Exploring societal solidarity in the context  of extreme prematurity

Hendriks, Manya J.; Bucher, Hans Ulrich; Klein, Sabine D.; Streuli, Jürg C; Baumann-Hölzle, Ruth; Fauchère, Jean‐Claude

doi:10.4414/smw.2017.14418

Cited by 2 publications

(2 citation statements)

References 21 publications

(28 reference statements)

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“…Interestingly, nurses in our study considered society’s lack of solidarity and shortage of services for disabled as problematic within the decision-making process. This stands in contrast to a Swiss population survey about extreme prematurity, where a large majority of the population expressed substantial solidarity towards disabled people and did not perceive a decrease of solidarity over the last years [ 15 ]. More importantly, extremely premature infants born in Switzerland are provided with high quality care in which long-term economic considerations should not interfere with ethical decision-making for an individual case [ 16 ].…”

Section: Discussioncontrasting

confidence: 77%

Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses

et al. 2018

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BackgroundIn the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants.MethodsAll 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored.ResultsNinety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given.ConclusionsPhysicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.Electronic supplementary materialThe online version of this article (10.1186/s12887-018-1040-z) contains supplementary material, which is available to authorized users.

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Section: Discussioncontrasting

confidence: 77%

Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses

et al. 2018

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“…Our study was secondary to a larger quantitative survey on end-of-life decisions in extremely preterm infants. Our task was to shed light on the parental perspective, whereas the other studies forming part of the survey focused on the perspectives of society, of NICU HCPs, and on ethical questions arising from the results (Hendriks, Bucher, et al, 2017; Hendriks, Klein et al, 2017; Klein et al, 2017).…”

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confidence: 99%

“You Can Only Give Warmth to Your Baby When It’s Too Late”: Parents’ Bonding With Their Extremely Preterm and Dying Child

Ábrahám

Hendriks

2017

Qual Health Res

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This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), they cannot act as primary caregivers. Instead, they depend on professional instructions for access and care. Embodied parenthood can be experienced only at the end-of-life, that is, during the dying trajectory and after the child's death. Professionally supporting parents during this compressed process (from assigned and distant to embodied parenthood) contributes fundamentally to their perception of being a family and supports their mourning. This calls for the further establishment of palliative and bereavement care concepts in neonatology.

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Exploring societal solidarity in the context of extreme prematurity

Cited by 2 publications

References 21 publications

Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses

Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses

“You Can Only Give Warmth to Your Baby When It’s Too Late”: Parents’ Bonding With Their Extremely Preterm and Dying Child

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