You know, I've heard people say I

was thinking about palliative care,

but it may be a bit

too early for that or

I was considering palliative care

for my patient, but I don't want her

to think I've given up on her.

Been a little bit of time talking

about palliative care in neurology.

And nothing to disclose.

The objectives are to provide an

overview of palliative care, to

discuss palliative care in neurology

and to present cases that illustrate

palliative care concepts.

Definition of palliative medicine is

really specialized

medical care that aims to recognize,

prevent and alleviate suffering

of all forms physical,

social, psychological and

spiritual suffering.

But not only for our patients, but

also for their family members.

It's really a whole person,

whole family approach to care.

Many people think that palliative

care is appropriate only at the end

of life.

Hurry, hurry, hurry.

Somebody call palliative care

patients about to die.

But really, we know palliative care

is appropriate even at the time of

diagnosis and throughout

the course of medical disease.

I mean, even after a person dies,

palliative care can be helpful in

the form of hospice care for

family members.

So palliative care is appropriate at

any age and is a stage

in patients who have serious or

advanced medical conditions

independent of whether the goal is

cure or maximizing

quality of life.

In 1996, there was an article

in neurology titled Palliative Care

in Neurology.

Dr. Burnetts said it's imperative

that neurologists understand

and learn to apply the principles

of palliative medicine.

That same year, there was another

article that stated the neurologists

have a duty to

provide adequate palliative care.

In order to do that, we have to have

a working knowledge of the clinical

pharmacology of opiates

and benzodiazepine.

Three years after that,

there was a survey

given to US neurologist

to see what their attitudes,

behavior and knowledge was

about end of life care.

Of those surveyed, 37 percent

of neurologists thought that it was

illegal to administer analgesics

in doses that risk respiratory

depression and terminally

ill a less patients, 40

percent. A neurologist thought the

legal counsel was needed

to consider stopping life sustaining

treatment. And eighty nine percent

of neurologists said, you know, we

need more training

and more education on this.

So neuro palliative care, what is

it?

Well, as the name suggests, it's

palliative care for patients with

neurological conditions.

Essentially, all neurologists are

doing some degree

of palliative care just by nature of

our patient populations and doctor

point nurses that we all

should be doing some generalist

level of palliative care

for patients that have

neurodegenerative conditions,

significant medical conditions,

advanced neurologic conditions,

and that some of these patients

should also be referred to

interdisciplinary specialist teams

for specialized palliative

care.

So people often wonder, what do we

actually do during a palliative

medicine council?

Well, we cover the eight domains of

palliative care.

The first is structure and process

of care.

So we ask people, you know, what do

you understand about what's going

on? What have they told you?

We want to make sure that we're

starting at the same place.

We also explained what palliative

care is.

We focus on trying to improve

quality of life for people that have

serious or advanced medical

conditions.

Then we also talk about hospice

care, which is palliative

care, but

it's for people who are near the end

of life, people that have six months

or less to live.

If the disease progresses in its

normal fashion, then it's often very

helpful to distinguish the two

because many people equate

them with each other.

We talk about physical aspects of

care.

It's really our review of systems,

are there symptoms that we can work

with their primary physicians

to manage?

We ask about social aspects of care.

Are you married? Do you have

children?

Who is your support system?

Who's helping you get through all

this psychiatric

and psychological aspects of care?

We ask, are you anxious or

depressed?

How are you coping with everything

going on?

For spiritual aspects of care, we

ask people, are they religious?

Are they spiritual?

But also what gives you meaning?

What helps you get up every day?

The cultural aspects of care, we're

interested to know other things we

should know about you to

help take the best possible

care of you.

For ethical and legal aspects of

care, we ask people, have you

written out who you want

to help you make medical decisions?

If you can't make them for yourself.

And then we also asked,

do you know what decisions you would

want made if you have a terminal

condition and end

stage condition or if you're in a

persistent vegetative state,

you're at the end of life and there

is no reasonable chance

of recovery.

And when it's appropriate, we also

talk about caring

for our patients.

At the end of life.

So the first case is 67 year old

gentleman history of coronary

artery disease, and

he had been diagnosed with

progressive supranuclear policy

about six years after his symptoms

began.

Palliative medicine was cancelled

for goals of care and symptom

management.

At the time that I saw him, he was

in a wheelchair, his wife had said

that initially when his symptoms

first began, his gait was just a

little unsteady.

He was having some falls

but was able to continue to work.

But over time, his walking

works and he was having

significant falls.

He eventually fell and broke a hip

and therefore had been in a

wheelchair since then.

His wife was providing assistance

with all of his activities of daily

living.

He was losing weight because he was

having some trouble swallowing.

His wife was having difficulty

understanding him, kept saying his

speech was quite slurred

and they talked about how many pairs

of glasses they had at home because

he was just having difficulty

seeing.

I asked them, what are you

hoping for, given what

you know about your condition?

He said, you know, I understand

my diagnosis and I don't want

my life artificially prolonged.

His wife said, you know, I want to

try to keep him at home if I can.

I don't want to have to put him in a

facility.

Within his wife went on to.

Expressed the sense of

loss of who her husband

was.

She said, you know, he's not the man

that I married forty five years ago.

His chief nuclear officer

who was working in the U.K.

for much of his career.

You know, she said, I don't have

the independence that I used to have

because he was working overseas

and I was on the hunt for an I could

really spend my time however

I chose to, but now

I'm taking care of him 24 hours

a day, seven days a week.

And then she said, you know, because

we had this long distance

relationship, we relied

on our discussions.

And now with his Disha three,

I have lost the conversation

with my husband.

She looked up and said, you know, I

miss him already.

Well, he was sitting right there in

a wheelchair for what she was

describing was something called

anticipatory grief.

There was grief that was already

occurring prior

to the actual loss.

So when we think about trajectories

to death and disability in

neurologic disease and we look

at the bottom left

graph, which shows

this steady but progressive

decline, and we often

see this in patients that have

neurodegenerative conditions,

family members and loved ones

are watching the decline

over time and they are grieving

what's being lost along the way

and ultimately grieving the death

before it actually happens.

The second case is a history of

hypertension, diabetes mellitus,

atrial fibrillation and mild

dementia.

She was admitted to the hospital.

The left M.S., a stroke.

She received I.B.

TPA and had

a subsequent hemorrhage in the

setting of likely cerebral amyloid.

Of medicine was cancelled for goals

of care and Interrail feeding

options.

Before she came to the hospital, her

daughter said she was doing quite

well. She was relatively

independent at home.

She lived with her son and he would

help some with meal preparation

and medication management.

But otherwise, she was independent

in her activities of daily living.

So despite her age, I'm telling you,

she was doing well.

So we asked them, you know, had you

ever had any discussions about

what she would want?

She had a serious medical condition.

And they said, you know, we had

she always said she never wanted

a peg tube placed.

And she wouldn't want to be

resuscitated, but they said,

well, we're not sure if under

this circumstance

she would still not want those

things.

One of the doctors said, you know, I

tried to ask her this morning the

things she said she did

want, the feeding tube.

The other doctor said, I don't think

she does.

Well, they weren't really sure.

And we asked, did she have any of

this written down?

They said, no, she doesn't have an

advance directive.

So I decided to pursue the peg

tube.

So she had it put in and she pulled

it out.

They had it back.

And then when she got back up to the

hospital room, she became

tachycardic into kidney.

She was found to have bilateral

pulmonary embolism.

She can be anso coagulated because

of the interest rate haemorrhage.

And so a family said, you know,

let's grant her comfort at the end

of her life and they decided to

transition her care to hospice.

As we were talking with them,

they've mentioned that she didn't

have anything written down.

And so we had to think about who

makes medical decisions,

given the fact that she couldn't.

So since she didn't have a health

care surrogate designated,

we went to the health care proxy.

And this is specified

by state.

So in the state of Florida where I

practice, we initially

go to the spouse if there's no

spouse.

We go to the adult child or

children. In this instance, she had

three persons that I'm going to

let my sisters make the medical

decisions if

there are no children.

We go to a parent.

If there's no parent, we go to adult

sibling.

If there is no sibling, we

see if there's an adult relative.

There is no adult relative.

We see if there's a close friend.

If there's no close friend, then

many hospitals have a relationship

with a social worker at another

hospital who makes a medical

decision. But we have a beautiful

opportunity to really encourage our

patients to complete

a living will and health care

so we get form or the combination

of advanced directives so that

family members know what their

wishes are.

A few months after this patient

died, her daughter directed me to a

blog that she wrote and she allowed

me to share it with you.

She said, many of you know, my mom

went home to be with the Lord a few

weeks ago.

God was merciful and swift in her

departure from this earth.

However, there were a couple

of days when my family, under

difficult circumstances, had to make

emotional decisions.

Doctors asked us if mom had a living

will. Our advance directive.

The answer was yes.

No. Well, sort of.

We had talked about them plenty over

the years, but she never wrote

them down.

She teased us in, shall we say, a

rather stern way to never, ever

put her in a nursing home.

She told us time and time again she

didn't want to be resuscitated or

intubated and she never

wanted to live with the feeding

tube. But somehow the

writing them down part never

happened.

She goes on to say, We may think we

know what a loved one wants,

but I'll have to tell you when

things get dicey.

Emotions run high.

That's when we start second guessing

what we've known to be true.

That is, unless the ill

family member left a specific plan

with a plan.

There is no question, no guessing,

no guilt.

You just follow it.

This single center study.

University of Rochester.

They looked at their palliative care

console's between 2005

and 2007.

During that time frame, that one

hundred and one console's for

stroke.

The majority of them were for a

scheme extra patients followed by

sub arachnoid hemorrhage, and what

they found was that the reason

for consultation was most commonly

for discussions about life

prolonging care, such

as mechanical ventilation,

artificial nutrition and

tracheostomy.

They also found that in this cohort,

these patients were more

functionally impaired.

They were less likely to have

capacity to make medical

decisions. They were more likely to

die in the hospital and they had

fewer traditional symptoms

than the other palliative care.

The third case, the forty 45 year

old lady, had a history of anxiety,

diabetes, melitus, hypertension.

She was admitted with a right NCEA

stroke.

She was status post I.B.

TPA mechanical throm back to

me and decompressive

craniectomy for malignant dema.

Palliative medicine was console to

for caregiver and family support

and to discuss goals of care.

We met with her husband and

daughter.

They said, you know, we know her

well.

Her husband said we've been married

for 15 years.

Her daughter said, no, we're

essentially best friends.

All of her children still live at

home, even though we're grown.

We're very, very close family.

She said, you know, I'm really

worried. I don't want my mom to

leave me.

But both the daughter and her

husband said.

But we know that she

wouldn't want to permanently be on

machines and tubes.

If she's weak on one side, which is

cognitively intact

and if she could recognize us, then

that would be OK.

She would want to live.

And so I showed you four

trajectories of death and disability

and neurologic disease, and I'm

adding a fifth one here, a neuro

critical illness.

In this trajectory, there's an acute

event that happens where the

function and quality of life drops

significantly.

And then we have this period of time

where we're unsure about what

the outcomes going to be, and that's

often when palliative care is

consulted.

Is this person going to improve

with some disability?

Are they going to progress to a

persistent vegetative state

or are they going to die?

And so as we're trying to help

family members make these decisions,

we're trying to do something really

called affective forecasting.

We're trying to use what we know

about the patient and what we're

hearing from their family members

and translate that into treatment

decision than an effort to try to

predict future quality

of life.

When we do that, we can make some

errors caught forecasting errors.

First is the disability paradox.

When people have severe

and persistent disabilities, they

tend to rate their quality of life

much higher.

And if you ask other people

how they would rate their quality

of life if they were to have

that type of disability.

The second is the focusing illusion.

People have these severe

disabilities.

They focus on what they

can do.

Vs.

what they can't do.

So when you look at

this diagram, A

shows a quality of life gap between

a person's expectations and their

lived experience.

If they have a stroke, their lived

experience decreases

and therefore the quality of life

gap widens.

But if they go to rehab, if the

stroke is small and they return

to baseline, then their lived

experience comes back parallel

with the expectations.

Let's look at B

same situation, they have a stroke,

but they don't get better.

And so that quality of life gap

expands.

And stays just like that,

and so people often in this

situation rate the quality of life

as being low.

Let's look at see.

It's a similar scenario to be where

they had a stroke and they don't

improve.

But in this situation,

some patients have recalibrated

their expectations.

So you see the expectations

decrease and therefore come

back in parallel

with their lived experience and

the quality of life gap narrows.

Again.

What's fascinating here is

that in some patients, their lived

experience exceeds

their expectations.

This often has to do with the

capacity of the human spirit to

adapt to these situations.

So as we're trying to help family

members or even our patients make

some of these very challenging

medical decisions, we're trying to

take the evidence.

What do we know about forty

five year old women that have

large NCEA strokes

that require

mechanical thrown back to me,

that have malignant three bullet

dema?

What do we know from our expertise

about how our similar patients have

done?

And then what do we know about this

patient's preference for care?

We're trying to create that

decision based on the sweet

spot in between

evidence, preference and expertise.

And we're taking all the information

that we can gather and helping

patients and family members make

these very difficult decisions.

And so we think about palliative

care in the ICU.

Think about the neurologist or the

intensivists

and the palliative care specialist,

the neurologist or intensivist is

providing the primary palliative

care generalist, palliative care,

the Patika specialists providing

specialist palliative care.

And then we see this collaboration

or collaborative model for

palliative care in neurologic

illness.

And sometimes that amount of

collaboration increases

and sometimes it decreases depending

on the situation.

The fourth case, the 53 year old

gentleman, is a history of

hypertension and

had been diagnosed with metastatic

non small cell lung cancer.

He was on both intrathecal

and systemic therapy for

his cancer as he had brain

metastases.

And so palliative medicine was

console for symptom management,

goals of care and support for his

family.

When he initially presented, he was

quite fatigued in a wheelchair,

his family said when he tried to

stand, he was very unsteady,

said he was confused.

He was not close

to the brilliant engineer with

multiple patents to his name that

they knew his appetite was

poor, he was losing weight.

I asked them, you know, what are you

all hoping for?

And they said, we're hoping that his

cancer directed treatments.

Get the cancer under control.

We're hoping that his quality of

life improves.

He had an excellent support system

with identical twin brother and

his mother. He also had another

brother and family members and

friends who were helping to provide

care.

You know what, if the chemotherapy

doesn't work?

And his twin brother said, you know,

I can't imagine life without

my brother.

So some people are wondering, why

would palliative care be consulted

when he was undergoing cancer

directed therapy?

Well, let me show you his timeline.

So in months one and two,

he was receiving intrathecal

chemotherapy and underwent

whole brain radiation and

cervical spine radiation.

And we were helping to manage his

symptoms. Fatigue, constipation,

poor appetite.

I mean, three, he had now developed

some of the symptoms associated

with radiation therapy

and we were helping to manage the

adverse effects of that

dry mouth and some knowledge

as well.

And he continued on intrathecal

chemotherapy and he began systemic

treatment as well.

By month four,

he seemed to be

a little bit better from a

symptomatic standpoint, but we

continue to help manage his fatigue

and constipation and nausea by

my. He was clearly better.

He was no longer in a wheelchair,

but was using a walker to come to

the office.

He was still fatigued, but

his family said that he was up more

during the day than he previously

had been.

He was still noshes, but it was

definitely improving.

And by month six, he was walking

into the office without a gate aide.

He was conversing appropriately

and he was engaged in the discussion

and his family said he was eating

three meals a day.

He was going out with them to

the store and to run errands.

And I said, you know, I don't know

if we have to keep meeting every

month. You seem to be doing

much better than when I first met

you. And I said, you know, we can

follow up on an as needed basis.

Now we know each other.

We've established rapport.

I know what your wishes are.

We've documented those.

And so if you need me, just

let me know.

In 2010, Dr. Jennifer

Timbal and colleagues were

interested to know.

If they randomised patients

to either usual care,

which is routine oncologic care,

vs.

patients that were randomized to

usual care plus early palliative

care, what would the impact be

on quality of life

and mood?

What they found was that in the

combined group.

The quality of life improved and

mood improved, which was

no surprise.

This is really the value

of palliative care.

They also found that the patients

in the combined group more more

likely to have resuscitation status

documented again.

No surprise that

decreased health care utilization at

the end of life.

No surprise there either.

But what was interesting

and I think surprising for this

group, but also for the oncology

community in general in the

palliative care community, was that

the patients who had both usual

care and palliative care,

they live two point seven months

longer than the group

that had routine oncologic care.

And so this was interesting because

many people tend to think of

palliative care.

It's expediting death,

and this study showed that in

some patients, actually,

palliative care could lead to longer

survival.

The Journal of Oncology practice

in 2016.

Suggested that high quality cancer

care should include palliative care

at the time of diagnosis,

through the course of treatment,

even into survivorship.

And until the end of life, I

want to share.

A couple of points that are outlined

in this neuro palliative care skill

set.

And so all neurologists should

be able to effectively communicate

prognosis with their patients

and talk about the best case

scenario, the worst case scenario,

or the most likely case scenario.

We should all be able to master

common preference, sensitive

decisions while

using shared decision making with

our patients or our patient's family

members.

We should all be able to manage

basic symptoms and really

hold body pain.

Physical, psychological, social.

We all should be able to also

discuss options

at the end of life with our

patients.

So in some way, palliative care is

appropriate at any age,

at any stage of disease

when patients have a serious or

advanced condition.

Patients with neurologic diseases

certainly has significant palliative

care needs. And oftentimes those

needs increase throughout the

disease course.

Palliative care can improve the

overall care for patients

and families and

neurologists have an opportunity to

really provide primary palliative

care for our patients.

Thank you.