Translator: Michele Gianella Reviewer: Alessio Politi
Listening has been a staple element of my professional growth.
I worked for 40 years at Monza hospital,
where I followed more than 3,000 children with leukaemia and lymphoma.
85% of that 3,000 fully recovered,
and this is an exciting figure, today;
not only here in Monza,
but in the national and international circuit.
So the goal of real recovery exists in the pediatric field.
But I also brought 600 of them to death.
And this is perhaps the saddest part,
but I was also greatly enriched by those 600 children who didn't make it.
So I asked myself -
someone once asked me: what are the limits of medicine today?
The limits of medicine are [the inability] to heal everyone:
if I could heal everyone, maybe I would even change my job.
But the non-limit, for a doctor - and this is what I always set my mind to -
is being able to make everyone feel good, even those who are poised not to make it.
So I deliver true healing wherever possible;
but the quality of life must be for everyone.
This principle has led me for 40 years.
And I have learned a lot, from children and families,
as I actually do believe in the principle of communicating vessels:
I try to give a lot,
but to be able to continue on this path I also need to receive a lot.
And the search for this gifts, that children and families gave me,
has allowed me to keep it up.
So I wanted to share with you
two fundamental concepts.
What does it mean to stay aside of a child and a family on the path of care?
What does it mean "knowing how to listen?"
I had a teacher for this, Elizabeth Kubler-Ross,
with whom I shared a period of my professional life
and actually gave me concepts
I then applied in everyday life.
Respect, both for children - even if they are very young -
and for the elderly.
These are two tipycally neglected categories:
children don't get it,
and the elderly are at the end their life.
No, they need respect and caring skills also.
The fourth is the concept of a therapeutic alliance,
which you may have heard.
But the therapeutic alliance is not an easy concept.
It means ponying up one's energies,
energies we often have but don't even know we have,
and come out in times of need and trouble.
What does that mean, what did Kubler-Ross teach me?
I took this excerpt because I think it's very meaningful.
She says, people are like stained glass.
They sparkle and shine when the sun is up;
but when it goes down,
they only reveal their beauty if there's light inside.
What does that mean?
We have to believe in what we're doing.
We have to be there, the patient wants us to be there.
So, these two dimensions, believing and being there,
bring us close to our patient.
And in my case, as a pediatrician, to parents, who need that presence.
I have taken the concept of accompanying from some families,
who, without knowing each other, echoed the same concept.
This is a family who lost their son,
they write to me - this letter was a huge reward for me -
it says: "The meeting with Dr. Jankovic,
who accompanied us for a short but intense period of our life,
was for us the discovery
even pain may not be considered a private matter.
But a common starting point
on which to build, through memory, a new reality.
The great ability of sharing" -
therefore "accompanying" means sharing, it means putting something together
even if it is difficult,
even if it is not as simple or as linear as we would like it to be-
"that we experienced, has helped us to understand
how useful it is not to get lost in our own pain
but turn it into a source of energy,
aimed at sustaining those in the same need,
and it is through this understanding that we express our gratitude
and joy to have met you".
They lost their son, and acknowledge you.
It is obvious that as a doctor, from a professional point of view,
I need data, statistics, percentages, significance;
but as a human being, even single examples like this are enough.
And listening also requires, it was mentioned earlier,
a non-verbal capacity
that children - the sick in general but children in particular - give you.
This little girl, Clementina,
gave me this poem a few weeks before death.
And I highlighted in yellow the things that struck me,
because she says:
"I would like a cat. A nice holiday.
I would like to grow my hair.
Sometimes I'd like to disappear".
Then she says, "I wish I always felt good".
So the children care about their health, too.
It's not true she doesn't understand:
she cares, she wants to join in her struggle for recovery.
"I wish there was magic, and being magic":
she had understood very well
the traditional treatments we were doing, unfortunately,
were failing with her.
"Then I wish everyone in the world were happy,
for everyone's wishes to come true,
go deep sea fishing,
to travel the world.
I would like to see the stars, enter the Sun" -
she was already projected into the afterlife.
So she simply asked to stay close to her,
because she knew what was in store for her.
And Veronica, 13 years old,
and I took this with me as a will and as a commitment,
even when I go to talk to volunteers, to people -
that is, we must try deliver what we are asked.
She says: It's important -
"What matters in life is not knowing how to appreciate it.
What counts is knowing how to live the moment when it ends."
And this is for all of us.
Us as health workers, and those who want to be close to the patient.
So we get back to that concept of normality of life,
which is not easy but the sick person wants it.
Compassion is no use, merci is no use:
it annoys, almost.
But being present at any time,
that is important.
And normality calls for an effort by our side.
I consider sick people, even sick children,
like warriors, strong warriors
who are forced by conditions to elicit their energies.
But who is the real hero,
in the care of a child or a sick person?
Caregivers are the real hero.
But not only us as doctors, or as medical staff;
but also the people close to them, primarily their parents.
A short time ago, I was struck by a seven-year-old boy with leukaemia.
The treatment lasts for two years, so at nine his treatment were over,
and is considered out of therapy.
The concept of healing takes a little more time,
a couple years of observation,
but he was out of therapy.
Ten years later, he writes a letter of gratitude
to his mother:
"Thank you, Mother, for what you gave me during the treatment".
Why?
Because mom was working.
She'd go to the hospital with her laptop, yell at him, nudge him -
that is, she gave him that normality he thought he had no access to,
as he was ill, so his case was more serious.
And this thank you after ten years - a meditated, thoughtful one -
has a great value.
A four-year-old boy pulls on my scrub and says:
"Dr. Jankovic, why has my mother gotten so ugly"?
And that makes you think.
And in fact my suggestion, even with the parents, is:
go home, go to the hairdresser,
show them that life flows regularly.
And this, I dare say, is a heroic act.
I mean, doing something beyond tradition.
And a 16 years old boy I brought to death,
only one 19 year old told me explicitly:
But Dr. Jankovic, am I dying?
That's a tough question.
I don't say an unforeseen one, but one you don't expect,
or you're not sure what to answer to: but I was there.
I was there with him, I was talking, we were talking
and I said:
you're in a hard time, dealing with death; but you're here without pain,
we're talking about your next holidays -
we were both well aware he wouldn't make it,
but we're talking about this
so it doesn't seem that impending.
And he, like all children, who are big provocateurs, said:
"Actually, you're right".
He gave me a poem, before leaving us, by Marta Mederos,
entitled "Die slowly he who becomes the slave of habit"
which made me think a lot.
In fact, it's true: we are slaves of habit,
we are afraid not to play by the rules.
We are afraid to do something that goes against the law,
rather than ethics or anything else.
And so Tonucci,
a psychologist who visited our Centre
and also a cartoonist,
made these cartoons
to say how important the attitude is
towards the sick, and therefore the child.
"Now let's not let Paolo notice."
And the child, wonderful wicked being -
if the child wants to put you in trouble, he will,
he puts you in the condition of being in trouble -
he doesn't say: "How did it go?", but: "It didn't go well, did it?"
There's already a negative frame, and that puts the parents in crisis.
But what Tonucci was able to grasp well
is the fact that this gives the sick person
the task, also, of supporting us healthy, us adults:
"I must try to cheer them up, otherwise they suffer too much."
The children of a certain age, with whom I shared a healing path,
told me:
"better not to say everything, my parents could suffer".
So for me it's important, when we talk about listening -
listening is the basis of communication,
communication is really the fruit of correlation and sharing
that this path requires.
So yes I was - I'm not saying heroic, but I changed the script,
I talk directly with the children about their illness.
Children from the age of four, five years and up.
And what did I do original?
Always with the support of psychologists, so I didn't do things my own way,
but I spent a period in the US for this very reason,
I talked to children alone,
without the "catalytic" presence of their parents:
they are obviously informed, and I have their consent in advance.
So you speak directly, and they are happy with that
because they are treated like human beings,
to whom I am not talking about percentages or stuff like that.
I don't say directly, "Hair will fall out": these are details.
The interview has to be dynamic,
I have to guess what they want to know;
but it's got to be a scientifically valid interview.
I use the word leukaemia, I use the word tumor:
but children, most of the time, don't even know what it is.
So it's an adult fear.
And by talking to the patient and the siblings
I open up that communication within the family
that also puts the parents
in a position to accept those difficult questions,
or those sometimes intriguing questions that they ask.
Because parents can say:
"Talk to Dr. Jankovic, talk to Dr. Spinello and the staff,
so they can explain you exactly what is happening."
At that moment, sharing and communicating with the child
becomes a "winning" moment, I dare say.
Why winning?
Because even the sick people, even the youngsters, must be listened to.
And this also applies to the adult:
"Sharing" means "making him aware".
One of the mistakes we make, as doctors, is scaring people.
Pediatricians also do that: we scare parents, we scare the child.
"If you don't do this..." but that's not the way.
This is ephemeral, it won't get you very far;
instead, understanding what is happening,
and sharing a path that will take its time -
when I talk to children,
I always make a metaphor with a thriving garden.
In a flowered garden, weeds grow without anyone wanting them.
In a marrow , the garden in this metaphore,
good cells generally grow - this is true for tumours and leukaemia -
but sometimes other lazy, wicked cells grow,
that bother the healthy ones.
And so this metaphor
actually gets them a little bit closer into what's going on.
And even when the disease can reoccur, that's fine.
Because in a beautiful, well kept garden -
and this justifies the sustained gardener's attention,
which is the care that we give for a certain period.
Is it right to say, two years?
I don't say two years, it doesn't matter:
but I answer precise questions that the child can ask.
The child can tell me: Jankovic, I see so many bald heads.
Will I lose my hair, too?
Then I say yes.
But if I say it before he expects my yes,
and I am "invasive" towards him,
I discourage him.
I've seen little disheartened girls
without knowing what was being said about the disease:
their mind was on that.
That's where qualitative discourse, in my opinion, makes all the difference.
And we must have the courage, also,
to start that alliance I have told you about,
our inner forces
can really be directed towards a positive goal.
And the desirable goal is, in my case, when 85% of children heal,
but 100% improve their quality of life.
Anger, fury, depression,
all unfortunately deplete our energy.
The help we can give
is instead to direct these energies towards a common goal
that the other realities can then take on too.
Other prominent players are the institutions, volunteers,
people who actually want to provide an all-encompassing care of the patient.
And the last thing I wanted to share
is this: listening means, also,
seeing what they tell us and what they teach us.
There was this kid who wasn't responding well.
I go to see him, I tell him, You look a little sad today.
Do you want me to bring you a football player, a sportsman, a singer?
Maybe bringing important people...
And he candidly admits, I'd like Mrs. Antonia.
The janitor of his room!
I said: why Mrs. Antonia?
You know, when she comes here
she always tells me stories, fairy tales, we keep each other company.
Mrs. Antonia!
It wasn't what I wanted for his good, as a doctor;
but that's what he was asking,
at a time when Mrs. Antonia - who was ill, wasn't there -
was giving to him.
And Mrs. Antonia, in fact, brought him to death.
And another child,
who always brought me drawings of trains,
was an incredible six-year-old boy.
When things started to go awry, he brought me drawings of trains
with a black cross instead of a level crossing.
Which tells you something.
I said: Claudio, have you ever been on a train?
No.
Then I arranged to go on the train with him.
At first, I thought Pendolino, but it was too fast.
Then I turned back to the Monza-Lecco which is a little bit more manageable,
and we had an incredible day
with the great solidarity of those who actually contributed to this:
the stationmaster, the railwayman, people who gave us their solidarity.
And this is another form, a way of being close
and making sure that it is not a gift
but a quality of life for the child poised not to make it.
And this, by the way, has greatly helped relieve the parents' grief,
because they phoned me for several years
not the day their child died,
but the day we went together by train on the Monza-Lecco.
So the ability to listen remains indeed fundamental.
And Marcello, seven years old, left me this poem
that fully recapitulates
what I shared with you insofar.
It's called "Dolcezza" (Tenderness).
It says: "Much like fire in the burning night,
I saw your eyes.
They cried.
They loved.
They smiled, your eyes.
They're dear, they're pure, they're as sincere as tricks.
I love them, I feel them imprinted in my life.
They are your eyes."
And he ends: "I find them tired, today, but still tender, believe me Mom."
Marcello, seven years old.
Thanks.
(Applause)