2023-11-07 09:33:25
by Anna Fregonara
Quality of life, needs and dignity are the key words adopted by these centers where children live with their families. In our country, there are only 8 hospices. By 2025 all regions will have to have one
To date, it is estimated that in Italy 35 thousand children need palliative care provided by teams that deal exclusively with this type of assistance. However, care in dedicated centers only occurs for 18% of them. As happened to Elisa (fictitious name), a 10-year-old girl suffering from a brain tumor. One day she makes a wish: to eat a pudding. A banal request, but one that shocks those who look after her, family members and healthcare workers, because making Elisa swallow could lead to the risk of serious complications. Her dysphagist, a speech therapist with expertise in swallowing skills, understands the need and decides that it can be safely tried. She offers Elisa 2-3 teaspoons of pudding and “feels” how happy the little girl is. Elisa passed away 24 hours later, but in her heart she carried the memory of her favorite dessert.
Three key words
In the collective imagination, hospice rhymes with end of life, but this is not the case. There are three key words that identify centers like ours: quality of life, needs, dignity. 90% of the families who have been with us have returned home thanks to the multidisciplinary work of the specialists. The limited vision of what hospices are depends on the fact that they are little known despite there being a law, 38/2010, which establishes the right for every person to access palliative care and pain therapy explains Michele Salata, head of the Passoscuro Pediatric Palliative Care Center of the Bambino Ges hospital in Rome, the largest pediatric facility in Italy. Born in March 2022, in less than two years it has welcomed over 200 children and young people, with serious incurable illnesses with high care complexity, and their families.
The importance of memory
The choice to offer the pudding to Elisa reflects precisely the three key words that characterize us, continues Salata. The request for intervention at the end of life of a dysphagist may appear inappropriate because she is a figure who deals with rehabilitation towards a program of continuous improvement. This was certainly not the case with Elisa. to easily understand how that intervention had an immeasurable value, not only for the little girl. That dessert will also serve as a support at the beginning of the parents’ mourning process because it will be a memory that will represent the foundations on which mum, dad and family will rest their feet to start again in their next life.
You can also study
In addition to oncology patients, pediatric hospices also accommodate those patients suffering from serious neuromuscular pathologies, rare diseases with chronic ventilatory failure or intestinal failure dependent on parenteral nutrition. Unlike a traditional hospital, where the child is hospitalized with at most one parent, here the little one lives with his entire family in mini residences, for now there are 20 but soon there will be 30 thanks to donations that have allowed the renovation, he specifies the expert.
Since September of this year we have also been a school complex so the teachers come to teach both the baby patients and their siblings. The idea of continuing to study may seem strange given that we are talking about people whose life perspective is medium or short term. But every life has the right to be lived fully even in its everyday life.
How do they work
Having completed the journey to the hospital where the doctors formulate the diagnosis, the children come to us. We have no illusions. We help families bring themselves back to reality. Having made ourselves aware that there are no different perspectives at the moment, as research is not yet capable of changing the historical outcome of a specific disease, we try to lead the entire family unit towards a plan that allows them to live the greatest possible moments of joy, adds Salata.
We teach parents everything they need to do when they return home. Once they have been educated on the risks and care management of the child, we encourage them to go with their child first to the garden surrounding the structure and then to the seafront which is 150 meters away. This not only allows us to make a life that is not normal as normal as possible, but also to prevent the risk of ghettoisation of families. In fact, it may happen that, out of fear or cultural implications, they prefer to stay indoors. Furthermore, they can periodically come to the hospice and take advantage of the so-called respite hospitalization: it has the aim of alleviating, for about a week, the caregiving effort that families face within the home.
Manage pain
When you reach a point where there is nothing left to do in terms of healing, there is so much else to deal with: pain management, psychological aspects and relational aspects with family and friends who come. to find children, the spiritual part adds the expert. The latter is a complicated aspect that coincides with moments in which young patients ask questions that are not easy to answer. The complexity of our profession leads us to work side by side with the Clinical Ethics Committee, a very helpful tool when it is not easy to decide whether the intervention is really in the best possible interest of the child. It includes bioethicists, philosophers, moralists, lawyers, priests, doctors.
The structures in Italy
The pediatric hospice of Padua was the first to open, in 2008: led by Professor Franca Benini who taught in Italy. Then came those from Genoa, Milan, Turin, Naples, Lauria (Potenza), Catania, Rome. Those in Emilia Romagna and Tuscany will be inaugurated in 2024 and the structures in Friuli Venezia Giulia, Marche, Puglia, the autonomous province of Trento and that of Bolzano are planned. By 2025 all regions must have hospices for children and adults included in regional networks for palliative care and pain therapy. They are recognized as LEA, an acronym that indicates the Essential Levels of Assistance: the benefits and services are, therefore, covered by the National Health Service which provides them to all citizens free of charge concludes Salata.
In this way, the connection between hospitals and local structures (ASL and family paediatricians) is ensured. This coordination between the various assistance actors allows families, once they return home, not to feel alone in caring for their family member – often it is loneliness that causes them to lose hope – and helps to reduce improper access to emergency rooms in presence of a worrying symptom that the parent is unable to manage.
November 7, 2023 (changed November 7, 2023 | 08:33)
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