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

Online presentation: Just because we can... should we?

From Together for Short Lives a chance to watch the online discussion (webinar) in November 2018 by Amanda Whateley, Director of Rainbow's Hospice for Care on ethics entitled "Just because we can ...... should we".  It discusses basic ethical principles, what ethics are raised by those involved in decision making for children with life-limiting illnesses and considerations for hospices when working with families where there may be/have been conflict.

Contact the library for the link

Article: In the child's best interests: should life be sustained when further treatment is futile?

There have been several recent cases where medical staff have considered that there was no possibility of recovery for a child, yet their clinical judgements were challenged by the parents. The private anguish of these families became public, social media heightened emotions and this was followed by political and religious intrusion.  The aim of this article is to explore the concept of medical futility and the withdrawal of care for children in intensive care units. 

Marland E, Davies B (2019) In the child's best interests: should life be sustained when further treatment is futile? Nursing children and Young People, 31 (6) p 23 - 27.

Contact the library for a copy

Article: Parents' experiences of requests for organ and tissue donation: the value of asking

The aim of this Australian study was to explore to what extent organ and tissue donation (OTD) is discussed as part of end of life care, and the experiences of parents and healthcare staff.  Participants were recruited from a number of intensive care units and a children's hospice. The findings showed that of 21 parents, only 7 parents were asked about donation, four agreed and two donated.  41 healthcare staff were interviewed.  The study found a number of themes including the complexity of the donation process, the importance of asking, the difficulty of raising the topic, and parents assumptions when not asked.   A number of recommendations are made.

Darlington, A. 2019. Parents' experiences of requests for organ and tissue donation: the value of asking.  Archives of Diseases in Childhood, epub.

Request a copy from the library

Article: Parental decision-making following a prenatal diagnosis that is lethal, life-limiting or has long term implications for the future child and family: a meta-synthesis of qualitative literature

A systematic review of the literature was carried out to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities.  Twenty four papers were identified with 3 key themes identified under the headings of: 'All life is precious', hope for a positive outcome' and 'a life worth living'.  This comprehensive review revealed factors such as hope, morality and potential implications of their own and other's quality of life are all aspects health professionals should be aware of to enable facilitated supported decision making.

Blakeley, C et al. 2019.  Parental decision-making following a prenatal diagnosis that is lethal, life-limiting or has long term implications for the future child and family: a meta-synthesis of qualitative literature.  BMC Medical Ethics.

View article online

Article: Advice on resolving disagreements with the families of critically ill children

A two page analysis and commentary on the Nuffield Council briefing on how nurses should manage cases where parents can come into conflict with decisions about life sustaining treatment. It includes a summary of four cases that hit the headlines in recent years.

Evans, N. 2019.  Advice on resolving disagreements with the families of critically ill children.  Nursing Children and Young People, 31 (4) p 8 - 9.

Contact the library for a copy

Guidance: Achieving consensus advice for paediatricians and other health professionals: on prevention, recognition and management of conflict in paediatric practice.

Conflict can arise between healthcare professionals and the parents of children not only where there is disagreement on the withdrawal or withholding of life sustaining treatment but also in more routine general care.  This paper suggests practices which may reduce disharmony.  This includes preventative management, identification of conflict, early management of conflict, escalation and conflict management.

Linney, M. 2019.  Achieving consensus advice for paediatricians and other health professionals: on prevention, recognition and management of conflict in paediatric practice.  Archives of Diseases in Childhood: May 2019 104 (5) p 413-417.

Contact the library for a copy

Guidance: Disagreements in the care of critically ill children

The care and treatment of babies and young children who are critically ill often involves complexity and uncertainty, and disagreements can arise between parents and healthcare staff about the best course of action.  This briefing note summaries the possible causes of disagreements between parents and healthcare staff.  It discusses the changing social contexts in which these issues arise and makes observations on actions that can be taken to prevent or more quickly resolve disagreements in future.

Nuffield Council of Bioethics.  Disagreements in the care of critically ill children.  

Article: Informed consent 1: legal basis and implications for practice

Nurses have a legal duty to ensure they obtain informed consent from their patients before carrying out any intervention or treatment.  This article - the first in a series of two - discusses why informed consent is fundamental to the provision of person-centred care and explores the legal principles behind it.

Taylor, H. (2018) Informed consent1: legal basis and implications for practice. Nursing Times, 114 (6) p 25-28.

Contact the library for a copy

Article: Informed consent 2: assessing validity, capacity and necessity

Nurses need to obtain their patient's consent before giving any treatment. This is the general rule, but the issue of consent is much more complex than that.  How is consent given?  How can you prove that it has been given?  How do you decide whether or not to administer treatment to someone who is unable to give consent?  This article explores what makes consent valid, how it can be obtained, and in what circumstances treatment may proceed lawfully without the patient's consent.

Taylor, H. (2018). Informed consent 2: assessing validity, capacity and necessity.  Nursing Times, 114 (7) p 50-52.

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.

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

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

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/

RCN Guidance: When someone asks for your assistance to die

This updated guidance was developed to support nurses, HCAs, and other health professionals in adult practice who may be asked by patients, or their families or carers, to become involved in assisting suicide. It covers the law on assisted suicide in the UK, as well as the law on advance decisions. 

RCN, 2017.  When someone asks for your assistance to die.  Download guidance here

RCN Guidance: Principles of consent

This document aims to provide information to registered nurses and other healthcare staff to guide their practice around consent.  It includes children and young people.

RCN, 2017.  Principles of consent. Download guidance here

[Article] Openness and honesty when things go wrong: the professional duty of candour (GMC guidelines)

An article discussing the key issues addressed in the GMC guidance on openness and honesty when things go wrong.  These include what should be discussed with patients when something goes wrong, offering a personalised apology, and the professional judgement to be used when a "near miss" occurs.

Jacob, H. & Raine, H. 2016.  Openness and honesty when things go wrong: the professional duty of candour (GMC guidelines).  Archives of Disease in Childhood: Education and Practice. 101 p 243 - 245.

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

[Article] What does "terminal sedation" mean? Results of a UK survey?

The online survey was undertaken to prompt debate on what terminal sedation should or should not be.   There were 514 respondents in 3 categories: MPs and Lords, palliative care professionals and members of the public.  The survey aimed to ascertain their views on whether terminal sedation differed from assisted suicide/euthanasia, gain responses to a number of hypothetical patient scenarios, and their views on respect, beneficence and lawfulness in relation to the patient scenarios.  The findings are discussed and recommendations made.

Smith, T. 2016.  What does "terminal sedation" mean?  Results of a UK survey?  European Journal of Palliative Care, 23 (2) p 84-87.

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

[Article] A patient with Duchenne muscular dystrophy in transitional care who wishes to have a child

Many young adults with conditions like Duchenne Muscular Dystrophy (DMD) are living longer, are going through transitional care, and might well have wishes to such as to be in a relationship or even start a family. The authors of this article discuss the ethical considerations around the wish of an adult man with DMD to have a child.

Willis, D., Hart, C. & Willis, T. 2015.  A patient with Duchenne muscular dystrophy in transitional care who wishes to have a child.  European Journal of Palliative Care, 22 (4) p 175 - 177.

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

[Guidance] Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice

This guidance has been revised to reflect changes in the scope and availability of advanced technologies.  Areas include the legal and ethical framework, the process of decision-making, practial aspects of end of life care, and practical aspects of decision making.  Care of families after the death of a child, supporting the healthcare team and key goals in the provision of bereavement support is also included.

Larcher, V., Craig, F., Bhogal, K., Wilkinson D. & Brierley, J. 2015. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framwork for practice. Archives of Diseases in Childhood. 2015 100 (Supplement 2) S1 - S23.

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