insight - tŷ hafan volume 1 issue 2

insight

volume 2 issue 1

inside this issue: editor’s welcome

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editorial panel

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withholding nutrition and hydration at end of life

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making decisions about compassionate extubation 8-11 journeys and destinations

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the european association of palliative care conference 2015

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courses, study days and conferences

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sharing best practice in paediatric palliative care

sharing best practice in paediatric palliative care. volume 2 issue 1

welcome to the third edition of

insight

Mandy Brimble, Lead Practitioner for Education and Research, T yˆ Hafan and Editor Welcome to our first issue of 2015, the third since our launch. The response to our last issue, which was distributed throughout Wales and beyond, was very positive.

We timed its publication to coincide with our inaugural research and innovation conference, which enabled us to reach an audience who may not have otherwise been aware of Insight.

You will find a report of the conference on page 12. The event was very successful in meeting our aims of showcasing research and innovation in paediatric palliative care and facilitating networking between those involved in this field of practice, both in the practice setting and academia.

I look forward to hearing about the collaborations which result from the connections made on this day and the effect these have on improving and sharing best practice. Our next conference will take place in October 2016.

We had originally planned for this to be an annual event but have decided to alternate with the International Cardiff Conference on Paediatric Palliative Care, which takes place every two years (details can be found under Courses, Study Days and Conferences page 15). If you would like to be added to our mailing list for the next Tyˆ Hafan event, please email insight@tyhafan.org.

Tyˆ Hafan is currently undergoing a significant period of leadership change.

Head of Care Services and Assistant Editor of Insight, Cath Thompson, left us for a new position as Clinical Manager at Skanda Vale Hospice at the end of February and Director of Care, Jayne Saunders retired in April. I welcome Tracy Jones, who has recently been appointed as Interim Head of Care Services, as the new Assistant Editor and I am pleased to say that Cath has agreed to remain on our editorial panel as an external reviewer. We are so lucky to retain the benefit of her experience and expertise.

We also welcome Suzie Howe to the

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editorial panel. Suzie is a Care Services Team Leader at Tyˆ Hafan who has a wide range of experience. Suzie will be acting as our internal peer reviewer/critical friend and I look forward to working with her in taking Insight forward. Brief details of our existing editorial panel and biographies of our new members can be found on page 3.

In this edition, we have focused on issues surrounding end-of-life care and have two articles which have been adapted from assignments submitted as part of the MSc module in Symptom Management for Paediatric Palliative Care at the University of South Wales (details on the Courses, Study Days and Conferences page). Suzie Howe discusses decision-making about compassionate extubation and Ceri Hancock and Hayley Humphries explore withholding nutrition and hydration at end-of-life.

News on the educational front is that we will be implementing the Coventry and Warwickshire CYP interactive competency framework, which will enable us to formalise the very best evidence-based teaching and assessment standards for our clinical staff. I attended the RCN Education Forum Conference in Nottingham in March, where I presented a poster outlining an evaluation of the impact of my role at Tyˆ Hafan. This was a great opportunity to network with other nurse and healthcare educators and to gain a deeper understanding of the work being undertaken throughout the UK. I was back in Nottingham from 20 - 22 April for the RCN International Research Conference. It was an informative and

inspiring three days, hearing about research project findings and considering how these could be used to improve practice.

The next issue will include a reflective piece from one of our Care Services Team Leaders, Elise Malpiedi. Elise is currently undertaking an MSc in Pain Management at Cardiff University and she will be reflecting on how this educational experience has influenced her practice in paediatric palliative care.

Finally, I would encourage you all to share your experiences, ideas and thoughts with us. Guidelines for submission of articles are included on the back page or, if you wish, just send a letter, or information sharing request. We would be pleased to hear from you.

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editorial panel

Cath Thompson - Clinical Manager, Skanda Vale Hospice

Melda Price - Lecturer and Field Lead for Children’s Nursing Pathway, School of Healthcare Sciences, Cardiff University

Vera Clement - Palliative Care Clinical Nurse Specialist for Children and Young People, Cwm Taf Local Health Board

Tracy Jones - New Assistant Editor, Interim Head of Care Services, T yˆ Hafan I am the Interim Head of Care at T yˆ Hafan. I have worked at T yˆ Hafan since 2009, starting as the senior practitioner with the Family Support Team and then taking the role as Lead Practitioner for Community Palliative Care Services in 2012.

My professional background is Social Work, qualifying with my Masters degree in Social Work in 1997. I have worked primarily in the field of children with complex disabilities which has included significant interface with Safeguarding, Child Protection and children in the Looked After Care System. I have spent several years working on specialist fostering schemes for disabled children with complex needs, both in Leeds and Rhondda Cynon Taff. My interest in this field started after I became an approved foster carer to provide short breaks to disabled children which gave me the privilege of caring for

three amazing children over a ten year period. One of my link children died as a young teenager and there began my interest in palliative care and supporting families on their journeys with their life-limited children.

Professional areas of interest include end-oflife care, choice of place of death, transition to adult services, sibling support needs and service user engagement in evaluation and service development.

Suzie Howe - New Peer Reviewer, Care Services Team Leader, RGN/RSCN I qualified as a Registered General Nurse in 1988 with the intention of nursing children and gained my first job on the paediatric surgical ward at the University Hospital of Wales.

Following qualifying as a Registered Sick Children’s Nurse in 1990, I continued to work in the acute sector for the next 13 years. During this time I worked in many areas within paediatrics for Cardiff and the Vale, including orthopaedic surgery, general medicine, oncology, renal, cardiac and finally paediatric high dependency, giving me the opportunity to gather experience and practice a great range of practical skills.

I became a senior staff nurse/patient care coordinator in 1995 and continued to develop my skills in leadership and management and teaching and assessing.

During my nursing career, my special interest has always been working with children who have complex medical needs and their families. Since joining the Tyˆ Hafan team in 2003, I have been able to use my previous knowledge and practical skills to

provide paediatric palliative care to the families that access our services.

While at Tyˆ Hafan, I have gained further skills and knowledge in symptom management, end-of-life care and emotional care.

My role also enables me to continue teaching and supporting the care services team and ensuring that we always provide evidence-based care of the highest standard.

I enjoy working within the organisation as a whole, seeing how the charity is run and the immense task of fundraising to sustain the service we provide. I regularly volunteer for events and enjoy the interaction this provides with other teams and the families outside of my role as a care services team leader.

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sharing best practice in paediatric palliative care. volume 2 issue 1

withholding nutrition and hydration at end of life: paediatric palliative care considerations Ceri Hancock, Care Services Team Leader, T yˆ Hafan Hayley Humphries, Lead Practitioner Hospice Palliative Care Services, T yˆ Hafan This article explores the implications of withholding artificial hydration and nutrition at the end of a child’s life in a palliative care setting.

The delivery of hydration and nutrition in children in the end stages of life has created much controversy and debate in the nursing and medical profession. It is, therefore, essential that nurses working in the specialist field of palliative care have an awareness of both nutritional physiology and the impact of withholding nutrition and hydration in managing symptoms to enhance their practice and provide guidance and reassurance to children and their families at this time.

palliative care The World Health Organisation (WHO) includes within its definition, that ‘Palliative Care is an approach that aims to improve the quality of life of patients and their families and affirms life regarding dying as a normal process’ 1.

Total holistic symptom management is considered ‘the cornerstone of good palliative care’2 where Marston3 emphasises that ‘relief from pain and other distressing symptoms should intend neither to hasten nor postpone death’. Miller and Karwacki4 highlight that the fundamental principle of paediatric palliative care understands that symptoms are experienced simultaneously in a psychological, spiritual and physical sense.

Decisions about treatment for children who are dying are multi-dimensional and made in a multidisciplinary context along with parents5. Wherever palliative care is delivered - hospital, home or hospice - parents need to be fully informed, included and supported throughout the care of their child6. During the palliative care journey, professionals strive to

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carefully balance and consider the effectiveness of interventions, based on their assessments and reviews and in partnership with carers, parents and families7.

artificial hydration and nutrition Artificial hydration has been described as the delivery of nutrition and fluids to the human body parentally via an intravenous cannula or enteral route through tube devises - nasal gastric, gastronomy or jejunastomy - when children cannot meet their dietary requirements or it is considered unsafe to be fed orally8, 9.

The delivery of artificial hydration and nutrition in children at their end stages of life has created much controversy and debate in the nursing and medical profession. Influences and attributes that affect withholding artificial hydration will be considered further, focusing on ethical considerations in practise and research associated with the child, family, nursing and medical care. Despite the recognised basic need for food and water, decisions are often made when a child is near the end stages of life to actively withhold artificial hydration, when such treatment is no longer deemed as being beneficial to the individual10. Likewise Jassal2 states that ‘the body naturally declines in the dying process, needing less food and fluids in preparation for death’.

The Rainbows children’s hospice basic symptom control guidelines2 describe how excess nutrition and hydration input can lead to increased

secretions, respiratory infections, distress and, sometimes, heart failure.

These physiological associated factors may have notable effects on pain and suffering with requirements for increased medications. In practice, it is observed that when children are generally restless, they demonstrate their discomfort through facial and body language modes, often subtle cues picked up by parents and carers.

As a result of withdrawal or reduced feeding, parents and practitioners have noticed a decrease in symptoms such as reduced respiratory secretions which can all aid in the child experiencing a more comfortable death11. Continuing to administer feeds may bring more physiological burdens, increasing multi-factorial symptoms, suffering, distress and ultimately quality of life9, 11, 12.

Thus, a holistic approach in determining all possible reasons for decline in condition and its impact on the child should be undertaken2, 7.

A study by Levi13 concludes that it is unclear as to whether children who lack consciousness suffered or were in any way harmed when artificial hydration was withheld, due to their inability to communicate. Douglas et al14 found in their study that when artificial hydration is withheld from a patient, death is caused by the result of the patient’s physical condition and that the patients did not show any ill effects from withholding hydration. The side effects of withholding artificial hydration have been identified in cognitively able adult patients as being symptoms of thirst and a dry mouth15. It is, therefore, essential to ensure adequate oral care is maintained

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to alleviate such symptoms8 and it is imperative that the quality of the child’s life, comfort and a peaceful death is paramount, rather than prolonging life at all costs14, 16.

ethical considerations Ethics is defined as a moral code in which the moral fitness of a decision or course of action can be upheld17, 18. Prolonging life and curing ill health has traditionally been the main priority of medicine, with the nurse’s role conventionally being for caring rather than one of cure19. While the ultimate goal of medicine has historically been to cure, further consideration must be made to the quality of life. Therefore, if providing artificial hydration is not in the child’s best interest, withholding such treatment must be considered. The Royal College of Paediatrics and Child Health20 states that fundamental to issues relating to withholding or withdrawing treatment has to be that the child’s best interests are observed. Clinically assisted feeding is considered in law as a medical treatment that can be ethically and legally withdrawn or withheld if it observes this principle21.

Geppert el al22 recommend that both clinicians and patients need guidelines to help make sound ethical medical choices within practice settings. Doyal and Larcher 23 suggest these should be reflective of the wide-ranging and diverse backgrounds of healthcare deliverers and contain direction about

how disputes may be resolved including those between professionals and parents. An article provided by Griffith24 discusses various cases in different situations and concludes that where parents strongly oppose the giving or withholding of treatment, court approval will be needed. An online case scenario presented by Chin et al25 highlights how conflicts can arise in the face of grief and turmoil within a family facing the death of their child. The essence of the case discussed that families need support and agreement throughout the whole team to help families deal with clinical decisions being made. This type of resource for professionals is useful in thinking about clinical situations and how families can be supported in making decisions for the best interests of their child.

The parents and professional team need to work in partnership when making choices for a child’s care when a child is unable to do so themselves.

the child and family Conversations are often sensitive, controversial and difficult to have with parents/carers and children when cognitively able, whilst considering withholding artificial hydration14. When such conversations are required, the child is predominantly near the end of their life and, consequently, the family are already burdened with preparing for their loss. Raising such an emotive topic at this time, the family are often faced

with further stress when they are already emotionally and physically exhausted26.

Increased emotional status in parents is recognised and assumptions have been made that the child is being given up on, neglected or abandoned, when treatment is withheld27. Earlier work

by Andrews28 identified that emotional reactions experienced in such cases may include anger, hostility, denial, guilt, overprotection, anxiety, depression and social isolation. Rapoport et al11 conducted a series of interviews on withholding fluids in children of bereaved parents and found that withholding fluids was acceptable for some parents given that their child had a peaceful and comfortable death.

A child who is deemed to be Gillick Competent has the right to make choices in relation to their treatment and care by making an informed decision, yet a child who does not have the capacity to make such a decision relies on others to act in their best interest 29. When a child cannot make such a decision, their parents are faced with making holistic decisions for their child. It is usual that there is a mutual agreement between the parents and professional team when decisions relating to withholding hydration are made30. The GMC16 specifies that when a decision is made on a patient’s behalf, the decision made must be in the best interests of the patient and the overall benefits must be assessed.

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sharing best practice in paediatric palliative care. volume 2 issue 1

professional perspectives The approach from the professional team is essential and must be sensitive and incorporate much skill and care during difficult conversations with the family 22.

Discussions between the parents and professionals must ensure that the treatment offered is clinically appropriate and in the best interests of the child16. It is therefore essential to ensure that parents understand that by choosing to withhold hydration, their child will still receive care which will focus on palliation rather than cure20.

Intrinsic to working in partnership with families is a shared common goal of what the child and family need32. Acknowledging professional opinions when weighing up decisions of withdrawing feeding is based on collaborative multi-professional working practice21. One parent in the Rapoport et al study was quoted as saying that “health care professionals should get together and come to an agreement first about choices and then present them to the family” (p865). In recognition of discussions held with the parents in the study, it was recommended that personal beliefs, opinions and objections should be voiced without families being present to avoid any negative impact in their decision-making. Another study in the palliative care arena emphasised the value of gaining family and parental trust suggesting how difficult it can be to reverse negativity following on from a clinical decision that was deemed by family members to be wrong32. Therefore, it can be deduced that parental feelings and beliefs, within contextual emotive decision-making, is a fundamental

“While evidence suggests that withholding artificial hydration when a child is near their end stage of life is beneficial, there is still limited research available on children”

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aspect of what must be considered when consultation about withholding nutrition and hydration at the end of a child’s life is discussed.

Attitudes of nurses and doctors have been examined in a quantitative study

by Miyashita et al33 and they established that often doctors and nurses have varying attitudes towards artificial hydration. It is essential, therefore, that nurses and doctors are confident, competent and have a consistent approach, whilst supporting each other in decision making in relation to withholding artificial hydration at the end of a child’s life.

conclusions The decision to withhold nutrition and hydration in children is a difficult and complex issue and has raised many ethical dilemmas to both the family and professional team involved in the endof-life care of a child. The child’s comfort and best interests are paramount when decisions are made in relation to withholding artificial hydration. The professional team have a responsibility to the child and family to work in partnership throughout the decisionmaking process. To withhold artificial nutrition or hydration in a child may create many challenges and anxieties for both the family and the professional team. It is, therefore, essential to ensure parents are fully involved in the decision making process, with emphasis on the best interests of the child.

While evidence suggests that withholding artificial hydration when a child is near their end stage of life is beneficial, there is still limited research available on children. It is essential that nurses have sound knowledge and an unbiased attitude when discussing withholding artificial nutrition and hydration with families. Nurses have a key role in supporting the family when difficult decisions need to be made and need to ensure that they are adequately educated and updated in their practise, working collaboratively with all the people involved in the decision making process.

Current available evidence highlights a paucity of information regarding withholding nutrition and hydration at the end of a child’s life. Much of current literature focusses mainly on oncology

patient treatment and the adult palliative care arena. Symptoms that lead to the decision to stop feeding a child considers the palliative stance of quality of life and the goal of a ‘good death’, made in the best interests of the child11. Adult literature discussing this topic supports the overriding goal of what is best for patients27.

It is considered essential that nurses working in the specialist field of palliative care have an awareness of both nutritional physiology and the impact of withholding nutrition and hydration.

Knowledge surrounding symptom control will inform their practice and provide guidance and reassurance to children and their families at this time.

Equally important is an understanding of ethical decision-making processes, deemed as crucial for the palliative practitioner in contributing effectively to discussions where inherent ethical dilemmas exist. These should be based on individual assessment using a wholeteam approach, involving families in the process 34.

In summary, it is viewed that further exploration of both parent and professional perceptions would aid practitioners’ abilities to provide support within the context of these types of decisions, seen as one of the most difficult that parents and professionals face27. The recommendations of the Rapoport et al11 study suggested clinicians need to anticipate doubts and ensure guidance throughout the endof-life phase. Responding to questions at all stages as this, they highlighted, was key to ensuring they and their children received the best possible support and care at such difficult times.

Most relevant in moving forward and achieving this goal is a proposal of the Welsh government’s end-of-life plan35, whereby, in its delivery aspirations, it advocates continued education of professionals including encouragement for both participation and the conducting of research in all areas of end of life care.

Join the debate Nutrition and hydration are fundamental to care and a child’s physical growth and development, so withdrawal of these requirements is, naturally, a contentious topic. We would encourage you to join the debate on this issue and share your opinions and/or experiences with us (maintaining confidentiality of course).

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references 1. World Health Organisation (WHO) (2013) Definition of Palliative Care, available at http://www.who.int/cancer/palliative/ definition/en/ 2. Jassal, S. S. (Ed) (2013) Basic Symptom Control in Paediatric Palliative Care: The Rainbow Children’s Hospice Guidelines, Ninth Edition, Bristol, Together for Short Lives, Available online http://togetherforshortlives.org.uk (accessed December 10 2013) 3. Marston, J. (2014) Response to children’s Euthanasia in Belgium, ehospice, available at http://ehospice.com (accessed 27 January 2014) 4. Miller, M. and Karwaki, M. (2012) Management of the gastrointestinal tract in Paediatric Palliative Care in Goldman, A., Hain, R. and Liben, S. (Eds.) (2012) Oxford Textbook of Palliative Care, 2nd Edition, Oxford, Oxford University Press.

5. Price, J. and McNeilly, P. (Eds.) (2009) Palliative Care for Children and Families: An Interdisciplinary Approach, Basingstoke, Palgrave Macmillan.

6. Pfund, R. and Fowler-Kerry, S. (Eds.) (2010) Perspectives on Palliative Care for Children and Young People, A Global Discourse, Radcliffe, Oxford.

7. Grinyer, A. (2012) Palliative and End of Life Care for Children and Young People, West Sussex, John Wiley & Sons.

8. Tsai E (2011) Withholding and withdrawing artificial nutrition and hydration. Paediatric Child Health, 16, 4, 241-242.

9. Thompson, A., MacDonald, A. and Holden, C. (2012) Feeding in Palliative care in Goldman, A., Hain, R. and Liben, S. (Eds.) (2012) Oxford Textbook of Palliative Care, 2nd Edition, Oxford, Oxford University Press.

Collins English Dictionary Home Edition, Glasgow, Harper Collins.

19. Wainwright P, Gallagher A (2007) Ethical aspects of withdrawing and withholding treatment. Nursing Standard 21, 33, 46-50.

20. Royal College of Paediatrics and Child Health (2004) Withdrawing or Withholding Life-Sustaining Treatment in Children: A Framework for Practice, 2nd Edition, London, RCPCH. 21. Diekema, D.S. and Botkin, J.R. (2009) Clinical Report: Forgoing medically provided nutrition and hydration in children, Pediatrics, 124 2, 813-822.

22. Geppert, C. M.A., Andrews, M. R. and Druyan, M.E. (2010) Ethical Issues in Artificial Nutrition and Hydration: A review, Journal of Parenteral and Enteral Nutrition, 34, 79-88.

23. Doyal, L., Larcher, V G (2000) Drafting guidelines for the withholding or withdrawing of life in, Archives of Disease in Childhood, 83, 1 Available online at ProQuest Nursing & Allied Health Source, F60-F63, (Accessed 4 March 2014).

24. Griffith, R. (2013) Determining what is in the best interests of a critically ill child, British Journal of Nursing, 22, 2, 112-113.

25. Chin, J., Berlinger, N., Dunn, M.C., Ho, C.W.L., & Gusmano, M.K. (Eds.) (2014) Making Difficult Decisions with Patients and Families: A Singapore Casebook, Singapore, National University of Singapore, available at http://www.bioethicscasebook.sg (accessed 21 January 2014).

26. Crawford, D. and Way, C. (2009). Just because we can, should we? A discussion of treatment withdrawal. Paediatric Nursing, 21, 1, 22-25.

27. Holmes, S. (2010). Withholding or withdrawing nutrition at the end of life. Nursing Standard, 25, 14, 43-46.

10. British Medical Association (2005). Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision Making. BMA, London.

28. Andrews, K. (2004). Medical decision making in the vegetative state: Withdrawal of nutrition and hydration.

Neuro-Rehabilitation, 19, 299-304 IOS press.

11. Rapoport, A., Shaheed, J., Newman, C., Rugg, M. and Steele, R. (2013) Parental Perceptions of Forgoing Artificial Nutrition and Hydration During End-Of-Life Care, Palliative Care: Nausea, Vomiting, Constipation, Anorexia, Cachexia, Pediatrics, 131, 5, 861-869.

29. Archard, D. and Skinenes, M. (2009). Balancing a Child’s Best Interest and a Child’s Views. The International Journal of Children’s Rights, 17, 1, 1-2.

12. Stiles, E. (2013) Providing artificial nutrition and hydration in palliative care, Nursing Standard, 27, 20, 35-42.

13. Levi, B.H. (2003). Withdrawing Nutrition and Hydration from Children: Legal, Ethical, and Professional Issues. Clinical Pediatrics, 139-145.

14. Douglas, S., Diekema, D.S. and Botkin, J.R. (2009). Clinical Report – Forgoing Medically Provided Nutrition and Hydration in Children. American Academy of Pediatrics, 124, 2, 813-822.

15. The National Council for Palliative Care (NCPC) and the Association for Palliative Medicine (2007) Artificial Nutrition & Hydration: Guidance in End of Life Care for Adults.

16. General Medical Council (GMC) (2010). Treatment and care towards the end of life: good practise in decision making.

General Medical Council.

17. Weller, B.F. (Editor) (2000) Ballière’s Nurses Dictionary, Twentythird Edition, London, Ballière Tindall.

18. Black, D., Groves, R., Hucker, H. and McKeown, C. (Eds.) (2009)

30. Tibballs, J (2007) Legal basis for ethical withholding and withdrawing life sustaining medical treatment from infants and children. Journal of Paediatrics and Child Health 43, 4, 230236.

31. Brown, E. and Warr, B. (2007) Supporting the Child and Family in Paediatric Palliative Care, London, Jessica Kingsley.

32. Wood, F., Simpson, S., Barnes, E. and Hain, R. (2010) Disease trajectories and ACT/RCPCH categories in paediatric palliative care, Palliative Medicine, 24, 8, 796-806.

33. Miyashita., M. Morita., T. Shima, Y., Takahashi, M. and Adachi, I. (2008). Nurses views of the adequacy of decision making and nurse distress regarding artificial hydration for terminally ill cancer patients’ a nationwide survey. American Journal of Hospice and Palliative Care, 24, 6,463-469.

34. Stringer, S. (2013) Moral choices in end of life care for children, Cancer Nursing Practice, 12, 7, 27-32.

35. Welsh Government (2013) Together for Health-Delivering End of Life Care A Delivery Plan up to 2016 for NHS Wales and its Partners, available at http://cymru.gov.uk (accessed 4 March 2014).

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sharing best practice in paediatric palliative care. volume 2 issue 1

making decisions about compassionate extubation:

the needs of parents and paediatric nurses Suzie Howe, Care Services Team Leader, T yˆ Hafan introduction Compassionate extubation is the withdrawal of life-support in the home, hospice or home like setting within the hospital, surrounded by loved ones1.

There is an increasing movement towards providing compassionate extubation within the realms of children’s palliative care2. The purpose being that families are given choices in regards to their child’s end-of-life care and where it should take place3. Thorough and compassionate care at the end of a child’s life involves learning how to discontinue life-sustaining treatments, when they no longer provide a means to a good outcome 4. Discussions surrounding compassionate extubation can be sensitive and emotive, but the greater challenge often comes in the period leading up to this event.

Discussing withholding or withdrawing life-sustaining treatment in children will always be contentious and difficult5. This piece will focus on the support needs of parents and paediatric nurses in making such decisions whilst focusing on the importance of maintaining choice; the clinical aspects of extubation will not be covered in this work. The discussion will also be confined to children who meet the criteria in the Association of Children’s Palliative Care (ACT) categories 2, 3 and 4, not children who have become acutely unwell or those who are in category 1 (Table 1)6.

the importance of choice to families The parents’ involvement in the end-of-life care of their child is an important aspect of care. To ensure that the experience is as meaningful as possible, parents must be empowered

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and included in all decision-making7.

Parents often find themselves in difficult situations which are complex and the uncertainty of such situations can be distressing. Seeing your child receiving artificial ventilation in a busy, noisy intensive care unit can be traumatic and when it becomes apparent that their treatment has become futile, effective and compassionate communication between families and paediatric nurses is essential8. Giving parents clear informed choices can promote a dignified, peaceful death in an environment where they can be together without inappropriate or non-beneficial intervention9.

During the practice of delivering compassionate extubation, assistance and support is needed for parents in the decision-making process10. In order that decisions are made correctly, the risks and benefits concerning future treatments and options of withdrawing interventions should be understood fully by parents, as lack of understanding could influence decision-making11.

It is often difficult to establish when the end-of-life phase begins due to the unpredictable trajectory of the child’s disease. The child may have experienced many episodes of deterioration followed by episodes of stability throughout their life12. It is, therefore, imperative that a thorough assessment and ongoing evaluation of the child’s condition is maintained, ensuring that the parents insight into every stage of illness is understood by all professionals involved13. Decision-making at this point may, therefore, be difficult, as all those involved realise that little more can be done to delay the child’s death. The ultimate goal then becomes to ensure the child’s comfort and to support the

family. Supporting evidence by Grinyer14 and Mellor et al15 suggests that the decisions made around a child’s death are full of challenges and the way and place where a child dies shapes how families deal with their bereavement.

The management of end-of-life care falls into two areas, firstly, by agreeing that the present treatment is futile, therefore, only continuing treatment to aid comfort and, secondly, once this shift in expectation has been reached how best to achieve this goal16. Communicating in a truthful and compassionate way with parents, when discussing their child’s prognosis and aims of forthcoming care, can help develop a sense of hope for a good death as opposed to a cure for their child17. Parents need to be reassured that while withdrawing life-sustaining treatment can mean loss of hope around survival, it doesn’t mean limiting or withholding all care18.

Simpson9 recognised that while parents felt empowered when given choices regarding their child’s end-of-life care, they may also feel overwhelmed by the decisions they were being asked to make. This could result in a negative effect by causing extra worry, confusion and a sense that they are actually deciding when their child will die, all of which could have a detrimental effect on their long-term grieving.

A study by Lowey19 established that families felt a team approach was beneficial when decisions around the child’s end-of-life were being made, due to the importance of them being involved in the decision-making process.

It is recognised that sometimes the correct decision may not ever be made, therefore, the aim should be to reach a goal that is best for the child and

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family at any given time. Time should be taken to ensure that the parents are comfortable with the decisions being made. Clear recommendations should always be given in order to support families and recognition that families may change their minds during discussions20.

choice of environment Choice about the environment where a child dies has been found to have a great impact upon families for many reasons. Being given the choice where a child dies is a basic standard of palliative care, whether it is in hospital, home or a children’s hospice3. The environment where compassionate extubation occurs is of great importance21. A study by Gupta et al22 found that a children’s hospice was an environment where compassionate extubation is appropriate, while an earlier case report by Needle23 found that extubation within a child’s home was beneficial and should be offered at the end of the child’s life.

Meyer et al24 explored parental perspectives on end-of-life care in the paediatric intensive care unit and found that many parents were grateful that they could regain some control regarding choice of the environment and events surrounding their child’s death. A later study by Simpson et al9 established that parents who had not been given the choice of their preferred environment, often felt intimidated when on an intensive care unit. Parents expressed that they were unable to get close to their child physically due to fear of disturbing life-sustaining equipment. This would,

therefore, suggest that the intensive care unit is not always the preferred choice for compassionate extubation, highlighting how essential informed choice is for the parents. Families appreciate the chance to spend time with their child in more peaceful surroundings before and after death and treasure the memory of being able to say goodbye in their own time24.

communication Communication is transferring information from one person to another, the aim is that the information given or received is understood. Two-way conversations that are managed well remain one of the main ways in which professionals develop relationships with families that are based on trust and respect8.

Baile et al25 devised a six step protocol for delivering bad news called SPIKES (Table 2), which advocates good practise guidelines for professionals to follow.

Similarly, the Royal College of Nursing (RCN)10 in their guidance ‘Breaking Bad News’ also recognised the importance of nurses being proficient in communication skills, as nurses frequently support parents when they are being given bad news. Nurses are often the key person with whom the parents will identify with. This guidance can be utilised as a tool in order to ensure that nurses are competent in communication skills.

Discussing end-of-life decisions with families requires incredible ability by all the professionals involved in the child’s care and will present many complex challenges26. Parents are often unprepared for the situation they find

themselves in and the professionals have no way of knowing how the parents will react to the news they are receiving regarding their child’s health10.

Inadequate communication has the potential for a family being confused and resentful, but if carried out effectively it can help the family accept and adjust to the current situation. The way in which information is imparted to families can have a lasting effect, and will be remembered forever 27.

what paediatric nurses need In order to meet the needs of children and their families regarding quality end-of-life care, nurses need to accept that the long established concept of intensive care and paediatric palliative care being separate services is no longer appropriate. Paediatric palliative care and paediatric intensive care are becoming more integrated so that they focus on providing best practice while delivering holistic palliative care 4. This has posed many challenges for nurses working within a paediatric intensive care unit as they are changing their focus from an intensivist approach in order to maintain life, to a palliative care approach28. In comparison, nurses working in paediatric hospices focus on providing comfort and support, accepting death as a probable outcome.

The paediatric intensive care unit is often an area where two teams of professionals (the intensive care team and the palliative care team) work well alongside each other, allowing families to receive the benefit of palliative care and advanced medical care while

“Where a child dies can have huge implications on the effect of the bereavement process for the family”

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sharing best practice in paediatric palliative care. volume 2 issue 1

delivering suitable support as changes in care alter 3. It is, therefore, imperative that the nurse supports the parents throughout the child’s care, ensuring clear communication with both teams. A study by Akinosji et al29 recognises that all paediatric nurses caring for children at end-of-life should be proficient in the principles and practice of palliative care and that further education, guidelines and pathways will help to ensure that best practice is achieved.

The Royal College of Paediatrics and Child Health5 maintains that ethically withholding or withdrawing treatments are the same, they also recognise that in practice there is an emotional difference for the professionals involved.

Paediatric nurses must, therefore, ensure that they are correctly informed and are clear about the difference in causing death and withholding or withdrawing treatment30. In an earlier study by Zwerdling et al11, emphasis is placed on there being acceptance among professionals that treatment has become futile, as information given to

families must be consistent. Beckstrand’s work18 relating to the paediatric nurses’ perceptions of obstacles and supportive behaviours in end-of-life care, found that nurses need to be aware and comfortable with their own feelings regarding death before they communicate effectively with parents, in relation to the care that their child is receiving. It was also found that nursing staff were able to offer families the opportunity to spend time with their child, caring for their everyday needs and supporting them in doing this, which proved to be beneficial to their practice.

conclusion There is limited research available on compassionate extubation within the realms of children’s palliative care, potentially due to this being a relatively new practice. Current research indicates that compassionate extubation and the environment where it takes place is beneficial to both the child and parent. Where a child dies can have huge implications on the effect of the

bereavement process for the family. It is, therefore, imperative that paediatric nurses have competent communication skills in order to support families when they are making decisions regarding end-of-life care and that the nurses are familiar with the choices that are available to families. Support and communication are key, the skills required of the nurse at the end-of-life care of a child should be part of the paediatric nurse training and built up throughout their career, ensuring evidence-based practice is followed. The use of guidelines and pathways should be incorporated into care as this will help assist the nurse when exploring choices with the parent and child. The nurse has a responsibility to promote best-practice and multidisciplinary teams should work and support each other in order to provide a safe, peaceful environment for children and their families at end-of-life. Further research needs to be carried out with families in order to have a clearer picture on what their feelings are in regards to end-of-life care and to establish if the services being offered are sufficient.

table 1 - categories for life-limiting and life-threatening conditions in children 6 Category 1

Life-threatening conditions for which curative treatment may be feasible, but can fail. Access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services.

Examples: cancer, irreversible organ failures of heart, liver, kidney.

Category 2

Conditions were premature death is inevitable. There may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.

Examples: cystic fibrosis, Duchenne muscular dystrophy.

Category 3

Progressive conditions without curative treatment options. Treatment is exclusively palliative and may commonly extend over many years.

Examples: Batten disease, mucopolysaccharidoses.

Category 4

Irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health complications and likelihood of premature death.

Examples: severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury, complex health care needs, high risk of an unpredictable life-threatening event or episode.

references 1. Sine, D. Sumner, L. Gracey, D. von Gunten, CF. (2001), ‘Paediatric extubation: pulling the plug’, Journal Palliative Medicine. 4, p 519-521.

2. Association for Children’s Palliative Care (2011) A Care Pathway to Support Extubation within a Children’s Palliative Care Framework.

3. Carter, B, Craig, F (2012) ‘Intensive care units’ in Hain, R, (ed.), Goldman, A, (ed.) and Liben, S, (ed.) Palliative Care for Children.

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2nd Edition. New York: Oxford University Press, p 402-409.

4. Munson, D.(2007) ‘Withdrawal of Mechanical Ventilation in Paediatric and Neonatal Intensive Care Units’, Paediatric Clinics of North America, 54, p773-78.

5. Royal College of Paediatric and Child Health (2004 Withholding or Withdrawing life sustaining treatment in Children, A framework for Practice,2nd Edition. p8.

6. Association of Children’s Palliative Care (ACT) (2009) A guide to the development of children’s palliative care services, 3rd Edition. Bristol, UK. Together for Short Lives.

7. Sumner, LH. Palliative care and neonatal loss: a model

T: 029 2053 2252 E: insight@tyhafan.org

table 2 - the SPIKES protocol 24 S

Setting up the interview Prepare yourself for the interview by reviewing any test results and having a plan. Arrange for some privacy, but involve significant others. Sitting down with the patient can relax him or her and show you are not rushing through the discussion.

P

Perception

Use open-ended questions to assess the patients / parents perception of how serious the medical condition is and whether he or she has realistic expectations of treatment.

I

Invitation

Ask questions to ascertain whether the patient is extending an invitation to provide full and detailed information. A patient not inviting you to tell all may delegate a friend or relative to receive that information.

K

Knowledge

Providing information about the patient’s prognosis might be eased by a forewarning that bad news is coming and by being clear, avoiding technical terms if you sense they might confuse the patient. Give information in manageable chunks and check to see if the patient understands. Avoid excessive bluntness.

E

Emotions

Address the patient’s emotions with empathic responses. Such responses also allow you to acknowledge your own sadness or other emotions, if they are present.

S

Strategy and Summary

Presenting treatment options to patients ready to receive them can allay anxiety and uncertainty, in addition to establishing shared decision-making and meeting legal mandates. This also provides an opportunity to clear up misunderstandings and “can prevent the documented tendency of patients to overestimate the efficacy or misunderstand the purpose of treatment”.

for community collaboration. Program and abstracts of the National Association of Neonatal Nurses 20th Annual Conference; October 13-16, 2004; Orlando, Florida.

8. Mack, W.Liben, S. (2012) ‘Communication’ in Hain,R, Goldman, A and Liben, S,(Eds) Palliative Care for Children. 2nd Edition.New York: Oxford University Press, p402-409.

9. Simpson, EC.Penrose, CV. (2011) ‘Compassionate extubation in children at hospice and home’, International journal of Palliative Nursing, 17(4), p164-169.

10. Royal College of Nursing (2013) Breaking bad news:supporting parents when they are told of their child’s diagnosis, guidance for nurses, midwifes and health visitors. London: Royal College of Nursing.

11. Zwerdling, T.Hamann, KC.Kon, AA. (2006) ‘Home paediatric compassionate extubation: Bridging intensive and palliative intensive care’, American Journal of Hospice and Palliative Medicine, 23:p224-228.

12. Brown, E. (2007) Supporting the child and family in paediatric palliative care, GB: Jessica Kingsley Publications.

13. Davies, D. (2012) Care in the final hours and days in Hain, R, Goldman, A and Liben, S (Editors). Palliative Care of Children 2nd Edition. New York. Oxford University Press.

14. Grinyer, A. (2011) Palliative and End of Life Care for Children and Young People; US; John Wiley and sons Inc. 15. Mellor, C, Heckford, E & Frost, J (2011) Developments in Paediatric Palliative Care. Paediatrics and Child Health, 22 (3) p.115-120.

16. Truog, RD. (2001) ‘Recommendations for end of life care in intensive care unit: The Ethics Committee of the Society of Critical Medicine’. Critical Care Medicine; 29(12) p2332-2347.

17. Voyles, E. (2013) ‘the development and Outcomes of a Paediatric Palliative Care Program; A quality Improvement Process’, Journal of Paediatric Nursing, 28 (2) p.196-199.

18. Beckstrand, RL. (2010) Paediatric nurses perceptions of obstacles and supportive behaviours in end of life care.

American Journal of Critical Care, 19 (6), p.543-52.

19. Lowey, SE. (2008) ‘Communication between the Nurse and family caregiver in End of Life Care: A review of Literature, Journal of Hospice and Palliative Nursing; 10(1) p35-45.

20. Hain, R. Goldman, A. Liben, S. (2012) Palliative Care for Children, 2nd Edition .New York: Oxford University Press.

21. Meert, KL. Briller, SH. Schum, SM. Thurston, CS. (2008) ‘Exploring parents environmental needs at the time of a child’s death in the paediatric intensive care unit’, Paediatric Critical Care Medicine, 9 (6), p623-628.

22. Gupta,N. Harrop,E.Lapwood,S.Shefler,A.(2013) ‘Journey from Paediatric Intensive Care to Palliative Care’, Journal of Palliative Medicine,16(4), p397-401.

23. Needle,JS.(2010) ‘Home extubation by a critical care team: Providing a compassionate death outside the paediatric intensive care unit’, Paediatric Critical Care Medicine,11(3), p401-403.

24. Meyer, EC, Burns, JP, Griffiths, JL. Troug, RD. (2002) Parental perspectives on end of life care in a paediatric intensive care unit, Critical Care Medicine, 30(1), p226-281.

25. Baile, WF. (2000) SPIKES - A six step protocol for delivering bad news:The Oncologist, 5, p302-311.

26. Laddie J, Craig, F, Brierley, J, Kelly, P and Bluebond-Langner (2014) Withdrawal of ventilator support outside the intensive care unit: guidance for practice. Archives of Disease in Childhood, 99. p812-816.

27. Fallowfield, L.Jenkins, V. (2004) ‘Communicating sad, bad, and difficult news in medicine, Lancet; 363(9405), p312-319.

28. Longden J (2012) ‘Paediatric palliative care and paediatric intensive care’. Nursing in Critical Care; 17(4), p167-168.

29. Akinosji, Y, McAuley, Al and Parking, J (2010) Compassionate extubation in a hospice: strengthening the links between hospice and paediatric intensive care. British Society for Paediatric Palliative Medicine / British Academy of Childhood Disease, 95:A20. Doi:10.1136/adc.

30. Crawford MA. (2009) Just because we can, should we? A discussion of treatment withdrawal. Paediatric Nursing, 21 (1), P22-25.

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sharing best practice in paediatric palliative care. volume 2 issue 1

journeys and destinations research and innovation in caring for children and young people with lifelimiting and life-threatening conditions Mandy Brimble, Lead Practitioner for Education and Research, T yˆ Hafan On 14 October 2014, Tyˆ Hafan hosted its first research and innovation conference at the Vale Hotel and Resort, Hensol, Vale of Glamorgan. The event was organised

by Mandy Brimble, Lead Practitioner for Education and Research at Tyˆ Hafan, in partnership with Professor Daniel Kelly, Director of Research and Innovation and RCN Chair of Nursing Research, Cardiff University.

The aim of the event was to provide an opportunity for speakers to showcase research and innovation projects which are completed or in progress and to facilitate networking for healthcare professionals and academics involved in paediatric palliative care. The title of the conference reflected the nature of caring for children with life-limiting and life-threatening conditions in that they and their families are on a journey where the destination for some is cure and recovery, whilst for others, it is death and bereavement.

A range of research and innovation projects which illustrated the diverse nature of this speciality were presented.

The introduction to the day was provided by the Chair, Catherine Thompson, former Head of Care Services at Tyˆ Hafan, followed by Dr Richard Hain, Consultant and Lead Clinician in paediatric palliative care medicine who set the scene for the day with his thought-provoking paper ‘Children: too precious to study, or too important not to?’.

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A Together for Short Lives funded project was then presented by Aaron Pritchard.

This project involved a multitude of stakeholders and the findings clearly illustrate the importance of a key worker for young people receiving palliative care who are in transition from child to adult services.

Jane Davies, PhD student and Senior Lecturer at Cardiff University, used a case study to share some very early findings from her research into decisionmaking in teenagers and young adults receiving cancer treatment. Emotional control in a paediatric oncology setting was the focus of Professor Daniel Kelly’s presentation entitled ‘Everyone is sad here’, which provided some sobering insights into this phenomenon.

Dr Mia Nelson, Research Fellow at Edinburgh University, highlighted the non-verbal and environmental factors which are prevalent in the transition from active to palliative care and how the actions and behaviours of professionals signpost the imminent delivery of bad news. This work, entitled ‘From signs and symbols to the room of doom’, provided a trigger for some thoughtful discussion on whether this is a negative or a positive ‘alert’ for the young person and family.

The final presentation of the day outlined the exploration and evaluation of an innovative project which supports fathers of children who have been cared for or are being cared for by Tyˆ Hafan. The early findings of the project were presented

by Hannah Williams, Community Care Services Team Leader, and Mandy Brimble, Lead Practitioner for Education and Research, both of Tyˆ Hafan. The value of this type of male-focused project was clearly illustrated by the selected quotations, as well as a wealth of data to inform future service provision.

Feedback on the day was extremely encouraging with much enthusiasm for future events and collaborative projects.

“Brilliant conference!

Great to meet so many practitioners and researchers all working together to deliver excellent palliative care for young people across the U.K.”

T: 029 2053 2252 E: insight@tyhafan.org

information sharing request Tyˆ Hafan is currently exploring the use of blended diets in gastrostomy-fed children. Although we are seeing an increase in children being fed this way, you will undoubtedly be aware that, at present, this form of feeding is not endorsed in the UK, generally.

We have recently formed a working group to look into whether Tyˆ Hafan staff will be able to deliver this intervention in future and we would very much welcome any information that you have with regard to your use of this method. It is essential that we consider all the evidence, for and against, before coming to

any decision and, as you will appreciate, this is not a decision we can make quickly.

We will keep you informed of progress, but in the meantime, please feel free to get in touch with any suggestions or comments you may have.

Hayley Humphries Lead Practitioner for Hospice Palliative Care Services Email: Hayley.humphries@tyhafan.org Tel: 029 2053 2200

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sharing best practice in paediatric palliative care. volume 2 issue 1

the european association of palliative care (EAPC) conference 2015 -

‘building bridges’ Anna Bowyer, Sibling Support Coordinator, T yˆ Hafan Palliative Care is a wide-ranging, rapidly-evolving discipline which embraces holistic care considerations, end-of-life provision and the relationship between research and change in service delivery. To this end, the EAPC holds an international biennial conference, to display and promote novel palliative care research and practice from across the globe. With this year’s theme of ‘Building Bridges’, the conference focused on fostering collaborative working and sharing good practice to positively impact palliative care provision internationally.

In my previous role as a palliative care researcher, I took part in two pieces of research, one as a lead author and one as a co-author, that were accepted to the conference as poster presentations.

The first explored patient and carer questionnaires and the importance of using free-text feedback to influence palliative care provision1. The second

questioned the ethical issues of social media as a data source in end-of-life research2. The EAPC conference was an ideal opportunity to present my research, while learning of international work relating to my current role as Sibling Support Coordinator within Tyˆ Hafan.

With a high number of parallel sessions, the conference catered for all interests.

The conference content ranged from practices within palliative medicine pertaining to specific medical advances and interventions, to the role of families in paediatric advanced care planning.

Attending the conference highlighted the lack of research into family member specific work, for example, the impact of sibling or dads groups, something that Tyˆ Hafan offer routinely as part of its service. Tyˆ Hafan provides such innovative provision in these service areas, as well as holding expertise in neonatal end-of-life care, the central

There is scope to promote this innovative work on both a national and international stage.

importance of play in a palliative care setting and the continuing bonds in bereavement work with children and families.

There is scope to promote this innovative work on both a national and international stage.

Further information on the conference and its content can be found on: http://www.eapc-2015.org/

references 1. Bowyer, A., Finlay, I., Byrne, A., Sampson, C., Snow, V., & Nelson, A. (2015) Gaining an accurate reflection of the reality of palliative care through the use of free-text feedback in questionnaires: the AFTER study. [Manuscript submitted for publication]

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2. Hopewell-Kelly, N., Baillie, J., Sivell, S., Bowyer, A., Thomas, K., Prout, H., Taylor, S., Sampson, C., Newman, A., & Nelson, A. (2015). The use of Social Media in a Palliative Care research centre. [Manuscript submitted for publication]

T: 029 2053 2252 E: insight@tyhafan.org

courses, study days and conferences courses Cardiff University MSc/PGDip/PGCert in Pain Management via Distance Learning/ E-Learning. More information available at: courses.cardiff.ac.uk/postgraduate/course/detail/p231.html Cardiff University MSc/PgDip in Palliative Medicine/Palliative Care. More information available at: courses.cardiff.ac.uk/postgraduate/course/detail/p233.html University of South Wales Symptom Management for Paediatric Palliative Care 10 credit E-Learning MSc Module, managed by Sue Dunlop and Dr Richard Hain. Email Sue for more information: sue.dunlop@southwales.ac.uk

conferences International children’s palliative care network Cardiff University - Medicine and Compassion: Tool for the Task Or Dangerous Distraction?

7th Cardiff International Conference 2015 Paediatric Palliative Care 8 - 10 July 2015. Contact: paedpalcare-bounces@act.org.uk for more information.

publications of interest Hain, RDW (2014) Euthanasia: 10 myths. Archives of disease in childhood. Available online: doi:10.1136/archdischil-2014-306218 Brown, S (2014) Blended food for enteral feeding via a gastrostomy. Nursing Children and Young People, 26 (9), p16 - 20.

Boucher, S et al (2014) The Role of Play in Children’s Palliative Care. Children 2014, 1, p 302-317. Available online: doi:10.3390/ children1030302 ChiPPS E-Journal (2014) Children with Medical Complexities. Part One. Issue 36. Available online: http://www.nhpco.org/sites/ default/files/public/ChiPPS/ChiPPS_ejournal_Issue-36.pdf ChiPPS E-Journal (2015) Advance Planning in Pediatric Palliative Care, Part One. Issue 38 Available online: http://www.nhpco.org/sites/default/files/ public/ChiPPS/ChiPPS_ejournal_Issue-38.pdf

Kirk, L et al (2014) Educating Parents on Gastrostomy Devices: Necessary Components to Achieve Success. Journal of Pediatric Nursing 29, p457 - 465.

Maynard, L & Lynn, D (2014) Innovative approach to providing 24/7 palliative care for children. Nursing Children and Young People, 26 (6), p27 - 34.

Parker, H (2014) Family-focused children’s end of life care in hospital and at home. Nursing Children and Young People, 26(6), p 35-39.

Sidebotham, P et al (2014) Patterns of child death in England and Wales. Lancet 384, p 904-14.

Steele, R et al (2014) Charting the territory: symptoms and functional assessment in children with progressive, noncurable conditions. Archives of disease in childhood. 99, p 754 - 762.

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would you like to submit an article?

The primary function of Insight is to share best practice in paediatric palliative care. Although Tyˆ Hafan publishes the journal, our aim is to provide a collaborative platform for all those working in this field. Therefore, your contributions are both welcomed and valued.

All articles should be submitted electronically to Mandy Brimble, Editor and Lead Practitioner for Education and Research to:insight@tyhafan.org Submissions will be scrutinised by the Editorial Board who may request changes or for the article to be rewritten. The Editorial Team may reject an article, or hold the article on file for a subsequent edition. Articles can be submitted by a single author or co-written.

Submissions should be written in Arial 12 and submitted as a Word document.

Referencing style is the footnote numbered system. Articles that include details of children and families must be anonymised.

intended to educate and should include condition details and other relevant information. The article may look at a specific palliative need or a specific condition with multiple palliative needs. d ebate (approximately 500-700 words) This article is intended to create debate amongst fellow professionals on a palliative care topic which divides and creates multiple opinions. The article may be contentious and a current ‘hot potato’ as it were. The article will be heavily based on available evidence to support the many arguments, and will actively seek the views of the target audience.

Submitted articles may fall under one of the following categories:

r eflection (approximately 300-700 words)

quality improvement articles (approximately 300-500 words)

This article is intended to highlight an analysis of a particular topic of relevance to children’s palliative care. It may be current or historical.

In this type of article the author wishes to highlight a new or current service or intervention which reflects the principles of children’s palliative care. The article must give a rationale for the service or intervention based on evidence from policy, research or a specialist body of knowledge. case studies (approximately 500-1,000 words) This article is intended to highlight the specific needs of the child and family and the support and interventions required to meet those specific needs. The article is

regular features Every edition will contain newsworthy or relevant items such as, details of courses and study days, updates of policy and consultations, news from Managed Clinical Network and South Wales Paediatric Palliative Care Forum Information noticeboard.

The word count allowances are an approximate guide, longer or shorter pieces will be considered.

If you have any queries about making a submission please contact Mandy Brimble on 029 2053 2245 or email insight@tyhafan.org

insight@tyhafan.org Tyˆ Hafan - Head Office Hayes Road, Sully, CF64 5XX Tel: 029 2053 2245 Fax: 029 2053 2821 Charity no. 1047912