End of Life Care Guidelines for Infants, Children and Young People

Publication: 15/06/2015  --
Last review: 23/11/2018  
Next review: 23/11/2021  
Clinical Guideline
ID: 4230 
Approved By: Trust Clinical Guidelines Group 
Copyright© Leeds Teaching Hospitals NHS Trust 2018  


This Clinical Guideline is intended for use by healthcare professionals within Leeds unless otherwise stated.
For healthcare professionals in other trusts, please ensure that you consult relevant local and national guidance.

End of Life Care Guidelines for Infants, Children and Young People

Quick reference guide

Key Elements of Care for the Dying Child:

  1. Recognition that the child is dying.
  2. Clear, compassionate communication with patient (where possible and appropriate), and always with the parents, family and loved ones.
  3. Provision of spiritual care to patient and family.
  4. Development of an individual care plan with full discussion with patient (where possible and appropriate), and always with the parents, family and loved ones including discussions regarding place of care. This should be shared with the family and appropriate professionals including GP, ambulance service and children’s community nurses if the child is being discharged to home/hospice.
  5. Clear documentation of resuscitation status should be made by completing a Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) with the patient (where possible and appropriate), and always with the parents, family and loved ones.
  6. Anticipatory prescribing for symptoms including pain, respiratory tract secretions and shortness of breath, agitation, nausea and vomiting and seizures as per the Together for Short Lives Basic Symptom Control in Paediatric Palliative Care Guideline, and if appropriate, the Yorkshire and Humber Children and Young Peoples Cancer Network (YHCYPCN) individual symptom guidelines.
  7. The focus of care should be on promoting comfort, and minimising distress and painful interventions including discontinuation of non-essential medication.
  8. An MDT review of hydration and nutritional needs should occur in conjunction with patient (where possible and appropriate), and always with the parents, family and loved ones.
  9. Regular reassessment of the patient should occur.
  10. Parents and carers should have an up to date list of emergency numbers for staff and agencies they may need to contact including access to a key worker if they are being discharged to home/hospice.
  11. There should be an opportunity for the family to discuss their wishes for care after death.
  12. Dignified and respectful care for patient and family should occur after death and bereavement follow up should be offered from the child or young person’s treating consultant team.

For further information please refer to the full End of Life Care Guideline.
Further advice is available from:
The Child’s Consultant or out of hours the Consultant on call for the specialty
The medical team at Martin House Children’s Hospice
The Children’s Haematology & Oncology Outreach Team 8-6 Mon - Fri Ext - 22323; Out of hours the Nurse on call – pager 07623 987119
The Children’s Pain Management Team Ext - 23546; Bleep 80-1912

End of life care (EoLC) in Children and Young people

This document has been produced to provide guidance for health professionals looking after children and young people who are entering the ‘end of life’ phase of their care. A separate document is available specific to neonates, “The Guideline for Babies under the care of Neonatal Services Requiring Palliative or End-of-Life Care”. This is available on Leeds Health Pathways.

Together for Short lives defines ‘end of life’ as the phase of life which begins when a judgement is made that death is approaching. Whether this occurs suddenly or gradually over time, careful planning in conjunction with the family is needed to help children and young people live as well as possible until they die.

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Good EoLC care should:

  • Enable the child/young person and family to exercise choice
  • Prepare the child/young person and family for an anticipated death in the place of their choosing (where possible)
  • Enable management of the end stage of a terminal medical condition including care at the time of death and immediately afterwards. This should include the management of symptoms and the holistic care of the child and family

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  1. Recognition that the child is dying

    Recognising that a child or young person is entering the last days of life is difficult. Advance care planning prior to this stage ensures that children and young people have plans in place in order to manage emergency care and the terminal stages of their illness. The child’s main consultant, key worker and the family, along with the wider MDT should be involved in discussions to help recognise and plan for end of life from the earliest appropriate opportunity. The following documents may be helpful in recognising EoLC:
  2. Communication

    Communication with the child/young person and family regarding EoLC care should be performed by appropriately trained senior staff. It should be undertaken by the child’s named consultant and key worker or another designated medical or nursing professional who knows the family well. It should be in an appropriate environment with the child/young person, if appropriate, and family members. The fact that the child/young person is entering the terminal stages of their illness should be clearly and compassionately communicated. The family should be informed of what to expect over the coming days in terms of symptoms and their management. An advance care plan should be discussed and initiated. Opportunity should be given for the patient’s and families wishes regarding place of care, management of symptoms, appropriateness of interventions, and care and support after death to be incorporated into the care plan. Written information should be offered if appropriate and interpreting services utilised if needed.

    Resources available include:

    Discussions should be documented carefully and disseminated to the family and appropriate professionals along with the completed advance care plan and Recommended Summary Plan for Emergency Care and Treatment (ReSPECT)

  3. Provision of Spiritual care

    An assessment of the patient and family’s spiritual needs should be made. Parents should be offered a visit from the appropriate hospital chaplain, or their own religious or spiritual leader. Out of hours the on call chaplain can be paged via switchboard for support and advice. Religious and cultural ceremonies should be offered and supported.
    Together for short lives has developed a factsheet for families which may be appropriate

  4. Development of an individualised end of life care plan

    The patient’s consultant and keyworker will develop an individualised care plan for the patient in consultation with the family. A template has been developed by the Child and Young Person’s Advanced Care Plan Collaborative for this purpose. This has been adopted by the Trust and is available for download from their website. This will be available on PPM+ in electronic format in 2019. This should include a list of key contacts, details of diagnosis and management to date, current clinical status, current medications, plans for management of individual symptoms, details of anticipatory medication provided in the palliative care drug box, and documentation of discussions regarding place of care and a copy of the ReSPECT form which documents discussions regarding patient and parent preferences for treatment in the event of an emergency situation. This is available to consultants on PPM+ as an electronic clinical document which can be printed out for the family. This supersedes the previous LOTA (Limitation of treatment agreement). If the child or young person is to remain in hospital for EoLC the nursing care plan for the dying child / young person should be used to guide care and management. Care plans can be obtained from Wards L31, PICU, NNU, the Children’s Haematology & Oncology Outreach Team and the bed manager.

    Symptom Management
    Guidance regarding the management of individual symptoms can be found in the Basic Symptom Control in Paediatric Palliative Care produced by Together for Short Lives1. Guidance on prescribing is available in the Association of Paediatric Palliative Medicine Master Formulary2(APPM). For oncology patients there are also current YHCYPCN guidelines available on Leeds Health Pathways:

    The patient’s Consultant, Paediatric Palliative Care Consultant, the Children’s Pain Team or the Paediatric Oncology & Haematology Outreach Team can also be consulted for advice.

    A symptom management plan for EoLC should be put in place. This should also be used as an opportunity to discuss with families possible symptoms and what to expect when their child dies including possible changes in appearance e.g. cyanosis, pallor. Possible symptoms such as pain, agitation, gasping should be explained sensitively in order to reassure parents of what is expected and that each symptom will be treated proactively. Parents should be made aware that the time until death after withdrawal of life sustaining treatments or a decision to offer palliative care can vary greatly and this should be clearly documented in the notes.

    Organ and Tissue Donation
    Discussion should also include the possibility of organ/tissue donation and how this may influence care before and after death. If a family in partnership with the child’s Physician has requested organ/tissue donation; transfer for EoLC care may not be possible depending on the organs/tissues to be donated. For some children organ and tissue donation may not be possible because of a child’s underlying diagnosis. Advice and support can be sought from the Organ Donation Service 0117 975 7575

    If a family in partnership with the child’s Physician wishes to request tissue donation; a discussion with The National Blood Service (NBS) on call Tissue Donation Nurse on 0800 432 0559 is essential in assessing if Tissue Donation is an appropriate option after death. The assessment will identify medical suitability as well as determine the logistical arrangements that will need to be made in order to retrieve donated tissues after the child has died. It will be the responsibility of the NBS Tissue Donation Service to gain consent for tissue donation and to coordinate all aspects of the Tissue retrieval following the Childs death.

    Post Mortem
    If there is any concern expressed around the cause of death from either medical staff or the child’s family, the coroner must be informed as soon as possible in order to identify the type of post mortem and any specific requirements. This may be a limiting factor for transfer for end of life care.

    If a family or the child’s physician in partnership with the family has identified the need or request for a post mortem following a child’s death, this will normally be a hospital post mortem and the coroner does not need to be informed. The arrangements for PM and consent need to be obtained and organised prior to discharge. It will also be necessary to organise transportation back to the hospital. Advice and support for post mortem can be obtained from the Nurse Specialist for Post Mortem Ext - 67027 Mobile telephone - 07900433617

    Place of care
    All families should be offered a choice of place of care for delivery of palliative care and this should include transfer to home or hospice for continuing care if local services are available. “The Children and Young People’s Palliative Care Guideline for Transfer for EoLC” is available on Leeds Health Pathways. This guideline exists to facilitate rapid discharge for EoLC to home or hospice if the family wishes.

    If care is to be undertaken in hospital, every effort should be made to care for the child in a private room, where the parents can sleep. Families should be given as much space and privacy as possible. Where this is not possible the bed space should be screened.

    Children can be discharged home under the care of the child’s General Practitioner and the children’s community nursing team or where available local hospice outreach services. For paediatric oncology patients the Children’s Haematology & Oncology Outreach Team will provide care coordination, symptom management advice and an out of hours on call service.

    The possibility of transfer home or to a children’s hospice should be discussed with the family and a plan should be agreed if this is their preferred place of care. To facilitate the guidance and documentation for Rapid Transfer for End of Life Care should be used. Transport home should be considered as part of the plan. Options can include the family’s own transport, the palliative care ambulance service or the EMBRACE team. Parents should be informed if there is a risk of the child/young person dying in transit, and the care plan should cover this occurrence. A ReSPECT form should also be completed and should accompany the child/young person on discharge. Drug charts should be photocopied and amended to the care plan, so that medication can be continued easily after leaving hospital. The GP should be informed of any discharge home for palliative care prior to the child leaving the hospital.

    Further advice and support for rapid transfer can be sought from the Children’s Haematology & Oncology Outreach Team or any of the Children’s Hospices in the region.

    Local hospices include:
Martin House Children’s Hospice

Grove Road, Boston Spa
Wetherby, LS23 6TX

01937 845045

Bluebell Wood Children’s Hospice

Cramfit Road, North Anston
Sheffield S25 4AJ

01909 517 369

Forget me not Children’s Hospice

Russell House, Fell Greave Road
Huddersfield HD2 1NH

01484 411 040

Dissemination of the care plan
If the patient is going to home or hospice the plan should be distributed to the family and all appropriate professionals including the GP, Patient’s consultant, keyworker, community nursing teams, hospice (if appropriate), school (if appropriate) and a copy should be filed in the patient’s notes and put on ppm (an electronic version on ppm will be available by December 2018).

  1. ReSPECT Agreement

    The aim of any treatment at end of life when no further curative treatment is available should be to ensure comfort and to avoid unnecessary and distressing interventions. This should be discussed with the child (if appropriate) and the family and any limitations of treatment including emergency care and resuscitation decisions should be formalised and documented using the ReSPECT form. This should be completed in electronic form on PPM+ and copies should be filed in the child’s notes, and distributed to the family and appropriate professionals. The child (if appropriate) and family should be made aware that this agreement may change in response to the child’s improving or deteriorating condition in consultation with them. A review date should be entered on to the ReSPECT form. When in hospital it should be reviewed at least weekly while the child is in hospital and as indicated by the child’s condition. Supporting documentation for ReSPECT including a standard operation procedure is available on Leeds Health Pathways. Patient and parent information, and staff information, including a guide for clinicians are available via the ReSPECT website http://respectprocess.org.uk/healthprofessionals .
    Until the full adoption of the ReSPECT documentation nationally, some patients coming in from other regions, may have other limitation of treatments in place. The time of transfer should be used as an opportunity to sensitively re-discuss the family’s wishes and to complete a ReSPECT form. Similarly if a patient is being transferred out of region the receiving team should be informed there is a ReSPECT agreement in place in case they need to complete any additional documentation.

  2. Anticipatory prescribing

    Anticipatory prescribing for symptoms including pain, respiratory tract secretions and shortness of breath, agitation, nausea and vomiting and seizures as per Basic Symptom Control in Paediatric Palliative Care1 and/or the YHCYPCN individual symptom guidelines should be undertaken and documented in the appropriate individualised care plan. Flow sheets are available within the hospital individualised care plan to help with this and in appendix 3. Guidance for drug dosing is also available in the APPM Master Formulary2. If the child is going to home or hospice anticipatory medications for symptom management should be prescribed. A palliative care drug box policy and supporting documentation for this is available on Leeds Health Pathways. On dispensing the medications and accompanying prescriptions are placed in a sealed box to accompany the child at discharge. The drug box will reside in the patient’s home in case required. A proforma in Appendix 1 can be used for this purpose. This can be delegated to an appropriately trained senior doctor or independent nurse prescriber if the patient’s consultant is not available. A drug administration chart should also be completed so that drugs can be administered by nursing teams in the home or hospice. Appropriate dose ranges should be documented on the prescription so that treatment can be escalated or reduced. Both of these prescriptions will be checked by either the appropriate departmental pharmacist or the pharmacist on call if out of hours. Copies of this documentation are included in the palliative care drug box, filed in the patient notes and distributed to all on contacts on the individualised end of life care plan. If the child requires a syringe driver for continuous parental drug administration a paediatric palliative care syringe driver prescription chart is available (Appendix 2). The same principles of anticipatory prescribing, dose ranges and ensuring adequate ward stock of prescribed medicines apply.

    To guide prescribing in symptom management flow sheets for the more common symptoms experienced by children and young people are provided in appendix 3 and are also incorporated into the “Multi Professional Care Plan for the Dying Infant, Child or young person”

    Advice and support for the prescribing and dispensing of palliative care drug boxes can be sought from the Children’s Haematology & Oncology Outreach Team. A standard operating procedure for the palliative care drug box is available on Leeds Health Pathways.

  3. Minimising painful interventions and review of medication

    At this stage of treatment the focus of care should be on promoting comfort and minimising distress. Investigations and procedures should be kept to an absolute minimum and only performed in the child’s best interests. Routine observations and blood tests should be discontinued whether the child is at home/hospice or in the hospital. A review of the patient’s medication should occur and all non-essential medication should be discontinued.

  4. Review of fluid and dietary needs

    An assessment of the patient’s fluid and dietary needs should be made. The goal of feeding and hydration in palliative care is to provide comfort and reduce distress from hunger and thirst. If the patient is less active their feeding and fluid requirements will be less than normal and this should be explained to the patient and family. The route of feeding should be that which is most suitable for the child or young person. A patient who is able to feed orally should be encouraged to do so. Nasogastric feeding can be considered in a child who is not able to feed orally, but who is hungry. It may not be possible to maintain hydration, and this is acceptable. Parenteral fluids are rarely indicated in palliative care. A patient who is unable to tolerate enteral fluids should be treated symptomatically for distress if required. Where death is predicted to be imminent, or where the provision of fluids is merely prolonging death fluids can and should be withheld in consultation with the patient (if appropriate) and family. If a patient is receiving TPN or IV fluids at the time when it is recognized that the child is dying, withdrawing the TPN/fluids should be considered, after discussion by the consultant with the patient (if appropriate) and family.

  5. Regular review

    At end of life symptoms can change on a minute to minute and hour to hour basis. It is important that careful plans are in place and that regular reassessment is undertaken in case these plans need to change or new symptoms develop. Regular planned review by appropriately trained staff should be undertaken and provision should be made to in case review is required as an emergency. Any changes in management should be documented and disseminated.

  6. Emergency Contacts

    An up to date list of emergency contacts should be detailed on the individualised care plan and distributed to the family and relevant professionals in case an emergency review is required or advice needed. This should include out of hours cover and it should be clear to the family who they should contact when.

  7. Planning for care after death

    As part of the individualised care plan the patient and families wishes for care after death should be discussed and documented. Provision should be made for any religious or cultural observances to be undertaken. Staff should explain and facilitate the option to create and collect mementoes. A memory box can be provided for this purpose. If families do not wish to take photos or foot and hand prints, consider offering to arrange for these to be done and kept, in case the family changes their mind at a later date.

    Parents may wish to spend time with their child after death, and if in hospital this should be accommodated in a private room. Other options for place of care after death are available including transfer home, to a children’s hospice, to a local chapel of rest and transfer to the hospital mortuary and these should be discussed with the family. There is a Standard Operating Procedure (SOP) for taking a Baby, Child or Young Person from Hospital after Death which is available on Leeds Health Pathways. Parents may wish to bathe and dress their child themselves after death, and staff should not do this without asking the parents first. Families should be provided with appropriate written information as appropriate as detailed above.

  8. Bereavement support

    There is a bereavement policy available on Leeds Health Pathways along with specific pathways to guide staff and families through the process immediately after death dependent on whether the child was on PICU or not and whether a Coroner’s PM, hospital PM or no PM is required. All families will be offered bereavement follow up. All families should be offered a follow up appointment with the Child or Young Person’s named consultant approximately 4-6 weeks after death to address any questions that the family may have.

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Further Advice

Children, young people and their families should have a key worker who will be responsible for their palliative care and symptom management and a lead Consultant should be identified who will coordinate their palliative care. With the child, young person and their family and the child’s consultant they will devise an individualised symptom management plan to help anticipate symptoms and the likely interventions required to address symptoms as they arise and develop. Professionals should, in the first instance, consult this for advice regarding symptom management. It should be clear to the family whom they contact out of hours for advice and support and this will vary depend on the specialty the child is under. Each child or young person will remain under the care of a consultant who is also available for advice and support to address patients’ symptom management needs and it is important that potential problems are anticipated as much as possible within working hours so that clear plans can be put in place by professional who knows the patient.

Outside of normal working hours professionals in primary / secondary care needing palliative care advice should contact

  • The Child’s Consultant or out of hours the Consultant on call for the specialty
  • The medical team at Martin House Children’s Hospice
  • The Children’s Haematology & Oncology Outreach Team 8-6 Mon - Fri Ext - 22323; Out of hours the Nurse on call – pager 07623 987119
  • The Children’s Pain Management Team Ext - 23546; Bleep 80-1912

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Appendix 1 - Emergency Drug Box Prescription

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Appendix 2 Inpatient paediatric palliative care syringe driver prescription chart

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Appendix 3 - Symptom Management Flow Sheets



Record: 4230
Clinical condition:
Target patient group:
Target professional group(s): Secondary Care Doctors
Secondary Care Nurses
Adapted from:

Evidence base

Resources/References / Evidence base
Paediatric Pallaitive Care Symptom Control Manual https://ppcscm.co.uk/

Association of Paediatric Palliative Medicine Master Formulary, Fourth Edition 2017

The British National Formulary for Children http://www.medicinescomplete.com/mc/bnfc/current/

Twycross, R., Introducing Palliative Care. Oxford: Radcliffe Medical Press, 1997 (second edition)

Goldman, A., Hain, R. and Liben, S., Oxford Textbook of Palliative Care for Children. Oxford: Oxford University Press 2006

Watson, M., et al,. Oxford Handbook of Palliative Care. Oxford: Oxford University Press, 2009 (second edition)

Yorkshire Cancer Network and North East Yorkshire and Humber Clinical Alliance,. A Guide to Symptom Management in Palliative Care, 2012 (Version 5.1)

Approved By

Trust Clinical Guidelines Group

Document history

LHP version 1.0

Related information

Not supplied

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