Law 38/10 and child-specific palliative care
On March 15th 2010, the Italian Parliament approved legislation establishing access to Palliative Care and Pain Management services within the National Healthcare System as a right for all citizens.
This Italian legislation, considered as groundbreaking in the European healthcare policy panorama, stipulated the organization of a dedicated system of regional pediatric palliative care and pain management networks that is entirely separate from those for adults and elderly people.
In fact, the aspects that distinguish palliative care for children from that of adults and older patients are manifold:
- A broad range of conditions different to those seen in adult patients: Although there is a broad overlap of competencies between adult and children’s palliative care, many different experiences and competencies are required for each.
- Care planning: the duration of care for children diagnosed with incurable illness is variable and often difficult to predict.
- A Limited availability of medicines specifically for children: medicines are often dispensed in formulations that are difficult to administer to small children. Many do not provide explicit labeling for pediatric use with relative indications for age, doses and side effects. In the absence of alternatives, medicines are often prescribed 'off-label' for children.
- Legal and ethical issues: the legal representatives are the child’s parents or guardians. The child’s rights, wishes and involvement in the decision making process may not be respected. There may be conflict between ethics, professional conduct and legislation. Clear and honest communication between the care team, family and patient is essential.
- The emotional involvement: when the patient is a child, there is a greater impact on family members and caregivers. Grief and bereavement is likely to be severe, prolonged and complicated.
- Developmental factors: children are in continuous physical, emotional and cognitive development; this affects every aspect of their care, from drug dosage, to communication methods, education and support.
The paediatric palliative care network
The goal of the network is to guarantee 24/7 access to specialized care as near as possible to the child's place of residence, ideally in the family home.
The network encompasses the paediatric palliative care team, social, and educational services, voluntary organizations, primary secondary and tertiary care providers and integrates with all the paediatric and non-paediatric networks in the local area.
The core elements of the PPC network are:
This model allows the optimum use of resources, skills, settings, tools and time. It also contributes to improving and levelling up service provision across the regions.
However, to work efficiently, it requires basic training in children’s palliative care delivery for all the healthcare professionals to allow them to interact appropriately and effectively with all the care providers that make up the network.