Hypoplastic left heart syndrome: attitudes among pediatric residents and nurses towards fetal and neonatal management

Renella, Pierangelo; Chang, Ruey Kang; Ferry, David A.; Bart, Robert D.; Sklansky, Mark

doi:10.1002/pd.1835

Cited by 16 publications

(9 citation statements)

References 17 publications

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“…2 Yet half of all North American paediatric nurses would terminate an affected pregnancy, while, if the baby is born, 48% of residents and 68% of nurses would choose or seriously consider comfort care, the proportion choosing comfort care increasing with increasing experience. 3 This worrying disconnect may be because nurses are more aware of the proven long-term psychological effects on mothers of having a baby with severe congenital heart disease 4,5 and on the child's real quality of life, which has proved elusive to measure. Currently there is enormous variation in what parents are told about HLHS.…”

mentioning

confidence: 99%

Ethical issues in hypoplastic left heart syndrome

Isaacs

Kilham

2013

J Paediatrics Child Health

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mentioning

confidence: 99%

Ethical issues in hypoplastic left heart syndrome

Isaacs

Kilham

2013

J Paediatrics Child Health

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“…Respondents showed a higher acceptance of late TOP for fetal malformations than for maternal (psychological and socio-economic) problems, which is consistent with the literature. 15,25,32,33 Although Belgian law specifically states "physical and mental health", healthcare professionals often narrow this down to "maternal physical health". Previous studies found a high acceptance of late TOP for cases with fetal mental impairment.…”

Section: Discussionmentioning

confidence: 99%

“…Personal attitudes of healthcare professionals also influence their point of view in these advisory committees. [13][14][15][16][17] Previous studies showed that attitudes of healthcare providers towards TOP are influenced by personal obstetric history, 18 professional experience, [18][19][20] religious beliefs [18][19][20] and professional orientation, [20][21][22][23] eg maternal-fetal medicine specialists vs neonatal specialists, or doctors vs nurses. These studies are limited to studying physicians' or nurses' attitudes towards late TOP, or compare only one aspect, such as demographic factors, [18][19][20][21][22][23] the type of end-of life decision, 24 or TOP indication 19,20,22,23,[25][26][27] and usually indicate large differences between study groups.…”

Section: Introductionmentioning

confidence: 99%

Healthcare professionals’ attitudes towards termination of pregnancy at viable stage

Roets

Dierickx

Deliëns

et al. 2020

Acta Obstet Gynecol Scand

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Introduction Upon prenatal diagnosis of congenital malformations, termination of pregnancy (TOP) may be an option, sometimes at a gestational age when the fetus is already viable (late TOP). We aimed to study attitudes towards late TOP of all tertiary healthcare professionals involved in late TOP practice. Material and methods A mail survey was conducted among all physicians and paramedical professionals involved in late TOP decision‐making in all eight centers with a Neonatal Intensive Care Unit in Flanders, Belgium (N = 117). The questionnaire contained general and case‐based attitude items. Results Response rate was 79%. Respondents were either physicians (51.1%) or paramedical professionals (49.9%). The composition of professionals involved in late TOP decision‐making was heterogeneous between the eight centers. Late TOP was highly accepted in both lethal fetal conditions (100%) and serious (but not lethal) fetal conditions (95.6%). Where the fetus is healthy, 19.8% of respondents agreed with late TOP for maternal psychological problems and fewer respondents (13.2%) agreed with late TOP in the case of maternal socio‐economic problems (P = .002). Physicians more often preferred feticide over neonatal palliative care in the case of non‐lethal fetal conditions compared with paramedical professionals (68.1% vs 53.2%, P = .013). Almost nine out of ten respondents (89.1%) agreed that in the event of a serious (non‐lethal) neonatal condition, administering drugs with the explicit intention to end neonatal life was acceptable. Behavioral intentions indicate that even in situations with an unclear diagnosis and unpredictable prognosis, 85.6% of professionals would still consider late TOP. Conclusions Healthcare professionals practicing late TOP in Flanders, Belgium have a high degree of tolerance towards late TOP, irrespective of sociodemographic factors, and are demanding legislative change regarding active life‐ending in the fetal and neonatal periods. Further research should explore the correlation of attitudes to late TOP with actual medical decisions taken in daily clinical practice.

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“…In a survey of paediatric residents and nurses, Renella et al 34 found that the volume of the centre was an important factor that influences whether those surveyed would opt for surgery. Perceived estimates of survival and quality of life also appeared important in this regard.…”

Section: Discussionmentioning

confidence: 99%

Changing attitudes to the management of hypoplastic left heart syndrome: a European perspective

Murtuza

Elliott

2011

Cardiol Young

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As of January, 2011, 2392 citations in the PubMed database were available for the search string "hypoplastic left heart". The majority of these were from the centres from the United States of America and Europe. The European Association for Cardio-Thoracic Surgery Congenital Heart Surgery Database shows an annual increase in the number of Norwood (Stage I) operations for hypoplastic left heart syndrome from 2003 to 2009, with a corresponding reduction in mortality. European rates of antenatal detection vary widely between centres, as do the rates of termination for a prenatal diagnosis of hypoplastic left heart syndrome. We observed a wide variation in the estimates of surgeons for survival and quality of life for surgical palliation of hypoplastic left heart syndrome, as well as in their estimates for actual rates of termination of pregnancy in their centres. Further, there was marked inconsistency in the information given to parents as part of the process of counselling. These issues remain to be resolved if parents are to make a fully informed decision for their child.

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Hypoplastic left heart syndrome: attitudes among pediatric residents and nurses towards fetal and neonatal management

Cited by 16 publications

References 17 publications

Ethical issues in hypoplastic left heart syndrome

Ethical issues in hypoplastic left heart syndrome

Healthcare professionals’ attitudes towards termination of pregnancy at viable stage

Changing attitudes to the management of hypoplastic left heart syndrome: a European perspective

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