Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years
child; article; female; human; major clinical study; male; palliative therapy; hospice; uncertainty; school child; fetus; retrospective study; medical record review; infant; heart; hospital mortality; trisomy 18; prenatal period
Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families throughout the antenatal period. Methods: A single-centre retrospective chart review of all antenatal referrals to a quaternary children's palliative care service over a 14-year period from 2007 to 2021. Results: One hundred fifty-nine antenatal referrals were made to the PPC team over a 14-year period, with increasing referrals over time. Referrals were made for a broad spectrum of diagnoses with cardiac conditions (29% of referrals) and Trisomy 18 (28% of referrals) being the most prevalent. 129 referrals had contact with the PPC team prior to birth and 60 had a personalised symptom management plan prepared for the baby prior to birth. Approximately one third (48/159) died in utero or were stillborn. Only a small number of babies died at home (n = 10) or in a hospice (n = 6) and the largest number died in hospital (n = 72). 30 (19% of all referrals) were still alive at the time of the study aged between 8 months and 8 years. Conclusions: Specialist PPC teams can play an important role in supporting families during the antenatal period following a diagnosis of a life-limiting fetal condition and demand for this service is increasing. A large proportion of the cases referred will not survive to the point of delivery and a number of babies may survive much longer than predicted. PPC teams can be particularly helpful navigating the uncertainty that exists in the antenatal period and ensuring that plans are made for the full spectrum of possible outcomes.
Bertaud S; Brightley G; Crowley N; Craig F; Wilkinson D
BMC Palliative Care
2023
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/10.1186/s12904-023-01302-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01302-5</a>
End-of-life care over four decades in a quaternary neonatal intensive care unit
end-of-life; neonatal; NICU
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.
Barry A; Prentice T; Wilkinson D
Journal of Paediatrics and Child Health
2022
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/https://doi.org/10.1111/jpc.16296" target="_blank" rel="noreferrer noopener">https://doi.org/10.1111/jpc.16296</a>
Individualised decision making: interpretation of risk for extremely preterm infants-a survey of UK neonatal professionals
ethics; neonatology; perinatal; preterm; resuscitation
BACKGROUND: The British Association of Perinatal Medicine (BAPM) published a revised framework for perinatal management of extremely preterm infants (EPIs) in 2019. We aimed to assess UK neonatal professionals' interpretation of elements of this framework, as well as the consistency of their estimates of outcome for EPIs. METHOD(S): An online survey gave participants five cases involving anticipated extremely preterm birth with different favourable and unfavourable risk factors. Respondents were asked to assign a risk category and management option using the BAPM framework and to estimate the chance of survival if the baby received active resuscitation and the chance of severe disability if they survived. RESULT(S): Respondents were consistent in interpretation of risk categories. The majority would follow parental wishes about management. Management decisions did not always correspond with risk assessment, with less inclination to recommend palliative (comfort) care. There were wide estimates of survival or severe disability (5%-90%) with consultants providing lower estimates of severe disability than other groups. CONCLUSION(S): UK neonatal professionals deferred to parental wishes in the cases presented, indicating an emphasis on shared decision making. However, they did not necessarily use the risk stratification approach for management decisions. Variation in estimates of outcome raises questions about the accuracy of informed decision making and suggests support is needed for UK clinicians to incorporate risk factors into individualised counselling. There may be value in validating existing online risk calculators for UK infants or in developing a UK specific risk model. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
Wood K; Di Stefano LM; Mactier H; Bates SE; Wilkinson D
Archives of disease in childhood
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/10.1136/archdischild-2021-322147" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-322147</a>
Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals
ethics; neonatology; palliative care; preterm neonate; resuscitation
BACKGROUND: Decisions about treatments for extremely preterm infants (EPIs) born in the 'grey zone' of viability can be ethically complex. This 2020 survey aimed to determine views of UK neonatal staff about thresholds for treatment of EPIs given a recently revised national Framework for Practice from the British Association of Perinatal Medicine. METHODS: The online survey requested participants indicate the lowest gestation at which they would be willing to offer active treatment and the highest gestation at which they would withhold active treatment of an EPI at parental request (their lower and upper thresholds). Relative risks were used to compare respondents' views based on profession and neonatal unit designation. Further questions explored respondents' conceptual understanding of viability. RESULTS: 336 respondents included 167 consultants, 127 registrars/fellows and 42 advanced neonatal nurse practitioners (ANNPs). Respondents reported a median grey zone for neonatal resuscitation between 22(+1) and 24(+0) weeks' gestation. Registrars/fellows were more likely to select a lower threshold at 22(+0) weeks compared with consultants (Relative Risk (RR)=1.37 (95% CI 1.07 to 1.74)) and ANNPs (RR=2.68 (95% CI 1.42 to 5.06)). Those working in neonatal intensive care units compared with other units were also more likely to offer active treatment at 22(+0) weeks (RR=1.86 (95% CI 1.18 to 2.94)). Most participants understood a fetus/newborn to be 'viable' if it was possible to survive, regardless of disability, with medical interventions accessible to the treating team. CONCLUSION: Compared with previous studies, we found a shift in the reported lower threshold for resuscitation in the UK, with greater acceptance of active treatment for infants <23 weeks' gestation.
Di Stefano LM; Wood K; Mactier H; Bates SE; Wilkinson D
Archives of Disease in Childhood - Fetal and Neonatal Edition
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/10.1136/archdischild-2020-321273" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-321273</a>
Valuing life and evaluating suffering in infants with life-limiting illness
Quality of life; Withholding treatment; Cognition disorders; Infancy; Newborns; Value of life
In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her life if she will nevertheless die in infancy or very early childhood? Second, how does profound cognitive impairment affect the balance of positives and negatives in a child's future life? Third, if the life of a child with life-limiting illness is prolonged, how much suffering will she experience and can any of it be alleviated? Is there a risk that negative experiences for such a child (suffering) will remain despite the provision of palliative care? We argue that both the subjective and objective components of well-being for children could be greatly reduced if they are anticipated to have a short life that is affected by profound cognitive impairment. This does not mean that their overall well-being will be negative, but rather that there may be a higher risk of negative overall well-being if they are expected to experience pain, discomfort, or distress. Furthermore, we point to some of the practical limitations of therapies aimed at relieving suffering, such that there is a risk that suffering will go partially or completely unrelieved. Taken together, these considerations imply that some life-prolonging treatments are not in the best interests of infants with severe life-limiting illness.
Wilkinson D; Zayegh A
Theoretical Medicine and Bioethics
2020
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<a href="http://doi.org/10.1007/s11017-020-09532-x" target="_blank" rel="noreferrer noopener">10.1007/s11017-020-09532-x</a>
What Information Do Parents Need When Facing End-of-life Decisions For Their Child? A Meta-synthesis Of Parental Feedback
Communication;Decision Making;Health Knowledge Attitudes Practice;Hope;Humans;Intensive Care Units Pediatric/organization & Administration;Needs Assessment;Parents/education;Parents/psychology;Terminal Care/methods;Terminal Care/psychology;Time Factors
BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their main source of information, they also turn to a variety of additional sources of written information in an attempt to source facts, discover solutions, and find hope. Much has been written about the needs of parents faced with end-of-life decisions for their child but little is known about the written information needs such parents have. Research in the adult intensive care context has shown that written resources impact positively on the understanding of medical facts, including diagnoses and prognoses, communication between families and healthcare professionals, and the emotional wellbeing of families after their relative's death. METHODS: A meta-synthesis of predominantly empirical research pertaining to features which assist or impede parental end-of-life decisions was undertaken to provide insight and guidance in our development of written resources (short print and online comprehensive version) for parents. RESULTS: The most prominently cited needs in the literature related to numerous aspects of information provision; the quantity, quality, delivery, and timing of information and its provision impacted not only on parents' ability to make end-of-life decisions but also on their emotional wellbeing. The meta-synthesis supports the value of written materials, as these provide guidance for both parents and healthcare professionals in pertinent content areas. CONCLUSIONS: Further research is required to determine the impact that written resources have on parental end-of-life decision-making and on parents' wellbeing during and after their experience and time in the hospital environment.
Xafis V; Wilkinson D; Sullivan J
Bmc Palliative Care
2015
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="https://doi.org/10.1186/s12904-015-0024-0" target="_blank" rel="noreferrer">10.1186/s12904-015-0024-0</a>
Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions
Adult;Advance Care Planning/ethics;Advance Care Planning/standards;Attitude Of Health Personnel;Australia;Child;Consumer Health Information/methods;Decision Making/ethics;Humans;Internet;Parents/education;Parents/psychology;Pilot Projects;Professional-family Relations;Publications;Terminal Care/methods;Terminal Care/standards
BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. AIM: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. DESIGN: A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. SETTING/PARTICIPANTS: Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. RESULTS: Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. CONCLUSIONS: The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.
Xafis V; Gillam L; Hynson J; Sullivan J; Cossich M; Wilkinson D
Journal Of Palliative Medicine
2015
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).
10.1089/jpm.2015.0048
A Good Resource For Parents, But Will Clinicians Use It?: Evaluation Of A Resource For Paediatric End-of-life Decision Making
BACKGROUND: Communication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians' views on the acceptability and usefulness of a handbook and web-based resource (Caring Decisions) that was designed as an aid for parents facing end-of-life decisions for their child. METHODS: Qualitative interviews were conducted with a range of health professionals who provide care to children facing life-limiting conditions. RESULTS: Data analysis confirmed the acceptability and usefulness of the resource. Two major themes were revealed: 1. Family empowerment, with sub-themes Giving words and clarity, Conversation starter, 'I'm not alone in this', and A resource to take away, highlighted how the resource filled a gap by supporting and enabling families in a multitude of ways; 2. Not just for families, with sub-themes A guide for staff, When to give the resource?, How to give the resource and Who should give the resource?, explored the significant finding that participants viewed the resource as a valuable tool for themselves, but its presence also brought into relief potential gaps in communication processes around end-of-life care. CONCLUSION: The interview data indicated the positive reception and clear value and need for this type of resource. However, it is likely that successful resource uptake will be contingent on discussion and planning around dissemination and use within the health care team.
Delany C; Xafis V; Gillam L; Hughson JA; Hynson J; Wilkinson D
Bmc Palliative Care
2017
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Fifteen-minute Consultation: Perinatal Palliative Care
Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic multidisciplinary support for families. In this paper we define and describe one model for providing perinatal palliative care, drawing on the personal and professional experience of the authors. Copyright � 2016 BMJ Publishing Group Ltd & Royal College of Paediatrics and Child Health.
Sidgwick P; Harrop E; Kelly B; Todorovic A; Wilkinson D
Archives Of Disease In Childhood
2016
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Ethical Dilemmas In Postnatal Treatment Of Severe Congenital Hydrocephalus.
Decision Making/ethics; Ethics Medical; Female; Humans; Hydrocephalus/diagnosis; Hydrocephalus/therapy; Infant; Infant Premature; Intensive Care Neonatal/ethics; Male; Medical Futility/ethics; Postnatal Care/ethics; Quality Of Life; Severity Of Illness Index; Ventriculoperitoneal Shunt/ethics; Withholding Treatment/ethics
Children; Hydrocephalus; Medical Ethics; Medical Futility; Neonatal Intensive Care Unit; Withdrawing Treatment
Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with severe disability. It might be thought that, should parents agree, palliative care and limitation of treatment would be clearly permissible on the basis of the best interests of the infant. However, severe congenital hydrocephalus illustrates some of the neuroethical challenges in pediatrics. The permissibility of withholding or withdrawing treatment is limited by uncertainty in prognosis and the possibility of "palliative harm." Conversely, although there are some situations in which treatment is contrary to the interests of the child, or unreasonable on the grounds of limited resources, acute surgical treatment of hydrocephalus rarely falls into that category.
Wilkinson D
Cambridge Quarterly Of Healthcare 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).
Death Talk: Basic Linguistic Rules And Communication In Perinatal And Paediatric End-of-life Discussions.
Communication; Death; Decision Making; Female; Humans; Linguistics; Male; Parents/psychology; Pediatrics; Perinatal Death; Pregnancy; Professional-family Relations; Terminal Care/methods; Terminally Ill
Consumer Health Information; Decision-making; End-of-life Care; Health Communication
OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.
METHODS:
Grice's Cooperative Principle and associated maxims, which enable effective communication, are examined in relation to communication deficiencies that parents have identified when making end-of-life decisions for the child. Examples from the literature are provided to clarify the impact of failing to observe the maxims on parents and on clinician/parent communication.
RESULTS:
Linguistic theory applied to the literature on parental concerns about clinician/parent communication shows that the violation of the maxims of quantity, quality, relation, and manner as well as the stance that some clinicians adopt during discussions with parents impact on clinician/parent communication and lead to distrust, anger, sadness, and long-term difficulties coping with the experience of losing one's child.
CONCLUSION:
Parents have identified communication deficiencies in end-of-life discussions. Relating these communication deficiencies to linguistic theory provides insight into communication difficulties but also solutions.
PRACTICE IMPLICATIONS:
Gaining an understanding of basic linguistic theory that underlies human interactions, gaining insight into the communication deficiencies that parents have identified, and modifying some communication behaviours in light of these with the suggestions made in this article may lead to improved clinician/parent communication.
Xafis V; Watkins A; Wilkinson D
Patient Education And Counseling
2016
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Dying Later, Surviving Longer
Life; Pediatrics; Child; Death; Mortality; Decision Making; Intensive Care; Chronic Illnesses; Pain; Demographics; Children & Youth
Epidemiology; Ethics; Intensive Care; Mortality
Most children who die in the UK have an underlying chronic illness, and the majority of these deaths take place in a paediatric intensive care unit (PICU).1 The overall community burden of paediatric chronic illness is increasing as the population expands and as children with chronic conditions live longer. Improvements in public health measures, and in the recognition and management of paediatric critical illness, mean that children with chronic conditions are increasingly the majority population in PICU.
Plunkett and Parslow describe a shift in the timing of death in PICUs in England and Wales over the last decade.2 They observed an increase in the average length of stay for children who died (about 3 days longer, on average, in 2013 than in 2003) and a corresponding increase in the proportion of children dying after more than 4 weeks of intensive care; in 2013, approximately 12% of deaths in PICU occurred late (after 28 days), compared with only about 8% a decade earlier.
What should we make of this finding? Does it represent a failure of end-of-life decision-making? Plunkett and Parslow point to this, suggesting that children with life-limiting illnesses are now dying after a long PICU admission rather than experiencing an early death in PICU.
Wilkinson D; J Weitz
Archives Of Disease In Childhood
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/archdischild-2016-310637