The first pediatric hospice in Europe is located in Padua and is directed by Dr. Franca Benini , Head of Service palliative care in children in Padua and consultant Ministry of Health. In an interview, Franca Benitez complained that "for a long time for the pediatric patient was excluded from palliative care, and still too often palliative interventions aimed at children are limited to individual experiences and isolated. Several reasons have led and will probably affect the persistence of this situation: cultural, emotional, educational, organizational and economic issues. In addition, there is an undeniable emotional difficulties in proposing and face the same problem: it is not easy to talk about incurability and death when the patient is a child, and often slips in situations of excess treatment or neglect.
On the other hand, there is certainly easier to deal with this problem. The skills necessary to propose effective solutions, realistic and applicable are complex and interdisciplinary. But the experiences underway in some Italian centers (very few unfortunately) confirm the possibility of taking care of children with incurable disease with competence and continuity, even at home, while respecting the quality of life and desires of the young patient and his family .
Fortunately, there are many leading figures in Italy who give skills to the cause of humanity and the most seriously ill young people.
We quote a friend of ours, Franca Fossati-Bellani , historical children's oncologist at the I NSTITUTE National Treatment and Research on Cancer (INT) of Milan and today new president Section of the Milan Provincial LILT (Italian League for the Fight Against Cancer) after the death of Professor Gianni Ravasi, on 24 January. already president of the Child Care Committee, Franca Fossati-Bellani is known as the 'angel' of children with cancer. For years, met every week the parents of young patients in his department to talk, brainstorm sui rapporti nuovi tra genitori e figli che una malattia grave sconvolge, sui rapporti tra il piccolo malato e i suoi amici…
"Io considero i genitori", spiega la dottoressa Fossati , "come parte integrante dell'équipe terapeutica e, per quanto è possibile, corresponsabili con i medici della gestione della malattia: ma quando il bambino è a casa, i genitori "sono" l'équipe terapeutica principale. Il nostro compito nei loro confronti è di fornire tutte le informazioni utili sull'andamento della malattia e sulle cure. In questa prospettiva le riunioni comuni sono importanti perché servono a conoscerci meglio e a stabilire un rapporto più stretto di collaborazione”.
In this spirit, today medicine works more closely with the non-profit organizations , indisputable strength for proper support, which is sanctioned active presence in the new Law on Palliative Care.
Association Onlus Bianca Garavaglia, collaborated since 1987 with the Department of Pediatric Oncology of the INT, said Franca Fossati-Bellani, "Join with others in the financing of the research laboratory related to the department, the implementation of psychosocial services in the service of hospitalized children and their families, providing scholarships study, medical equipment, social assistance. "
Among the "Angels of the sick children" - and fortunately there are many - one is struck by another dear friend, Moncilo Jancovic , The "doctor smile" as he called a child. Milanese, simple operational head of an outpatient pediatric hematology Ospedale San Gerardo di Monza and teacher contract in pediatrics at the University Milano-Bicocca , has worked for years to bring palliative care at home of his young patients.
addition to numerous scientific publications, Dr. Jancovic wrote books to testify and to inform his fellow citizens on this issue. The proceeds of his the Ibro "Andrea you look at the San Siro" serve, for example, to support his project that the new law should be facilitated. Moncilo Jancovic he favors the therapeutic alliance between the medical and voluntary associations of settore.
In un’intervista, dichiara “A partire dagli anni ‘80, l’alleanza terapeutica, cioè quella comunione di intenti che gli operatori sanitari da una parte e le famiglie e i volontari dall'altra portano avanti con un unico obiettivo ideale che è quello di poter guarire il maggior numero di bambini possibile, è diventata fondamentale. Oggi circa il 70-80 % dei bambini che si ammala di tumore può guarire, non per caso, ma per quello che è stato fatto. E guarire vuol dire lasciarsi alle spalle l'esperienza della malattia e avere una reintegrazione psicologica e sociale equivalente a un soggetto normale nell'ambito della nostra società, quindi una guarigione, secondo i criteri dell'OMS, completa.”
“I malati in generale e i bambini in particolare hanno bisogno di persone che trasmettano qualcosa di positivo. Una speranza sulla quale lavorare ogni giorno», ripete spesso Jancovic ed è in questa dinamica che si iscrive l’approccio terapeutica al giovanissimo paziente.
Quando partecipò ai convegni organizzati a Piacenza e a Novara dalla nostra Associazione , i n occasione della Giornata Nazionale contro il dolore inutile della persona inguaribile c ui tema quell’anno era “Il bambino sofferente e la sua famiglia” , dr. Jancovic told her assistance with his humanity and simplicity, explaining what was central to dialogue with sincerity with sick children and attention to provide the brothers and sisters involved, and they also often bound in the second floor in the family drama.
on Facebook was founded the group "Who loves Momcilo Jankovic" sign of the esteem and affection enjoyed by the Doctor of Smiles among many relatives and friends who have found him not only a doctor but a friend.
ART has often collaborated with dr. Jancovic that supports our work and believes in the work of PADI-words Discrete , a successful project that since 2000, offers support to young people in managing their emotions.
The Posters PADI - Words Discrete submitted to the National Congress of the Italian Society of Palliative Care Issues in 2005 - 2006 - 2007 - 2008 Our society is not prepared to accompany the death of a little child. The families, friends, to schools, religious institutions, the community often do not know ... what to do or what to say. The the mourning of the child or a child's disturbing because we do not know to handle it. And this is where the ART has the skills to intervene.
If, as says Dr. Marcello Orzalesi "in Italy there are over 11,000 children (0-17 years) with incurable diseases who need specialist palliative care (because of head) for periods sometimes Prolonged third suffering from cancer pathology and 2 / 3 by other pathologists, often rare and complex, "the law just passed us by then the tools necessary to successfully intervene to help the seriously ill children.
But the battle is far from being won and ended. Die today about 1100-1200 children, equal to 1 in 10,000. Where?
For the majority of wards. What I want the families and professionals is that it is making available all perfect assistance in the field of pediatric palliative care, not only in hospitals that already exists, but at home!
The home is the place where the child lives with his family, where his bedroom is his refuge, where he built his life, is a place of exchange, acceptance of their loved ones, friends, games, and where everyone has their references and the reflection of its identity.
Home care in pediatric palliative care el'hospice allow the child and his loved ones to maintain peace and dignity, warmth and love, quality of life with the certainty of receiving the same professional care that a hospital.
Marcello Orzalesi report the situation to date has been the reality of the majority of seriously ill children "1.6 million days in hospital per year and 580,000 days in hospital intensive care units. "The future, however, now appears more favorable to our plans for assistance in pediatric palliative care. In fact, if this is an issue, these costs of home care is an incentive to the rapid implementation of Law 1771 .
Orzalesi explains how "in any case the choice to manage the disease at home falls on families, health care costs, economic and organizational often unsustainable. In addition to decisive improvements in the quality of life of young patients with their care through a dedicated network, it also highlighted the likely savings to public health: the estimated cost is € 80/90 million per year, compared with current spending of 650 million for hospital management. "
L 'law enforcement depends attention of everyone. Must come together and collaborate more and more in this "Holy Alliance therapeutic" involved in protecting the rights and needs of our children and their families.
It 'important that the candidates currently running for the regional elections, to commit publicly to ensure that in any region where they will be called to work if they are elected, their first engagement in the health sector is to implement as quickly as possible to the Law 1771.
sufferers can not wait!
Amanda Castle
Founder ART
In the next post ...
'll tell you a wonderful theatrical experience created by a book written by Gianpietro Scalia, medical Piacenza, recently staged in Piacenza: "A very short story about a girl and a cat who wanted to live clinging to the Moon "
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