Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals.

BACKGROUND: Decisions about treatments for extremely preterm infants (EPIs) born in the 'grey zone' of viability can be ethically complex. This 2020 survey aimed to determine views of UK neonatal staff about thresholds for treatment of EPIs given a recently revised national Framework for Practice from the British Association of Perinatal Medicine. METHODS: The online survey requested participants indicate the lowest gestation at which they would be willing to offer active treatment and the highest gestation at which they would withhold active treatment of an EPI at parental request (their lower and upper thresholds). Relative risks were used to compare respondents' views based on profession and neonatal unit designation. Further questions explored respondents' conceptual understanding of viability. RESULTS: 336 respondents included 167 consultants, 127 registrars/fellows and 42 advanced neonatal nurse practitioners (ANNPs). Respondents reported a median grey zone for neonatal resuscitation between 22+1 and 24+0 weeks' gestation. Registrars/fellows were more likely to select a lower threshold at 22+0 weeks compared with consultants (Relative Risk (RR)=1.37 (95% CI 1.07 to 1.74)) and ANNPs (RR=2.68 (95% CI 1.42 to 5.06)). Those working in neonatal intensive care units compared with other units were also more likely to offer active treatment at 22+0 weeks (RR=1.86 (95% CI 1.18 to 2.94)). Most participants understood a fetus/newborn to be 'viable' if it was possible to survive, regardless of disability, with medical interventions accessible to the treating team. CONCLUSION: Compared with previous studies, we found a shift in the reported lower threshold for resuscitation in the UK, with greater acceptance of active treatment for infants <23 weeks' gestation.

Ética e estética do cuidado nos primórdios da vida: reinventando a prática cotidiana com bebês numa unidade de acolhimento / Ethics and aesthetics of care in the early days of life: reinventing everyday practice with babies in a care unit

Esta tese é resultado de uma pesquisa-intervenção realizada na Zona Sul da cidade do Rio de Janeiro, em uma Unidade de Acolhimento para bebês entre 0 e 36 meses. Nesse contexto, analisei a importância de uma ética do cuidado em relação à primeiríssima infância, o que significou incluir no estudo o profissional cuidador e a instituição que une os atores, bebês e adultos. Também investiguei a qualidade do cuidado ofertado aos bebês no berçário desse abrigo municipal, exatamente no momento em que os gestores desejavam realizar uma mudança estrutural na dinâmica do trabalho das educadoras sociais. O estudo constou de três passos metodológicos e práticos. Em primeiro lugar, a modificação paradigmática do modo de cuidar foi sendo construída ao longo do tempo, tendo amparo num coletivo denominado Roda de Conversa, quando se passou a falar sobre os problemas enfrentados no cotidiano, especialmente sobre a relação com os bebês e os familiares. As comunicações foram convergindo no sentido de que o bebê precisava de uma relação de referência que lhe assegurasse uma atenção recíproca e amorosa. A partir da interlocução entre a psicanálise e a abordagem Pikler, foi discutido no trabalho um modelo de intervenção que visava favorecer tanto a constituição psíquica dos bebês quanto o cuidado com o cuidador. Para isso, foi ofertado às educadoras, nesse primeiro momento, o referido espaço de fala onde se processavam as angústias que a atividade de cuidar suscita e onde havia uma mútua apropriação das sutilezas da função que elas exercem. Num segundo momento, a pesquisa passou a ser desenvolvida no berçário da instituição e focou-se, de um lado, na observação das relações cotidianas de cuidado entre adultos e crianças, sendo inspirada no método de observação da psicanalista Esther Bick; de outro, nas narrativas das educadoras que foram selecionadas para serem acompanhadas em profundidade e que participaram de uma conversa com a pesquisadora, ao final de cada observação. Essa última atividade se fundamentou na construção clínica da intervenção a tempo e da abordagem da psicossociologia francesa. Num terceiro momento, a equipe técnica foi entrevistada, de forma aberta e sem um instrumento de condução da fala, sobre as relações internas e externas de cada uma. O objetivo foi compreender de que modo essas pessoas, responsáveis institucionais, viam a dinâmica de seu trabalho e a forma como o exerciam, considerando que as dimensões sociais, individuais, subjetivas, intersubjetivas, conscientes e inconscientes, imaginárias e simbólicas nas instituições produzem efeitos na qualidade do que é produzido. Dessa forma, estão no centro da investigação as relações intersubjetivas e seus efeitos nas relações de cuidado, tendo como eixo teórico os trabalhos desenvolvidos por B. Golse e D. Stern sobre os primórdios da subjetivação, assim como o modelo metapsicológico proposto por Winnicott sobre as relações iniciais cuidador/bebê, a teoria psicanalítica sobre os processos intersubjetivos/grupais, a psicodinâmica do trabalho e a abordagem psicossociológica francesa. Considerando as funções do cuidado como um eixo primordial para o processo de subjetivação dos bebês e para o desenvolvimento da capacidade da educadora de estabelecer vínculos de qualidade com os pequenos, o trabalho destacou as dimensões sensíveis do bebê e do adulto, e a necessidade de as instituições considerarem esses elementos invisíveis como veículo para o processo de humanização de todos. Concluo que esse estudo corrobora para o entendimento de que, para um trabalho de qualidade no âmbito do cuidado com bebês aconteça é fundamental que o cuidador tenha a capacidade de se autorregular emocionalmente e de cuidar de si. Para isso, exemplarmente, nesse tempo da pesquisa, as educadoras e a equipe técnica produziram um espaço para a invenção de si e do mundo ao qual pertencem

This thesis is the result of an intervention research conducted in Zona Sul, the southern part of the city of Rio de Janeiro, in a care unit for babies between 0 and 36 months. In this context, I analyzed the importance of an ethics of care in relation to the very first childhood, which meant to include in the study the professional caregiver and the institution that unites the actors, babies and adults. I also investigated the quality of care offered to the babies in the nursery of this municipal shelter, just at the moment when managers wanted to make a structural change in the work dynamics of social educators. The study consisted of three methodological and practical steps. In the first place, the paradigmatic modification of the way of caring was built over time, taking shelter in a collective called Wheel of Talk when it came to talk about the problems faced in the daily life, especially on the relationship with babies and relatives. The communications were converging in the sense that the baby needed a reference relationship that would ensure mutual and loving attention. From the interplay between psychoanalysis and the Pikler approach, an intervention model was discussed in the work that aimed to favor both the psychic constitution of the babies and the care of the caregiver. To this end, it was offered to the educators, at that first moment, the said space of speech where the anxieties that the activity of caring aroused were processed and where there was a mutual appropriation of the subtleties of the function that they exercised. Secondly, the research began to be developed in the nursery of the institution and focused, on the one hand, on the observation of the daily relations of care between adults and children, being inspired by the method of observation of the psychoanalyst Esther Bick; on the other, in the narratives of the educators who were selected to be followed in depth and who participated in a conversation with the researcher at the end of each observation. This last activity was based on the clinical construction of the intervention in time and the approach of French psychosociology. In a third moment, the technical team was interviewed, openly and without an instrument of speech, on the internal and external relations of each one. The objective was to understand how these people, as institutional leaders, saw the dynamics of their work and how they exercised it, considering that the social, individual, subjective, intersubjective, conscious and unconscious, imaginary and symbolic dimensions in institutions produce effects on quality of what is produced. In this way, intersubjective relations and their effects on care relationships are at the heart of the research, with the work of B. Golse and D. Stern on the origins of subjectivation as the theoretical axis. As was emphasized in the metapsychological model proposed by Winnicott on the initial carer / baby relations, the psychoanalytic theory on intersubjective / group processes, work psychodynamics and the French psycho-sociological approach. Considering the functions of care as a primordial axis for the process of subjectivation of the babies and for the development of the educator's ability to establish quality bonds with the small ones, the work highlighted the sensitive dimensions of the baby and the adult, and the need for the institutions to consider these invisible elements as a vehicle for the humanization process of all. I conclude that this study corroborates the understanding that for a quality work in the field of baby care to happen it is fundamental that the caregiver has the ability to self-regulate emotionally and to take care of itself. For this, in this time of research, the educators and the technical team have produced a space for the invention of themselves and of the world to which they belong.

Advanced clinical medicine requires advanced clinical ethics.

Many advances have occurred in clinical medicine in the last decades. Solid organ transplants, corrective surgery for congenital malformations, improved cytostatic regimes for children with cancer, and respiratory care for premature infants are but a few examples of the changing face of medical practice. Such changes have added years to life. But along the way many patients have paid a price, both in terms of loss of life and of added suffering. Even today, some survivors are faced with a life of impairment and suffering. Follow-up studies of extremely low-birth-weight infants show that the smallest infants have a high rate of severe sequelae. Some argue that such suffering should be sufficient reason to make us desist from further attempts to advance the frontiers of therapy. This paper seeks to reflect on the character of advanced medicine and on how we relate to patients and their kin in our quest for further improvements in therapy. The price for continued advances will inevitably be paid by some patients who will not profit from them. Therefore, patients who are asked to participate in such a quest must receive honest and transparent information, including a discussion about where and how they would draw the limits. Clinical competency is a core concept in advanced medicine, but a caring comportment also demands that our relationship to the patient be characterized by honesty, integrity, and decency. In dialogue with parents, finding the right balance between parental exercise of autonomy and safe-guarding the best interest of the child remains a challenge.

Proxy consent in neonatal care--goal-directed or procedure-specific?

The prescription of practice guidelines for consent in neonatal care that are appropriate for all interventions faces substantial problems. Current practice varies widely. Consent in neonatal care is compromised by postnatal constraints on information sharing and decision-making. Empirical research shows marked individual and cultural variation in the degree to which parents want to contribute to decision-making on behalf of their infants. Conflict between the parents' wishes and the infant's best interests could arise if consent for a recommended intervention were refused, and parental refusal of consent may have to be overridden. Consent to an appropriate package of care (such as special, intensive or palliative care) may be morally preferable to a universal requirement to seek consent for all individual interventions entailed by that package.