90% of children with severe diseases without access to palliative care

Quase 90% of the approximately 8,000 children and young people with advanced chronic disease do not have access to palliative care, according to the association of the sector, which asks the government to invest in this area to change reality.

“ Although we have more teams, more professionals with training, these teams remain very poor in what is the effective allocation of resources ", lamented pediatrician Candida Cancelinha, of the Pediatric Hospital – Local Health Unit of Coimbra.

In statements to Lusa regarding the World Day of Paediatric Palliative Care, which is now marked, the pediatrician acknowledged that this “is not a deserted area, but it is an area where the lack of answers remains large.”.

According to the Portuguese Association of Palliative Care (PACP), in Portugal, it is estimated that about 8,000 children and adolescents live with severe, progressive and/or incurable diseases, requiring support from palliative care teams.

Of these, about 90% remain without access, “in suffering that goes on without help”, says the APCP, which on Sunday promotes the initiative “Little steps, great walks”, in the Belém area, in Lisbon.

In the Letter of Bethlehem, a document that will be presented during the walk, promoters define five priorities to change the reality of palliative care.

The first is the guarantee of access to this care, regardless of where you live.

Candida Cancelinha, also vice president of APCP, recalls that “there are regions of the country very well provided with pediatric palliative care teams, but there are other areas where this is not yet a reality”, and gives as an example the whole interior range of Continental Portugal and the regions of Alentejo and Algarve.

The second priority defined in the Letter of Belém is that the specialized teams have trained professionals with effective time allocated to be able to provide these care and the third is home support.

“ It is perhaps the area where we continue to be more discovered when we compare ourselves with other countries, both in the European Union and in North America, where the home care network is very strong and very powerful in what is the prevention and reduction of the consumption of hospital resources,” Candida Cancelinha explained.

He also said that Portugal has never had so many professionals – doctors, nurses, social workers and psychologists – with training in pediatric palliative care and lamented: “Sometimes teams only have two hours a month for pediatric palliatives.”.

From this comes the fourth point of the Letter of Bethlehem: the need to ensure that families and children can choose where they want to be cared for and, when they do not want to be cared for in the hospital, have a set of answers, in conjunction with primary care and care in the community.

The last priority listed is the commitment: “We need a commitment, a national strategy that has identified leaders, that has goals and a timetable, own funding and evaluation of results,” Candida Cancelinha explained.

“ We are currently without any body that serves as an interlocutor between what palliative care professionals are, but especially patients and families and the Ministry of Health”, lamented.

APCP also considers that palliative care cannot continue to be understood as end-of-life care, a “reducing vision” of care that it considers “powerful and cross-sectional” throughout the disease’s trajectory.

“ Most of the work of pediatric palliative care teams is not to provide life care,” said Candida Cancelinha, adding: “90% of the work is to control difficult symptoms such as pain, shortness of breath, mobility problems, preparing the homes where these children live (...), families to deal with situations of diseases that may not be cured and schools, kindergartens and day care centers to be able to receive and care for them”.