PALLIATIVE MEDICINE IN CHILDREN AND ADOLESCENTS

Palliative care has been a “revolution” in today’s medicine, or rather a return to its origins: personal care for the suffering, healing, when possible, sometimes alleviating, always accompanying. Palliative care has also arrived for paediatric patients and in its holistic approach covers not only patients near death but also those who are in the process of dying. Palliative care has also arrived for paediatric patients and, in its comprehensive approach, it covers not only patients in the proximity of death but also those patients with potentially lethal situations, even from birth. This is presented in such a way that we could say that their very existence from the very beginning is worthy of palliative care (I give as an example some chromosomopathies or serious congenital defects).

Palliatives Without Borders (PSF) goes one step further in its book “Palliative Medicine in Children and Adolescents”, as it not only offers important contributions to improve care for children and their families in this situation but also considers the availability of palliative care throughout the world, especially in low-income countries. It focuses on the patient and their family, respecting their values and preferences for the development of a high quality, accessible and equitable care plan from the moment of diagnosis alongside other treatments. It contains 64 chapters grouped into 10 sections, ranging from symptom management to alleviating suffering in general, to co-operation in palliative care, to teamwork and bioethics and rights. A total of 114 authors from different countries and areas of knowledge have collaborated in its drafting. This book proposes several important challenges to be met in countries with limited and medium resources:

1. To place cancer as a priority concern in the health programmes of all countries in order to make access to cancer drugs cheaper and easier, and to implement standard protocols for the treatment of paediatric cancers.
2. Seek to provide universal insurance coverage to enable early detection and control of cancer, especially in poor or geographically isolated populations.
3. Help reduce premature deaths and improve survival of children and young people with effective treatment of infectious diseases, cancer, increased immunisation, control of malnutrition and other preventative measures.
4. Improve oncology and palliative education for health professionals.
5. Increase and promote cancer registries that guide better planning of health care work.
6. Encourage governments to strengthen their efforts to establish, strengthen and maintain cancer and palliative care centres. All major paediatric hospitals should have interdisciplinary palliative care teams.
7. Promote twinning between onco-haematological institutions in developed countries with limited resources, as there are several successful examples. They are a practical form of solidarity that helps to change the world. This book should not be missing in paediatric clinics or in the libraries of doctors, nurses and other professionals involved in the care of children and adolescents.

The book Medicina Paliativa en niños y adolescentes is available from info@paliativossinfronteras.org   It has been edited in Spanish and updated in French and Portuguese. In this last  language, specific topics from Brazil and Portugal have been added, making it a work that responds to the great need for palliative care in the world, particularly in the 65% of countries that do not have it.