Planning for paediatric palliative care services in Queensland: Characteristics, demographics and health needs of children and young people with life-limiting conditions

Abstract Objective: Retrospectively apply criteria from Center to Advance Palliative Care to a cohort of children treated in a cardiac ICU and compare children who received a palliative care consultation to those who were eligible for but did not receive one. Methods: Medical records of children admitted to a cardiac ICU between January 2014 and June 2017 were reviewed. Selected criteria include cardiac ICU length of stay >14 days and/or ≥ 3 hospitalisations within a 6-month period. Measurements and Results: A consultation occurred in 17% (n = 48) of 288 eligible children. Children who received a consult had longer cardiac ICU (27 days versus 17 days; p < 0.001) and hospital (91 days versus 35 days; p < 0.001) lengths of stay, more complex chronic conditions at the end of first hospitalisation (3 versus1; p < 0.001) and the end of the study (4 vs.2; p < 0.001), and higher mortality (42% versus 7%; p < 0.001) when compared with the non-consulted group. Of the 142 pre-natally diagnosed children, only one received a pre-natal consult and 23 received it post-natally. Children who received a consultation (n = 48) were almost 2 months of age at the time of the consult. Conclusions: Less than a quarter of eligible children received a consultation. The consultation usually occurred in the context of medical complexity, high risk of mortality, and at an older age, suggesting potential opportunities for more and earlier paediatric palliative care involvement in the cardiac ICU. Screening criteria to identify patients for a consultation may increase the use of palliative care services in the cardiac ICU.

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Does referral to specialist paediatric palliative care services reduce hospital admissions in oncology patients at the end of life?

British Journal of Cancer ◽

10.1038/bjc.2013.89 ◽

2013 ◽

Vol 108 (6) ◽

pp. 1273-1279 ◽

Cited By ~ 21

Author(s):

L K Fraser ◽

M van Laar ◽

M Miller ◽

J Aldridge ◽

P A McKinney ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Hospital Admissions ◽

Oncology Patients ◽

Care Services ◽

Paediatric Palliative Care ◽

Palliative Care Services

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Challenges of paediatric palliative care in Romania: a focus groups study

BMC Palliative Care ◽

10.1186/s12904-021-00871-7 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Nadia Pacurari ◽

Eva De Clercq ◽

Monica Dragomir ◽

Anca Colita ◽

Tenzin Wangmo ◽

...

Keyword(s):

Palliative Care ◽

Focus Groups ◽

Healthcare Professionals ◽

Paediatric Oncology ◽

Pediatric Palliative Care ◽

Charitable Organizations ◽

Number Of Children ◽

Care Services ◽

Paediatric Palliative Care ◽

Palliative Care Services

Abstract Background The availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania. Methods Four mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding. Results For many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation. Conclusion Significant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

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Decision-making with children, young people, and parents

Oxford Textbook of Palliative Care for Children ◽

10.1093/med/9780198821311.003.0004 ◽

2021 ◽

pp. 36-43

Author(s):

Myra Bluebond-Langner ◽

Richard Langner

Keyword(s):

Decision Making ◽

Palliative Care ◽

Clinical Practice ◽

Young People ◽

Decision Maker ◽

Decision Making Process ◽

Children And Young People ◽

Paediatric Palliative Care ◽

Life Threatening ◽

Seriously Ill

Support in decision-making is a key part of paediatric palliative care (PPC). In this chapter, we explore some of the salient features of decision-making for seriously ill children and young people (CYP) with life-limiting or life-threatening illnesses and reflect on their implications for clinical practice. We begin with a discussion of two fundamental aspects of decision-making: defining the problem that the decision maker faces and eliciting preferences, goals, and values. We consider what each of the stakeholders—clinician, parent, patient—bring to the decision-making process and their roles in the process. We also address some of the problems and conflicts that can arise and practical approaches to resolving them.

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