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Challenges in managing parental expectations in paediatric care
Abstract
Given the recent number of controversial cases featured in the media, it is timely to consider the management of parental expectations in paediatric care. What is sadly overlooked in the controversy is the usual excellent working relationship formed by treating child health professionals, parents (those with parental responsibility) and children themselves in tackling really tough situations. We are able to do more and more to tackle previously deadly diseases, and yet the burden of our treatments is undeniably higher. At the same time, social changes and ready access to information have led to a necessary reduction in medical paternalism, and more empowered and knowledgeable patients. We review how things have become very challenging in this arena in the UK over the last decades, and consider the issues surrounding disagreements and conflict. On the background of population shifts, religious diversity and populism, parental expectations now vary dramatically given the same situation. The challenge is still met by communicating, listening with empathy but finally by adhering to the basic tenet of Article 3 of the UN Convention of the Rights of the Child – ‘The best interests of children must be the primary concern in making decisions that may affect them.’
... 14 All these factors can aggravate parental stress and challenge the central parental role. 18 Recent research showed that families in ICU primarily feel sadness, anger and fear and use a vast array of individual coping strategies. 19 Despite this, two-thirds experienced depression, anxiety and post-traumatic stress during the admission and one half of this group still experienced these symptoms three months post admission. ...
... 15,22 Concurrently, a sociocultural shift in western societies has promoted respect for autonomy and the rights of individuals to have their choices and wishes prioritised. 18 The uptake of FCC has reflected and amplified these shifts. ...
... In contrasting 'centeredness' of patient (PCC), child (CCC) and FCC, current health models may be confusing for HCPs. 18 PCC and CCC focus predominantly on the individual 'rights' and needs of patients; 24 and arguably all inadequately acknowledge that caring for staff is integral to caring for children and families. ...
The paediatric intensive care unit (PICU) is a high-stress environment for parents, families and health care professionals (HCPs) alike. Family members experiencing stress or grief related to the admission of their sick child may at times exhibit challenging behaviours; these exist on a continuum from those that are anticipated in context, through to unacceptable aggression. Rare, extreme behaviours include threats, verbal or even physical abuse. Both extreme and recurrent ‘subthreshold’ behaviours can cause significant staff distress, impede optimal clinical care and compromise patient outcomes. The unique PICU environment and model of care may magnify stressors for both families and staff and the family-centred approach to care (FCC) central to paediatric practice, may also contribute to contextual challenges. Pervasive conflict in paediatric healthcare is harmful for patients, families, PICU staff and the institution more broadly. We propose that caring for children and caring for staff are inseparable goals and the latter has been inadvertently but detrimentally deprioritised as FCC has become a primary focus. A transparent and graded hierarchy of responses to variable levels of challenging behaviour is necessary to ensure that families are supported, while HCPs remain protected in the workplace. This requires establishing firm limits supported by all teams and levels of the institution. As such, we aim to identify and clarify the context and impact of challenging parent and family behaviour in the PICU and to offer potential, proactive mitigation strategies, based on reflections and stakeholder discussion following recent clinical challenges and experiences in our unit.
... [6][7][8] Caring for pediatric patients has its own set of unique challenges because shared decision-making with parents and guardians adds complexity and treatment decisions are impacted by social, religious, and cultural beliefs of the child, family, and treating clinicians. [9][10][11] Successful conflict management requires a fundamental shift in attitude toward conflict. Conflict is often viewed as negative because poorly managed conflicts lead to frustration, low job satisfaction, high staff turnover, patient safety issues, and poor patient outcomes. ...
... 34 Religious and cultural beliefs of the child, family, and health care team can profoundly impact treatment decisions. 11 Parents or guardians are often involved in shared medical decision-making for their child, which can increase the potential for conflict. 9,10 Parents may disagree with each other and the clinical care teams regarding the best course of action. ...
Effective communication is essential in today’s health care environment, and poor communication can lead to conflict among health care providers. Differences in cultures and beliefs can further incite conflict among health care team members, families, and patients. Pediatric patient care has a higher potential for conflict because decision-making responsibilities are shared among patients, parents/guardians, and clinicians. It is important to understand the phases and types of conflict because each conflict situation requires a different approach to optimize management. Equally important is an understanding of styles used by individuals to manage conflict. The Thomas–Kilmann Conflict Mode Instrument and the Dutch Test for Conflict Handling are 2 validated tools used to assess conflict management styles. The different styles include competing/forcing, collaborating/problem solving, compromising, avoiding, and yielding/accommodating. A successful physician should be able to identify the phases and types of conflict to use the conflict management approach most suitable for the given conflict. There are several techniques for managing conflict in the pediatric operating room. Acknowledging and managing one’s own emotions during conflict is a pivotal first step toward diffusing the situation. Active listening is an important communication skill that improves team dynamics. Aligning the interests of the parties involved in conflict will encourage collaborative problem solving. Cultural competency training can improve communication and conflict management skills. Effective conflict management through formal education of all perioperative team members can lead to improved communication and teamwork and better patient outcomes.
... Importantly, we highlight that excellent therapeutic relationships and rapport are usually formed between paediatric healthcare professionals (HCPs), parents, carers and young people themselves, despite experiencing stressful, life-changing circumstances, and that major conflict remains rare. 1 Further, in PHDM, there is a continuum from mild disagreement to intractable dissent, and our fundamental aim is to assist HCPs experiencing variable levels of disagreement in practice. Research suggests preventing entrenched conflict by developing and identifying timely, feasible pathways to effective resolution is ideal, and improves outcomes for all parties. ...
In this article, we explore alternative conflict resolution strategies to assist families and clinicians in cases of intractable dissent in paediatric health care decision-making. We focus on the ethical and legal landscape using cases from the Australian jurisdiction in New South Wales, while referencing some global sentinel cases. We highlight a range of alternative means of addressing conflict, including clinical ethics support, and contrast and contextualise facilitative or interest-based mediation, concluding that legal intervention via the courts can be protracted and distressing and should be a ‘last resort’. We acknowledge many might view this as the current status quo, but we go further to recommend strategies optimal for all parties to recognise early signs of conflict and prevent its harmful escalation. While more empirical research is needed, we contend that interest-based mediation may be a valuable adjunctive method of conflict resolution. If judiciously distinguished from and utilised with clinical ethical support, it can be an effective tool to address dissent and its negative sequelae in paediatric healthcare decision-making.
Purpose
Research shows that physician empathy can improve patients' reporting of symptoms, participation in care, compliance, and satisfaction; however, success in harnessing these advantages in the ICU hinges on a myriad of contextual factors. This study describes the current state of knowledge about intensivists' empathy.
Methods
A scoping review was conducted across six databases and grey literature to clarify intensivists' experiences of empathy and identify directions of future inquiries. The search had no date limits and was specific to empathy, intensivists, and ICU environments. Results were blindly and independently reviewed by authors.
Results
The search yielded 628 manuscripts; 45 met inclusion criteria. Three overarching themes connected the manuscripts: (1) the risks and benefits of empathy, (2) the spectrum of connection and distance of intensivists from patients/families, and (3) the facilitators and barriers to empathy's development.
Conclusion
Empathy among intensivists is not a dichotomous phenomenon. It instead exists on continua. Four steps are recommended for optimizing empathy in the ICU: clearly defining empathy, addressing risks and benefits transparently, providing education regarding reflective practice, and developing supportive environments. Overall, this review revealed that the state of knowledge about empathy as experienced by intensivists still has room to grow and be further explored.
Recent changes in paediatrics with the growing provision of life-sustaining interventions in both complex and rare diseases have increased the prevalence of chronic and life-limiting conditions in children. This has, in turn, led to changes in the population of children cared for and, consequently, the modes of death in paediatric intensive care units. In many countries, children with chronic conditions now constitute a large proportion of both admissions to paediatric intensive care units and the deaths occurring there. Managing end-of-life decisions and care is an integral part of practice and constitutes an imperative skill for all professionals working in paediatric intensive care. The process of end-of-life care involves many uncertainties and ethical, legal, religious, cultural and social considerations. A child's death will always be a tragic and challenging experience, but the way it is managed can influence the impact it has on everyone involved. This article provides a review of the issues surrounding the end-of-life process for patients in paediatric intensive care units and explores the challenges and considerations involved in decision-making to withhold or withdraw life-sustaining therapy. We discuss the practicalities of managing and optimising end-of-life care within and beyond the paediatric intensive care unit and the different aspects that healthcare teams need to address before and after a child's death.
Paediatric haematology began to establish itself as a speciality in the UK just over 60 years ago. In that time, clinical trials involving all the specialist centres in the country, and based on scientific advances, have dramatically improved the outlook for children with a range of malignant and non-malignant disorders, but particularly acute leukaemia. As in many specialties, multidisciplinary teams have played a major role in delivering these advances. With these structures in place at a national level, perhaps, of all specialities, paediatric haematology is poised to benefit from the new developments in precision medicine, gene editing and immunotherapy. © 2020 The Authors. British Journal of Haematology published by British Society for Haematology and John Wiley & Sons Ltd.
Background
Doctors sometimes encounter parents who object to prescribed treatment for their children, and request suboptimal substitutes be administered instead (suboptimal being defined as less effective and/or more expensive). Previous studies have focused on parental refusal of treatment and when this should be permitted, but the ethics of requests for suboptimal treatment has not been explored.
Methods
The paper consists of two parts: an empirical analysis and an ethical analysis. We performed an online survey with a sample of the general public to assess respondents’ thresholds for acceptable harm and expense resulting from parental choice, and the role that religion played in their judgement. We also identified and applied existing ethical frameworks to the case described in the survey to compare theoretical and empirical results.
Results
Two hundred and forty-two Mechanical Turk workers took our survey and there were 178 valid responses (73.6%). Respondents’ agreement to provide treatment decreased as the risk or cost of the requested substitute increased (p<0.001). More than 50% of participants were prepared to provide treatment that would involve a small absolute increased risk of death for the child (<5%) and a cost increase of US$<500, respectively. Religiously motivated requests were significantly more likely to be allowed (p<0.001). Existing ethical frameworks largely yielded ambiguous results for the case. There were clear inconsistencies between the theoretical and empirical results.
Conclusion
Drawing on both survey results and ethical analysis, we propose a potential model and thresholds for deciding about the permissibility of suboptimal treatment requests.
A balance needs to be struck between facilitating compassionate access to innovative treatments for those in desperate need, and the duty to protect such vulnerable individuals from the harms of untested/unlicensed treatments. We introduced a principle‐based framework (2009) to evaluate such requests and describe its application in the context of recently evolved UK, US and European regulatory processes.
24 referrals (20 individual; four group) were received by our quaternary children's hospital Clinical Ethics Committee (CEC) over the 5‐year period (2011‐16). The CEC‐rapid response group evaluated individual cases within 48‐hours; the main referrers being haematology/oncology, immunology or transplant services (14). Most requests were for drug/vaccine/pre‐trial access (13) or biological/cellular therapies (8). The majority of individual requests were approved (19/20); neutral or negative opinions were given in 5, including 3 group requests.
Recently evolved regulatory processes share common criteria and conditions to our framework including: demonstration of clinical need; sound scientific basis with lack of viable alternative; risks‐benefit/best interests evaluation; arrangements for fully informed consent; no compromise of arrangements to test treatment for licensing purposes; consideration of resource implications. There are differences between individual processes and with our framework, with respect to procedures, scope, application format, costs and obligation to make available all outcome data.
Our experience has emphasized the need for an independent, principled, consistent, fair and transparent response to the increasing demand for innovative treatment on a compassionate basis. We believe that there is a need for harmonization of the recent proliferation of regulation and legislation in this area.
There is controversy about how to manage requests by patients or surrogates for treatments that clinicians believe should not be administered.
This multisociety statement provides recommendations to prevent and manage intractable disagreements about the use of such treatments in intensive care units.
The recommendations were developed using an iterative consensus process, including expert committee development and peer review by designated committees of each of the participating professional societies (American Thoracic Society, American Association for Critical Care Nurses, American College of Chest Physicians, European Society for Intensive Care Medicine, and Society of Critical Care).
The committee recommends: (1) Institutions should implement strategies to prevent intractable treatment conflicts, including proactive communication and early involvement of expert consultants. (2) The term "potentially inappropriate" should be used, rather than futile, to describe treatments that have at least some chance of accomplishing the effect sought by the patient, but clinicians believe that competing ethical considerations justify not providing them. Clinicians should explain and advocate for the treatment plan they believe is appropriate. Conflicts regarding potentially inappropriate treatments that remain intractable despite intensive communication and negotiation should be managed by a fair process of conflict resolution; this process should include hospital review, attempts to find a willing provider at another institution, and opportunity for external review of decisions.
To determine outcomes at age 3 years in babies born before 27 completed weeks' gestation in 2006, and to evaluate changes in outcome since 1995 for babies born between 22 and 25 weeks' gestation.
Prospective national cohort studies, EPICure and EPICure 2.
Hospital and home based evaluations, England.
1031 surviving babies born in 2006 before 27 completed weeks' gestation. Outcomes for 584 babies born at 22-25 weeks' gestation were compared with those of 260 surviving babies of the same gestational age born in 1995.
Survival to age 3 years, impairment (2008 consensus definitions), and developmental scores. Multiple imputation was used to account for the high proportion of missing data in the 2006 cohort.
Of the 576 babies evaluated after birth in 2006, 13.4% (n=77) were categorised as having severe impairment and 11.8% (n=68) moderate impairment. The prevalence of neurodevelopmental impairment was significantly associated with length of gestation, with greater impairment as gestational age decreased: 45% at 22-23 weeks, 30% at 24 weeks, 25% at 25 weeks, and 20% at 26 weeks (P<0.001). Cerebral palsy was present in 83 (14%) survivors. Mean developmental quotients were lower than those of the general population (normal values 100 (SD 15)) and showed a direct relation with gestational age: 80 (SD 21) at 22-23 weeks, 87 (19) at 24 weeks, 88 (19) at 25 weeks, and 91 (18) at 26 weeks. These results did not differ significantly after imputation. Comparing imputed outcomes between the 2006 and 1995 cohorts, the proportion of survivors born between 22 and 25 weeks' gestation with severe disability, using 1995 definitions, was 18% (95% confidence interval 14% to 24%) in 1995 and 19% (14% to 23%) in 2006. Fewer survivors had shunted hydrocephalus or seizures. Survival of babies admitted for neonatal care increased from 39% (35% to 43%) in 1995 to 52% (49% to 55%) in 2006, an increase of 13% (8% to 18%), and survival without disability increased from 23% (20% to 26%) in 1995 to 34% (31% to 37%) in 2006, an increase of 11% (6% to 16%).
Survival and impairment in early childhood are both closely related to gestational age for babies born at less than 27 weeks' gestation. Using multiple imputation to account for the high proportion of missing values, a higher proportion of babies admitted for neonatal care now survive without disability, particularly those born at gestational ages 24 and 25 weeks.
The prosecution of Charles Cullen, a nurse who killed at least 40 patients over a 16-year period, highlights the need to better understand the phenomenon of serial murder by healthcare professionals. The authors conducted a LexisNexis® search which yielded 90 criminal prosecutions of healthcare providers that met inclusion criteria for serial murder of patients. In addition we reviewed epidemiologic studies, toxicology evidence, and court transcripts, to provide data on healthcare professionals who have been prosecuted between 1970 and 2006. Fifty-four of the 90 have been convicted; 45 for serial murder, four for attempted murder, and five pled guilty to lesser charges. Twenty-four more have been indicted and are either awaiting trial or the outcome has not been published. The other 12 prosecutions had a variety of legal outcomes. Injection was the main method used by healthcare killers followed by suffocation, poisoning, and tampering with equipment. Prosecutions were reported from 20 countries with 40% taking place in the United States. Nursing personnel comprised 86% of the healthcare providers prosecuted; physicians 12%, and 2% were allied health professionals. The number of patient deaths that resulted in a murder conviction is 317 and the number of suspicious patient deaths attributed to the 54 convicted caregivers is 2113. These numbers are disturbing and demand that systemic changes in tracking adverse patient incidents associated with presence of a specific healthcare provider be implemented. Hiring practices must shift away from preventing wrongful discharge or denial of employment lawsuits to protecting patients from employees who kill.
Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the burden of these conditions.
Children (0-19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001-2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0-19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year.
The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Prevalence increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and "other" (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). Prevalence shows an inverse J-shaped relationship with 5 categories of deprivation, with the highest prevalence in the most deprived areas and the lowest in the second least deprived.
In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered.
When children are considered for participation in research, British and international guidelines suggest that they should provide assent in addition to their parents' consent. However, examination of these guidelines shows there is confusion regarding the concept of assent. Furthermore, the need for assent may cause problems. The guidelines should be revised: the parents of incompetent children should consent for them and competent children should consent on their own behalf.
To determine the influence of religious affiliation and culture on end-of-life decisions in European intensive care units (ICUs).
A prospective, observational study of European ICUs was performed on consecutive patients with any limitation of therapy. Prospectively defined end-of-life practices in 37 ICUs in 17 European countries studied from 1 January 1999 to 30 June 2000 were compared for frequencies, patterns, timing, and communication by religious affiliation of physicians and patients and regions.
Of the 31,417 patients 3,086 had limitations. Withholding occurred more often than withdrawing if the physician was Jewish (81%), Greek Orthodox (78%), or Moslem (63%). Withdrawing occurred more often for physicians who were Catholic (53%), Protestant (49%), or had no religious affiliation (47%). End-of-life decisions differed for physicians between regions and who had any religious affiliation vs. no religious affiliation in all three geographical regions. Median time from ICU admission to first limitation of therapy was 3.2 days but varied by religious affiliation; from 1.6 days for Protestant to 7.6 days for Greek Orthodox physicians. Median times from limitations to death also varied by physician's religious affiliation. Decisions were discussed with the families more often if the physician was Protestant (80%), Catholic (70%), had no religious affiliation (66%) or was Jewish (63%).
Significant differences associated with religious affiliation and culture were observed for the type of end of life decision, the times to therapy limitation and death, and discussion of decisions with patient families.
OBJECTIVES: The acceptability of traditional postmortem examination to bereaved families, coupled with a misguided professional view about their limited utility, has led to decrease in this ultimate investigation. Research recurrently demonstrates that postmortem examination provides clinically relevant information despite ever-improving diagnostic techniques. This review examines postmortem examination for children who die in PICU-whether consented or nonconsented (legally mandated). It explores how such investigations might provide useful information and suggests that PICU and pathology teams work together to provide information for bereaved families to either enable them to consent to postmortem interventions or understand necessary forensic processes. Newer technologies such as postmortem imaging and laparoscope-assisted/ultrasound-guided tissue sampling are reviewed, with the hope that greater acceptability to families may lead to a welcome resurgence in postmortem information for clinicians, tempered by realization that widespread acceptance of their equivalence to standard techniques by most forensic services is awaited. DATA SOURCES: Literature review. STUDY SELECTION: Journal articles describing practices in pediatric and adult postmortem examination. DATA EXTRACTION: Not available. DATA SYNTHESIS: Not available. CONCLUSIONS: The PICU team have a duty to help bereaved parents understand what postmortem investigations are available, or might be mandated, after the death of their child. A thoughtful, unhurried, and compassionate discussion should be arranged with expert pathology teams and any specialists who have cared for the child to explain how investigations can provide information about what is involved-including availability and suitability of newer techniques. This should include information about when a child's body, organs, or tissues will be available for the funeral, necessary legal procedures and how and when results will be explained to them.
The use of long-term ventilation (LTV) in children is growing in the UK and worldwide. This reflects the improvement in technology to provide LTV, the growing number of indications in which it can be successfully delivered and the acceptability of LTV to families and children. In this article, we discuss the various considerations to be made when deciding to initiate or continue LTV, describe the process that should be followed, as decided by a consensus of experienced physicians, and outline the options available for resolution of conflict around LTV decision making. We recognise the uncertainty and hope provided by novel and evolving therapies for potential disease modification. This raises the question of whether LTV should be offered to allow time for a therapy to be trialled, or whether the therapy is so unlikely to be effective, LTV would simply prolong suffering. We put this consensus view forward as an ethical framework for decision making in children requiring LTV.
This article analyses discourse on a new and ongoing online patient-support community to demonstrate how it performed populism. It demonstrates how the more than sixty thousand strong social media 'Army' formed around a terminally ill baby at the centre of a parent-judiciary-hospital legal battle, used key tropes and devices of populist rhetoric to establish lay-expertise in its performance of support for the ordinary patient and their family, de-recognizing and vilifying medical expertise and publicly funded healthcare systems built on socio-democratic ideals. The article shows how users' mobilization of populist rhetoric to reject professional expertise and public institutions, made use of established architectural features of the online community's socio-technological design, such as immediacy, remediation and protective gatekeeping. The paper argues that this fed into and out of an environment of disdain for public services and expertise in contemporary UK.
Objectives:
To examine the associations with symptoms of 1) burnout and 2) work-related posttraumatic stress, in adult and pediatric intensive care staff, focusing on the particular contributions of resilience and coping strategies.
Design:
Point prevalence cross-sectional study.
Setting:
Three adult ICUs and four PICUs.
Subjects:
Three hundred seventy-seven ICU staff.
Interventions:
None.
Measurements and main results:
Brief Resilience Scale, abbreviated Maslach Burnout Inventory, Trauma Screening Questionnaire, and Hospital Anxiety and Depression Scale. Prevalence of burnout (defined as high emotional exhaustion or high depersonalization) was 37%. Prevalence of clinically significant posttraumatic stress symptoms was 13%. There was a degree of overlap between burnout and other measures of distress, most notably for anxiety (odds ratio, 10.56; 95% CI, 4.12-27.02; p < 0.001). Hierarchical logistic regression demonstrated that self-reported resilience was strongly associated with decreased likelihood of meeting criteria for both forms of work-related distress (burnout: odds ratio, 0.52; 95% CI, 0.36-0.74; p < 0.001 and posttraumatic stress: odds ratio, 0.28; 95% CI, 0.16-0.46; p < 0.001) and that physicians were twice as likely as nurses to be at risk of reporting burnout (odds ratio, 2.11; 95% CI, 1.18-3.78; p = 0.012). After controlling for resilience, profession, and setting, the following coping strategies were independently associated with outcomes: attending debriefing reduced risk of burnout (odds ratio, 0.45; 95% CI, 0.21-0.95; p = 0.036), whereas the odds of posttraumatic stress were less if staff used talking to seniors (odds ratio, 0.43; 95% CI, 0.20-0.92; p = 0.029) or hobbies (odds ratio, 0.46; 95% CI, 0.23-0.93; p = 0.030) to cope with stress at work. Venting emotion (odds ratio, 1.92; 95% CI, 1.12-3.31; p = 0.018) and using alcohol (odds ratio, 2.30; 95% CI, 1.26-4.20; p = 0.006) were associated with a doubling in risk of reporting burnout.
Conclusions:
The use of particular coping strategies was systematically associated with symptoms of burnout and work-related posttraumatic stress in this group of intensive care staff, even after controlling for resilience and other factors. More research on how best to promote adaptive coping is needed in these challenging settings.
Tell me how you measure me, and I will tell you how I will behave.Eliyahu Moshe Goldratt1
The pursuit of patient safety is a key component of the wider endeavour to improve quality of healthcare delivery. In its contemporary form, safety is characterised as a condition where the occurrence of adverse outcomes is minimised. Our efforts to improve safety are therefore almost entirely focused on identifying adverse incidents and errors, and implementing adaptations to avoid their recurrence. This reactive approach to safety (‘Safety-I’) advocates incident reporting and root-cause analysis in order to identify adverse incidents and their causes.2 Following major reports emphasising the significant role of human error3 and the need for organisational learning from adverse incidents,4 incident reporting has become well established in the National Health Service (NHS). Trends of monitoring and reporting of adverse events are increasing.5 ,6
While this approach may achieve good results, with higher levels of adverse incident reporting correlating with a more positive safety culture,5 some studies of healthcare safety interventions suggest that the benefits of this approach are limited.7 ,8 Adverse incident reporting is widely encouraged in the NHS, but reporting rates and methods for investigating incidents vary widely between organisations. Staff and patients may not always receive feedback about incidents in which they have been involved, and there is often inadequate evidence of lessons learned or effective change implemented following incidents.9
An important consideration of Safety-I practice is the potential negative impact on healthcare workers. Staff involved in incidents may often experience the second-victim phenomenon.10 Effects on second victims may include detachment, anxiety and depression, as well as reduced clinical confidence and cognitive functioning, potentially impairing that individual's clinical performance. Some may go on to suffer long-standing issues, similar to …
In 1996, Brazier and Bridge raised the question 'is adolescent autonomy truly dead and buried' following judicial decisions which had seemed to reverse the Gillick-inspired trend for greater child autonomy in healthcare. Subsequent decisions by the courts have reinforced the view that those below 18 years in England and Wales remain children with limited rights to refuse treatment compared with adults. This is at variance with the daily experience of those working with young people who increasingly seek to actively involve them in making freely informed decisions about their healthcare, in accordance with the principles enunciated in the UN Convention of the Rights of the Child and the UK Children Acts. We review the derivation of the law in England and Wales in this area, in the light of another recent family court judgement enforcing treatment on a 'competent' child without his or her consent and ask: 'How can the Common Law and the ethical practice of those caring for young people have diverged so far?' Either young people can decide whether to have a recommended treatment, or they cannot. Given Ian McEwan's book, the Children Act, has stimulated wider social debate in this area might this be an opportune moment to seek public policy resolution with regards to healthcare decision making by young people? We argue that events since the Gillick case have underlined the need for a comprehensive review of legal policy and practice in this area. While absolute autonomy and freedom of choice are arguably inconsistent with the protection rights that society has agreed are owed to children, healthcare practitioners need clarity over the circumstances in which society expects that autonomous choices of adolescents can be overridden.
In an earlier paper entitled Harm is all you need?, I used an analysis of English law to claim that the harm threshold was an unsuitable mediator of the best interests test when deciding if parental decisions should be overruled. In this paper I respond to a number of commentaries of that paper, and extend my discussion to consider the claim that the harm threshold gives appropriate normative weight to the interests of parents. While I accept that parents have some rights over their children, I argue these are dependent on parents' duties to benefit their children. While many such benefits are understood pluralistically, and are thus within parents' ambit to decide, I claim that health benefits are ordinally different, because they play a foundational role in the flourishing of an individual. In the light of this, clinicians have the moral authority to override parental refusals, although in some cases abstaining from exercising this authority may be a pragmatic way to maintain parental engagement and ensure our ability to benefit the child in future.
One of the great success stories of modern medicine is undoubtedly the remarkable improvement in outcome for childhood cancer, achieved through the work of the co-operative groups enrolling patients in randomised controlled trials. In 1965, survival was almost zero; now 5-year survival rates exceed 80% in high-income countries. The lessons learned in the care of patients with the most common malignancy in childhood - acute lymphoblastic leukaemia - have been used in all other cancers of childhood and more recently in the management of adults. These lessons can be broadly applied in medical practice, because elements of laboratory science in all branches of pathology, as well as a deep understanding of biochemistry, physiology, pharmacology, genetics and molecular science, run through this story. Far from being a sad area of practice, paediatric haematology and oncology remains the champion of embedded clinical and translational research, diagnosis from bench to bedside and lifelong multidisciplinary management of the child and their family.
© 2015 The Author. Journal of Paediatrics and Child Health © 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians).
Inclusion in clinical trials is generally viewed as best practice for most newly diagnosed childhood cancers, but the impact on population-based survival has rarely been examined.
The population-based data were analysed for 25 853 children (66% of all registered childhood cancers) diagnosed in Britain during 1978-2005 with acute lymphoblastic leukaemia (ALL), acute myeloid leukaemia (AML), Hodgkin lymphoma, non-Hodgkin lymphoma, medulloblastoma, neuroblastoma, Wilms tumour, hepatoblastoma, osteosarcoma, Ewing sarcoma, rhabdomyosarcoma and germ-cell tumours. The Kaplan-Meier survival curves were compared by log-rank tests. Time trends were analysed by Cox regression. Separate analyses were done for children with ALL, medulloblastoma and neuroblastoma according to clinically relevant age thresholds.
Survival increased significantly during 1978-2005 for every diagnostic category; the annual reduction in risk of death ranged from 2.7% (rhabdomyosarcoma) to 12.0% (gonadal germ-cell tumours). Survival increased steadily between trial eras for ALL (age 1-14 years) and neuroblastoma (age 1-14 years), but changed little since the mid-1980s for medulloblastoma (age 0-2 years), osteosarcoma or Ewing sarcoma.
Changes in survival between trial eras parallel those reported by the relevant clinical trials. The increasing level of participation in trials, facilitated by the organisation of specialist care, has underpinned the substantial improvements in survival seen at the population level.
Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of 'miraculous' intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a 'miracle' would happen.
A paediatrician has been put on restricted duties pending an internal disciplinary investigation at a crisis hit hospital in the north of England where police are investigating the deaths of at least six patients, including four babies, in an eight month period.
Cumbria Police began their inquiry after a coroner raised concerns about the deaths of four babies and two mothers in 2008 at Furness General Hospital in Barrow-in-Furness, Cumbria.
A spokeswoman for University Hospitals of Morecombe Bay NHS Foundation Trust denied media reports that a paediatrician had been suspended but confirmed that the unnamed doctor was on restricted …
Anthracycline cardiomyopathy is of concern in children treated for acute myeloid leukaemia (AML), but there are few data on the incidence and natural history of cardiotoxicity after AML treatment in the United Kingdom, where regimens have included high anthracycline exposure.
Prevalence and predictors of cardiotoxicity were retrospectively reviewed in 124 children treated on the MRC AML 10 and AML 12 trials in a single, large centre from November 1987 to September 2004. Subclinical cardiotoxicity was defined as a shortening fraction of less than 28% and clinical cardiomyopathy as evidence of heart failure, and both were classified as late cardiotoxicity 1 year after completing first line therapy.
Cumulative survival was 61% at 10 years. The prevalence of early and late cardiotoxicity was 13.7% (95%-CI: 8.2-22.0%) and 17.4% (95%-CI: 10.9-26.8%), respectively. Early cardiotoxicity was a strong predictor (OR = 9.18; 95%-CI: 2.10-40.11; P < 0.005) and children who received salvage therapy following relapse showed a trend towards increased late cardiotoxicity (OR = 3.53; 95%-CI: 0.86-14.48; P < 0.08). Subclinical cardiotoxicity resolved spontaneously in all but one case, but clinical cardiomyopathy always required continuing therapy. Two children died of cardiomyopathy and six remained on medical therapy.
Anthracycline cardiotoxicity remains a major concern for survivors of childhood AML and correlates with early cardiotoxicity and treatment intensity. Long-term follow-up is required to fully determine the outcome for children with subclinical cardiotoxicity.
The study aims to describe the clinical profile of the adult Fontan survivor and identify the worries, symptoms, and the impact of cardiac surveillance most commonly experienced.
A descriptive, cross-sectional design was used.
The study was performed in outpatient adult and pediatric cardiology clinics in university-affiliated and private practice offices.
Fifty-four adolescent and adult patients with single ventricle congenital heart disease who have undergone the Fontan procedure participated in the study. The mean age was 26 ± 9 years with 52% female and 63% Caucasian.
Demographic and clinical data were obtained by a standard intake form and retrospective chart reviews. The Congenital Heart Disease TNO/AZL Adult Quality Of Life questionnaire was completed to assess worries, symptoms, and the impact of cardiac surveillance.
The majority were single (73%), employed or full-time students (93%), with health insurance (94%), had a single left ventricle (78%), the diagnosis of tricuspid atresia or double inlet left ventricle (59%), lateral tunnel Fontan type (44%), history of arrhythmias (76%), left ventricle ejection fraction percentage >50 (66%), oxygen saturations >90% (70%), frequent headaches (50%), scoliosis (22%), varicose veins, ascites, and liver cirrhosis (46%), normal body mass index (59%), and New York Heart Association class I (48%) and II-III (52%). Primary worries related to current health (83%), job/employment (69%), ability to work, (61%) and living independently (54%). The most bothersome symptoms were shortness of breath with ambulation (69%), dizziness (61%), and palpitations (61%).
Fontan survivors experience residua and sequelae from multiple surgical procedures and the natural disease course. Our results support the need for ongoing assessment of both physical symptoms and psychosocial concerns, and suggest the need for multiple risk factor intervention strategies that improve physical and emotional health in Fontan survivors.
To describe the characteristics of children admitted to intensive care in 1982, 1995, and 2005-2006, and their long-term outcome.
Pediatric intensive care unit in a university-affiliated children's hospital.
Information for 2005-2006 admissions was obtained from pediatric intensive care unit database, and long-term outcome was ascertained through telephone interviews. Results were compared to previous cohorts from 1982 and 1995.
A total of 4010 children were admitted on 5250 occasions. Readmissions increased from 11% for 1982 to 31% in 2005 to 2006 (p < .001). In 2005-2006, fewer children were admitted after accidents (p < .001), or with croup (p < .001), or epiglottitis (p = .01), and 8% were treated with noninvasive ventilation compared to none in 1982 (p < .0001). Among children aged > or =1 month, pediatric intensive care unit length of stay remained constant. The risk of death predicted by the Pediatric Index of Mortality (PIM) remained constant (approximately 6%) between 1995 and 2005-2006.The proportion that died in the pediatric intensive care unit fell from 11.0% in 1982 to 4.8% in 2005-2006 (p < .001). Among children aged >/=1 month, proportion admitted with a preexisting moderate or severe disability was similar: 12.0% in 1982 and 14.6% in 2005-2006 (p = .11), but the proportion with a moderate or severe disability at follow-up increased from 8.4% in 1982 to 17.9% in 2005-2006 (p < .001). The proportion of children aged > or =1 month who either died in the pediatric intensive care unit or survived with disability did not improve: it was 19.4% in 1982 and 22.7% in 2005-2006.
Over the last three decades, the length of stay in the pediatric intensive care unit and the severity of illness have not changed, but there has been a substantial reduction in pediatric intensive care unit mortality. However, the proportion of survivors with moderate or severe disability increased significantly. Some children who would have been allowed to die in 1982 and 1995 were kept alive in 2005-2006, but survived with disability. This trend has important implications for our patients and their families, and for the community as a whole.
An increasing number of patients with congenital heart disease (CHD) are entering adulthood. Although prior studies have focused on the causes of death in the pediatric population, the modes of death for adults with CHD have not been well defined. In a cross-sectional study performed on a population of 2,609 consecutive adults assessed at a CHD specialty clinic, there were adequate information available in 197 of 199 deceased patients. Mean age at death was 37 +/- 15 years. Mortality was highest in patients with congenitally corrected transposition of the great arteries (26%), tricuspid atresia (25%), and univentricular connection (23%). Youngest mean age at death was observed in patients with tricuspid atresia (27 +/- 5 years), complete transposition of the great arteries (27 +/- 7 years), pulmonary atresia (27 +/- 6 years), and aortic coarctation (29 +/- 6 years). Sudden death (26%) was the most common cause of death followed by progressive heart failure (21%) and perioperative death (18%). Postmortem examinations were performed in 77 of 197 deceased patients (39%) and provided incremental data on the mechanism of death in 22% of autopsies. Thus, the 3 major causes of death in the growing population of adults with CHD are sudden, perioperative, and progressive heart failure.
The controversies in Bristol, Alder Hey and elsewhere in the UK surrounding the removal and retention of human tissue and organs have led to extensive law reform in all three UK legal systems. This paper reports a short study of the reactions of a range of health professionals to these changes. Three main areas of ethical concern were noted: the balancing of individual rights and social benefit; the efficacy of the new procedures for consent; and the helpfulness for professional practice of the new legislation and regulation. Recognition of these concerns may help in forging a new partnership between professionals and patients and their families.
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