Pediatric intensive care in the 1980s was a new and undeveloped medical area in Brazil; there were very few PICU beds available and scare resources to treat the enormous number of critically ill children. Measles, meningococcemia, sepsis secondary to diarrhea, trauma, drowning, and other acute conditions were routinely fatal. Those pioneer PICUs innovate the treatment for acute ill child, providing cardiovascular and respiratory support and increasing the chances for recovery. The rule was providing cardiopulmonary resuscitation (CPR) to close to 100% of children before dying in the PICU, even those few with chronic and terminal disease. Nonetheless, the mortality rate in most of the Brazilian PICUs oscillated between 15% and 20% as a result of multiple factors such as scarcely available PICU beds, bad conditions of transportation for sick children, equipment not designed to be used in children, few pediatric intensivists to cover different and distant units, among others. Physicians and families perceived PICU death as a result of a disorganized and fragile system of healthcare.
In the 1990s and early 2000s, many PICUs and neonatal ICUs were opened in Brazil, incorporating new and advanced technologies and offering treatment protocols that changed outcomes and expectations (e.g., surfactant treatment, sepsis/septic shock protocols, renal and liver transplantation, congenital cardiac surgery, new and modern ventilators). The demographic characteristics of children admitted to the Brazilian PICUs changed progressively during those 2 decades, in consequence of better vaccine coverage, a decrease in the number of children with infectious disease being gradually replaced by children with chronic and persistent diseases (1–3).
In the 2000s, the PICU mortality rate decreased to below 10%, being children with chronic diseases or severe sequelae and technology dependence becoming a representative population in the Brazilian PICUs (2–4). As seen in other parts of the world, many of these children experienced repeated hospitalizations, including the final phase of their illness preceding death. At that time, several studies described that futile treatment, CPR, and “excessive” interventions were provided to this group of children in the moments before death, given that limitation of life support (LSL) represents a very rare option in Brazil as in other parts of Latin America (5–7).
Some studies identified the fear of breaking the law (confounding LSL and euthanasia) or some perception of professional omission (when not offering potentially curative treatments) as well as incomplete ethical knowledge associated with cultural aspects as the main reasons for adult and pediatric intensivist maintaining full curative treatment and futile interventions to patients with limited expectancy of life even in the very last moments of life (5, 6, 8, 9). In response to this challenge, the Brazilian Pediatric Society, the Brazilian Critical Care Association, and the Federal Council of Medicine joined efforts toward promoting the “good death in the ICU.” Education programs, guidelines for life support limitation, new federal regulations in this regard were implemented. Initiated in mid-2000s up to now, issues including bioethical aspects, LSL, palliative care, and “good death in the ICU” became hot topics in most of the Brazilian Intensive Care congresses.
In the current decade, LSL is the most common mode of death in Brazilian ICUs; it is offered to an increasing number of dying patients (adults and children). However, there are still aspects to be improved (9–13). Even nowadays, most of the nurses belonging to the PICU staff do not have a proactive engagement in the decision-making process. In previous studies, it was demonstrated that PICU nurses prefer that physicians lead and guide the final decision involving terminally ill patients (13). Interviewing parents of the children who died in two Brazilian PICUs, it was observed that parents truly believe in the medical staff in spite of not understanding well their words, neither the real cause and mechanism of death of their child as well as the fact that they did not participate actively in the decision-making process to define LSL (14). Considering this reality, most Brazilian referral hospitals have developed local programs to promote better communication between families and heath care staff to better involve families in this discussion.
In 2012, palliative care was recognized by the Federal Council of Medicine and by the Brazilian Medical Association as a new medical specialty in Brazil. Since then it was implemented as a national policy to develop and spread the specialty to most of regions of our country. In referral and complex hospitals, the palliative care team has been progressively involved in the PICU, acting in a complementary manner in the management of children with complex diseases and/or terminal illness. Aside from these duties, the palliative care team has helped the PICU staff to improve communication, uniform strategies for end-of-life decisions, protocols for pain control in chronic patients, and establish a strong relationship with parents to encourage them to care for their children at home (11, 15).
In summary, the frequency, the modes, and the perspective of death in Brazilian PICUs have changed substantially over the last 30 years. Nowadays, the death rate in most Brazilian PICUs has decreased to less than 5%. Before dying, the vast majority of these children are affected by complex diseases with disabilities and comorbidities, and their PICU admission is associated with palliative care and some kind of LSL. Most of the Brazilian referral PICUs provide palliative care support in addition to the usual care dedicated to this group of patients. The association of these two teams seems to be very advantageous in our country considering our culture and the behavioral of our population. Characteristically, in our culture, parents blindly believe in the physicians who are caring for their child (14). In this context, in the 80s and 90s, pediatric intensivists assumed a paternalistic role (when physicians decide in a unilateral way on behalf of that child and family) especially when caring for a dying child. Nowadays, pediatric intensivists have moved to a medically guided decision (when physicians communicate/discuss with the parents the real situation and propose an approach based on his/her experience and knowledge).
The palliative care team in this context is very important for supporting the family as well as implementing the complementary care that is outside the expertise of the PICU staff. Different from what happened in recent years, the fellows and residents nowadays are better trained and possess more skills and abilities to care for the terminally ill child in Brazilian PICUs. They are trained in specific areas such as communication, decision-making process discussion, and palliative care. In this regard, I believe that we now have reached the upper end of the learning curve to provide a good death to the dying children in Brazilian PICUs.
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