Family Guide: Caring for your child at end of life

The aim of this guide is to provide families with practical support at this most difficult of times.  It answers some of the questions families might have, with some reflections from families on their own experience of losing a child.  It sets out what should be expected from children's palliative care services with useful links to further sources of information and support.

Together for Short Lives, 2019.  Caring for your child at end of life: a guide for parents and carers.
Available to download

Guide: Caring for a child at end of life: a guide for professionals on the care before death, at the time of death and after death

Caring for a child at end of life aims to provide a practical toolkit for all practitioners providing end of life care to babies, children and young people. It sets out key standards and goals for good practice alongside links to useful sources of information, legislation and regulations.  Updated from 2018.

Together for Short Lives, 2019.  Caring for a child at end of life: a guide for professionals on the care of children and young people before death, at the time of death and after death.
Available to download

Information for families: Saying goodbye to your baby or child

After the death of a much longed for baby or child, thinking about what to do next can be overwhelming.  Every parent reacts differently and how each decide to say goodbye their child or baby will vary.  This leaflet from Child Bereavement UK provides details on some of the options available and includes links to other organisations that may help.
Download here

Article: Buccal opioids for breakthrough pain in children with life-limiting conditions receiving end-of-life care

This paper reports on the advantages and disadvantages of using buccal opioids for breakthrough pain relief with a focus on diamorphine as the preferred opioid. The paper shares the clinical experiences from one UK organisation of care for children and young people at the end of their lives and contributes to the growing body of pharmacological evidence.

Norman, C. & Maynard, L. 2019. Buccal opioids for breakthrough pain in children with life-limiting conditions receiving end-of-life care.  International Journal of Palliative  Nursing, 25 (10) p 112-117.

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Article: Parallel planning and the paediatric critical care patient

A growing number of children with life-limiting conditions are being cared for in paediatric critical care settings.  This article explores the challenges and potential benefits of parallel planning and advance care pans and suggests strategies for their improved use in the future.

Sidgwick, P. et al. 2019.  Parallel planning and the paediatric critical care patient.  Archives of Diseases in Childhood, 104 p 994-997

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Article: Professionals' views and experiences of paediatric advance care planning

This study explored health professionals' views and experience of paediatric advance care planning in 3 hospitals, community settings and a children's hospice in the North of England.  Twenty one health care professionals participated.   Two themes were generated from the study: the timing of conversations, including waiting for a relationship to form with the family, the introduction of parallel planning and avoiding a crisis situation.  The second theme involved how to approach the topic and where to have the conversation.   For all healthcare staff, the timing of when to start the conversation is an issue.  The value of doing this in stages and the environment were noted as important. The study reported on suggestions to help the process.

Jack, B. et al.  2018.  Professionals' views and experiences of paediatric advance care planning.  BMC Palliative Care.  online

View full text article here

Book Chapter: Care of children and young people at the end of life

The chapter covers recognising when a child is nearing end of life, the assessment and planning needs, symptom management, ethical issues, and the interdisciplinary approach required for caring for a child and family.  It also discusses the self-care required for professionals working with children at end of life.  A good overview for students or staff new to children's palliative care.

Price, J. & Heywood, M.  Care of children and young people at the end of life. In: Price, J & McAlinden, O, (eds) 2018. Essentials of Nursing Children and Young People.  Sage Publishing. p539-555-

Contact the library for a copy

Article: Transforming a family's end-of-life experience: stopping the trafficking

Modern slavery and human trafficking is a phenomenon infrequently reported in hospice and palliative care literature.  In this case study, a children's hospice describes the end-of-live care for a baby from two days to five weeks old and the support provided to his  mother, who the hospice team believed to have been trafficked into the UK.

Ward, B 2018. Transforming a family's end-of-life experience: stopping the trafficking. European Journal of Palliative Care, 25 (3) P102 - 104.

Book chapter: Advance care planning: thinking ahead for parents, carers, children and young people.

The chapter looks at the spectrum of conditions involved requiring advanced care planning in children's palliative care.  It discusses the challenges, the tools and pathways available to support this and maintaining support for the family at the time of and following death.

Thompson, A. 2018.  Advance care planning: thinking ahead for parents, carers, children and young people.  In: Thomas, K. et al.  Advance Care Planning in End of Life Care.  2nd Edition. Oxford University Press. p171 - 180.

Contact the library for a copy.

Guidance: When a child dies: a guide for parents

Published by NHS England, the guide has been put together by bereaved parents, support organisations and professionals.  It's for parents and carers of a child under the age of 18 who has died to help understand some of the things that will happen and the support available.  It includes information about the medical certificate, possible further investigations, the Child Death Review panel, and a number of things a parent/carer is required to do.

Download guidance here

NHS England, 2018.  When a child dies: a guide for parents and carers.

New Book: Palliative care nursing at a glance

Although primarily a book for adult palliative care nursing, the book has chapters that can also be relevant for palliative care for young adults,  including symptom management, pain control, communication, advance care planning, ethical issues, and managing end of life care.

Ingleton, C. & Larkin, P J. 2015. Palliative care nursing at a glance.  Wiley Blackwell.

Contact the library  for a loan

Article: Children with life-limiting conditions in paediatric intensive care units

This study aimed to determine how many children are admitted to PICU with life-limiting conditions (LLC) and their outcomes. The study found that children with a LLC accounted for the majority of admissions, bed-days and deaths in PICU; children  with a LCC were 75% more likely to die in PICU than those without a LLC, and there was a 93% survival at 1 year for children with a LCC. 

Fraser, L. & Parslow, L. 2018.  Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study.  Archives of Diseases in Childhood, 103 (6) p 540 - 542.

Contact the Library  for a copy

Article: Interdisciplinary pediatric palliative care team involvement in compassionate extubation at home: from shared decision making to bereavement

Little is known about the role of pediatric palliative care (PPC) programs in providing support for home compassionate extubation (HCE) when families choose to spend their child's end of life at home. Two cases are presented that highlight the ways in which the involvement of PPC teams can help to make the option available, help ensure continuity of family-centered care between hospital and home, and promote the availability of psychosocial support for the child and their entire family, health care team members, and community.

Postier, A., Catrine, K. & Remke, S. 2018. Interdisciplinary pediatric palliative care team involvement in compassionate extubation at home: from shared decision making to bereavement.  Children, 5 (3) (online version)

For a copy of the article please fill out the online request form

Guidance: If I could i would.....Integrated person-centred planning for children, young people and families receiving palliative care: guidance and toolkit

Written to support the NICE End of life care guidance for neonates children and young people, this framework and selection of practical tools provides guidance on how to implement person centred end of life care planning.

Riley, R, Tyler, R. & Ramus, S. 2018.   Integrated person-centred planning for children, young people and families receiving palliative care: guidance and toolkit. 

Download here

Book: Follow the child: planning and having the best end of life care for your child

Drawing on her family's own experiences and those of other parents facing the death of a child from illness or a life-limiting condition, Sacha Langton-Gilks explains the challenges, planning, and conversations that can be expected during this traumatic period. Practical advice such as how to work with the healthcare professionals, drawing up an Advance Care Plan, and how to move care into the home sit alongside observations of how such things worked in her own family's story.

Langton-Gilks, S. 2018.  Follow the child: planning and having the best end of life care for your child.  Jessica Kingsley Publishers.

This book is on order and hoping to be available from 8th March onwards

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Article: A good resource for parents, but will clinicians use it? Evaluation of a resource for paediatric end of life decision making

The aim of this research was to ascertain healthcare staff's views on the acceptability and usefulness of a handbook and web based resource (Caring Decisions) that was designed as an aid for parents facing end of life decisions for their child.  The research confirmed the usefulness of the resource with two major themes identified: providing families with empowerment, and the usefulness of it for staff as a valuable tool in end of life communication.  The authors concluded that although it's usefulness had been demonstrated, it's use was dependent on healthcare teams.

Delany, C et al. 2017.  A good resource for parents, but will clinicians use it? Evaluation of a resource for paediatric end of life decision making.  BMC Palliative Care

Available to download

Article: Factors that influence parental decision making about organ donation

This article describes a review undertaken which looked at which modifiable factors influence parental decision making. Two main themes were identified:  interaction with healthcare staff and pre-disposition to organ donation.  Satisfaction wit hospital care, the information provided and the way it was communicated were all found to be modifiable factors that influenced decision making.  The article includes information for nurses to be aware of and to consider when communicating with families.

Cleaver, L. 2017.How modifiable factors influence parental decision making about organ donation.  Nursing Children and Young People,  November 29 (9) p 29 - 38.

Request the article via the online form

Book: Palliative and end of life care in nursing

Written mainly from an adult palliative care perspective, but also applicable for children's palliative care, the book is divided into chapters looking at communication, grief and bereavement, cultural issues, ethical issues, end of life care in a critical care setting, and ethical issues.  It's written for nursing students, and non specialists, mapped to the NMC standards and essential skills clusters, with learning activities throughout the book.

Nicol, J. & Nyatanga, B. 2016.  Palliative and end of life care  in nursing.  2nd edition. 

Available for loan from the library

Article: Maintaining family life balance while facing a child's imminent death - A mixed methods study

A child's end of life phase is an extremely vulnerable time, pushing parents to their mental and physical limits.  This Swiss study aimed to find out what needs parents have during this phase and what can be put in place to support them.   Parents who's child at died either at home or hospital were included.  The results showed that parents created an intimate lifeworld in which they tried to provide some normality in daily life before their child's death, which exhausted them.   The study concluded that paediatric end of life care at home is only feasible if parents make extraordinary efforts and additional help is provided with housekeeping help and psychological support.

Eskola, K et al 2017. Maintaining family life balance while facing a child's imminent death - A mixed methods study. Journal of Advanced Nursing 2017 p1-11 [online]

To request this article complete the online form

Guidelines: End of life care for infants, children and young people with life-limiting conditions: summary of NICE Guidance

This article summarises the recent guidance from the National Institute for Health and Clinical Excellence (NICE) on the planning and management of end of life care in infants, children and young people.  It also includes a visual summary in the form of an infographic.

Villanueva, G., Murphy, M, S., Vickers, D., Harrop, E. & Dworzynksi, K. 2017.  End of life care for infants, children and young people with life-limiting conditions: summary of  NICE Guidance. BMJ Online December 8, 2016

To request a copy, click here fill in form and return to library.