Translator: Lucas Mohnen Reviewer: Camille Martínez
I was playing soccer with some friends,
when my wife called to say her water had broken.
We were expecting our fifth child,
but this one was different because he didn't weigh much.
My wife was only six months pregnant,
but the baby was ready to come out.
So we rushed to the hospital, our heads spinning
with thoughts of what could happen.
And after two intense days, Juan Bautista was born.
He weighed barely two pounds, just a tiny little thing.
At that moment, as you can imagine, we were bundles of joy and fear.
He was premature, in an incubator, surrounded by nurses and doctors.
Four members of my family were outside asking for information
and nobody could guarantee anything,
because the baby was so small.
At that moment you just don't know what's going to happen.
What we did know was that we would not be alone
and that the baby would want for nothing;
we would take care of him in every detail.
And that's how it was.
He's almost four now,
and bangs up the walls kicking a ball around the house.
I imagine we all know what a newborn needs.
But hardly anyone knows
what someone who is at the other end of life needs -
what a dying person needs.
That's what I'm here to talk to you about today.
I'm privileged to have worked as a doctor for the past 15 years,
accompanying terminally ill people through to the end of their lives.
It's called palliative care;
the work of a team to take care of people
the way any of us would want and would deserve to be taken care of
at that particular time.
And when I talk about terminal illnesses,
don't just picture elderly people,
because, sadly, this affects people in every stage of life:
workers, newly married people, teenagers, athletic people,
gluten-free people, smokers and nonsmokers ...
In some way or another this touches us all,
and I'm sure we all know someone
who's fighting this kind of disease.
I can think of many people I am helping at the moment,
or perhaps people that you know,
people that may be in this room
or watching this on a screen.
To honor each and every one of them,
today I want and feel I must tell you
that a lot of them are probably suffering unjustly.
Because in modern societies,
only one person in ten receives the appropriate care
in these situations.
That is really serious.
It means there are people in pain out there.
But not "I sprained my ankle" or "I've got a headache" pain -
not a fleeting pain.
It's the kind of pain that doesn't let you sleep or think.
It means there are people out there who are really uncertain
about the course of their treatment and of their disease.
They notice they're losing weight, that they can't go to work anymore
and nobody tells them what's going on.
And sometimes uncertainty can bring you down
more than any symptom.
People obviously feel things -
anxiety, distress, fear, doubts -
and they need to be heard.
But they're mostly ignored,
because listening takes time.
There are people bouncing around the system -
and I hope this never happens to you -
going from one emergency room to another, asking for help,
feeling as if they were a nuisance,
and then going back home, because nobody wants to admit them.
It's because these are patients who cost the system money,
and so they're left out of it.
I believe this happens because, among other reasons,
we have a hard time talking about death.
It's a topic that scares us.
We're paralyzed by the unknown, what it will be like to no longer exist.
We watch films about intensive care units, wires and tubes everywhere ...
We are frightened by physical decline,
by the idea of fecal and urinal incontinence devices
and of depending on others.
A woman told me the other day:
"Matías, I already know what I have,
but in a moment my body suddenly felt old,
and I'm only 52 years old."
The terrible consequence of all this is that today,
there are people dying anonymously,
without saying goodbye, without settling their affairs
and sometimes without knowing what's happening.
It's a difficult subject;
not a good topic for socializing,
nor is it a "sexy" one, as my friend, Juan, would say.
And that's an important part of the problem.
The first time I had dinner at my in-laws' house -
I'll never forget this, it was the night we met.
And right in the middle of dinner, my father-in-law says:
"Well, you work in palliative care,
I'm sure you don't get many presents for Doctor's Day."
Do you know who has the toughest time talking about death?
Doctors.
We are somewhat accomplices in keeping false hope alive.
We've been given the task of healing people,
so we find it hard to recognize when we cannot do it
and instead we prescribe all sorts of unnecessary treatments,
water answers down - "We don't need to talk about this,"
but time keeps moving on.
And this particular moment in time, for these people, is precious.
It is unique.
Just like when you got your degree, you got married or your child was born;
moments in which you meet people, key events.
Well, this is the moment in which your life is ending -
the last moment there is -
and you should give it the place it deserves.
It's like the last summer afternoon at the beach.
The sea is freezing cold,
a violent wind carries your beach umbrella away,
but you say, "I'm going to swim anyway, who knows when I'll be back!"
Well, it's a bit like that.
It's a time to enjoy yourself, to look ahead.
Everybody should have the chance to really live the end of their own life,
to be responsible for their own decisions, instead of having other people decide
where or with whom they should be;
to spend time with their loved ones, without pain or symptoms;
to settle their affairs and write their will;
to put their soul at peace;
to write the ending to their own biography.
That might sound a bit bizarre, but it's a right we all have:
to live in dignity until the very end, no matter your disease.
(Applause)
The right to be taken care of just like a newborn.
And it's good to know this, because we need to demand it.
Palliative care has been around for a long time.
We have excellent teams doing this work in the major hospitals
in big cities, covered by insurance plans,
but that remain largely unknown.
Their numbers are growing.
And those least aware of these services
and are therefore the ones who suffer most,
are the people most in need.
That's why, back in 2009,
a group of friends and I decided to build something different,
something to reach more people and in a better way.
We founded the Buen Samaritano Hospice,
a facility aimed at assisting poor people
living with terminal illnesses.
Together with a team of volunteers, doctors, nurses and psychologists,
we become like family to those who are on the outskirts of life
and welcome them not so much as patients but as guests,
who will find their name at the headboard of their bed:
Leo, Liliana, Ángel, José.
They arrive out of nowhere, exhausted, distrustful, in pain,
but I can assure you that here, that movie takes a turn.
Because we ask them who they are;
we relieve them of those unexplained pains
that they've been experiencing for months.
We explain what's going on with them,
and they realize there are people who will help, who'll take care of them,
who are fully committed and will always be there for them.
And what happens then?
They start eating and taking naps once again,
they rediscover that God is with them, now more than ever.
They go back to praying and recover hope.
They go from feeling like a diagnosis to feeling like a person again.
(Applause)
And we realized that you don't need a huge budget,
fancy technology or large facilities for this -
you need people who are eager to do it.
So, we got down to business
and began offering our services in cities, in public hospitals.
We provide not only care and medications,
but we also offer classes,
so that everyone knows what this is all about.
And what's happening is really good.
Thousands are being accompanied
through this delicate stage of life.
Hundreds of volunteers are giving their time
to take part in it.
Entire teams of doctors, nurses, psychologists and social workers
are getting on board and moving things forward at their facilities.
And the best thing is that we all realized nobody has to suffer,
and that the famous phrase "There's nothing more we can do"
is one of the biggest lies in medicine.
When you provide care, assistance
and professional, humanized relief from pain,
people's lives - even the lives of those about to die - change.
We see families reuniting at this point,
talking naturally about what's going on,
preparing for the end.
We see children spending entire afternoons with their parents,
sharing with them and enjoying them.
We see mothers doing their last motherly duties for their children
and providing final pieces of advice.
And when they thank you, that is incredible.
The other day, at the hospice, a woman told me:
"Matías, I would've never imagined
that I'd be able to call my father 'Dad' again."
As sometimes happens in life,
they had grown apart 15 years earlier,
and they were meeting again during that special week,
a week as special to them
and to the grandchildren finally meeting their grandfather
as it was to those of us who were part of that moment.
The truth is, we haven't seen miraculous comebacks,
but we have witnessed profound personal and family healing
during this singular stage of life.
And that is very powerful.
Each passing year, I grow more convinced
that this isn't just the job of doctors, hospitals or nurses.
If each and every one of us dares to talk about these issues,
if we ask for the right kind of help when we need it,
it will give many people the opportunity to live better,
for many families to live better
and for us to have a better society.
People always ask me:
"You have five children, your home is surely like a kindergarten,
and yet you have this unusual job.
What is a good day at work for you?
How do you feel at the end of the day?"
What I feel
is a bit like what happens to me each time I approach a patient's bed
in those last days of life.
For example, Viviana, a young woman of 44,
whom I have known for several months
and who is now asleep, her breathing is shallow,
(Imitates shallow breathing)
with some pauses, but comfortably,
with her husband at her side, as always.
I greet him with my eyes.
We both know there is not much time left.
At this point, she's only getting saline with a bit of morphine,
so she's not in pain or gasping for air.
There's a photo of her three little boys,
the apples of her eye.
I get a little bit closer, take her hand,
and at that precise moment I recall
everything we shared,
what we talked about,
her smile,
her look,
her desires,
her character.
What a great woman.
It moves me to think of her.
I check her pulse:
barely perceptible.
Some long minutes go by
and she has no pulse.
She stopped breathing.
She was here a second ago,
and now she's gone.
It's a mystifying second in which I feel
that Heaven and Earth intersect,
while she moves on,
serenely
and in peace.
(Applause)