Knowing how to live until the end
Author: Ayres Marques Pinto
15 September 2015
Feature | Community engagement
The Festival del Saper Vivere FINO alla FINE (Knowing how to live until the end) will take
place in Recanati, Italy, the City of Giacomo Leopardi’s Hill of Infinity, between 9 and 11
October.
The three day festival will coincide with World Hospice and Palliative Care Day 2015, and will bring
together exhibitions, workshops (including yoga and art therapy), theatre and a musical concert,
inviting those attending to contemplate life and to consider the end of life as a natural part of living.
Festival organiser, Ayres Marques Pinto, shares his own personal discovery of palliative care, and his vision for this year’s festival.
The philosophy of palliative care and hospice
I'm very enthusiastic about the Palliative Care Philosophy and the Hospice Movement. I'm
convinced that it's a conceptual and practical instrument which can and should be applied to many
other domains other than Medicine. I believe it's one possible key to change ourselves and to
change society for the better. There should be a Palliative Economy, a Palliative Education, a
Palliative Agriculture and so on.
I believe that palliative care and hospice are a typical examples of serendipity. It's very much more
than taking care of terminally ill people. Can you imagine an economy that took care of those who
are structurally out of the economic circuit? Or the education that talked not about seeking
knowledge, but about the human condition of ignorance? Hospice and palliative care allowed me to
regain confidence on human being's future.
Discovering hospice
The first time I heard the word ‘hospice’ was in 2004, at Loreto, in Italy, and I remember it very well!
It was at an elderly home. I worked there as an educator and I was interested in using photography
as a relationship building instrument. It was about a therapeutic-photography project. I was about to
gather the documentation of the initiative on a book called ‘The Face and the Voice of Time’.
There was a doctor there who followed the activities with much interest. One day he asked me if I
felt like collaborating in a hospice team. I didn't know what hospice meant, and when he explained it
to me, it made me jump twenty years back in time (and in space), bringing me back to Brazil.
Hospice! That was exactly the concept I was looking for when another doctor, talking about my
mother, proclaimed the sentence: "There is nothing else we can do for her."
How could it be possible, I had thought, that man managed to land on the moon but was not able
yet to give a decent answer to how to take care of a person affected by an incurable illness in
advanced phase?
I had a very good reason then to accept the challenge, even though I had no idea of how I could
help.
So I went back to university, first to take a Master's degree on Non-Verbal Communication, and
afterwards I started a new degree, this time in Psychology, which I'm about to conclude.
I became a hospice volunteer coordinator and had the opportunity to experience work in different
hospices, taking part in different teams.
Explaining hospice
Once I tried to explain to my mother-in-law what hospice was about. After a long explanation she
summarised the whole thing with these words: so hospice is a place where people go to die. I must
say that she was somehow right, if by dying one means "to live well the last period of one's life," if it
means writing the final chapter of one's biography or reading the closing page of a novel or drinking
the last glass of a unique bottle of wine savoured in silence in company of good old friends.
The struggle between immortality and human finitude
I observed that most of the difficulties faced by the professional members of the teams had their
deeper roots placed on the cultural level of our society.
There is a lot of confusion about the concept of death, life, to die, to live and to get born. Gilberto
Gil, a Brazilian musician wrote an interesting song about it.
There is a lot of struggle between the desire of immortality and the unwanted awareness of human
finitude. The prejudice towards everything that has anything to do with death and mortality and
consequently the fact of feeling uncomfortable when talking and thinking about it, makes it difficult
for individuals and for society to deal well with it.
Talking about living and dying well
So it seemed to me that the obstacle to overcome was to get people attracted by arguments related
to living well and dying well, and if possible to transform it into a pleasant experience.
The first hint was offered by World Hospice and Palliative Care Day. I found it just great that there
was day dedicated to the hospice movement that was celebrated all around the world.
In 2011, we took part in this world celebration by inviting one of the most important Italian
philosophers to come to Loreto and talk about the book he had just published. The title of Umberto
Curi work was ‘Away from Here’. The event was a success and it had a strong impact on the local hospice scenario.
The birth of the Festival
The following year, we organized a whole week of events around World Hospice and Palliative Care
Day. The limit of these projects was that the public was mainly composed of professional operators
and people who already knew about the treated arguments.
It was then that I suggested to organise a Festival in a particularly inspiring place, using many forms
of communication and expression, addressed not only to connoisseurs but also to a broader kind of
audience who might not have heard anything about hospice or palliative care. I suggested a title that
explained what the festival was about: ‘Knowing how to live... until the end’.
The first edition had as main theme ‘Breathing’, ‘Il Respiro’. We invited important Italian flute
teachers to offer master classes to young musicians, we called particular choirs to sing,
philosophers to share their reflections in lively lectures, art therapists to offer workshops,
professional hospice workers to tell their experiences, among other things. We organised a
photography contest with the theme ATMAN (the primordial breath) and much more. All these three
day activities took place in a beautiful Castle in a town called Tolentino. It was a great success!
The second edition had the title ‘Living to tell the tale’ and was about Narrative Medicine, literature,
cinema, biography, and autobiography.
This was also the first edition of a prize ceremony dedicated to the regional hospice movement. A
commission gave it to the first hospice opened in the Marche State.
Alpha – Omega: the seasons of life
Now it's the third edition of the festival and the theme is Alpha – Omega: the seasons of life. We
have invited people to talk about birth and childhood, adolescence, ageing, and the end of life at
any age. We'll give attention to eating well, massage, walking, etc, and the programme includes
natural cuisine workshops, long promenades, theatre, music, photography and photo-therapy.
The next step is for our festival to become International!
Find out more about the Festival del Saper Vivere FINO alla FINE online.
