Article: Parallel planning and the paediatric critical care patient

A growing number of children with life-limiting conditions (LLCs) are being cared for in paediatric critical care (PCC) settings where they are at high risk of developing complications and many die after prolonged admissions.   Relatively few of these patient and their parents/carers have had documented discussions about their wishes in the event of serious deterioration before admission to PCC.  This article examines the complexities of decision-making in children with LLCs  who are admitted to PCC settings.

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

Contact the library for a copy

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.

New Book: Law and professional issues in nursing

Written in a clear and straight forward language the book offers a "crash course" to healthcare staff in law and legal obligations.  It covers decision making, professionalism, consent and children, record keeping, confidentiality, plus a range of other areas.  It's mapped to the NMS standards and essential skills cluster, and includes case studies and activities.

Griffiths, R. & Tengnah, C. 2017.  Law and professional issues in nursing.  4th Edition. Sage

Available for loan or individual chapters can be requested.  More details in the
library catalogue

Handbook: Caring Decisions

Caring Decisions is a handbook developed at the Royal Children's Hospital, Melbourne Australia for families of children facing a decision to stop, or not start life support.  It refers particularly to decisions about intensive medical treatment but is also relevant for children not in intensive care units.  The aim of the handbook is to help parents think through questions they may be facing.   The handbook is being published in two forms - a short printed booklet that outlines a few common questions about end of life decisions and a longer version online version.  Both versions includes quotes and stories from parents who have faced end-of-life decisions.

More information at: https://www.rch.org.au/caringdecisions/about_us/About_Us/

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] Parents' experiences of care decisions about children with life-limiting illnesses

Research with 3 bereaved mothers' regarding their experiences of making decisions, and revising and implementing end of life care plans. The research showed that parents understand the importance of planning for the end of their child's life but find the process difficult.  They also find it difficult to verbalise their decisions and value having the decision partly taken away from them.  The author concludes professionals can assist parents by using a non-dissent model of decision making.

Popejoy, E. 2015. Parents' experiences of care decisions about children with life-limiting illnesses.  Nursing Children and Young People 27 (8) p 20 - 24.

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

[Article] Parents and end of life decision making for their child: roles and responsibilities

Research from the Royal Children's Hospital, Melbourne, Australia on whether parents want to be and should be the decision-maker for their child in end of life matters. 25 parents were involved in the study.  Their findings showed that parents actively wish to be involved in this role, and can manage its consequences. Furthermore, not being the end of life decision maker was identified in some cases as being detremental to parents' well being.

Sullivan, J., Gillam, L. & Monagle, P. 2015. Parents and end of life decision making for their child: roles and responsibilities.  BMJ Supportive & Palliative Care, 25 pp 240 - 248.

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

[Article] What parents want from doctors in end-of-life decision making for children

This study, with 25 bereaved parents used semi-structured interviews to examine parent's views and experiences of end-of-life decision making.   Parents reported varying roles taken by doctors: the provider of information without opinion, giving information and advise as to the decision that should be taken; and seemingly being the decision maker for the child.  The majority of parents found their child's doctor enabled them to be the ultimate decision maker for their child, which was what they very clearly wanted to be, and consequently enabled them to exercise their parental autonomy. Parents found it problematic when doctors took over decision making.   A less frequently reported, yet significant role for doctors was to affirm decisions after they had been made by parents.

Sullivan, J., Mongale, P. & Gillam, L. 2014. What parents want from doctors in end-of-life decision making for children.  Archives of Disease in Childhood 99 (3) pp 216 - 220.

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

[Article] When to stop? Decision-making when children's cancer treatment is no longer curative: a mixed method systematic review

Children with cancer, parents and clinicians face difficult decisions when cure is no longer possible.   Little is known about decision-making processes, or how agreement is reached.  Professionals voice concerns about managing parental expectations and beliefs which can be contrary to their own, and may change over time.  This systematic review was carried out to determine what constitutes best medico-legal practice for children under 19 years of age.

Valdez-Martinez, E., Noyes, J. & Bedolla, M. 2014.When to stop? Decision-making when children's cancer treatment is no longer curative: a mixed method systematic review.  BMC Pediatrics.

Click here to download

[Article] Use of formal advance care planning documents: a national survey of UK Paediatric Intensive Care Units

In adult and paediatric palliative care, advance care planning (ACP) is a core element. The majority of children who die, do so in a paediatric intensive care unit (PICU). This survey aimed to identify and compare paediatric ACP documents that are used by UK PICU's.  28 lead clinicians for PICU's were emailed, with a response number of 24.  14 PICU's responded that formal ACP documentation were currently in use, the remaining PICU's had a range of documentation, which varied widely in terms of presentation content and intended use.  Some  had been developed locally, while others regionally.  The authors concluded that due to the variation around the UK in the existence of formal ACP documentation, consideration should be given to a national policy following further review and evaluation of the documentation.

Mitchell, S., Plunkett, A. & Dale, J. 2014. Use of formal advance care planning documents: a national survey of UK Paediatric Intensive Care Units.  Archives of Disease in Childhood, 99 (4) p 327 - 329.

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