3 April 2024
/
This year the Maruzza Foundation is celebrating 25 years of activity. For this special occasion, we decided to catch-up with people who had accompanied us in some of the most important stages of our journey over the years. The interviews that will follow, from now until the end of the year, are the recollections of those who embraced and committed to our mission, from both a legal and cultural point of view, to support us in the achievement of important goals aimed at guaranteeing the right to paediatric palliative care for all children living with incurable illness.
The first interview is dedicated to the Hon. Livia Turco, an Italian MP for several legislations, a former Minister for Social Solidarity and Minister of Health. This conversation retraces the origins of law 38/2010 of which she was the protagonist and, thanks to which, thousands of children currently have access to PPC. Thanks to the commitment of the Minister, the paediatric specificity was included in the decree, the first important and essential step in the development of paediatric palliative care networks throughout the Italian regions.
Q.Hon Livia Turco, in 2007, when you were the Italian Health Minister, the Maruzza Foundation approached you to bring to your attention the plight of children with incurable and their families in Italy, what do remember about your first encounter with Paediatric Palliative Care and the Maruzza Foundation? What element, in particular, left an impression on you?
A. It is a memory preserved deep in my heart, one of those that remind us of the meaning of duty, my first meeting with the President of the Maruzza Foundation, Silvia Lefebvre, who now, after many years, I simply call Silvia. We were in the conference room overlooking the river Tiber on a particularly sunny day when Silvia Lefebvre, and her colleagues, with a touch of intense humanity transported me to a dimension of life with which I was not directly acquainted: children with incurable illness.
In 2007, there were 12,000 neonates, children or adolescents affected by serious or incurable illness in Italy. Less than 10% had access to palliative care services. They were often hospitalised on wards for acutely ill adults, separated from their loved ones and detached from their familiar environment. Alternatively, they were cared for at home by their family members with hardly any external support. Every year, 1200 children died. In Italy, child-specific ‘end of life’ care was limited to few realities: less than 3-4 centres in the whole country. For this reason we decided to address the problem head on and, together, we drafted a Memorandum of Understanding between the Ministry of Health and the Maruzza Foundation with the following objectives: to promote a Paediatric Palliative Care network for children with incurable illness in each of the Italian regions, paying particular attention to the provision of home-care; the creation of children’s hospices; specialised training initiatives for healthcare professionals; the promotion of scientific research and the creation of a National Palliative Care Observatory.
A protocol was signed on the 25th of September 2007, following a debate in the State-Regions Conference where, on the 27th of June 2007, an agreement, aimed at broadening and guaranteeing palliative care provision for children, had been signed. For those children who live for long periods of time knowing that they will never grow old, permitting them to be cared for at home, in their own room, surrounded by their toys and games. It takes very little to make a person’s life happier and more dignified. Yet, sometimes, it is these little-big things, which could be so easy to achieve, are not easy to accomplish because in political choices the right vision is needed, an open and sensitive heart. The encounter with Silvia Lefebvre was an intensely civilised; I was moved by her profound compassion, her emotional and social involvement in a reality of suffering and human experience that I had rarely contemplated. For this reason, my sense of gratitude towards her has prevailed for many years. There are, in fact, situations that transcend politics, institutions, which go beyond protocols and policies and which are specifically concerned with the meaning of life and the value of human dignity.
The Memorandum of Understanding on Paediatric Palliative Care signed by the Ministry of Health with the Maruzza Foundation was for me, first and foremost, a life lesson, a greater vision of the value of personal dignity and better awareness of the uniqueness of children, to which I had greatly invested myself as the Minister of Social Solidarity and therefore eager to follow-up with my commitment to safeguarding the rights of children and adolescents in the healthcare sector. This Protocol was also the first step to promoting personal dignity at every stage of life. Moreover, it prompted me to create the ‘Commission For The Safeguarding of Dignity And Quality Of Life Across Its Phases’ which implemented concrete missions such as the allocation of resources for the provision of electronic communicators for patients with motor neurons disease, the simplification of prescriptions for painkillers, quality standards for hospice care and the development of a network of centres for the treatment of chronic pain.
Q.What were the most delicate phases and the reasons for these critical issues during the inclusion of the paediatric specificity in the law 38 of the 15th of March 2010?
A. The drafting and approval of the law (38/2010) was, and remains today, an example of outstanding politics. For the dialogue, the mutual listening, the attention paid to medical, social and volunteering expertise in order to address a subject considered critical; the promotion of dignity at the end of life, the promotion of equity of dignity at the end of life. The Paediatric aspect of Palliative Care played a very important role in the debate. It was a new, little-known topic but there was convergence and great humanity on the part of all the politicians in addressing this issue appropriately. I was, however, quite disappointed when an amendment to Art. 1 of the Law that I had proposed, with the intention of stipulating the development of child-specific palliative care as one of the aims and priorities of the reform, was not accepted. Priorities that were included in Art. 3 in the Fundamental Care Standards, in Art. 4, stipulating the realization of Palliative Care awareness campaigns and Art. 5, specifying the development of a national Paediatric Palliative Care network.
I believe that can be said that the law N.38, passed on the 15th March 2010, adequately addresses the development of Palliative Care, Paediatric Palliative Care and the treatment of chronic pain. It is an important, progressive law that must be applied in full.
A lot as been accomplished but there is still much to been done for paediatric palliative care services in Italy. Despite the significant achievements, there is still a critical situation, especially regarding the absence of care networks and a great disparity of service provision between regions and at a local level, which hinders equity of access to care for all children.
Q.In your opinion, what actions should be undertaken to correctly and effectively develop care networks and guarantee care for all the child patients and their family?
A.I believe that a robust political will is necessary and that the topic should be considered a priority of national and regional political decision makers.
A relentless cultural battle is essential, to encourage citizens to monitor and to petition the development of paediatric palliative care networks in a homogenous manner across the Italian Regions.
I believe firmly in the role of active citizenship: the promotion of a campaign to denounce delays, to raise awareness, to urge public decision-makers to be proud of applying important, humanitarian legislation which helps each and every one of us to be constructive, to foster compassion in people and build a caring society.