Paediatric Palliative Medicine Research Articles

Palliative care in children in Wales: a study of provision and need

To establish incidence and prevalence of children needing palliative care in Wales. Children were identified in three ways: (1) from paediatricians using the Welsh Paediatric Surveillance Unit (WPSU); (2) referrals to the specialist palliative medicine service based in Cardiff; and (3) children under the care of the two principal children's hospices serving Wales. All children referred or reported between January 2001 and December 2002 were included. A total of 226 children were identified. Fifty (22%) were identified by paediatricians, 58 (26%) were referred to the specialist paediatric palliative medicine service, 158 (70%) had been under the care of a children's hospice, and 34 (15%) were identified by more than one source. This study identified approximately 3.75 per 10000 children. This is about half the prevalence figures quoted in the ACT/ RCPCH document in 1997. The study may underestimate prevalence. Children needing palliative medicine are still under-recognized in Wales. The overlap between children's hospice care and specialist paediatric palliative medicine is relatively small.

Strong Opioids in Pediatric Palliative Medicine

The management of pain in the palliative care of children is somewhat different from that in adults. It also differs in approach from the management of other types of acute and chronic pain in childhood. Whereas once opioids were thought to be highly dangerous drugs, unsuitable for use in children, they have now taken their place as the mainstay for provision of good analgesia to manage moderate-to-severe pain in both malignant and non-malignant life-limiting conditions. There are relatively little clinical or laboratory data regarding opioids specifically in children. However, much of what has been published regarding the management of pain in palliative medicine in adults can be extrapolated. On saying that, early research in children does suggest some significant differences in opioid pharmacokinetics, particularly with respect to morphine clearance, which seems to be faster in adults. Thus, the use of opioids in pediatric palliative care presents some unique challenges. Confident and rational use of opioids by pediatricians, illustrated by the WHO guidelines, is essential for the adequate management of pain complicating the palliative phase in children with life-limiting conditions.

Paediatric palliative medicine: a unique challenge.

For more than thirty years, adults suffering from life-threatening or terminal conditions have been able to access specialist skills in palliative medicine. It has taken much longer for children to start to have access to the same expertise. Paediatric palliative medicine adopts a robust and rational approach to symptom control, based on a thorough understanding of pathophysiology and therapeutics. At the same time, it recognises that physical issues are only one aspect of a child's quality of life and, by adopting a multi-dimensional approach, aims to address psychosocial and spiritual or existential concerns.

Training in paediatric palliative medicine

Training in paediatric palliative medicine

Pediatric Palliative Medicine: Obstacles to Overcome

The care of the dying child involves an appreciation of issues that are distinct from those faced in adult palliative care. Obstacles to effective palliative care for children start with the very basic need to assure pain control, and include difficult ethical issues of limits to treatment and the determination of the child's best interests. The remarkable progress in medicine has resulted in the ability of medical science to more accurately diagnose and treat most symptoms of the terminally ill. What remains underrepresented is the teaching and application of the tools at hand that can provide comfort and relief to the dying. In children, an appreciation of the whole person, including the unique role of parents, is needed when we are confronted with the difficult choices faced at the end of life. Given the lack of objective data on such basic issues as the assessment of pain, the relationship of thirst to dehydration, and the ability of technology to prolong the quality of life, it remains imperative that we remain open to different interpretations of the appropriate use of medical therapies. In areas such as the pharmacodynamics of opiates, where good data already exist, it remains unacceptable to have children suffer because of misperceptions and incorrect assumptions about appropriate drug use. The task of understanding the complexity of the child and family as they live through the experience of the child's dying is enormous. The need to give care and attempt the relief of suffering is just as great as the need to cure and should be no less an ultimate goal of medicine.

ARTERIAL DISEASES

<h3>Objectives</h3> Place of death (POD) is considered a key quality indicator for adult end of-life care, but paediatric evidence is limited. Data from Child Death Overview Panel (CDOP) databases provides an opportunity to describe trends in POD as regional paediatric palliative medicine (PPM) options have increased. Aims were to identify and describe trends in POD for children in South Yorkshire. <h3>Methods</h3> Retrospective cohort study. Anonymised data extracted from five CDOP databases 2008–2015. Data included age, gender, ethnicity, postcode (outward code only), POD, classification and category of death. Descriptive statistical analysis using χ² test was used to assess intergroup differences. <h3>Results</h3> 748 deaths were notified from 2008 to 2015. Neonatal deaths were excluded, 46% (n=345). Of non-neonatal deaths (n=403), 58% (n=232) were ‘expected’. Of expected deaths (n=232), 19% (n=45) died in home, 19% (n=45) died in hospice and 61% (n=141) died in hospital. This was significantly different from comparable national data which showed considerably more hospital deaths. There was no significant change in POD over time. <h3>Conclusion</h3> Hospital remains the POD for most children, whether deaths are ‘expected’ or not, suggesting specialised PPM should be expanded into the hospital setting. More research is needed regarding preference for POD. This study may help inform future service planning for PPM and hospice development.