For the first time in Bahia and in the North and Northeast regions, the theme of death, care and promotion of quality of life for newborns and babies in the last stages of an incurable disease was discussed at the 8st Bahia Symposium on Perinatal and Pediatric Palliative Care held in August 9, 10 and XNUMX, at Campus Cabula da Escola Bahiana de Medicina e Saúde Pública. The event brought together representatives of regional councils, specialists in neonatology, health professionals and students from various institutions.
The opening table was composed by the president of the Bahia Society of Pediatrics, Dr. Dolores Fernandez; by the representative of the Regional Council of Speech-Language Pathology, the speech-language pathologist Ana Terra; by the representative of the Secretary of Health of the State of Bahia, Dr. Wilma Ribeiro and by Professor Dr. Adson França, who considered the symposium extremely relevant, for being “the construction of a culture of academic and scientific debates with multidisciplinary professionals”. For Adson França, as there are several areas specialized in birth and in the care of pregnant women, “we also need an equivalence in the sphere of dying. It does not necessarily need to have a specialization for this, but the opportunity to participate in a symposium like this provides growth and maturity to the professionals”.
The symposium coordinator, Professor Dr. Franklin Santana, explains that the objective of the initiative was to demystify the process of death in society. “People who are dying, whether adults or children, need care that is often not offered in Brazil. The topic is taboo and needs to be discussed in public places”, highlights the coordinator.
Franklin Santana clarifies that palliative care is an approach that improves the quality of life of both people who are facing illnesses and the families of these patients. Recently, the Bahiana introduced Palliative Medicine as a subject of the undergraduate course in Medicine, integrating the scenario of the few universities that work with the theme within the curriculum. Therefore, says Franklin Santana, “it is necessary to bring up this subject, especially when it comes to the death and dying of children. It is necessary to train health professionals to serve this public”.
On the first day of programming, in addition to the short courses, the neonatologist and palliative physician, Lília Embiruçu, mediated the opening table, in Auditorium I of Pavilion III. As for the need to discuss the subject, the doctor comments that “it was noticed how badly care is taken for babies who are dying. Therefore, studies in the pediatric palliative area needed to be initiated. So much so that the course on palliative care for children and newborns was implemented in Brazil, in São Paulo, only last year, at the Hospital Sírio Libanês, which I am attending”. Lília Embiruçu concludes that the event helped to understand the finitude of life. “May we be able to deal with the physical, psychological, social and spiritual pain of these families and children”, he declares.
Pediatrician Leila Gonçalves, from Hospital Aristides Maltez, gave the lecture “The Patient as a Master of Care”. On that occasion, the public learned about the story of the patient Bruno Andrade Santana, through the testimony of his sister, Bianca Andrade. The patient, when receiving palliative care since childhood, increased his quality of life, as he underwent the treatment close to his family. This factor provided a redefinition of the delicate moment, both for him and for family members. Then, Professor Franklin Santana was responsible for the Magna Conference “Why does Tânatos choose children? Spirituality and Meaning Building”, which addressed issues related to the death of children and their acceptance in society according to dogmas and scientific research. The opening started at 19pm and ended at 21pm. An opening cocktail was also served.
The second day of the event featured several lectures from 8am to 18pm. Renowned speakers, such as Dr. Tereza Paim (SESAB-BA), prof. Dr. Adson France (BA), prof. ª Dr. Lisandra Stein (USP–SP), prof. ª Dr. Elisa Perina (UNICAMP), Dr. Jussara Sousa (Caism-SP), Dr. Lília Embiruçu (SESAB-BA), Dr. Magnólia Carvalho (HGRS-BA), Dr. Silmara Maia (HGRS- BA), to prof. ª Dr. Lara Torreão (UFBA) and prof. ª Dr. Maria Elisa Villas Boas (MP-BA), in addition to Cultural Moments with the theme “Aesthetics, Life and Death”, composed the schedule of activities.
The third day of the Symposium was marked by the launch of the Lato Sensu Post-Graduate Course in Perinatal and Pediatric Palliative Care at Escola Bahiana de Medicina e Saúde Pública, whose enrollment will open in the first half of 2020, and also had explanations from the speakers Prof. Dr. Elisa Pereira (UNICAMP-SP), Social Worker Michelle Venâncio (BA), Dr. Leila Gonçalves (HAM-BA), prof. . Dr. Gustavo Tânus (SP), Prof. Dr. Ana Paula Santos (SP) and Dr. Karoline Carvalho (Hospital Português – BA). The schedule, on that day, was carried out from 8:17 am to XNUMX:XNUMX pm.
Danila Rufino, a 10th semester student of the Nursing course at Faculdade Maurício de Nassau, reveals that the interest in having participated in the symposium arose due to the theme of her Final Paper, which was the same as the event. “This period of experiences with professionals who already work with the subject was very important for my training”, adds the student.
Occupational therapist Lívia Trindade works at Hospital Geral Roberto Santos and understands that perinatal and pediatric palliative care is a very relevant approach for the current health scenario. “It is essential to offer a good quality of life and provide greater dignity to pediatric patients who are facing a difficult situation. We work a lot with prevention, so it's only logical that we also work with the relief of suffering”, explains the professional.
For the event coordinator, the symposium opened the way for debate on a topic that is not culturally addressed, as it is an opposite projection to what is expected in relation to the child. Thus, palliative care, in this context, needs to be started already in pregnancy, when the mother discovers that the developing fetus has a malformation, with little chance of surviving until or after birth. Thus, from the mother's psychological and social preparation, from pregnancy, the child or unborn child can have their needs met with dignity. About the approach to action, Professor Dr. explains: “We brought the specialist from São Paulo, Dr. Lília Embiruçu, who helped us think about how professionals should act in these cases and we dealt with the bioethical and legal issues involved in the process of dying from child, emphasizing the importance of joint work by professionals from various areas of health, in order to identify and minimize pain and suffering”.
Professor Franklin Santana ends with the certainty that the event was a watershed and knowledge multiplier for the north-northeast, mainly for being the first symposium focused on perinatal and pediatric palliative care in the aforementioned regions: “There are several initiatives when it is palliative care for adults, but there is still a gap in relation to children, as we do not have any service in Bahia aimed at this audience. Therefore, we embrace the commitment to bring this issue up, since around 3 children die each year in the state. These are patients who face great suffering, due to the lack of specific care that would help them, also giving support to family members. The idea was to sensitize professionals and students so that, from there, a welcoming culture is created”.