in chronic

lung disease, you're really dealing
with primary apparent camel

pathology, which ultimately lead
to changes in the airway.

So that's the difference

in the in a better physiology,
you know, of airways disease.

That and why the symptom of cough appears.

And in that situation
using bronchodilator isn't

going to assist that patient's in
or improve that patient's symptoms.

Just because the, the etiology
of that bronchial infection,

bronchiectasis is actually originating
in the pulmonary quarantine mind,

the fibrosis that's present.

It's an important question.

So so from the treatment
perspective of interstitial lung disease.

Like what
what are the options that you've been able

to offer patients
and what potentially kind of lies ahead.

You know from the perspective of realistic
hopefulness sports.

Right. That's a great question.

I think I would divide them
into two different categories.

You know, one is the IPF
and that is non IPF chronic progressive.

You know, you know ILD.

So IBS we know that is a data strong data
that from the treatment from the disease

management is that two options
that are available is dependent on

and maintain them in those two,
you know, have proven to reduce

the disease progression
and oftentimes acute exacerbation,

of the of the IPF.

And, and that's the treatment
that we would, you know,

one of the two options
are, are perfectly reasonable options,

to use, for patients with IPF
when it comes to non IPF.

You know, what we really have
data for is if you have, non

IPF, ild

essentially you know MCP that's
it is a different chronic technical

issue disease and fibrotic and SIB
you have patients

with occupational lung disease
that leads to fibrosis.

But, you know, patients with advanced
stage for what we call fibrotic sarcoid.

So if you have progressive disease,
that means there is a change in your

at risk on a year over year
measurement of greater than 5%.

Then in those patients,

there is a role, for and products

as a disease in a category preferably
in entanglement in those patients.

And so those, you know,
some of the pharmacological

I will be specific therapies
that are available now if you, if,

you know, so that that, that is, you know,
focusing just on fibrotic component

of most of these
and this is Lamborghini's.

And are there other

more aggressive interventions
that we can offer these patients.

So is the medicine is kind of
that's one level, right.

That's the medical management.

Are there those other interventions
that are kind of beyond that.

And so who are they most appropriate for?

Like how do you select, you know, the you
I think that, you know,

just like patients, you know,
when they get diagnosed with this disease,

especially IPF where we know
that we answer all these 3 to 4 years

that we want
to make early referral to medicine.

We also want to make early referral

in appropriate patients
to actually lung transplantation.

Oh yes.

That's the that's the curative option,
you know, that we are looking for.

So not all patients will qualify for,
you know,

you know,
unfortunately in Texas, lung disease often

gets diagnosed late,
just because of its insidious onset.

And, and the initially the symptoms
are attributed to either aging.

I'm just going down, you know,
so there is often a delay, in diagnosis.

And once the disease is diagnosed, it
sometimes is often

too late for some patients, but
they're not a candidate for transplant.

But then there are patients
with the family history of IPF or,

you know, or whether, you know,

maybe they're just very active
and they notice early onset of disease

because they become limited
and they say something is wrong.

And so we do come across,

you know, quite a few number of patients
who have the disease is diagnosed early

and they don't have,

you know, communities, which makes them
a candidate for president.

So I think while we focus on,
you know, a lot of a conversation focused

on, you know, patients
who have advanced disease

and, you know, where

they may not have that option available,
but that certainly is an option available

for patients in certain age group
with their functional capacity

being intact
with less medical co-morbidities.

Because that's the only, you know,
curative treatment that we know so far.

We don't have other curative,
you know, treatments that are available

for patients
with the IPF, and other types.

I think this is a doctor matter when,
you know, sometimes with, with,

the wonderful patients
that we work with in their families and,

you know, we're lean,

we're leaning into a lung transplant
and all that's involved with it

and staying the same vein of palliative
care, palliative medicine.

Sometimes these questions come up is

can I still be using the opportunity
of palliative care palliative medicine.

While navigating or even decision
making pre transplant.

Is this something to think about in
terms of okay let's go in this direction.

Because you know pre transplant
there's so many questions

of in fact do I want a lung transplant.

What does it involved.

Evaluation surgery post-transplant.

And so this is a very integral part
of decision

making of moving into palliative

care space
for the patient and their family.

So right it's a it's a complete village.

Exactly what you said.

And so and educating
through the process of,

you know, talking with patients
and making sure that they know

that this is something that is still
an opportunity for a lung transplant.

Can you share more about that?

Sure.

I think we can put this in perspective.

When you have

any kind of advanced lung disease
or any advanced disease for that matter,

the way we want to view
palliative medicine is that upfront,

when the diagnosis of a condition happens,
you really have a bigger chunk of time

devoted to the treatments

that are directly geared towards
improving the disease process

or preventing the progression
of the disease process.

And ready medicine may play,
maybe a smaller role,

but that equilibrium changes
in the field of medicine,

and then it should be a smooth transition,

because we have introduced medicine early
on as a care partner.

So that transition becomes a little bit
easier as the disease, you know, advances.

And,
and the imperative medicine will play

probably a larger role than your,
you know, lung doctor would play.

So I think that that is a continuum,
in my mind and with, early involvement,

that continuum can really progress
smoothly without,

you know, having two different
distinct care plan episodes that, hey,

first, 50% of your disease
process was managed by lung doctor,

and next
50% will be managed by a physician.

That really is the right model.

The right model is early introduction.

And, you know, a bigger role,
as the patient's,

you know, disease progresses
and the disease specific treatments

are not as helpful, but rather
symptom management becomes more,

you know, of a focus,
for that patient and, and transparent

conversations around the same idea. Yes.

It is a choice that,
you know, it's a big deal.

You know, a lung transplant is not easy
for patients to go through.

Certainly provides them good longevity.

And in the right patient
and in the right setting, it's

an absolutely wonderful option.

But then there are patients
who would say that maybe

I do not want to go through all that,
even though it may be an option for that.

And a patient's choice

having, you know, palliative medicine
as part of that conversation,

you know, it's certainly helpful
if patient decides,

after understanding this benefit
advantages,

disadvantages that they do not want to go
for transplant.

You know, you have a lot of medicine
as part of your team.

I must say that, for full disclosure,
I do not work in a transplant center,

but I do share a lot of my patients,
with the transplant center related

for the patients for transplant.

So we do see those conversations,
you know, for those patients.

And, you know, that I think is
that's a great place to also ask

the question of we we both have a history
of practicing in urban centers.

And then having come to a rural setting
for our continued careers, right.

And your your setting actually
is a level one trauma center.

So you have plenty of high tech.

You know,
the nature of support is high tech.

And so would you say that there's this

perceptual difference
in rural health versus urban health

when options like transplant
are being broached.

Is there some not necessarily
discounting of it,

but is there a pragmatism
that comes in a rural setting

that isn't in an urban setting,
or is there just is it more difficult

to want to pursue because there is
that kind of distance, right.

We we don't have transplant centers
in our backyard in urban settings.

Right?

We're often we're often hours and hours
away from, from those places.

And that can be a deterrent, right?

Certainly.

I think the distance is the key,
you know, here.

And the access is the key.

You know, it certainly is much easier
to be in a close to a,

you know, center that provides that,
that lung transplant patient.

And it is not I mean, there's that is,
there is no doubt about that.

Just because the commitment
that is needed on the patient side

to be a candidate for transplant
are significant.

And we, you know, as a provider
may not often realize that,

but often it requires for them to move
within a certain distance

of a transplant center
in case the lung becomes available,

the changes they need to make,

the financial burden of that, the anxiety
that surrounds, the entire process.

Mind you,

a big

surgery that's waiting for them, you know,
so I think there are so many factors,

that, you know, are involved
when it comes to lung transplantation.

It's not just, you know, a simple referral
for a surgery, but it's another involves

a whole lot of that and very I think,
access to, you know, a coordinated care

center that provides a transplant service
is, you know, certainly a key factor.

I can tell you from my personal experience
and anecdotes that there are patients

who have elected not to undergo transplant
just because all of these changes

they needed to make,

given the geographical location
of primary residence,

did not, do you know, go through apart
from other, you know, reasons,

and their beliefs, but, you know,
certainly the distance from the center,

you know, that, you know, relative
in their decision party.

That's a great question.

Rural population and and urban
where you are

and the accessibility,
the time that's involved

in doctor meeting society,
the logistics, everything involved.

It's a huge decision to make.

And it's it's such a pendulum.

And I know we're kind of diverting
into lung transplant

a such a personal decision.

All that's involved we have some
patients are saying absolutely not to

in the interim to saying, well,
of course I'll have a lung transplant.

And so and having palliative medicine
along the way to help support you

and continue that quality of life

is a another wraparound

approach, another level, as we always say,
with palliative medicine or care.

Is that other level of support
to get you to that point.

And so thinking about that as well,
I think that's just and

just such a great point
to make and and a great question.

So document I,

I shouldn't for you
kind of segue into the more psychosocial

and existential aspects
of caring for these patients.

What are some indications
that there may be

suffering on the part of the patient
and or their caregiver

that are not just physical suffering,
right.

Because we know and and, you know,
because you're married

to a palliative provider to that
not all suffering is physical.

Right.
And I think you see that in critical care.

I think you see it
in advanced lung disease.

But if you're
if you're talking to a provider

who's going to see some of these patients,
a patient comes in,

what are some cues that should kind of
alert us as providers to say, hey,

there's some other kind of suffering
going on here

that perhaps is psychosocial,
that perhaps is existential.

And then how do we as the combine teams.

Right. We're in partnership here.

I help address that for both patients
and their caregivers, because I think it's

sometimes the people

who get most marginalized in
all of this is often the caregiver.

Absolutely.

I think some of the ways
you identified that,

you know, some of the psychosocial
symptoms are developing as we know

that depression and anxiety are very,
very common in this patient population.

You know, close to 50% of the patients
will actually suffer from depression.

And what role that plays in actually
reducing the quality of life more

so than the disease itself.

You know, it is quite significant.

And, and I think, knowing your patient,
what they enjoy,

what they, you know, what they do,
you know, in their,

in their personal lives, I think is,
you know, provides a window into them,

that I used to go down to my garage

to do some woodworking
and have stopped doing that.

I used to enjoy walking my dog, and,
you know, I'm having difficulty

doing that, and that for that, I feel,
you know, quite sad that I cannot do that.

One that was my favorite thing to do,
you know, to walk with my dog.

And I think, some of those are,
you know, kind of the clues one can use.

I think that is a question
that it's not on top of my head,

but this needs assessment,
you know, questionnaire one can use

if you want to be really formal about,

you know,
going about inquiring those symptoms.

But I think oftentimes, you know,
those are the,

some of the clues that the patient may
need some help in addition to, you know,

to address that depression and anxiety
that, you know, so common, one and 2

or 1 in three patients would actually have
that as a concurrent symptom.

And so, you know, in,

in, in our cancer clinic,
I'm embedded in our cancer clinic here.

And one of the things we do
is a psychosocial distress screen.

Right.

Which is a routine document.

It's there's several versions available.

You can implement it into your clinic
or your EMR,

you know, fairly straightforward way.

So if if you see this distress,
you know, let's say your patient

or your or their family tells you like,
oh my gosh,

you used to love going into his garage
and tinkering with his

his engines and stuff,
and now he's not leaving the living room.

What would be,
at least for the purpose of at that visit?

In an immediate sense,
what are 1 or 2 strategies

to kind of implement
or start to help try to address that?

I mean, I know there's more longer

term stuff to keep working on,
but just that what is an in the moment

support that we can offer these patients
when we're seeing them?

Yeah, it's about again,
putting the question back to the patient

that, you know Mr.
Smith used to enjoy doing that.

How about if I can help you,
to get back to what you enjoy?

But, you know, whether it is a therapy,
whether it is a counseling,

whether it is actually addressing,
what are the worries,

you know, that they have
that comes with the disease.

I think, asking that open
ended question to the patient,

about how much, you know,
they think they would like to help.

And that often opens up the conversation
about what they're willing to

or not willing
to accept from us as a healthcare team.

And I find that,
you know, is a very effective way

to, you know, inquire
about ultimately being patient

also would want to be a partner
in their own care with us.

And I think we oftentimes don't ask enough
open ended questions to the patient

to elicit some of these, you know,

potential preferences that patient
may have, regarding this area.

So I find that that's, you know, probably
the best way is to inquire about that.

And test that.

And then we can
once we meet the patient where they are,

we can figure out the strategies
to, you know, help them,

whether that's pharmacological treatment
with these support groups,

you know, that are actually,
you know, run by, you know, various,

you know, foundations,
I think, finding them that community

to talk about their symptoms
with the patients

going through the same kind of diseases
that they're going through,

there are various resources one can use.

Palliative medicine again, comes hanging,
with the social worker,

the chaplain, resources,
that are embedded within their model.

So I think we can meet there, you know,
not just the diseases,

you know, depression, anxiety, but,
you know, other needs that they may have

which are often not visible to us, you
know, as, as straightforward and doctors.

Doctor.

Man, I'm so glad that you had mentioned
about really an early in the conversation,

really bringing in the troops
in that support around and adding into,

moving forward with your patient
and their family is using resources

outside, like patient advocacy
organizations, support groups, educational

type opportunities through the conduit
of patient advocacy organizations.

So I'm so, so glad that you had mentioned
that that is, something

in part of that conversation is,

a very, very helpful, resource for folks.

And, I think that's thank you.

I appreciate you saying that
because it's important.

It's really important.

Secondly, we have patients
who are part of the support groups

and, you know,
the stories that they tell me, you know,

after they've been to that and the impact
that they had, you know, during that is,

you know, certainly, you know, left a,
you know, kind of print on my, my brain,

that this is something that's invaluable
to patients and oftentimes

their loved ones,
they go with their spouses

and they have their, you know,
a little bit of coffee and a conversation

and that goes a long way with us and,
quality of life as such, and I agree.

So, Doctor Mehta, I have to ask you from
from the overall perspective, right.

You have this intersection
of a very advanced fetal complex

lung disease and the space between
where that's discovered and

and trying to be managed and where
palliative medicine can intersect.

So if you could tell us,
like in your perfect world,

what would the ideal collaboration
look like

from the perspective
of the advanced lung disease physician?

You know, with the collaboration
or partner

kind of like what, what, what should
what should that really look like?

You know, in your eyes, that's a that's,
that's a good question.

I think

that that's a that's a great question,
Patty.

Yeah.

I think, you know, ideal
when when you talk about ideal

what it is, what the ideal world
should look like for patients with,

you know, IPF or other advanced,
fibrotic lung disease is that this is a,

you know, a subject clinic
that actually is a multi district clinic,

that not only includes lung doctor,
but includes respiratory therapist,

social worker, and palliative medicine,
you know, embedded within that same

make this pain clinic.

You know, there are lots of, metrics,
clinical models, oftentimes oncology,

you know, appointments,
if you know, that occur in that,

you know, fashion
all the time that you see it,

you know, not only your oncologist,
you see a radiation oncologist,

you see, you know,
other relevant specialty.

So there is concept that this is free
clinic, that is not just,

you know, involves lung doctor,
I think would be the ideal world.

We don't always have the resources
at every locations, you know, to do that,

but that would be, you know, ideal,
you know, for, you know, if you ask me

what your ideal world looks like,
that really what we should aspire to,

provide, you know, for the patients,
one stop shop, for,

you know, for, you know, for the person,
not just the disease.

Yeah.

And then that's

where I think it helps both the patient
and the family and the caregiver the most.

Right.

When there's this wraparound approach
to care.

And so, you know, I know our, our time
together is kind of drawing to a close.

And so I wanted to add that Amanda you've
you've taught us

a couple of really important lessons
right through the last hour.

So and I think some of the important
takeaways are,

you know, be curious, not judgmental.

In the words of

Ted Lasso,
I also think that it's super important

to kind of know that the early integration
of the early recognition of the disease.

So if you're seeing a patient in pulmonary
clinic with some subtle changes,

some changes on exertion
or tolerance to activities,

to really start questioning it
and not being as dismissive

and saying, oh, it's age related
or it's just a weight gain issue too,

but to be willing to dig a little deeper
and that answers can be gotten

from things like a really thorough,
comprehensive pulmonary exam, a thorough

and oximetry test if necessary.

I think that it's important to recognize
that the early referral to transplant

oxygen therapies rehab can't be stressed
enough.

The support.

But what would be, you know, if you
if you had to tell

a new pulmonary provider coming in to,

you know, managing some advancing
lung disease in these settings or DLT,

what would be like 2 or 3 top takeaways

that providers in this setting
could kind of start implementing

today to, to do better
in the care of these patients?

Yeah, I think, you know, learning
about the threshold for referral,

like I mentioned earlier,
when is the right time to refer?

That's number one.

Number two,
would be actually introduction.

And sometimes it does require
a little bit of rote learning what we did

today, you know that how to introduce
the concept of palliative medicine.

For these, you know, folks,
while you deliver, you know, disease

specific therapy I think would be the,

you know, the other
and then a little bit of,

what I call a primary palliative medicine
versus a specialty palliative medicine.

So all of us really need to become

a little bit
of a primary palliative medicine provider.

When we introduce the concept,
we introduce, you know, the benefits and

and then, you know, bring the really,

you know, specialty medicine,
which are the medicine providers

who are trained and equipped
with all the knowledge that they have.

I think those are, you know, kind of the,
you know, practical, you know, advice,

that I would give
and I think removing that taboo regarding

palliative medicine, equivocating that
with the end of life and hospice care

really needs to, you know,
and we need to amplify that.

I think that's important for improvement.

You know, in that

and I think as providers, that's something
we should rise to the challenge with.

Right?

We are an enlightened group
of educated professionals,

and we are perfectly able of this day
in an age

to be more enlightened
about something, to be willing

discard an old misnomer

kind of categorization of the service,
and to really kind of just say,

you know, in the, in the work of serving
a patient with advanced lung disease,

there is a space for a partnership
and a collaboration across the board,

you know, with an advanced lung disease
provider, with palliative medicine,

with the caregiver support resources
and education and and to really kind of

so that is really how we optimize,
you know, whole person here.

Right.

And I think that, you know,
really the biggest takeaway

that that I keep hearing from everything
you're teaching us today

is that the curiosity about a patient
and their life matters.

That willingness to sit down
and kind of explore the issues

matters and that willingness to dig
a little deeper is important.

Right?

And I think, you know,
we're lucky to have someone who kind of

has that dual perspective, like, I'm
an advanced lung disease physician.

I will bring, you know,
the forefront of medical therapies to you.

But I'm also, you know, kind of balance
that that hope with realism.

Absolutely.

I think I couldn't agree more. Very well.

I think you summarized
that perfectly beautifully.

You had a then I could, I could
you said it.

All right.

I mean I think that's been the key of this
last hour together is that there's,

there's this partnership to build.

And so we do have to kind of
leave our issues at the door

and, and say, you know, we're here to all
serve the same person.

So let's all,
you know, rise to the top of our levels

and just the top of our abilities and,

and do that in partnership
respectfully with each other.

Because in the end of the day,
the person who benefits

the most is, in fact,
the person we're serving.

Absolutely. Our patients, their families.

So, you know, I'm super
thankful that you were able to take time

out of your schedule today and join us.

I know that we, took a lot of your time
today, but I appreciate you very much.

And I look forward
to getting to your brain in the future.

Okay.

Thank you for topics.

Thank you. Doctor Matt,
we appreciate you.

Thank you for your kind words, Patty.

You're an old friend.

And, Jen,
it was a pleasure to, you know, spend,

you know, the hour with you and,
and talk about what is my passion

is, you know, indecision and disease,
you know, in general.

Thank you for the opportunity.

So on behalf of the American Thoracic
Society and the Breathe Easy

podcast,
we are going to end our session today.

And thank you all for listening.

We've been spending this last
really good hour with Doctor Gotham.

Meta.

Who heads up advanced lung disease
and interstitial lung

disease management at the Geisinger
Health System in Danville, Pennsylvania.

Thank you, thank you.

Thank you for joining us today.

To learn more, visit
our website at thoracic.org.

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