Around 90% of children and adolescents in Portugal who need paediatric palliative care are not receiving adequate support, according to the Portuguese Association for Palliative Care (APCP).
The association estimates that approximately 8,000 young patients are affected by the gap, raising concerns about prolonged suffering among children living with severe, chronic or incurable conditions.
The problem is not simply a lack of trained healthcare professionals. Instead, specialists say the country struggles to translate existing expertise into accessible, consistent services for children and their families.
Healthcare system struggles to turn expertise into care
Cândida Cancelina, a paediatrician at Coimbra Pediatric Hospital and vice-president of the APCP, says the number of professionals trained in paediatric palliative care has increased.
However, the resources allocated to specialist teams have not kept pace with that progress. In some cases, healthcare professionals reportedly spend as little as two hours a month on paediatric palliative care, limiting the support available to patients who require complex, ongoing assistance.
The disparity highlights a wider problem within the healthcare system: having qualified specialists does not necessarily mean families can access their services when they need them.
Children in rural areas face greater barriers
Access to paediatric palliative care also varies significantly depending on where families live.
While some parts of Portugal have services available, children in the country’s interior regions, as well as Alentejo and the Algarve, face particularly serious barriers to obtaining support.
This geographical divide can leave families struggling to secure specialist assistance, even when their children have substantial medical and psychological needs.
The APCP argues that access to care should not depend on a family’s postcode and is calling for a more coordinated national approach to ensure services reach underserved communities.
Lack of home-based services places pressure on families
Portugal also has significant gaps in home-based paediatric palliative care, an area experts say could improve the quality of life for children and reduce unnecessary dependence on hospitals.
Cancelina noted that several other European Union countries and North American healthcare systems have developed stronger home-care networks, allowing children to receive support in familiar surroundings.
Without adequate services at home, families may face additional practical and emotional burdens while trying to manage their children’s complex conditions.
Expanding home support would help healthcare teams coordinate care beyond hospital settings and give families greater flexibility in deciding where treatment and assistance should take place.
Belém Charter sets out five priorities for reform
In response to the shortcomings, the APCP has presented the Belém Charter, which outlines five priorities for improving paediatric palliative care across Portugal.
The proposals call for equal access to services regardless of where a child lives, alongside dedicated working time for healthcare professionals assigned to specialist teams.
The charter also advocates the development of home-care services and better coordination between primary healthcare providers and community services. This would allow families to choose care settings beyond hospitals whenever appropriate.
Its fifth priority is a comprehensive national strategy supported by clear deadlines, funding commitments, accountability arrangements and measurable outcomes.
Together, the proposals aim to move the country from fragmented provision towards a more accessible and coordinated system.
Palliative care involves more than end-of-life support
Healthcare experts are also seeking to change the perception that palliative care is exclusively intended for people approaching the end of their lives.
According to Cancelina, approximately 90% of the work undertaken by paediatric palliative care teams involves managing complex symptoms and improving daily life rather than focusing solely on the final stages of illness.
That work can include controlling pain, addressing breathing difficulties, supporting mobility and helping families adapt their homes to meet a child’s needs.
Specialists may also work with schools and daycare facilities to ensure children can participate in everyday activities in environments suited to their medical circumstances.
Psychological support is another important component, particularly for families dealing with an incurable diagnosis and the uncertainty that comes with long-term care.
Families need a clearer route to specialist support
Despite the importance of these services, Portugal lacks a dedicated intermediary body to connect children and their families effectively with the Ministry of Health, according to the APCP’s concerns.
The absence of such a structure can make it more difficult to coordinate services, communicate families’ needs and ensure that proposed improvements translate into practical assistance.
A national framework with clear responsibilities and monitoring could help address these weaknesses while making it easier to identify where services are falling short.
Portugal faces growing pressure to close the care gap
The figures highlighted by the APCP point to a substantial challenge for Portugal’s healthcare system, with thousands of children potentially missing out on specialist support.
Addressing the shortfall will require more than increasing the number of trained professionals. It will also involve providing dedicated resources, expanding home-based services, improving regional access and coordinating support across healthcare and community settings.
The Belém Charter offers a proposed framework for reform, but its impact will depend on whether the priorities are backed by funding, deadlines and effective implementation.
For affected families, the central issue remains whether children with serious chronic conditions can receive timely, appropriate care regardless of where they live.
