Fabiana Bolela de Souza, a Professor in Nursing at Ribeirão Preto College of Nursing, University of Sao Paulo, Brazil, talks to Professor Sheila Payne from the International Observatory on End of Life Care, Lancaster University, UK, about her perspectives and plans for palliative care nursing in Brazil.
Fabiana attended the EAPC World Congress in Berlin in May 2019, then spent three weeks at the International Observatory on End of Life Care learning more about palliative care in the UK.
Prof Sheila Payne:What’s your current role and job?
Prof Fabiana Bolela de Souza: I am a nurse and teacher on a nursing undergraduate course at Ribeirão Preto College of Nursing, where I have worked since 2014.
SP: What made you interested in palliative care?
FBS: I have been interested in palliative care since I worked in an intensive care unit where I took care of patients who could not be cured. At that time, there was not much talk about palliative care in Brazil. However, I observed that the clinical team were already discussing with the family about not using measures to prolong the life and suffering of patients. I started to recognise therapeutic futility and that different measures could improve the quality of life of patients that are part of palliative care. Later, I worked in a hospital that had specific beds for patients with palliative care needs, which increased my passion for palliative care.
SP: Where do most nurses work when they provide palliative care?
FBS: In Brazil, most nurses in palliative care work in hospitals, as there are very few hospices or home care teams.
SP: Tell me a story about a palliative care patient that you can remember well.
FBS: M.F.S. was always a cheerful, fun-loving woman – full of life, as she liked to say. She was 45 years old, married and had two teenage children. Three years previously, she had complained of pain in the right breast. On account of her work, where she was very busy, it took her a long time to schedule a medical appointment, going only when the pain got much worse. Even after performing a mammogram, it took another six months to schedule the follow-up appointment because of her fear of diagnosis. When she finally went to the doctor’s office at the insistence of her husband and her children, she was told that she had breast cancer. Other investigations confirmed the diagnosis and identified metastases. She was devastated and thought that she was dying and that she had little time to live. Throughout the treatment, she stopped being that cheerful woman and became pessimistic, saying that nothing would work for her and that all treatments would be ineffective. At an outpatient visit, her husband and children talked to the nurse, telling them what their mother was like before the diagnosis and they feared she had depression. The nurse worked closely with the patient and the family and, after a meeting with the multidisciplinary team, they were able to draw up a plan of care in which one of the priorities was to try to change her mood, her beliefs, and help to promote her confidence and empower her.
After a few months, it was possible to observe some improvement, even though she was in a palliative care situation, and she wished to live intensely each day, with the joy she always had. She would often say that there were bad days, but that while she is alive, she wants to try to do things like, taking morning walks with her husband, as she always did before getting sick, and playing with her children, eat the things she likes, and that when she can no longer do these things, she still wants to be with them.
SP: Tell me three things that are good about palliative care nursing in Brazil.
FBS: Empathy, compassion and impeccable technical procedures are the positive aspects that palliative care nurses have in Brazil.
SP: Tell me three things that need to be improved in palliative care nursing in Brazil.
FBS: However, there are aspects to be improved by palliative care nurses in Brazil, such as the nurse’s autonomy to make decisions, evaluation and management of patients’ symptoms.
SP: How might your time in Europe impact on your work in Brazil?
FBS: Participating in the EAPC World Congress in Berlin, as well as getting to know some researchers from the International Observatory on End of Life Care and their projects, enabled me to know better the context of palliative care in Europe. Thus, I know how necessary it is to evolve and improve palliative care in developing countries and identify what is possible in our context, including Brazil, as well as the challenges to be faced. Specifically, in my work as a teacher and nursing researcher in palliative care, this experience has provided me with ideas for the development of innovative research projects that I intend to share with colleagues in the field so that together we can put into practice and contribute to the advancement of palliative care in Brazil.
- Find out more about learning and research opportunities at The International Observatory on End of Life Care, Lancaster University.
- Read more posts about palliative care in Brazil on the EAPC blog.
- You may also like to read the interview with Dr Geana Paula Kurita, winner of the 2019 EAPC Post-doctoral Award, whose journey to build her research career in palliative care has led her from Brazil to Europe.