Turning Water into Wine: A New Community Pharmacy Workforce Delivering Paediatric Palliative Care Services Across Scotland

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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Underlying barriers to referral to paediatric palliative care services

Journal of Child Health Care ◽

10.1177/1367493512468363 ◽

2013 ◽

Vol 18 (1) ◽

pp. 19-30 ◽

Cited By ~ 35

Author(s):

Katherine Twamley ◽

Finella Craig ◽

Paula Kelly ◽

Delia R Hollowell ◽

Patricia Mendoza ◽

...

Keyword(s):

Palliative Care ◽

Care Services ◽

Paediatric Palliative Care ◽

Palliative Care Services

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Neonatal palliative care: a practical checklist approach

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2018-001532 ◽

2018 ◽

Vol 10 (2) ◽

pp. 191-195

Author(s):

Naomi Taylor ◽

Yi Fan Liang ◽

Robert Tinnion

Keyword(s):

Palliative Care ◽

Pain Relief ◽

Care Delivery ◽

Case Note ◽

Comfort Care ◽

Care Services ◽

Paediatric Palliative Care ◽

Before And After ◽

Palliative Care Services

ObjectivesFollowing publication of detailed national neonatal palliative care guidance, practical regional guidance, in the form of multidisciplinary ‘checklists’, was implemented aiming to improve the quality of neonatal palliative care.MethodsCase note audit was used to examine the quality of locally delivered neonatal palliative care before and after regional guidance implementation.Results27 patients were allocated to the ‘before’ cohort and 10 to the ‘after’ cohort. Introduction of the checklists was apparently associated with improvements in domains of pain relief and comfort care, monitoring, fluids and nutrition, completion of diagnostics, treatment ceiling decisions, resuscitation status and discussion with parents. Other support for parents was poorly adhered to.ConclusionRegional guidance improved some aspects of palliative care delivery though other areas remained suboptimal. Other strategies, for example, consultation with paediatric palliative care services, need to be considered to further improve the quality of palliative care delivered to babies with life-limiting illnesses.

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Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare professionals

Archives of Disease in Childhood ◽

10.1136/archdischild-2021-321808 ◽

2021 ◽

pp. archdischild-2021-321808

Author(s):

Sarah Mitchell ◽

Anne-Marie Slowther ◽

Jane Coad ◽

Sophie Bertaud ◽

Jeremy Dale

Keyword(s):

Palliative Care ◽

Focus Groups ◽

Healthcare Professionals ◽

Clinical Uncertainty ◽

Care Services ◽

Paediatric Palliative Care ◽

Palliative Care Teams ◽

Palliative Care Services ◽

Life Threatening ◽

Facilitators And Barriers

ObjectiveTo understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members.DesignFocus groups with children’s palliative care professionals. Data were analysed using thematic analysis.SettingFour regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018.ParticipantsHealthcare professionals (doctors, nurses and allied healthcare professionals) working in children’s palliative care services.FindingsA total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural ‘collusion of immortality’, where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in ‘illuminating the blind spot’ of palliative care as well as providing hands-on care.ConclusionsPalliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations.

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