G517(P) Do specialist paediatric palliative care services benefit children and young people patients with life-limiting or life-threatening conditions and their families?

2016 ◽  
Vol 101 (Suppl 1) ◽  
pp. A306.1-A306
Author(s):  
S Mitchell ◽  
A Morris ◽  
K Bennett ◽  
J Dale
Author(s):  
Myra Bluebond-Langner ◽  
Richard Langner

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.


2021 ◽  
pp. archdischild-2021-321808
Author(s):  
Sarah Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Sophie Bertaud ◽  
Jeremy Dale

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.


Author(s):  
Joseph O’Neill

This chapter covers a fundamentally important and often overlooked area of medicine, and outlines how even in humanitarian crises palliative care principles should be applied to relieve suffering for those with life-threatening illness. As not all humanitarian situations allow comprehensive textbook palliative care services for all patients, this chapter provides the underlying principles of palliation, implementation in low-resource environments, and key management components to allow adoption in varying contexts.


Background 160 Interface between cancer and palliative care services 162 Caring for dying people 164 Bereavement 166 Models of bereavement 167 Support for the bereaved 168 The practice of palliative care aims to enhance the quality of life of people experiencing life-threatening illnesses and their families. The principles on which palliative care is based suggest that it...


Author(s):  
Maryam Rassouli MD ◽  
Naiire Salmani MD ◽  
Zahra Mandegari MSc ◽  
Atena Dadgari MSc ◽  
Bahare Fallah Tafti MSc ◽  
...  

Pediatric palliative care is a holistic caring approach for children and families that begins with diagnosis of a life-threatening illness and continues until death; it aimed to relieve pain and other symptoms in physical, mental, social and spiritual aspects. In spite of available evidence concerning optimal outcomes of the provision of palliative care, establishment of a palliative care system for children has hardly been feasible so far due to a number of challenges. Therefore, this review study aimed at identifying the challenges of the provision of pediatric palliative care along with the relevant solutions. The identified challenges were classified into two categories including structure-based challenges (i.e. lack of a clear structure in the health system and classification of services, shortage of specialized staff, insufficient home care services, absence of health care tariffs along with insurance coverage of palliative care services) and process-based challenges (i.e. absence of guidelines, lack of educational programs for family, family attitudes and beliefs, communication barriers, and lack of access to opioids). Thereafter, the solutions for each challenge are provided in accordance with the available literature separately. Given the significance of palliative care for children with cancer and in order to improve the quality of life of the children and the families, it appears necessary that policymakers and managers take account of the challenges as well as the feasibility and the implementation of provided solutions.


2020 ◽  
Vol 7 (4) ◽  
pp. 94-96
Author(s):  
Dr. Abhijit Shinde ◽  
Dr. Sunil Natha Mhaske ◽  
Dr. Ramesh Kothari ◽  
Dr. Sonal Shinde

In the India, more than 30 per 1000 live births of infants die each year before, during, or after birth as do many children with life- limiting conditions. In most countries in the developed world including the United States, the vast majority of infants, children and teenagers at end of life do not have access to multidisciplinary pediatric palliative care services in their community or at a children’shospital. Pediatric palliative care is for children and teenagers suffering from life- threatening or life-limiting conditions in which survival into adulthood is or may be jeopardized if curative treatments  fail. As a result, pediatric palliative care may last over many years.


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