Death is a day worth living |Ana Claudia Quintana Arantes | TEDxFMUSP

On the one hand, relieving the pain and suffering of patients and family members. On the other hand, retrieving those patients’ life stories. This is the daily exercise of Ana Claudia Quintana Arantes - a doctor graduated from the São Paulo Medical School (FMUSP) and a specialist in palliative care at the Pallium Institute, Argentina, and the University of Oxford, in addition to a postgraduate degree in Grief Counselling. She’s responsible for implementing assistance policies for pain assessment and palliative care at the Hospital Israelita Albert Einstein, São Paulo, and is a founding member of the Casa do Cuidar, Practice and Teaching in Palliative Care Association. Currently, she works in private practice and as an assistant physician in the hospice section of the Hospital das Clinicas, FMUSP.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx

Well, first I need
to explain what I'm doing here.

I can't actually believe I'm here.

I'm a licensed doctor,
graduated from São Paulo Medical School,

and very early on in medical school

I became interested
in something a little unusual.

It was very difficult in the beginning,
in the early years of my medical practice,

because I had different views
from other people.

There's a poem by Manoel de Barros
which I think is so me.

He had a girlfriend who said

she didn’t see a heron by a river,

she saw a river by a heron.

The way of seeing things,
the way I was seeing it,

was to "unpractice" the rules,
as Manoel de Barros so well put it.

So, I "unpracticed" the rules

because I started taking care
of people in their final days.

As a resident doctor,
my colleagues disliked me

because I'd fill my beds
with dying patients.

And that made me
understand more and more

how much medicine
had to offer to these people,

which was contrary to what everyone said:

that those who work in palliative care
have nothing to do.

In medicine, when you have nothing to do,

then you deliver the patient
to palliative care.

The second most difficult part of my work
was actually working in palliative care

because in our culture,
palliative is something like a quick fix -

"You're going to do a palliative." -

I heard that in class,
and it was painful to hear.

And palliative, in fact,

isn't like covering a loose wire
with electrical tape.

"Palliative" comes from
the Latin word "pallium,"

which means cloak or blanket,

like the capes worn
by the knights of the Crusades

to protect them from the elements.

And this is exactly what I do.

I do palliative care, protective care -

protective care against suffering,

which is the nature of a serious,
incurable disease,

with no chance of treatment, of control,

that threatens the continuity of life,

and is progressive in that person,

and, inexorably, leads to death.

When we talk about this long definition,
I'm talking about the terminality

that everyone thinks has to do with time:

"They have less than six months.
They're terminally ill."

"They have a week.
They're terminally ill."

Terminality has to do with this concept.

It's a serious, progressive disease
that is following its natural course.

And it produces adversities
which we call suffering.

Disease is an abstraction of reality.

It's in the books.

It's under the microscope.
It's in the definitions, the publications.

But when disease finds a human being,

it produces a unique melody,
which is called suffering.

The disease may be the same,

but suffering isn't.

Suffering is unique -
each person has their own.

And suffering has five different tones,

five different frequencies.

You have physical suffering,
which makes a big noise.

It impedes you from hearing
all the other sounds

from this human being.

This physical suffering,
in palliative care,

is treated with urgency.

Because there's a real risk of death

if you don't deal
with the human suffering.

There's a lot to be done
in relation to symptom control.

Then you move on
to the emotional dimension,

which has a different tone,
although much more complex,

which has a Bach type of quality -
very complex, very rich.

Medicine is simple, folks;
psychology is difficult.

Every human being is unique
and will express at that moment

the awareness of their finitude.

Everybody here knows we all die one day.

Does this shock anyone?

It's not a surprise, is it?

You don't imagine
it could be in two weeks' time

from a stray bullet, for example.

When we talk about
the emotional dimension,

there's this pressure
to understand, to seek out

why this is happening.

In the social dimension
of all levels of palliative care,

we realize that suffering
is separated into four parts:

physical, emotional,
social, and spiritual.

Since I'm kind of pretentious,
I like to separate the social into two:

the family dimension
and the social dimension -

because we never get sick alone,

we get sick together with our family.

We're part of our family,

and later we become
a sick person in our family,

and after we die, a hole is left
that needs to be taken care of.

The spiritual dimension is fundamental

because it gives us
the essence of being human.

Spirituality isn't really
about being religious.

Religiosity is just a way
for you to achieve spirituality.

You find spirituality
in the way you relate to yourself,

in the way you relate to others,

in the way you relate
to nature, to the universe,

and with God.

There are those
who relate to the universe,

and it has nothing to do with God,

but it doesn't give
this spirituality less importance.

We look for meaning in our existence.

There must be the "whys."

And then we can endure
the "hows", as Nietzsche said.

Palliative care, therefore,
treats human suffering

in all these dimensions.

Contrary to what's been said,

there's a lot to be done
in palliative care.

We work very hard.

Because when I look at a patient,
I can't feel frustrated

by the fact that there
is no cure for their illness.

Because if I graduated as a doctor
to take care of people,

I can't get frustrated
because their disease has no cure.

But many people do medicine
to treat diseases.

There's nothing wrong in this,
but this option must be clear to you.

The patient knows by your face

when you say to him,
"Everything will be fine,"

and your eyes show the contrary.

The patient understands this frustration

as "There's no hope for me."

And then, we reflect

about the significance of time
when we talk about palliative care.

To understand the importance of this work,

we have to realize
that in a situation like this,

where you're in
an outpatient clinic at 9 am,

and you're attending someone like this ...

She's really prepared herself
for this appointment.

She's been waiting 3 or 4 months for it.

She'll have 15 minutes,
maybe a little less than I have here,

to show you the importance of this.

She'll have 15 minutes
of the doctor's attention.

She's been preparing 3 months,

thinking of the most important things
to discuss in those 15 minutes.

Because part of those 15 minutes

will be spent by what
the doctor will say to her.

She's prepared, she dressed herself up,

put on earrings, a new dress, a hat.

Is the one sitting
on the other side ready for this?

Do they give this the same importance
that she's giving it?

Because the time that the two
will exchange is exactly the same:

the doctor will give
15 minutes of their time,

and she'll receive
15 minutes of their time.

The only difference between
the two characters in this scene

is that she has no time to waste.

The one sitting on the other side
has to understand how important it is

that she has no time to waste

with someone who doesn't care
about a human being

right up to the last minute
of their lives.

"There's no hope."

We can't possibly offer this to a person

who is much more than a body,
much more than the biological dimension.

When we talk about statistics,

we know that, in Brazil, around
1,100,000 people die every year.

We will be part of this statistic
at some point in our life.

At some point in our life,

someone we love very much
will be part of that statistic.

In Brazil, about 800,000 people
die of foreseeable causes.

They die from chronic
or degenerative diseases

or from cancer.

This foreseeable death
gives that person a chance

to reorganize their own existence

and to understand
what steps they want to take.

And they need someone on their side
who understands a chart, a statistic,

who does scientific studies.

Because science is brilliant, folks,
being a scientist is wonderful,

you discover so many good things.

You can offer so much to these patients.

And science has
an interesting characteristic:

everything you replicate has quality.

If you treat a million people
and find the same result,

this is scientific.

this is evidence-based medicine.

But with art, it's the opposite.

If you replicate art, it's called piracy.

Human beings are unique;
they're not copies.

They can't be replicated.

So you need to find the best
that science has to offer,

from evidence-based medicine -

there's a lot inside palliative care

that's consistent, grounded,
and technically well-executed.

You need to educate yourself
and understand the importance of that

to offer the best for that patient,
so they can get the best out of it.

If there's something very ethical
to be done in palliative care,

it's not doing for the other
what you would like for yourself.

That would be silly.
You'd do things as if they were for you.

The most ethical thing
we can do in palliative care

with a terminally ill patient

is to listen in the way
we'd like to be heard.

Then we'll understand
what it means to be on a chart

when you hold the hand of someone
who's included in those numbers.

A lot of people ask if it's morbid,
if it's difficult to work with death.

"Wow! Your work is beautiful!
But it must be very difficult, right?"

But I can tell you something:

it's one of the most
amazing jobs in medicine

because you don't suffer burnout,

contrary to what's said
by many who study burnout.

They say that people
who work in palliative care

or people who work
with terminally ill patients

have very high rates
of occupational stress,

but this is untrue.

Those who work with patients
who die are indeed stressed

because they don't understand
what they're doing there.

Those who work in palliative care
are exactly the opposite

and have the smallest possible
occupational stress rates,

because we learn to value life.

We're not an apology of death.
Death isn't pretty.

It has a unique, sad beauty.

But death isn't beautiful;
life is beautiful.

When you go into your office
like that, sit in that chair,

and look at the patient,

look at that person in a different way -

as Chico Buarque says,

"In a different way
that you'd never done before,

a warmer way of seeing
than you were accustomed to" -

then the person knows
there's someone who believes in them,

that they can handle this;

that, yes, they do have little time
but that you're by their side.

You'll treat their symptoms
with the same respect, persistence,

dedication, and determination
with which you'd treat the cancer

or treat their heart disease.

Once you're able to relieve
the physical symptoms,

the patient has the chance

to take care of everything
they need to in life -

things we leave till the last minute.

Is anyone here ready to die today?

Don't raise your hand;
come talk to me later,

and I'll refer you to a psychologist.

Nobody is ready, folks.

We always leave things
till the last minute,

like put on lipstick, brush our hair,
use the bathroom before traveling.

It's the same with every human being.

We have the illusion that it's the first
impression that sticks.

But it's not. It's the last.

It's amazing how everybody,
in their final days,

awakens, pours out

that which is the essence
of the human being -

which is the loving state.

The generosity with which these people

distribute wisdom,
knowledge, and gratitude

to those who work
in this with dedication -

I cannot describe it here.

And then we'll live periods
that can be filled with much joy,

especially because sometimes
patients have two joys:

one is to live that moment without pain,

and the other is to live that moment
when they can ask for forgiveness,

reconcile with a person they really love
and are able to thank them.

They do this once,

and they're really happy telling you
they were able to do it.

They say, "Can you believe that?

I did it!"

Then you can resume relationships,

redo situations,

understand your existence in a way
that makes total sense

during your final days.

Because we know
that at the end of a book,

we're able to understand a lot
that we didn't understand before.

Soap operas and movies are the same -
they make perfect sense at the end.

And if we're feeling no pain,
no difficulty in breathing,

no discomfort, fear,
guilt, or abandonment,

we'll be able to understand
the meaning of all this.

This lady here was one of those
who taught me the most.

We spent three months together.

I enter people's lives.

It isn't a pleasure meeting
Dr. Ana Claudia, it definitely isn't.

First, because I'm a geriatrician,

dealing with that phase of life
no one wants to go through.

And then I do palliative care,
so it isn't a pleasure

because I enter that door
that everyone wants closed,

which is the one of suffering,
disease, death.

But once I enter, I start
to become a very intense part

of that person's life,
of that family's life.

And there's no way around it, we're human,

and we give and take.

And the lessons we receive
are indescribable.

The day she passed away,
I had the chance to say goodbye to her.

It was very special because
when I was saying goodbye to her,

she shed a tear.

I shed dozens, but she shed only one.

And it was a tear that falls
from the eyes of a person

who had the chance to break free
from physical suffering,

who had the chance
to break free from fear, guilt,

the loneliness of being in that moment,

for having to go through
this moment alone,

freeing themselves from abandonment,
reconciling with their family,

being present with everyone
for most of their time,

admired by all for their courage to face

their final days.

And then that tear fell,

that yes, it was sad -
a legitimate sadness, right?

We can't help but feel sad.

But it was a pure tear,

from the essence of a life
that had found meaning in its existence

and was saved.

So when I speak about palliative care,
I also talk about saving lives,

except that we save historical lives -
life with a capital "L."

Not a body, not a disease that's healing,

but giving people the chance
to board first class.

In this life, regardless
of anyone's religion here,

in this life, we only die once.

You can't mess it up.

If we get the chance
to find professionals

who commit their time
to the importance we give to our time

and place priority
on the things that we determine,

we'll be very lucky people.

And I'd like to add that I'm very happy

to know that there are more people
who can one day believe

that death is a day worth living.

Thank you.

(Applause)