An Argentine perspective on palliative care
As part of our wider conversation to inform the development of our new strategy we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. Today we hear from Rut Kiman, Consultant in Children's Palliative Care in Buenos Ares, Argentina
More than two decades ago I was searching for some information to develop my first steps in Children's Palliative Care. Few learning experiences for children were available. There weren´t many books or articles, but happily I found the Association of Children with Life- threatening and Life- limiting conditions and their families (ACT). Many good ideas came from those pages, helping to guide my plans and interventions, providing an approach to different diseases and conditions needing palliative care; how to use medications for symptom control; or how to manage difficult communication: at last I had found a framework.
This organization, which later became Together for Short Lives when it merged with Children’s Hospices UK, works in partnership with children and young adults, their families and professional teams, generating useful materials to guide palliative care practices; describing difficult conditions; sharing recommendations for decision making and facilitating contacts with local organizations. All of these features make Together for Short Lives a unique NGO in the UK.
In other countries and regions progress in palliative care is not happening fast enough because of the lack of support from governments and stakeholders.
As a pediatrician working in this field in Buenos Aires, Argentina, I´ve been advocating for palliative care in Latin America. Our region has an area of approximately 21,069,500 km². In 2016, its population was estimated at more than 600 million. Spanish is spoken as the first language by about 60%, Portuguese is spoken by about 34% and about 6% speak other languages such as Quechua, Mayan Languages, Guaraní, Aymara, Nahuatl, English, French, Dutch and Italian.
It has the second highest rate of adolescent pregnancies in the world. Nearly 20 percent of live births in the region are to adolescent mothers. Poverty continues to be one main challenge. All of this has a great impact on health conditions. According to the Economic Commission for Latin America and the Caribbean (ECLAC) Latin America is the most unequal region in the world. More than half of the poor are children and adolescents and more than half of the children and adolescents are poor. Changes aimed at reducing mortality from nutritional and infectious diseases makes chronic-complex conditions more visible
Children’s palliative care services, although established in some Latin American countries (Argentina, Brasil, Chile, Costa Rica, Guatemala, Mexico, Republica Dominicana, Uruguay) it is still a relatively new development. The overall picture is still very patchy. Most populations have limited access to pain-relieving medications. Challenges to the development of children’s palliative care include a lack of understanding about what it means and what it can offer; a lack of policies; legal and regulatory barriers which prevent availability and access to essential medicines and lack of training for health professionals. It is understandable that as a consequence there is inequitable access.
Common problems faced are often a lack of scientific knowledge and quality information in other languages than English, resulting in a delay in providing useful interventions. This often results in heavy social and financial burdens on patients and families.
Together for Short Lives resources could be available in other languages, including Spanish, to enable the collation and dissemination of information and, sharing expertise between children’s palliative care practitioners in different environments. This could greatly enrich practices in both directions: for those located in countries with a high level of integration into health systems like the UK, as well for those with less resources developing PC with great effort and imagination. And I believe that Together for Short Lives could increase an overseas advocacy capacity within regional and national associations, helping to make the voices of the children too often ignored, heard.
What do you think?
Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing firstname.lastname@example.org.
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