Swiss neonatal caregivers express diverging views on parental involvement in shared decision‐making for extremely premature infants

Fauchère, Jean‐Claude; Klein, Sabine D.; Hendriks, Manya J.; Baumann-Hölzle, Ruth; Berger, Thomas M.; Bucher, Hans Ulrich

doi:10.1111/apa.15828

Cited by 13 publications

(25 citation statements)

References 32 publications

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“…Initiating and withholding intensive care for EPT infants is not something that should only be discussed by physicians, other parties, such as parents, habilitation physicians, other paediatricians and representatives of society should also be involved. The Fauchère et al paper makes an important contribution to these discussions 1 …”

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confidence: 98%

“…But is it pure paternalism and do they solely have the EPT infants' best interest in mind? Could physicians have conflicting interests, such as research interests? 5 It is important to point out that since 2013 parents in Switzerland have had the authority to make surrogate decision when their children are unable to decide for themselves 1 . This means that Swiss physicians are expected to promote shared decision‐making.…”

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confidence: 99%

“…The paper by Fauchere et al 1 provides a good basis for future discussions on providing intensive care for EPT infants.…”

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confidence: 99%

“…Fauchère et al discuss the issues raised by their questionnaire‐based survey of Swiss neonatal physicians and nurses in this issue of Acta Paediatrica 1 . These include who is most qualified to make decisions about EPT infants, with regard to initiating, withholding or withdrawing life‐sustaining treatment 1 . I would like to look at some general aspects of prematurity before discussing this specific study.…”

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confidence: 99%

“…One issue covered by Fauchère et al was long‐term quality of life, such as whether extreme preterm infants can complete primary school and whether they will be able to take care of themselves in the future. Unlike most neonatal physicians and nurses, the majority of the general public see these as central issues when discussing whether to provide EPT infants with intensive care 1 . This is because EPT babies can need life‐time support from their parents or society.…”

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confidence: 99%

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Survey results raise important issues about the ethical aspects of intensive care treatment for extremely preterm infants

Lynøe

2021

Acta Paediatrica

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confidence: 98%

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confidence: 99%

“…The paper by Fauchere et al 1 provides a good basis for future discussions on providing intensive care for EPT infants.…”

mentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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Survey results raise important issues about the ethical aspects of intensive care treatment for extremely preterm infants

Lynøe

2021

Acta Paediatrica

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Attitudes About Extremely Preterm Birth Among Obstetric and Neonatal Health Care Professionals in England

et al. 2022

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ImportanceVariation in attitudes between health care professionals involved in the counseling of parents facing extremely preterm birth (&lt;24 wk gestational age) may lead to parental confusion and professional misalignment.ObjectiveTo explore the attitudes of health care professionals involved in the counseling of parents facing preterm birth on the treatment of extremely preterm infants.Design, Setting, and ParticipantsThis qualitative study used Q methods to explore the attitudes of neonatal nurses, neonatologists, midwives, and obstetricians involved in the care of extremely preterm infants in 4 UK National Health Service perinatal centers between February 10, 2020, and April 30, 2021. Each participating center had a tertiary level neonatal unit and maternity center. Individuals volunteered participation through choosing to complete the study following a presentation by researchers at each center. A link to the online Q study was emailed to all potential participants by local principal investigators. Participants ranked 53 statements about the treatment of extremely preterm infants in an online quasi-normal distribution grid from strongly agree (6) to strongly disagree (−6).Main Outcomes and MeasuresDistinguishing factors per professional group (representing different attitudes) identified through by-person factor analysis of Q sort-data were the primary outcome. Areas of shared agreement (consensus) between professional groups were also explored. Q sorts achieving a factor loading of greater than 0.46 (P &lt; .01) on a given factor were included.ResultsIn total, 155 health care professionals volunteered participation (128 [82.6%] women; mean [SD] age, 41.6 [10.2] years, mean [SD] experience, 14.1 [9.6] years). Four distinguishing factors were identified between neonatal nurses, 3 for midwives, 5 for neonatologists, and 4 for obstetricians. Analysis of factors within and between professional groups highlighted significant variation in attitudes of professionals toward parental engagement in decision-making, the perceived importance of potential disability in decision-making, and the use of medical technology. Areas of consensus highlighted that most professionals disagreed with statements suggesting disability equates to reduced quality of life. The statement suggesting the parents’ decision was considered the most important when considering neonatal resuscitation was placed in the neutral (middistribution) position by all professionals.Conclusions and RelevanceThe findings of this qualitative study suggest that parental counseling at extremely low gestations is a complex scenario further complicated by the differences in attitudes within and between professional disciplines toward treatment approaches. The development of multidisciplinary training encompassing all professional groups may facilitate a more consistent and individualized approach toward parental engagement in decision-making.

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The ethics and practice of perinatal care at the limit of viability: FIGO recommendations

Vidaeff,

Capito,

Gupte

et al. 2024

Intl J Gynecology & Obste

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An arbitrary gestational age limit of viability cannot be set, and in clinical practice the focus should be on a periviability interval—the so‐called “gray zone” of prognostic uncertainty. For cases within this interval, the most appropriate decision‐making process remains debatable and periviability has emerged as one of the greatest challenges in bioethics. Universally recognized ethical principles may be interpreted differently due to socioeconomic, cultural, and religious aspects. In the case of periviability, there is considerable uncertainty over whether interventions result in a greater balance of clinical good over harm. Furthermore, the fetus or neonate is unable to exercise autonomy and the physicians and parents will act as patient surrogates. When parents and physicians disagree about the infant's best interest, a dialogue without paternalistic attitudes is essential, whereby physicians should only offer, but not recommend, perinatal interventions. Parental choice, based on thorough information, should be respected within the limits of what is medically feasible and appropriate. When disagreements between parents and physicians occur, how is consensus to be achieved? Professional guidelines can be helpful as a framework and starting point for discussion. In reality, however, guidelines only rarely draw categorical lines and in many cases remain vague and ambiguously worded. Local ethics committees can provide counseling and function as moderators during discussions, but ethics committees do not have decision precedence. Counseling assumes the most significant role in periviability discussions, taking into consideration the particular fetal and maternal characteristics, as well as parental values. Several caveats should be observed relative to counseling: message fragmentation or inconsistence should be minimized, prognosis should preferably be presented in a positive framing, and overreliance on statistics should be avoided. It is recommended that decisions regarding neonatal resuscitation in the periviability interval be made before birth and not conditional on the newborn's appearance at birth. Regardless of decision, it is important to assure pre‐ and postnatal coherence. The present article describes how individual physicians, centers, and countries differ in the approach to the decision to initiate or forgo intensive care in the periviability interval. It is impossible to provide a global consensus view and there can be no unifying ethical, moral, or practical strategy. Nevertheless, ethically justified, quality care comprises early involvement of the obstetric and neonatal team to enable a coherent, comprehensible, nonpaternalistic, and balanced plan of care. Ultimately, physicians will need to adjust the expectations to the local standards, local outcome data, and local neonatal support availability.

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Swiss neonatal caregivers express diverging views on parental involvement in shared decision‐making for extremely premature infants

Cited by 13 publications

References 32 publications

Survey results raise important issues about the ethical aspects of intensive care treatment for extremely preterm infants

Survey results raise important issues about the ethical aspects of intensive care treatment for extremely preterm infants

Attitudes About Extremely Preterm Birth Among Obstetric and Neonatal Health Care Professionals in England

The ethics and practice of perinatal care at the limit of viability: FIGO recommendations

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