What is pediatric palliative care?: “In Italy, the fact that children can die is unacceptable”.

26 June 2024

In Italy, only 15% of children who need palliative care can access services. The problem is relatable to a social context in which the death of children and the need for specific care is difficult to acknowledge.

Interview with Dr. Franca Benini Scientific Director of the Maruzza Foundation and Professor of the Department of Women’s and Children’s Health at the University of Padua

Italy has a massive problem with paediatric palliative care. In our country only 15-18% of children who have received a diagnosis of incurable illness can access care services that could prolong their survival and improve their quality of life and that of their entire family.

We asked Dr Franca Benini, Scientific Director of the Maruzza Foundation and Professor at the Department of Women’s and Children’s Health at the University of Padua, to explain why, after 14 years since the approval, in 2010, of Law No. 38, which recognises the needs of paediatric patients with incurable illness and stipulates a specific response to their needs, 7 regions still do not have services or dedicated paediatric palliative care staff.

There is a huge organizational problem, healthcare facilities are gradually equipping themselves but they are still not ready, all of this is linked to a problematic social context: people prefer not to have to think about dying children and therefore the problem is overlooked.

What is pain management?

Paediatric pain management is aimed at relieving all pain in children. Pain in children often goes untreated, primarily, as when they cry, it is considered normal behaviour, there is also a fear that administering drugs for pain relief to children will cause dangerous side effects. And yet the prevalence of pain is very high; 80% of paediatric hospital admissions are children reporting pain, 60% of child admissions to A&E and 40 to 50% of paediatric outpatient visits to the family doctor and hospital are for pain. Therefore, despite pain being a prevalent symptom, it is given scarce attention and is, as a consequence, constantly undertreated. Pain should be treated both by the family doctor and by a team comprised of doctors, psychologists and physiotherapists in a reference centre for paediatric palliative care.

 What is paediatric palliative care?

Paediatric Palliative care is holistic care for children who have a serious illness that is without a cure and who present many complex symptoms; difficulty eating, breathing, communicating, moving, pain, convulsions and suffer from a condition that is constantly at risk of worsening or even causing death. However, we must not think that paediatric palliative care is only for children who are imminently dying, its delivery begins much sooner. Also, an important characteristic of paediatric palliative care is that it is not only aimed at the child patient but the whole family unit. In reality, paediatric palliative care is delivered in the family home in 99% of cases. The hospital or paediatric hospice serves as a short term solution aimed at better care management in the child’s home, the aim of paediatric palliative care is to improve quality of life by ensuring that, despite the illness, they can go to school and have a normal family life.

In what sense is the family also taken care of?

It is unfeasible that a child with incurable illness receives continuous care in a hospital setting, so it is usually a parent who takes on the child’s care. More specifically, in 90% of cases, it is the child’s mother who gives up her job and becomes the main carer. It is evident that in the case of a chronic illness, in addition to the clinical aspects managed by the family members, they must also cope with the psychological, spiritual and bioethical issues linked to their child’s illness. Imagine what it means to the mother, the father and siblings to care for a child who will never get better. The family members who, with the support of doctors, nurses and professional carers, take on the responsibility of care provision frequently experience severe psychological and social problems; the family unit often breaks down, they lack financial security and can lose hope in the future. The family members must address many difficult questions and often find themselves having to take important decisions on their own, as, for example, whether to hook the child up to mechanical devices, this is why we speak of a ‘shared care’ with the patient and family.

Why do so few children in Italy have access to palliative care?

Paediatric palliative care is a relatively new discipline, until recently, children with these types of needs did not survive. Due to enhanced technology, many of these children now survive, frequently with the support of mechanical devices, and this has given rise to a new type of patient. The main barriers to care provision are a lack of specialised training and poor organization that is impacted by a social context of denial of childhood illness, pain and death. Consequently, our society refuses to address the problem.

 In what sense is there a social denial?

Whenever dying children are mentioned or we see images of children with serious illness attached to mechanical devices, the tendency is to want to avoid or ignore them, especially if the initial emotional impact is pronounced. It is difficult to accept that a child may not get better or even die, there is a real social taboo surrounding this topic, both at the level of those who provide information and at the level of those who receive it, no one wants to hear about dying children. Talking about death is always problematic, but when it regards children, the word “death” or “died” is frequently replaced with alternative phrases like “passed away” or “didn’t make it”. We often hear parents comment, “Until it happened to my family, I never thought this type of problems existed”.

What did the introduction of law 38 in 2010 change?

The legislation focused on the question and officially acknowledged that children are different to adults  and that they have very different needs and characteristics compared to those of adult patients. It also highlighted the specific needs of children and the urgency to organize a totally new way of addressing care provision for children with serious illness that incorporated the family unit. In these 14 years, the legislation has stimulated the publication of numerous documents that confirm the need to differentiate needs and responses.

What emerged from the PalliPed study regarding palliative care for children at a national level that you lead ?

A dramatic organizational heterogeneity between the various regions emerged, demonstrating striking inequality in healthcare provision. Regarding paediatric palliative care services, while the northeast region is well served, southern Italy has nothing. In the 14 years since the legislation was introduced, 7 regions have not created a paediatric palliative care network and the situation, from an organizational point of view, is devastating. The number of healthcare staff working in the existing networks is very limited, less than 50 doctors. The rest of the staff has a minimal presence quota. The accessibility to services varies from 15 to 18% of children with palliative care needs. It is preposterous; just imagine if A&E capacity covered only 15% of the total number of patients. We need better service organization, more staff, and more specific training.

 Is there a difference between those children who are able to access dedicated palliative care services and those who are not?

Yes, we see it in everyday practice and reported in scientific studies. Children who have access to services and timely emergency care have a better quality of life and survival rates than those who do not. Furthermore, families that have access to effective paediatric palliative care are less impacted by the death of a child.
Another major barrier to service provision is that of costs, some regions do not want to embark on the development of paediatric palliative care networks due to the initial financial investment. However,  if children that are needlessly hospitalised for months on end could be cared for in the family home with correct resource management,the future savings in healthcare costs would be significant.

This interview was published in the online magazine Fanpage.it and translated into English