Finella Craig

Characteristics of deaths occurring in hospitalised children: changing trends

Background: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life-limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation. Objectives: To (1) examine the characteristics and location of death among hospitalised children, (2) investigate yearwise trends in these characteristics and (3) test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health (1997) would lead to significant changes in the characteristics of death among hospitalised children. Methods: Routine administrative data from one large tertiary-level UK children’s hospital was examined over a 7-year period (1997–2004) for children aged 0–18 years. Demographic details, location of deaths, source of admission (within hospital vs external), length of stay and final diagnoses (International Classification of Diseases-10 codes) were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test (non-parametric variables), χ2 test (proportions) and Cochran–Armitage test (linear trends). Results: Of the 1127 deaths occurring in hospital over the 7-year period, the majority (57.7%) were among infants. The main diagnoses at death included congenital malformations (22.2%), perinatal diseases (18.1%), cardiovascular disorders (14.9%) and neoplasms (12.4%). Most deaths occurred in an intensive care unit (ICU) environment (85.7%), with a significant increase over the years (80.1% in 1997 to 90.6% in 2004). There was a clear increase in the proportion of admissions from in-hospital among the ICU cohort (14.8% in 1998 to 24.8% in 2004). Infants with congenital malformations and perinatal conditions were more likely to die in an ICU (OR 2.42, 95% CI 1.65 to 3.55), and older children with malignancy outside the ICU (OR 6.5, 95% CI 4.4 to 9.6). Children stayed for a median of 13 days (interquartile range 4.0–23.25 days) on a hospital ward before being admitted to an ICU where they died. Conclusions: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study.

Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice

It is now more than 18 years since the late Professor David Baum wrote the foreword to the first Withholding and Withdrawing Life Saving Treatment in Children document. Since then the practice of paediatrics has changed radically. We are now seeing increased survival rates for infants born between 22 and 25 weeks gestation, new gene therapies stretching the boundaries of possibility, and advances in paediatric surgical techniques unimaginable in the last millennium. Against this backdrop, we are in an era of ubiquitous access to the internet and widespread use of social media. Children, young people, their parents and carers have very different knowledge and expectations of a condition and its treatment. Children and young people rightly expect to be fully involved in decisions about their treatment options wherever this is feasible and we must be able to communicate those options clearly and honestly. In this extraordinary world of medical miracles, one thing has not changed; the complexity, challenge and pain of that most difficult of decisions: is the treatment we are providing no longer in the best interests of the child? There is no technology to help us here—only guidance, discussion, and adequate time and information for truly shared decision making. Our commitment to the childs best interests must start before birth and continue through to palliative and end of life care. Even after death, a duty to provide bereavement support for parents and siblings is the natural conclusion to the difficult decisions we have made with them in the preceding weeks and months. This latest guidance on arguably the most difficult aspect of paediatric care has updated the decision making framework and incorporated more extensive advice on the direct involvement of children and young people. It also takes account of the broader possibilities flowing from developments in paediatric palliative care. This …

Pediatric Palliative Care

Pediatric palliative care (PPC) is provided to children experiencing life-limiting diseases (LLD) or life-threatening diseases (LTD). Sixty to 90% of children with LLD/LTD undergoing PPC receive opioids at the end of life. Analgesia is often insufficient. Reasons include a lack of knowledge concerning opioid prescribing and adjustment of opioid dose to changing requirements. The choice of first-line opioid is based on scientific evidence, pain pathophysiology, and available administration modes. Doses are calculated on a bodyweight basis up to a maximum absolute starting dose.Morphine remains the gold standard starting opioid in PPC. Long-term opioid choice and dose administration is determined by the pathology, analgesic effectiveness, and adverse effect profile. Slow-release oral morphine remains the dominant formulation for long-term use in PPC with hydromorphone slow-release preparations being the first rotation opioid when morphine shows severe adverse effects. The recently introduced fentanyl transdermal therapeutic system with a drug-release rate of 12.5μg/hour matches the lower dose requirements of pediatric cancer pain control. Its use may be associated with less constipation compared with morphine use. Though oral transmucosal fentanyl citrate has reduced bioavailability (25%), it inherits potential for breakthrough pain management. However, the gold standard breakthrough opioid remains immediate-release morphine. Buprenorphine is of special clinical interest as a result of its different administration routes, long duration of action, and metabolism largely independent of renal function. Antihyperalgesic effects, induced through antagonism at the κ-receptor, may contribute to its effectiveness in neuropathic pain. Methadone also has a long elimination half-life (19 [SD 14] hours) and NMDA receptor activity although dose administration is complicated by highly variable morphine equianalgesic equivalence (1:2.5–20). Opioid rotation to methadone requires special protocols that take this into account. Strategies to minimize adverse effects of long-term opioid treatment include dose reduction, symptomatic therapy, opioid rotation, and administration route change. Patient- or nurse-controlled analgesia devices are useful when pain is rapidly changing, or in terminal care where analgesic requirements may escalate. In this article, we present detailed pediatric pharmacokinetic and pharmacodynamic data for opioids, their indications and contraindications, as well as dose-administration regimens that include practical strategies for opioid switching and dose reduction. Additionally, we discuss the problem of hyperalgesia and the use of adjuvant drugs to support opioid therapy.

Paediatric palliative care: Coming of age in oncology?

Palliative care in children has been emerging as a clinical subspecialty of paediatrics for many years. It requires the knowledge and experience of a paediatrician, combined with the skills of a palliative care specialist. Both are essential, as a paediatrician may not have advanced knowledge of palliative care and a palliative care specialist is unlikely to be familiar with the complexity of working with families where the child is the patient. This paper reviews recent literature and discusses advances in the development of palliative care services for children and young people with incurable cancer. It highlights key areas where paediatric palliative care differs from that of adults and outlines the barriers to providing palliation and conducting evidence-based research in children and young people dying from cancer.

[IMPaCCT: standards of paediatric palliative care].

The needs of children and families living with life-limiting and life-threatening illness are similar across all European countries. Meeting these needs requires a comprehensive and integrative approach, with the input of a skilled multidisciplinary paediatric team. It is essential that the core standards for paediatric palliative care recommended in this document of the European Association for Palliative Care (EAPC) now be implemented across Europe.ZusammenfassungDie Bedürfnisse von Kindern mit lebenslimitierenden und lebensbedrohlichen Erkrankungen und ihrer Familien sind in ganz Europa gleich. Diesen Bedürfnissen kann nur im Rahmen eines umfassenden und integrativen Versorgungsmodells unter Beteiligung geschulter, multidisziplinärer pädiatrischer Palliativteams positiv begegnet werden. Die Autoren empfinden es als essenziell, dass zumindest die in diesem Dokument von der European Association for Palliative Care (EAPC) empfohlenen elementaren Standards der pädiatrischen Palliativversorgung in ganz Europa implementiert werden.AbstractThe needs of children and families living with life-limiting and life-threatening illness are similar across all European countries. Meeting these needs requires a comprehensive and integrative approach, with the input of a skilled multidisciplinary paediatric team. It is essential that the core standards for paediatric palliative care recommended in this document of the European Association for Palliative Care (EAPC) now be implemented across Europe.

Home management of the dying NICU patient

Intensive aggressive medical therapy does not always result in cure. For some neonates it is a futile exercise that may prolong a short life of suffering. In this article, we will discuss the babies for whom aggressive therapy may not be appropriate, and how home centered palliative care can be effectively managed. We will outline the holistic multidisciplinary approach to care, with the parents as primary carers, empowered to make informed choices in the medical care of their dying baby. Symptom management will be discussed, based on the experience of an established palliative care team. We will also look at the practical and emotional preparation for death and bereavement support for the family. We hope that more families will be given the opportunity to spend time at home with their dying baby and that, through appropriate care and support, the memory of this time will be treasured.

Underlying barriers to referral to paediatric palliative care services Knowledge and attitudes of health care professionals in a paediatric tertiary care centre in the United Kingdom

Referrals to children’s palliative care services typically occur late in the illness trajectory, with many children who would benefit not referred at all. Previous studies report health care professionals’ (HCPs) assessment of various parent-related factors as barriers to referral. We conducted a cross-sectional survey of HCPs working in a paediatric tertiary care hospital in the United Kingdom, with an established paediatric palliative care team, to explore staff perceptions of barriers, knowledge and attitudes, with the aim of developing interventions to increase patient access to palliative care services. Survey respondents evidenced good knowledge of the principles of palliative care in closed questions, but their attitudes expressed in open-text questions and reported reasons to refer to a palliative care service demonstrated an association of palliative care with death and dying. We suggest that the association of palliative care with end of life may be a modifiable factor relevant to late and non-referral and deserving of further investigation and attention in education and training.

Withdrawal of ventilatory support outside the intensive care unit: guidance for practice

Objective To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. Methods Retrospective 10-year (2003–2012) case note review of intensive care patients whose parents elected to withdraw ventilation in another setting. Demographic and clinical data revealed common themes and specific incidents relevant to local guideline development. Results 18 children (aged 2 weeks to 16 years) were considered. Three died prior to transfer. Transfer locations included home (5), hospice (8) and other (2). Primary pathologies included malignant, neurological, renal and respiratory diseases. Collaborative working was evidenced in the review including multidisciplinary team meetings with the palliative care team prior to discharge. Planning included development of symptom management plans and emergency care plans in the event of longer than anticipated survival. Transfer of children and management of extubations demonstrated the benefits of planning and recognition that unexpected events occur despite detailed planning. We identified the need for local written guidance supporting healthcare professionals planning and undertaking extubation outside the intensive care setting, addressing the following phases: (i) introduction of withdrawal, (ii) preparation pretransfer, (iii) extubation, (iv) care postextubation and (v) care postdeath. Conclusions Planned withdrawal of ventilatory support outside the intensive care setting is challenging and resource intensive. The development of local collaborations and guidance can enable parents of children dependent on intensive care to consider a preferred place of death for their child, which may be outside the intensive care unit.

Can we truly offer a choice of place of death in neonatal palliative care

In the developed world, more than 90% of neonatal deaths occur in hospital and most deaths on the neonatal unit follow the planned withdrawal of ventilation. In this paper we look at what choices of place of death can be considered, the support that is available outside the hospital environment and the practicalities of achieving parental choice. We conclude that choices of place of death are usually possible, although there may be practical or resource restraints that affect which choices are available or can be achieved. Where choice is currently offered, the proportion of hospital deaths is much lower than national statistics suggest. Sadly, it is likely that the high proportion of hospital deaths currently reported reflects not that choice is unavailable, but that choice is not offered.

Investing in primary care as the bridge for transitional care

Transition to adult services of young people with palliative care needs is the crisis riding the wave of advances in paediatric medicine. The review by Doug et al 1 has highlighted the extent of the crises we are facing, with a lack of standardised transition programmes, a poor evidence base to transition guidelines and insufficient outcome data to evaluate the different models. How, in palliative care, have we found ourselves in this position, with a long-anticipated patient population that has no clear destination and little means of getting there? One of the difficulties must stem from the broad scope of paediatric palliative care, where early referral in the course of a life-threatening or life-limiting condition is the norm.2 Consequently, those transitioning to adult services encompass a diversity of diagnoses, disease groups and disease trajectories. One of the dilemmas facing paediatricians is not “should I transition my young adult patients” but “how and where do I transition them to”. It is no surprise that published models of good practice, although limited, were mainly identified for condition-specific transition programmes, notably cystic fibrosis, cancer and congenital heart disease (CHD). Here, a single disease group, managed by disease-specific specialists in paediatrics, has a clearly identifiable disease-specific service in adult medicine. Of course, ‘palliative care’ also has an equivalent, clearly identified and developed specialty in adult services, so …