It is a life dedicated to children with incurable illnesses that he lived Franca Benini, founder and director of Regional reference center for pediatric palliative care and pain therapy in the Veneto region and head of the pediatric hospice in Padua.
«I started working in neonatal intensive care research when there was no possibility of survival for these children», he explains, «then, in the 1980s the first important scientific discoveries were made which allowed the possibility of survival “in illness”. They are children who have multiple problems and illnesses who, for now, have no expectation of recovery. They can frequently worsen with the consequence of having to enter intensive care or risk dying. They are children who have complex needs that we often define only as clinical but which, in reality, impact many aspects of their lives: from the social to the organizational and psychological.”
Franca Benini, founder and director of the regional reference center for pediatric palliative care and pain therapy in the Veneto and head of the pediatric hospice in Padua.
The world of palliative care takes care of the body, mind and emotions of the child and his family. Palliative care begins at the time of diagnosis and continues throughout the patient’s life.
Palliative care not just for cancer patients
The reference center for palliative care and pain therapy in children in the Veneto region was established by resolution of the council in December 2003, it is the first in Italy in this area and every year it follows more than 400 patients.
«To respond to their needs it is important to be a team of healthcare workers», continues Benini, «because palliative care is not aimed at dying children. We deal with life. Our patients must be able to go to school, grow up and find their role in society. Let’s dispel a myth: pediatric palliative care is not only aimed at children with oncological pathologies. In fact, these patients make up less than 15% of those we follow. 85% of our patients have neurological, muscular diseases and all those cases of diseases that have no possibility of recovery.”
The Center directed by Dr. Benini takes care of children from before birth, in the case of a prenatal diagnosis of an incurable disease, up to over the age of eighteen. It also assists a significant number of young adults, between 18 and 23 years old, for whom work is underway on a transition path to adult services. The goal is to give all of them a good quality of life understood as a normal existence.
«Our society», underlines Binini, «must be aware of the fact that these children have many problems. We are usually prepared to deal with the clinical ones, the easier ones, less so those, for example, of reintegration into a society that struggles to give them a role because they have complex pathologies. Furthermore, their care must also include that of the entire family unit which reorganizes itself around the child to make him live as best as possible. Here it is it is important to build a network of healthcare professionals – doctors, nurses, psychologists, social workers, physiotherapists – who can respond at any time of the day to all the complex needs that emerge.”
Life in a pediatric hospice (Photo: Padua Hospital, information leaflet)
Each story is accompanied by bioethical choices that trigger central questions about life: why did this happen to me? What is beyond life? Questions that children often ask doctors.
«We don’t always have the answers», admits Benini, «palliative care forces us to a new way of seeing medicine that is not centralized in the hospital, but not even in the territory. It’s about putting together all the forces, healthcare and otherwise, to be able to manage these children in the best possible way, also from an emotional point of view.”
The ethical question is central
«Man has put in place a myriad of machines to make these children live but this availability of means does not oblige them to use them», he continues, «I always tell my students that they must know how to use everything that science makes available to us , but then they must move on to the next phase, the one that tries to understand when, for the patient, the available tools are useful and when they are not. The risk of recent years is that of not taking the patient’s suffering into account, placing a miraculous hope of life on the scales.».
Offer patients a good life this is the goal
Children ask for few things. They want to have their family close, not have pain and have a normal life with all the things that are typical for their age. Benini continues: «We must all make a big reflection on the use of machines, taking on the difficult and dramatic responsibility of understanding when it is appropriate to use them and when not. To operate in this field, a dialectical comparison between all the figures in the team is always necessary. The goal is to propose a therapy for the child, not for the family. No one is the master of life, especially that of others. We have chosen the profession of healthcare and we have an ethical obligation to work to offer our patients a good life. Difficult choices are forced upon us. Making everything that science offers us available to patients is easy, convenient and involves no responsibility. Parents are right to ask for everything. In their place I would ask the impossible for my children. But we, as doctors, have to deal with what we can give or not give».
Our culture does not accept the child’s illness
This is the importance of having a single specific network throughout the regional territory dedicated only to children and coordinated by the Reference Center directed by Dr. Benini. The group of healthcare professionals in the network evaluates the needs, takes care of them and tries to resolve them. But as the doctor explains: «it is a very difficult job because in our culture a child cannot get sick, cannot die. There is a dramatic social denial of the problem which slows down the evolution of the network project which is confronted with a medicine that is sometimes miraculous. Our society sees the sick child as a black swan. We do not expect that he will have a disease that he cannot cure. Children get sick, not all of them can recover but they have the right to health. This culture of denial leads society to not provide useful tools to face reality.”
In Italy there are only 19 specialized centers and seven regions have no response regarding the field of palliative care.
«You never get used to these stories», concludes Franca Benini, «each has its own peculiarity. Of course, you never forget your first patient. For me it was a watershed moment for my life choices. Then there were many other patients who, silently, showed me the right path to take. Families have taught me how to manage moments of inevitable pain. They are the ones who made me grow as a person and as a professional. Ours is a very difficult job. Sometimes I wonder why I chose it. Then I look back and realize I couldn’t change it for all the money in the world. It’s a job you do for others but ultimately you do it for yourself, because it makes you grow as a person. It screams at you the true values of life. We find ourselves constantly confronted with suffering. But, also, with the joy that families are able to express despite everything. They are the ones who bring me back every day to the true values of existence.”
Read also:
Palliative care: half of the doctors and two thirds of the nurses are missing
Life is change, this is how we face the fear of loss
The opening photo is taken from the information document of the service offered by the Padua Hospital