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OBJECTIVES: The Gaps in the Congenital Diaphragmatic Hernia (CDH) Journey Priority Setting Partnership (PSP) was developed in collaboration with CDH Australia, James Lind Alliance (JLA) and the Murdoch Children's Research Institute to identify research priorities for people with CDH, their families and healthcare workers in Australasia. DESIGN: Research PSP in accordance with the JLA standardised methodology. SETTING: Australian community and institutions caring for patients with CDH and their families. PATIENTS: CDH survivors, families of children born with CDH (including bereaved) and healthcare professionals including critical care physicians and nurses (neonatal and paediatric), obstetric, surgical, allied health professionals (physiotherapists, speech pathologists and speech therapists) and general practitioners. MAIN OUTCOME MEASURE: Top 10 research priorities for CDH. RESULTS: 377 questions, from a community-based online survey, were categorised and collated into 50 research questions. Through a further prioritisation process, 21 questions were then discussed at a prioritisation workshop where they were ranked by 21 participants (CDH survivors, parents of children born with CDH (bereaved and not) and 11 multidisciplinary healthcare professionals) into their top 10 research priorities. CONCLUSION: Stakeholders' involvement identified the top 10 CDH-related research questions, spanning from antenatal care to long-term functional outcomes, that should be prioritised for future research to maximise meaningful outcomes for people with CDH and their families.
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In this article, we highlight the Australian pediatric palliative care context. We describe the way in which pediatricians may adopt 'directive' shared decision-making to align care plans with their perceptions of harm avoidance for the child. The degree to which 'directive alignment' is ethically appropriate or proportionate in the context of the clinical and social context of the child must be considered. Shared decision-making within palliative care continues to be a challenging dynamic to navigate for pediatricians.
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Objetivos , Cuidados Paliativos , Criança , Humanos , Austrália , Pediatras , Morte , Tomada de DecisõesRESUMO
AIM: Death in the neonatal intensive care unit (NICU) commonly follows a decision to withdraw or limit life-sustaining treatment. Advances in medicine have changed the nature of life-sustaining interventions available and the potential prognosis for many newborn conditions. We aimed to assess changes in causes of death and end-of-life care over nearly four decades. METHODS: A retrospective review of infants dying in the NICU was performed (2017-2020) and compared with previous audits performed in the same centre (1985-1987 and 1999-2001). Diagnoses at death were recorded for each infant as well as their apparent prognosis and any withdrawal or limitations of medical treatment. RESULTS: In the recent epoch, there were 88 deaths out of 2084 admissions (4.2%), a reduction from the previous epochs (132/1362 (9.7%) and 111/1776 (6.2%), respectively, for epochs 1 and 2). More than 90% of infants died after withdrawal of life-sustaining treatment, an increase from the previous two epochs (75%). There was a reduction in deaths from chromosomal abnormalities, complications related to prematurity and severe birth asphyxia. CONCLUSIONS: There continue to be changes in both the diagnoses leading to death and approaches to withdrawal of treatment in the NICU. These may reflect ongoing changes in both prenatal and post-natal diagnostics as well as changing attitudes towards palliative care within the medical and wider community.
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Unidades de Terapia Intensiva Neonatal , Assistência Terminal , Recém-Nascido , Lactente , Feminino , Gravidez , Humanos , Recém-Nascido Prematuro , Cuidados Paliativos , Estudos RetrospectivosRESUMO
The clinical utility of rapid genome sequencing (rGS) in critically unwell infants has been consistently demonstrated, and there are calls for rGS to be implemented as a first-line test in the NICU. A diagnosis from rGS can enable rapid initiation of precision treatment, making it potentially lifesaving. However, in many patients rGS leads to the diagnosis of severe and life-limiting conditions, prompting discussion with families about withdrawal of life-sustaining treatment. The complexity of information about rGS, together with the heightened emotions of parents in the NICU, poses significant challenges for informed decision making in this context. We present a case where both parents are unable to provide informed consent, and the treating team must decide whether to proceed with rGS. Our discussion highlights the important differences between genome sequencing and other types of genetic testing, and the crucial role played by pre-test counseling in facilitating informed consent and preparing parents for a range of possible outcomes. We then discuss the consent paradigms at play in NICUs; whereas admission generally comes with an understanding that the treating team will perform interventions thought to be in the best interest of the child, rGS is substantially different because of its long-term implications for patients and family members. Finally, we look at the ethical interplay between parental consent and the interests of the child. We conclude by showing how cases like this are resolved at our tertiary center and how they may be resolved differently in future.
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Unidades de Terapia Intensiva Neonatal , Terapia Intensiva Neonatal , Criança , Lactente , Recém-Nascido , Humanos , Consentimento dos Pais , Pais , FamíliaAssuntos
Objetivos , Pais , Recém-Nascido , Humanos , Unidades de Terapia Intensiva Neonatal/ética , Poder PsicológicoRESUMO
BACKGROUND: Moral distress is prevalent within the neonatal intensive care unit (NICU) and can negatively affect clinicians. Studies have evaluated the causes of moral distress and interventions to mitigate its harmful effects. However, the effects of participating in moral distress studies have not been evaluated. OBJECTIVE: To evaluate the impact of participation in a longitudinal, non-intervention research project on moral distress in the NICU. DESIGN: Clinicians who previously participated in an 18-month longitudinal research study on moral distress at two NICUs were invited to complete a questionnaire on the impact of participation. The original study required regular completion of surveys that sought predictions of death, disability and the intensity/nature of moral distress experienced by clinicians caring for extremely preterm babies. Individual and unit-wide effects were explored. Free-text responses to open-ended questions were analyzed using inductive content analysis. RESULTS: A total of 249/463 (53%) eligible clinicians participated. Participation in the original 18-month study was perceived as having a positive impact by 58% of respondents. Clinicians found articulating their views therapeutic (76%) and useful in clarifying personal opinions about the babies (85%). Free-text responses revealed the research stimulated increased reflection, validated feelings and increased dialogue amongst clinicians. Respondents generally did not find participation distressing (70%). However, a small number of physicians felt the focus of discussion shifted from the baby to the clinicians. Intensity and prevalence of moral distress did not significantly change over the 18-month period. CONCLUSIONS: Participating in moral distress research prompted regular reflection regarding attitudes toward fragile patients, improving ethical awareness. This is useful in clarifying personal views that may influence patient care. Participation also enhanced communication around difficult clinical scenarios and improved provider satisfaction. These factors are insufficient to significantly reduce moral distress in isolation.
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Médicos , Estresse Psicológico , Recém-Nascido , Humanos , Estresse Psicológico/epidemiologia , Estresse Psicológico/etiologia , Estudos Longitudinais , Princípios Morais , Unidades de Terapia Intensiva NeonatalRESUMO
Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a level of care that they believe is not in the patient's interests, resulting in moral distress. This article will discuss the complex nature of moral distress arising during the care of extremely preterm babies. It will describe the challenges and cognitive biases present when contemplating potential harms to the baby and recognize the possible costs to both healthcare provider and baby when moral distress arises. Both clinicians caring for extremely preterm babies and the families themselves can experience moral distress. This article argues that for clinicians, recognizing the range of possible sources of moral distress is vital in order to appropriately address moral distress. Moral distress may arise from a desire to protect the baby, but also from an impulse to protect oneself from the emotional burdens of care. Addressing moral distress requires reflection on the factual beliefs, experiences and personal values which lie behind the distress, both within oneself and in discussion with colleagues. Moral distress indicates that a situation is ethically challenging, but it does not necessarily mean that a wrong decision has been made.
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Lactente Extremamente Prematuro , Princípios Morais , Atitude do Pessoal de Saúde , Pessoal de Saúde , Humanos , Recém-NascidoRESUMO
Deferred consent has gained traction in some countries as a possible adjunct to prospective consent for evaluating emergency therapies in the neonatal population. This form of consent has been shown to increase recruitment of acutely and critically unwell patients, potentially reduce parent decision-making burden, and provide more robust evidence for clinical treatments where equipoise exists. However, deferred consent raises complex ethical concerns and guidelines for its use vary across different jurisdictions. The views of all stakeholders, including neonatal providers and parents, are important in determining the appropriateness of deferred consent in high-risk patients. Deferred consent may be ethically justifiable for assessing various treatments, particularly those used in emergency medical management. We present a framework based on neonatal deferred consent trials that assess both non-drug and drug interventions, our experience conducting deferred consent neonatal studies in Australia, and the views of providers and parents on how to best implement deferred consent in the neonatal research setting.
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Consentimento Livre e Esclarecido , Pais , Humanos , Recém-Nascido , Estudos ProspectivosRESUMO
BACKGROUND AND OBJECTIVES: To longitudinally examine the nature of moral distress (MoD) experienced by clinicians caring for extremely low gestational age neonates. METHODS: Neonatologists, medical trainees, and nurses were surveyed at regular intervals on their experience of MoD and their preferred level of care in relation to 99 neonates born <28 weeks' gestational age managed from birth until discharge or death in 2 tertiary NICUs. Clinicians reporting significant distress (≥6 of 10 on Wocial's Moral Distress Thermometer) were asked to provide open-ended responses on why they experienced MoD. Descriptive statistics were used to analyze frequency and intensity of MoD across different clinician characteristics. Open-ended responses were analyzed by using mixed methods. RESULTS: Over 18 months, 4593 of 5332 surveys (86% response rate) were collected. MoD was reported on 687 (15%) survey occasions; 91% of neonates elicited MoD during their hospitalization. In their open-ended answers, clinicians invoked 5 main themes to explain their distress: (1) infant-centered reasons (83%), including illness severity, predicted outcomes, and disproportionate care; (2) management plans (26%); (3) family-centered reasons (19%); (4) parental decision-making (16%); and (5) provider-centered reasons (15%). MoD was strongly associated with the perception of "parents wanting too much." Neonatologists experienced less distress and were more likely than nurses and trainees to align preferred levels of care with family wishes. CONCLUSIONS: The majority of preterm infants will generate some MoD; however, it is rarely shared and of a sustained nature. The main constraint reported by clinicians was "parents wanting too much," leading to disproportionate care.
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Atitude do Pessoal de Saúde , Princípios Morais , Enfermagem Neonatal , Neonatologistas/psicologia , Neonatologia , Enfermeiros Neonatologistas/psicologia , Angústia Psicológica , Feminino , Humanos , Lactente Extremamente Prematuro , Recém-Nascido , Estudos Longitudinais , Masculino , AutorrelatoRESUMO
OBJECTIVE: To evaluate the effectiveness of interventions to mitigate the harmful effects of moral distress experienced by nursing and medical clinicians working in the intensive care setting. DESIGN: Eligible studies were identified from searches of PubMed, EBSCO (Academic Search Complete, CINAHL and Medline) and Scopus. Included studies were published prior to 20 August 2020. RESULTS: Twelve studies were included in this review comprising three randomised controlled trials, seven quasi-randomised trials and two observational studies. Nine studies reported interventions targeting only nurses while three included both nurses and doctors. The types of interventions identified included: moral empowerment programs, end-of-life educational programs, reflective exercises through individual narrative writing or group reflective debriefing, multidisciplinary case debriefing meetings integrated into clinical practice and moral resiliency training. Due to the overall low methodological quality and high risk of bias, no single intervention may be considered efficacious in managing moral distress. CONCLUSIONS: There is weak evidence that some currently available interventions reduce the moral distress experienced by intensive care health care providers. Larger randomised trials involving all intensive healthcare clinicians are required to evaluate multifaceted interventions.
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Pessoal de Saúde , Princípios Morais , Cuidados Críticos , Atenção à Saúde , HumanosRESUMO
A 530-g girl born at 22 weeks and 6 days' gestation (determined by an ultrasound at 11 weeks) was admitted to the NICU. Her mother had received prenatal steroids. At 12 hours of age, she was stable on low ventilator settings. Her blood pressure was fine. Her urine output was good. After counseling, her parents voiced understanding of the risks and wanted all available life-supporting measures. Many nurses were distressed that doctors were trying to save a "22-weeker." In the past, 4 infants born at 22 weeks' gestation had been admitted to that NICU, and all had died. The attending physician on call had to deal with many sick infants and the nurses' moral distress.
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Idade Gestacional , Cuidado do Lactente/ética , Lactente Extremamente Prematuro , Unidades de Terapia Intensiva Neonatal/ética , Corpo Clínico Hospitalar/ética , Enganação , Feminino , Humanos , Lactente , Recém-Nascido , Futilidade Médica/ética , Corpo Clínico Hospitalar/psicologia , Recursos Humanos de Enfermagem Hospitalar/psicologia , Gravidez , Estresse Psicológico , ConfiançaRESUMO
OBJECTIVE: Vein of Galenaneurysmal malformation (VGAM) is a rare but important congenital malformation presenting to neonatal intensive care units (NICUs), and with a change from surgical to endovascular management, survival for this condition has improved. However, there is little reported about the medical management decisions of infants with this condition and the associated long-term neurodevelopmental outcomes. We aim to report a single centre experience of both acute treatment and long-term outcomes of VGAM for those infants admitted to our NICU soon after birth. DESIGN: Retrospective cohort study over a 15-year period from 2001 to 2015 inclusive. SETTING: A quaternary NICU at The Royal Children's Hospital, Melbourne, Australia. PARTICIPANTS: 24 newborn infants referred for management of VGAM. There were no eligibility criteria set for this study; all presenting infants were included. INTERVENTIONS: None. MAIN OUTCOMES MEASURES: Clinical neuroimaging data were gathered. Surviving children were formally assessed with a battery of tests administered by a neuropsychologist and occupational therapist/physiotherapist at various ages across early to middle childhood. RESULTS: Fifteen neonates with VGAM did not survive beyond their NICU admission. 10 of these were not offered endovascular intervention. Of the nine surviving infants, only one had a normal neurodevelopmental outcome. CONCLUSIONS: The mortality of VGAM presenting in the neonatal period was high, and rates of normal neurodevelopmental outcome for survivors were low. These findings contribute to our understanding of which neonates should be treated and highlights the importance of providing clinical neurodevelopmental follow-up to survivors beyond their infant years.
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Transtornos do Neurodesenvolvimento/fisiopatologia , Malformações da Veia de Galeno/fisiopatologia , Austrália/epidemiologia , Estado Terminal , Feminino , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Masculino , Transtornos do Neurodesenvolvimento/diagnóstico por imagem , Transtornos do Neurodesenvolvimento/mortalidade , Neuroimagem , Prognóstico , Estudos Retrospectivos , Malformações da Veia de Galeno/diagnóstico por imagem , Malformações da Veia de Galeno/mortalidadeRESUMO
AIM: To develop a Neonatal Intervention Score (NIS) to describe the clinical trajectory of a neonate throughout their neonatal intensive care unit (NICU) admission. METHODS: The NIS was developed by modifying the Neonatal Therapeutic Intervention Scoring System (NTISS) to reflect illness severity, dependency on life-sustaining interventions and overall life trajectory on a longitudinal basis, rather than illness burden. Validity for longitudinal use within the NICU was tested by calculating the score for 99 preterm babies born less than 28 weeks at predetermined time points throughout their admission to tertiary level care at two institutions. RESULTS: A total of 1333 NISs were analysed, ranging from 0 to 32.5 (mean 9.77, SD 5.4). Internal consistency (Cronbach alpha) reached 0.8. NIS moderately correlated to both SNAPPE-II and SNAP-II (Spearman's rho = 0.47, p =< 0.001) within the first 24 hours. CONCLUSION: The NIS is a useful and reliable descriptive tool of relative illness severity and degree of medical interventions throughout a baby's admission. Integrating a longitudinal description of medical dependency of a patient may assist both clinical and ethical decision-making and empirical research by providing an objective account of a baby's clinical trajectory. Establishment of validity within individual institutions is required.
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Unidades de Terapia Intensiva Neonatal/estatística & dados numéricos , Índice de Gravidade de Doença , Feminino , Mortalidade Hospitalar , Humanos , Lactente , Mortalidade Infantil , Recém-Nascido , Recém-Nascido Prematuro , MasculinoRESUMO
When healthcare professionals feel constrained from acting in a patient's best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines, including physicians, come to be "constrained" in their actions is still lacking. This paper will examine how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized. Appreciation of these dynamics may assist in cross-discipline sensitivity, enabling more constructive dialogue and collaboration.
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Atitude do Pessoal de Saúde , Tomada de Decisões , Assistência ao Paciente/ética , Participação do Paciente , Médicos/psicologia , Estresse Psicológico , Esgotamento Profissional , Tomada de Decisões/ética , Humanos , Princípios Morais , Médicos/éticaRESUMO
The neonatal intensive care unit is recognized as a stressful environment; the nature of caring for sick babies with uncertain outcomes and the need to make difficult decisions results in a work place where moral distress is prevalent. According to the prevailing definition, moral distress occurs when the provider believes that what is "done" is not the right course of action, with an element of constraint: the provider has no choice but to act this way. This can lead to adverse outcomes, including burnout and a change of career. Traditionally, moral distress was considered to represent a misuse of power that forced nurses (typically) to provide burdensome treatments they believed not in the patient's best interests. Today, with shared decision-making, it is rare for physicians to act in a purely paternalistic fashion and impose management strategies on a team and parents. However, in the grey zones, it is not unusual for individuals with different values to disagree on a course of treatment. Healthcare professionals across all disciplines may feel constrained despite there being no identified misuse of power. We argue for a broader understanding of moral distress and an awareness that maladaptive responses to moral distress may result in "transference" of moral distress on to other healthcare professionals and even on to the families of babies for whom we have a duty of care. Strategies for dealing with moral distress exist. An appreciation of these dynamics will enable providers to reduce the negative impacts of moral distress while also using it as a vehicle for constructive discussion and progressive thought that will better serve our patients and our colleagues.