Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment
Attitude of health personnel; Decision making; Infants; Neonatologists; Physicians
BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implications for prognosis influence clinicians' decisions to recommend intensive versus palliative care. METHODS: We conducted a national study of neonatologists using a split sample experimental design. The questionnaire contained 4 clinical vignettes. Participants were randomly assigned to see one of 2 versions that varied only regarding whether they included the following genetic findings: (1) a variant of uncertain significance; (2) a genetic diagnosis that affects neurodevelopment but not acute survival; (3) a genetic versus nongenetic etiology of equally severe pathology; (4) a pending genetic testing result. Physicians answered questions about recommendations they would make for the patient described in each vignette. RESULTS: Vignette versions that included a variant of uncertain significance, a diagnosis foreshadowing neurodevelopmental impairment, or a genetic etiology of disease were all associated with an increased likelihood of recommending palliative rather than intensive care. A pending genetic test result did not have a significant effect on care recommendations. CONCLUSIONS: Findings from this study of hypothetical cases suggest neonatologists apply uncertain genetic findings or those that herald neurodevelopmental disability in problematic ways. As genetic testing expands, understanding how it is used in decision-making and educating clinicians regarding appropriate use are paramount.
Callahan KP; Flibotte J; Skraban C; Wild KT; Joffe S; Munson D; Feudtner C
Pediatrics
2022
<a href="http://doi.org/10.1542/peds.2021-052130" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-052130</a>
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
Surveys and Questionnaires; Newborn Infant; Pregnancy; Attitude of Health Personnel; Decision Making; Belgium; Terminal Care; Perinatal death; End-of-life decisions; Death; Termination of pregnancy; Neonatologists; Optimism; Attitude questionnaire; Attitudes of neonatologists and neonatal nurses; Neonatal Nurses
AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses towards perinatal ELDs. METHODS: A survey was handed out to all neonatologists and neonatal nurses in all eight neonatal intensive care units in Flanders, Belgium in May 2017. Respondents indicated agreement with statements regarding perinatal ELDs on a Likert-scale and sent back questionnaires via mail. RESULTS: The response rate was 49.5% (302/610). Most neonatologists and nurses found nontreatment decisions such as withholding or withdrawing treatment acceptable (90-100%). Termination of pregnancy when the foetus is viable in cases of severe or lethal foetal problems was considered highly acceptable in both groups (80-98%). Physicians and nurses do not find different ELDs equally acceptable, e.g. nurses more often than physicians (74% vs 60%, p = 0.017) agree that it is acceptable in certain cases to administer medication with the explicit intention of hastening death. CONCLUSION: There was considerable support for both prenatal and neonatal ELDs, even for decisions that currently fall outside the Belgian legal framework. Differences between neonatologists' and nurses' attitudes indicate that both opinions should be heard during ELD-making.
Dombrecht L; Deliens L; Chambaere K; Baes S; Cools F; Goossens L; Naulaers G; Roets E; Piette V; Cohen J; Beernaert K
Acta Paediatrica
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">10.1111/apa.14797</a>
Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review
Infant; Program Evaluation; Referral and Consultation; Terminal Care; Human; Descriptive Statistics; Perinatal Care; Prenatal Diagnosis; Retrospective Design; Record Review; Work Experiences; Gestational Age; Perinatal Death; Palliative Care -- In Infancy and Childhood; Treatment Outcomes; Neonatologists; Central Nervous System Diseases; Early Intervention; Infant High Risk
Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.
Doherty ME; Power L; Williams R; Stoppels N; Grandmaison Dumond L
Paediatrics & Child Health
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1093/pch/pxz089" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz089</a>
End-of-life decisions in neonatal care: a conversation analytical study
communication; conversation analytical study; End-of-life decisions; neonatal care; neonatologists; parents
OBJECTIVE: To understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments. DESIGN: Formal conversations were recorded, transcribed and analysed according to the conventions and methods of conversation analysis. SETTING: Two tertiary neonatal intensive care units. PARTICIPANTS: Consultant neonatal specialists and families. MAIN OUTCOME MEASURES: We used conversation analysis and developed an inductive coding scheme for conversations based on the introduction of limiting life-sustaining treatments and on the parental responses. RESULT(S): From recordings with 51 families, we identified 27 conversations about limiting life support with 20 families and 14 doctors. Neonatologists adopted three broad strategies: (1) 'recommendations', in which one course of action is presented and explicitly endorsed as the best course of action, (2) a 'single-option choice' format (conditional: referring to a choice that should be made, but without specifying or listing options), and (3) options (where the doctor explicitly refers to or lists options). Our conversation analysis-informed coding scheme was based on the opportunities available for parents to ask questions and assert their preference with minimal interactional constraint or pressure for a certain type of response. Response scores for parents presented with conditional formats (n=15, median 5.0) and options (n=10, median 5.0) were significantly higher than for those parents presented with 'recommendations' (n=16, median 3.75; p=0.002) and parents were more likely to express preferences (p=0.005). CONCLUSION(S): Encouraging different approaches to conversations about limitation of life-supporting treatment may lead to better parent engagement and less misalignment between the conversational partners. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Marlow N; Shaw C; Connabeer K; Aladangady N; Gallagher K; Drew P
Archives of disease in childhood - Fetal and neonatal edition
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2020-319544" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-319544</a>
The impact of ethical and legal decision-making in neonatal intensive care on psychosocial wellbeing of the health care professionals the overview of the HUNIC Project study design
ethics; social support; neonatal intensive care; end-of-life decision making; job satisfaction; neonatologists; health behavior; medical personnel; study design; well-being of health workers
The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the decision-making process, parental communication, to analyse the differences between HUNIC results in 2015-2016 and EURONIC results in 1996-1997, to compare the attitudes of neonatologists and neonatal nurses, and to identify factors that might affect those attitudes and opinions. A further important objective of the HUNIC study is to compare these attitudes and opinions of neonatal care providers with their personal work experience, educational background in the bioethics field, social support, work and life satisfaction, burnout, health behaviour and psychosocial health. This paper aims to present the methodology of an extensive, complex, and multidisciplinary survey (HUNIC) within the framework of the EURONIC. Copyright © 2019 Semmelweis University Institute of Mental Health, Budapest
Feith H J; Kiss Z S; Pilling J; Kovacs A; Szabo M; Cuttini M; Berbik I; Gezsi A; Gradvohl E
European Journal of Mental Health
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.5708/EJMH.14.2019.2.6" target="_blank" rel="noreferrer noopener">10.5708/EJMH.14.2019.2.6</a>
Communication between neonatologists and parents when prognosis is uncertain
communication; neonatologists; parents; pediatrics; quality of life
OBJECTIVE: When an infant's prognosis is uncertain, communication between neonatologists and parents surrounding goals of care and decision-making can be challenging. This qualitative study explored communication between neonatologists and parents to discover qualities which may enhance or impede parent-clinician partnership under such difficult circumstances. STUDY DESIGN: Guided by the National Cancer Institute (NCI) Patient Centered Communication framework, semi-structured individual interviews were conducted and analyzed regarding neonatologist and parent perceptions of their communication. Subjects consisted of nine dyads of neonatologists and English-speaking parents whose infant had an uncertain prognosis. RESULTS: Parents were overall satisfied with neonatologists' communications concerning their infant's uncertain trajectory. Nonetheless, both experienced challenges and distress during communication, impeding collaboration and engagement. CONCLUSIONS: Families and neonatologists value principles of patient centered communication but report challenges implementing this practice. Incorporating a multidisciplinary approach in settings of prognostic uncertainty to foster patient centered communication, may enhance communication surrounding NICU care.
Drach L L; Hansen D A; King T M; Sibinga E M S
Journal of Perinatology
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1038/s41372-020-0673-6" target="_blank" rel="noreferrer noopener">10.1038/s41372-020-0673-6</a>
In What Circumstances Will A Neonatologist Decide A Patient Is Not A Resuscitation Candidate?
Futility; Intensive Care; Social Issues; Social Sciences; Biomedical; Ethics Medical; Slow Code; Uncertainty; Neonatologists; Practice; Decision Making; Analysis; Do-not-resuscitate Orders; Decision Making; Intensive Care; Pediatrics; Ethics; Pulmonary Arteries; Ostomy; Palliative Care; Medical Prognosis
End-of-life Care; Foetal Viability; Neonatology; Newborns And Minors; Palliative Care
Objective The purpose of this study was to determine the opinions of practising neonatologists regarding the ethical permissibility of unilateral Do Not Attempt Resuscitation (DNAR) decisions in the neonatal intensive care unit.
Study design An anonymous survey regarding the permissibility of unilateral DNAR orders for three clinical vignettes was sent to members of the American Academy of Pediatrics Section of Perinatal Medicine.
Results There were 490 out of a possible 3000 respondents (16%). A majority (76%) responded that a unilateral DNAR decision would be permissible in cases for which survival was felt to be impossible. A minority (25%) responded ‘yes’ when asked if a unilateral DNAR order would be permissible based solely on neurological prognosis.
Conclusions A majority of neonatologists believed unilateral DNAR decisions are ethically permissible if survival is felt to be impossible, but not permissible based solely on poor neurological prognosis. This has significant implications for clinical care.
Peter Daniel Murray; Denise Esserman; Mark Randolph Mercurio
Journal Of Medical Ethics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
doi:10.1136/medethics-2015-102941