End of life care for infants, children and young people with life-limiting conditions: planning and management

This guideline covers the planning and management of end of life and palliative care for infants, children and young people (aged 0 to 17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

# Recommendations
People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.
In this guideline:
'Children and young people' refers to everyone under 18 years old. This includes neonates and infants.
'Parents or carers' refers to the people with parental responsibility for a child or young person. If the child or young person or their parents or carers (as appropriate) wish, other family members (for example siblings or grandparents) or people important to them (for example friends, boyfriends or girlfriends) should also be given information, and be involved in discussions about care.

# General principles
NICE has produced a guideline on babies, children and young people's experience of healthcare.
Recognise that children and young people with life-limiting conditions and their parents or carers have a central role in decision-making and care planning.
Discuss and regularly review with children and young people and their parents or carers how they want to be involved in making decisions about their care, because this varies between individuals, at different times, and depending on what decisions are being made.
Explain to children and young people and to their parents or carers that their contribution to decisions about their care is very important, but that they do not have to make decisions alone and the multidisciplinary team will be involved as well.
When difficult decisions must be made about end of life care, give children and young people and their parents or carers enough time and opportunities for discussions.
Be aware that continuity of care is important to children and young people and their parents or carers. If possible, avoid frequent changes to the healthcare professionals caring for them.
Be aware that siblings will need support to cope with:
their brother's or sister's condition and death
the effects of their parents' or carers' grieving.This may include social, practical, psychological and spiritual support.
Be aware that other family members (for example grandparents) and people important to the child or young person (for example friends, boyfriends or girlfriends) may need support. This may include social, practical, emotional, psychological, and spiritual support.
When developing plans for the care of the child or the young person with a life-limiting condition, use parallel planning to take account of possible unpredictability in the course of the condition.

## Communication
Think about how to provide information for children and young people with life-limiting conditions, taking into account their age and level of understanding. When appropriate, use formats such as:
-ne-to-one discussion
play, art and music activities
written materials and pictures
digital media, for example social media.
When deciding how best to communicate with the individual child or young person and their parents or carers, focus on their views and take account of:
their personal and family situation
their religious, spiritual and cultural beliefs and values
any special needs, such as communication aids or the need for interpreters.
Ask children and young people with life-limiting conditions and their parents or carers:
if there are other people important to them (such as friends, boyfriends or girlfriends, teachers, or foster parents) who they would like to be involved, and if so
how they would like those people to provide a supporting role.
Think about how best to communicate with each child or young person and their parents or carers:
when the life-limiting condition is first recognised
when reviewing and developing the Advance Care Plan
if their condition worsens
when they are approaching the end of life.
Ensure that all parents or carers are given the information and opportunities for discussion that they need.
When deciding which healthcare professional should lead on communication at a particular stage in a child or young person's illness, take account of:
their expertise and ability to discuss the topics that are important at that time
their availability, for example if frequent discussions are needed during an acute illness or near the end of life
the views of the child or young person and their parents or carers.

## Providing information
Be aware that most children and young people with life-limiting conditions and their parents or carers want to be fully informed about the condition and its management, and they value information that is:
specific to the child's or young person's individual circumstances
clearly explained and understandable
consistent
up-to-date
provided verbally and in writing.
Be aware that some children and young people and parents or carers may be anxious about receiving information about their condition.
Ask how children and young people and their parents or carers would like to discuss the life-limiting condition. For example:
Ask which topics they feel are important and would particularly want information on.
Ask whether there are topics they do not want detailed information on, and discuss their concerns.
If appropriate, ask parents or carers whether they think their child understands their condition and its management, and which professional their child would like to talk to about it.
If appropriate, ask parents or carers what they think their child should be told about their condition.
Discuss with the child or young person and their parents or carers their right to confidentiality and how information about their condition will be shared.
Review these issues with them regularly, because their feelings and circumstances may change over time, and they may need different information at different times.
When talking to children or young people and their parents or carers:
be sensitive, honest and realistic
give reassurance when appropriate
discuss any uncertainties about the condition and treatment.
Be alert for signs or situations that the child or young person or their parents or carers need more information or discussions, for example if:
they are more anxious or concerned
the child or young person's condition deteriorates
a significant change to the treatment plan is needed.
Provide children and young people and their parents and carers with the information they need on:
their role and participation in Advance Care Planning (see Advance Care Planning)
the membership of their multidisciplinary team and the responsibilities of each professional (see multidisciplinary team)
the care options available to them, including specific treatments and their preferred place of care and place of death (see preferred place of care and place of death)
any relevant resources or support available to them.

# Care planning and support throughout the child or young person's life
When a life-limiting condition is diagnosed, tell the child or young person (if appropriate) and their parents or carers about the condition and what it may mean for them (see also recommendations 1.1.6 and 1.1.7 on support for other family members and people who are important to the child or young person).
Every child or young person with a life-limiting condition should have a named medical specialist who leads on and coordinates their care. Explain to the child or young person and their parents or carers that their named medical specialist may change if the care that is needed or the care setting changes.
Manage transition from children's to adults' services in line with the NICE guideline on transition from children's to adults' services.
In all discussions with children and young people and their parents or carers explore with them whether, based on their beliefs and values, there are any aspects of care about which they have particular views or feelings.

## Advance Care Planning
Develop and record an Advance Care Plan at an appropriate time for the current and future care of each child or young person with a life-limiting condition. The Advance Care Plan should include:
demographic information about the child or young person and their family
up-to-date contact information for:
the child or young person's parents or carers and
the key professionals involved in care
a statement about who has responsibility for giving consent
a summary of the life-limiting condition
an agreed approach to communicating with and providing information to the child or young person and their parents or carers
an outline of the child or young person's life ambitions and wishes, for example on:
family and other relationships
social activities and participation
education
how to incorporate their religious, spiritual, and cultural beliefs and values into their care
a record of significant discussions with the child or young person and their parents or carers
agreed treatment plans and objectives
education plans, if relevant
a record of any discussions and decisions that have taken place on:
preferred place of care and place of death
-rgan and tissue donation (see recommendation 1.2.17)
management of life-threatening events, including plans for resuscitation or life support
specific wishes, for example on funeral arrangements and care of the body
a distribution list for the Advance Care Plan.
Begin discussing an Advance Care Plan with parents during the pregnancy if there is an antenatal diagnosis of a life-limiting condition. For each individual think about who should take part in the discussion, for example:
-bstetricians
midwives
neonatologists
specialists in the life-limiting condition
a member of the specialist paediatric palliative care team (see recommendation 1.5.4).
Develop and regularly review Advance Care Plans:
with relevant members of the multidisciplinary team and
in discussion with the child or young person and their parents or carers.
When developing the Advance Care Plan, take account of the beliefs and values of the child or young person and their parents or carers.
Explain to children and young people and their parents or carers that Advance Care Planning should:
help them be involved in planning their care and give them time to think about their views carefully
help them to understand the life-limiting condition and its management
help to prepare for possible future difficulties or complications
support continuity of care, for example if there are changes in the professionals involved or in the care setting (such as a hospital admission or discharge).
Share the Advance Care Plan with the child or young person and their parents or carers (as appropriate), and think about which professionals and services involved in the individual child or young person's care should also see it, for example:
GPs
hospital consultants
hospices
respite centres
nursing services (community or specialist)
school and other education services
ambulance services.
Update the Advance Care Plan when needed, for example if:
new professionals become involved
the care setting changes (for example hospital admission or discharge)
the child or young person and their parents or carers move home.Discuss the changes with the child or young person (if appropriate) and their parents or carers.
Share the Advance Care Plan with everyone involved each time it is updated.
When making an Advance Care Plan, discuss with the child or young person and their parents or carers:
the nature of the life-limiting condition, its likely consequences and its prognosis
the expected benefits and possible harms of the management options.
Be aware that all children and young people with life-limiting conditions should have an Advance Care Plan in their medical record, and that this should not be confused with a do-not-attempt-resuscitation order.
Be aware that any existing resuscitation plan for a child or young person may need to be changed in some circumstances, for example if they are undergoing general anaesthesia.

## Organ and tissue donation
For information on organ donation (including donor identification and consent, and when and how to discuss the topic), see the NICE guideline on organ donation for transplantation.
Talk to the child or young person and their parents or carers about organ or tissue donation, and explore their views and feelings on this.
Explain to the child or young person and their parents or carers which organs or tissues (if any) it may be possible to donate.
Involve the organ donation service if needed. If organ or tissue donation is not possible, explain why.
If the child or young person is eligible to donate organs or tissue, ask them if they and their parents or carers (as appropriate) would like to discuss this, and if so:
provide written information if needed
discuss how deciding to donate could affect their care, for example by changing their place of care and place of death
explain the practical policies and procedures involved.
If the child or young person does not have the capacity to decide about organ and tissue donation, ask their parents or carers to make the decision.

## Emotional and psychological support and interventions
Be aware that children and young people with life-limiting conditions and their parents or carers may have:
emotional and psychological distress and crises
relationship difficulties
mental health problems.
Be aware that children and young people and their parents or carers may need support, and sometimes expert psychological intervention, to help with distress, coping, and building resilience.
Be aware that children and young people may experience rapid changes in their condition and so might need emergency interventions and urgent access to psychological services.
Be aware of the specific emotional and psychological difficulties that may affect children and young people who have learning difficulties or problems with communication.
Provide information to children and young people and their parents or carers about the emotional and psychological support available and how to access it.
Regularly discuss emotional and psychological wellbeing with children and young people and their parents or carers, particularly at times of change such as:
when the life-limiting condition is diagnosed
if their clinical condition deteriorates
if their personal circumstances change
if there are changes to their nursery care, school or college arrangements, or their employment
if there are changes to their clinical care, for example if their care changes focus from treating the condition to end of life care.

## Social and practical support
Be aware that children and young people with life-limiting conditions and their parents or carers have varied social and practical support needs, and that those needs may change during the course of their condition. This may include:
material support, for example housing or adaptations to their home, or equipment for home drug infusions
practical support, such as access to respite care
technical support, such as training and help with administering drug infusions at home
education support, for example from hospital school services
financial support.

## Religious, spiritual and cultural support
Ask children and young people with life-limiting conditions and their parents or carers if they want to discuss the beliefs and values (for example religious, spiritual or cultural) that are important to them, and how these should influence their care. Be aware that they may need to discuss their beliefs and values more than once.
Take account of the beliefs and values of children and young people and of their parents and carers in all discussions with them and when making decisions about their care.
Be aware that:
some children and young people and their parents or carers find discussions about their beliefs and values difficult or upsetting
-thers find these discussions reassuring and helpful.
Be aware that children and young people may feel differently to their parents, carers, or healthcare professionals about how their beliefs and values should influence their care. If there is disagreement, try to make a mutually acceptable care plan, and if necessary involve the chaplaincy service or another facilitator.

# Care of the child or young person who is approaching the end of life
Attempt resuscitation for children and young people with life-limiting conditions, unless there is a 'do not attempt resuscitation' order in place.
Be aware that discussing the Advance Care Plan can be distressing for children and young people who are approaching the end of life and their parents or carers, and they may:
be reluctant to think about end of life care
have difficulties discussing end of life care with the professionals or with one another
have differences of opinion about the care plan.
When making or reviewing the Advance Care Plan for a child or young person approaching the end of life, talk to the parents or carers about the care and support they can expect when the child or young person dies. Discuss their personal needs and feelings about this.
When a child or young person is approaching the end of life, think about and discuss with them and their parents or carers their specific support needs. Review these needs regularly.
When thinking about the possibility of treatment withdrawal for a child or young person who is approaching the end of life, take into account their beliefs, values and wishes and those of their parents or carers.
Be aware of the importance of talking about dying, and if appropriate discuss with children and young people and their parents or carers:
whether they want and are able to talk about dying
whether they or their parents or carers would like support in talking to each other about this.
Take account of the beliefs and values of children and young people and their parents or carers when thinking about funeral arrangements and the care of the child or young person's body after death.
When a child or young person is approaching the end of life, discuss with their parents or carers what would help them, for example:
important rituals
recording or preserving memories (for example with photographs, hair locks or hand prints)
plans for social media content.

## Preferred place of care and place of death
Discuss with children and young people with life-limiting conditions and their parents or carers where they would prefer to be cared for and where they would prefer to die.
Agree the preferred place of care and place of death with children and young people and their parents or carers, taking into account:
their wishes, which are personal and individual
their religious, spiritual and cultural values
the views of relevant and experienced healthcare professionals
safety and practicality.
If possible, services should ensure that children and young people can be cared for at their preferred place of care and die at their preferred place of death.
Explain that the place of care or place of death may change, for example:
if the child or young person and their parents or carers change their minds or
for clinical reasons or
due to problems with service provision.
When discussing possible places of care or places of death with children and young people and their parents or carers, provide information about:
the various care settings (for example home, hospice or hospital care)
the care and support available in each setting
practical and safety issues.
If the child or young person and their parents or carers prefer care at home, take into account and discuss the practical considerations with them, such as the possible need for:
home adaptations
changes to living arrangements
equipment and support.
If it is suspected that a child or young person may die soon and they are not in their preferred place of death, think about whether rapid transfer is possible and in their best interest. Discuss this with them and their parents or carers.
When planning rapid transfer to the preferred place of death, review and if necessary update the Advance Care Plan in discussion with the child or young person and their parents or carers and with the healthcare professionals who will be involved following the transfer. The updated Advance Care Plan should include a record of:
any intended changes to care and when they should happen
care plans that cover:
the final hours or days of life
what will happen if the child or young person lives longer than expected
support for the family after the child or young person dies
care of the child's or young person's body after death
the professionals who will be involved and their responsibilities
the professionals who will help with the practical and administrative arrangements after the death.
When planning rapid transfer of a child or young person to their intended place of death:
be aware that the course of their condition may be unpredictable, and that they may die sooner or later than expected
discuss any uncertainties about the course of their condition and how this could affect their care with them and their parents or carers
ensure that relevant changes to the Advance Care Plan are implemented.
Think about using a rapid transfer process (see recommendation 1.5.8) to allow the child or young person to be in their preferred place of death when withdrawing life-sustaining treatments, such as ventilation.
Before rapid transfer, agree with the parents or carers where the child's or young person's body will be cared for after their death.

## Managing distressing symptoms
Involve the specialist paediatric palliative care team if a child or young person has unresolved distressing symptoms as they approach the end of life (see recommendation 1.5.4 for who should be in this team).
When assessing and managing pain, be aware that various factors can contribute to it, including:
biological factors, for example musculoskeletal disorders or constipation
environmental factors, such as an uncomfortable or noisy care setting
psychological factors, such as anxiety and depression
social, emotional, religious, spiritual or cultural considerations.
When assessing pain in children and young people:
use an age-appropriate approach that takes account of their stage of development and ability to communicate
try to identify what is causing or contributing to their pain, and be aware that this may not relate to the life-limiting condition
take into account the following causes of pain and distress that might have been overlooked, particularly in children and young people who cannot communicate:
neuropathic pain (for example associated with cancer)
gastrointestinal pain (for example associated with diarrhoea or constipation)
bladder pain (for example caused by urinary retention)
bone pain (for example associated with metabolic diseases)
pressure ulcers
headache (for example caused by raised intracranial pressure)
musculoskeletal pain (particularly if they have neurological disabilities)
dental pain.
Be aware that pain, discomfort and distress may be caused by a combination of factors, which will need an individualised management approach.
For children and young people who have pain or have had it before, regularly reassess for its presence and severity even if they are not having treatment for it.
Think about non-pharmacological interventions for pain management, such as:
changes that may help them to relax, for example:
environmental adjustments (for example reducing noise)
music
physical contact such as touch, holding or massage
local hot or cold applications to the site of pain
comfort measures, such as sucrose for neonates.
When tailoring pain treatment for an individual child or young person, take into account their views and those of their parents or carers on:
the benefits of pain treatment
the possible side effects of analgesia for moderate to severe pain (such as opioids), for example:
unwanted sedation
reduced mobility
constipation.
Consider using a stepwise approach to analgesia in children and young people, based on pain severity and persistence:
For mild pain, consider paracetamol or ibuprofen sequentially, and then in combination if needed
For moderate to severe pain, consider one of the following options:
paracetamol or ibuprofen sequentially, and then in combination if needed or
low-dose oral opioids (such as morphine) or
transmucosal opioids or
subcutaneous opioids or
intravenously infused opioids (if a central venous catheter is in place).In December 2016, these uses were off-label: oral paracetamol for children under 2 months, intravenous paracetamol for pre-term infants, concentrated liquid paracetamol (500 mg/5 ml) for children under 16 years, ibuprofen for children under 3 months or weighing under 5 kg, oramorph liquid for children under 1 year, and sevredol tablets for children under 6 years. See NICE's information on prescribing medicines.
If treatment with a specific opioid does not give adequate pain relief or if it causes unacceptable side effects, think about trying an alternative opioid preparation.
When using opioids, titrate treatment to find the minimal effective dose that will relieve and prevent pain.
Titrate treatment to provide continuous background analgesia, and prescribe additional doses for breakthrough pain if this occurs.
In addition to background analgesia, consider giving anticipatory doses of analgesia for children and young people who have pain at predictable times (for example when changing dressings, or when moving and handling). Do not include anticipatory doses when calculating the required daily background dose of analgesia.
Calculate opioid dosages for children and young people who are approaching the end of life using weight rather than age, because they may be underweight for their age.
If you suspect neuropathic pain and standard analgesia is not helping, consider a trial with other medicines, such as:
gabapentin or
a low-dose tricyclic antidepressant (for example amitriptyline) or
an anti-NMDA agent (for example ketamine or methadone), used under guidance from a specialist.In December 2016, this was an off-label use of gabapentin, amitriptyline, ketamine and methadone. See NICE's information on prescribing medicines, and the MHRA drug safety update on gabapentin.
Be aware that as children and young people with life-limiting conditions approach the end of life they may:
become agitated, shown by restlessness, irritability, aggressive behaviour, crying or other distress
show signs of delirium, such as confusion, disrupted attention, disordered speech and hallucinations.
If a child or young person who is approaching the end of life becomes agitated or delirious, make sure that they are safe from physical injury.
If a child or young person becomes agitated as they are approaching the end of life, look for causes and factors that may be contributing to this, including:
medical disorders and conditions such as pain, hypoxia, anaemia, dehydration, urinary retention or constipation
psychological factors such as fear, anxiety or depression
adverse effects from medication.
For children and young people with a neurological disability who are approaching the end of life, be aware that the signs and symptoms of agitation or delirium can be mistaken for the signs and symptoms of seizures or dystonia.
If a child or young person who is approaching the end of life needs treatment for agitation:
identify and if possible treat any medical or psychological conditions that may be contributing to it
think about non-pharmacological interventions, such as:
calm speaking, reassurance, distraction, and physical contact such as holding and touch
changes to the environment to make it more comfortable, calm and reassuring, to reduce noise and lighting, to maintain a comfortable room temperature, and to provide familiar objects and people and relaxing music
religious and spiritual support if this is wanted and helpful
think about pharmacological interventions (beginning with low doses and increasing if necessary). Drugs to think about using include:
benzodiazepines, such as midazolam, diazepam or lorazepam
neuroleptics, such as haloperidol or levomepromazine.In December 2016, these uses were off-label: midazolam injections, buccolam, diazepam rectal tubes in children under 1 year, lorazepam, haloperidol, and levomepromazine. See NICE's information on prescribing medicines.
If a child or young person is approaching the end of life and has a seizure, look for and if possible treat or remove any potential causes, triggers or contributing factors, for example:
fever
electrolyte disturbances
drug reactions
sleep deprivation
pain
excessive environmental stimulation.
If a child or young person is thought to be at increased risk of seizures (for example because they have had seizures before or because of an existing brain disorder), include seizure management in their Advance Care Plan. Think about the benefits and drawbacks of specific seizure treatments and:
take into account how any decisions could affect the choices available for place of care and place of death and
discuss this with the child or young person and their parents or carers.
For children and young people who are approaching the end of life, be aware that abnormal movements (such as dystonic spasms) might be mistaken for seizures. If in doubt seek specialist advice.
If a child or young person is approaching the end of life and is thought to be at increased risk of seizures, explain to them and their parents or carers:
how likely it is that they may have a seizure
what they might notice if a seizure happens
that seizures can be frightening or upsetting
what parents or carers should do if a seizure happens at home (for example placing the child or young person in a safe position).
Ensure that parents or carers who have been provided with anticonvulsive therapy (such as buccal midazolam) know how and when to use it if the child or young person has a seizure at home.
If a child or young person is approaching the end of life and has respiratory distress, breathlessness or noisy breathing, think about and if possible treat the likely contributing factors or causes. If these are likely to be caused by:
Anxiety:
discuss why they are anxious
reassure them and manage the anxiety accordingly
consider breathing techniques and guided imagery
consider anxiolytic agents.
Physical discomfort  think about what could be causing the discomfort (for example their position) and help them with it if possible.
Environmental factors  think about environmental changes such as changing the temperature.
Accumulated airway secretions  think about repositioning, airway suctioning, physiotherapy or anti-secretory drugs.
Medical disorders (for example pneumonia, heart failure, sepsis or acidosis)  use appropriate interventions such as:
bronchodilators
nebulised saline
-pioids
-xygen supplementation.
For children and young people who are approaching the end of life and have respiratory distress, breathlessness or noisy breathing that needs further assessment, consider referral to an appropriate specialist (for example a respiratory or cardiac specialist).
If a child or young person is approaching the end of life and has respiratory distress, breathlessness or noisy breathing:
explain to them and to their parents or carers that these symptoms are common
discuss the likely causes or contributing factors
discuss any treatments that may help.

## Managing hydration
If a child or young person with a life-limiting condition is approaching the end of life or is dying, discuss how to manage their fluid needs with them and their parents or carers.
If a child or young person is dying, encourage and support them to drink if they want to and are able.
If a child or young person is dying, continue to provide them with lip and mouth care.
If a child or young person is dying and cannot drink, discuss with them (as appropriate) and their parents or carers whether starting or continuing enteral tube or intravenous fluids is in their best interests.
Be aware that enteral tube and intravenous fluids may have a significant effect on care, may be a burden for children and young people, and may mean the place of care and place of death need to be changed.
If a child or young person is given enteral or intravenous fluids, review this decision regularly to make sure it continues to be in their best interests.

## Managing nutrition
If a child or young person is approaching the end of life or is dying, discuss how to manage their nutritional needs with them and their parents or carers.
If a child or young person with a life-limiting condition is dying, encourage and support them to eat if they want to and are able.
If a child or young person is dying and they are receiving enteral tube feeding or intravenous nutrition:
discuss with them (as appropriate) and their parents or carers whether continuing this is in their best interest and
review this decision regularly.

## Recognising that a child or young person is likely to die within hours or days
For children and young people with life-limiting conditions who are approaching the end of life:
be aware that there is often uncertainty around when they are likely to die
be aware that there are various symptoms and signs (individually or in combination) that indicate they are likely to die within hours or days
take into account the wider clinical context.
When assessing whether a child or young person is likely to die within hours or days, be aware that the following signs are common in the last hours or days of life, and monitor these non-invasively as far as possible:
a change of breathing pattern (for example noisy, laboured or irregular breathing)
impaired peripheral perfusion (which can be indicated by a pale or grey appearance, or a prolonged capillary refill time), including temperature instability
loss of interest in or ability to tolerate drinks or food
a marked and unexplained fall in urine output
an altered level of awareness (for example reduced consciousness, alertness or responsiveness, excessive sleeping, or confusion)
intractable seizures that keep occurring even with optimal management
new onset of profound weakness
increasing pain and need for analgesia.
When assessing symptoms and signs to decide whether a child or young person is likely to die within hours or days, take into account the wider clinical context, including:
their normal clinical baseline
past clinical events (such as previous episodes of temporary deterioration)
the overall progression of their condition.
When assessing whether a child or young person is likely to die within hours or days, take into account the clinical judgement of healthcare professionals experienced in end of life care.
If the child or young person or their parents or carers feel that they are likely to die within hours or days:
be aware that they may be correct
discuss their concerns with them.
When a child or young person is likely to die within hours or days, support them and their parents or carers by:
listening to any fears or anxieties they have and
showing empathy and compassion.
When a child or young person is likely to die within hours or days:
be aware that they or their parents or carers may not express their feelings openly, and may:
have intense and varied feelings such as fear, hopelessness or anger or
become more accepting of the inevitability of death
give them and their parents or carers opportunities to talk.
If a child or young person is likely to die within hours or days, explain to them and their parents or carers:
why you think this is likely, and any uncertainties
what clinical changes can be expected
whether you think the treatment plan should be changed.
When children and young people become seriously ill and are likely to die within hours or days, provide care as specified in their Advance Care Plan and review if needed.
Be aware that children and young people may have difficulty asking directly if they are going to die or are dying. Explore and discuss their concerns if you think they want to talk about this.
Be aware that parents or carers may have difficulty asking directly if a child or young person is dying. Explore and discuss their concerns if you think they want to talk about this.
If a child or young person may be approaching the end of life and they or their parents or carers want to be involved in making decisions about their care, discuss and review their Advance Care Plan with them.
When a child or young person is approaching the end of life, discuss with them and their parents or carers and with relevant healthcare professionals:
any available invasive treatments that might be in their best interest
any interventions they are currently receiving that may no longer be in their best interest.
If withdrawing a treatment for a child or young person who is dying, explain to them and to their parents or carers that it is often difficult to tell if or how this may affect them, or when they will die.
When a child or young person is likely to die within hours or days, ensure that they can have private time with their parents or carers.

# Care and support for parents, carers and healthcare professionals in relation to the death of a child or young person
Discuss with parents or carers the practical arrangements that will be needed after the death of their child, and provide this information in writing. This should cover matters such as:
the care of the body
relevant legal considerations, including
the involvement of the child death overview panel
the involvement of the coroner
registration of the death
funeral arrangements
post-mortem examination (if this is to be performed).
When a child or young person is approaching the end of life, discuss the bereavement support available with their parents or carers and provide them with written information.
When a child or young person is approaching the end of life, talk to their parents or carers about available psychological bereavement support groups.
Offer bereavement support from a professional with appropriate expertise to the parents or carers both before and after the death of a child or young person.
When planning bereavement support for parents or carers:
talk to them about the support that is available and explore with them what they would find helpful and acceptable
think about what support different professionals could provide, for example:
their GP
healthcare professionals who know the child or young person and are involved in their care
think about the role of individual professionals in providing specific aspects of support
inform the multidisciplinary team about the support plan.
When making a bereavement support plan with parents or carers, discuss possible options with them such as:
-pportunities to talk to the professionals caring for the child or young person, to:
discuss memories and events
answer any concerns or questions they may have
home visits from the healthcare professionals caring for the child or young person
bereavement support groups.
Ensure that arrangements are in place for professionals to talk about their thoughts and feelings with colleagues when a child or young person they are caring for is approaching the end of life or has died.
Following the death of a child or young person, a member of the multidisciplinary team should arrange in a timely manner for all relevant organisations and people to be informed.
Update relevant documents and databases after the death of a child or young person (to avoid, for example, clinical appointments being offered by mistake).

# Service delivery

## Multidisciplinary team
Children and young people with life-limiting conditions should be cared for by a defined multidisciplinary team.
As the child or young person's circumstances change (for example if they change from having care primarily to manage their condition to having end of life care), the membership of the multidisciplinary team should be adjusted accordingly.
Depending on the needs of the child or young person, the multidisciplinary team may include:
healthcare professionals from primary, secondary or tertiary services, including specialists in the child's underlying life-limiting condition, hospice professionals and members of the specialist palliative care team (see recommendation 1.5.4)
social care practitioners
education professionals
chaplains
allied health professionals (for example physiotherapists, occupational therapists, and psychological therapists).
The specialist paediatric palliative care team should include at a minimum:
a paediatric palliative care consultant
a nurse with expertise in paediatric palliative care
a pharmacist with expertise in specialist paediatric palliative care
experts in child and family support who have experience in end of life care (for example in providing social, practical, emotional, psychological and spiritual support).
Explain to children and young people and their parents or carers:
who the multidisciplinary team members are and how they are involved in their care
how the multidisciplinary team membership will change if the care that is needed or the care setting changes.
Think about involving children and young people and their parents or carers in multidisciplinary team meetings (when appropriate).
Think about having a named individual from the multidisciplinary team to act as a first point of contact for the child or young person and their parents or carers.

## Rapid transfer arrangements
In collaboration with local hospitals, hospices, and community, primary care and ambulance services, ensure there is a rapid transfer process for children and young people with life-limiting conditions to allow urgent transfer to the preferred place (for example from the intensive care unit to their home or to a children's hospice). See recommendations 1.3.15 to 1.3.19 for the planning and practical arrangements of this transfer.

## Care at home
For children and young people with life-limiting conditions who are approaching the end of life and are being cared for at home, services should provide (when needed):
advice from a consultant in paediatric palliative care (for example by telephone) at any time (day and night)
paediatric nursing care at any time (day and night)
home visits by a healthcare professional from the specialist paediatric palliative care team (see recommendation 1.5.4), for example for symptom management
practical support and equipment for interventions including oxygen, enteral nutrition, and subcutaneous and intravenous therapies
anticipatory prescribing for children and young people who are likely to develop symptoms.
Services should have agreed strategies and processes to support children and young people who are approaching the end of life and are being cared for at home. These services should be based on managed clinical networks, and should collaborate on care planning and service delivery.
Services for children and young people who are approaching the end of life and are being cared for at home should be able to support parenteral drug administration (for example continuous subcutaneous opioid or anticonvulsant infusions).

# Terms used in this guideline

## Advance Care Plan
A formal care plan that includes details about the child or young person's condition, decisions made with them and their parents or carers (for example about managing symptoms), and their wishes and ambitions. This plan is a core element of their palliative care.

## Approaching the end of life
The phase of illness after a change in the person's condition that means they are likely to die within weeks.

## Chaplain
An expert (with any or no religious beliefs) in religious, spiritual and or pastoral care for patients, families and staff. Chaplains also provide education and advice to organisations or trusts. They work to a nationally recognised code of conduct and a set of standards and competencies.

## Children
Aged 0 to 12 years. This includes neonates and infants.

## Dying
When the child or young person is likely to die in hours or days.

## End of life care
In this guideline, end of life care includes the care and support given in the final days, weeks and months of life, and the planning and preparation for this.

## Life-limiting condition
Conditions that are expected to result in an early death, either for everyone with the condition or for a specific person.

## Neonates
Babies aged up to 28 days.

## Paediatric palliative care
An approach to care covering physical, emotional, social and spiritual support. Paediatric palliative care focuses on improving the quality of life for the child or young person and supporting their family members or carers, and includes managing distressing symptoms, providing respite care, and support with death and bereavement.

## Parallel planning
Planning for end of life care while taking account of the often unpredictable course of lifelimiting conditions. It involves making multiple plans for care, and using the one that best fits the child or young person's circumstances at the time.

## Perinatal palliative care
Perinatal palliative care involves providing integrated ongoing support from the diagnosis of a life-limiting condition in a fetus, and during pregnancy, delivery, postnatal care, and (if needed) bereavement care.

## Young people
Aged 13 to 17 years.# Context
The Royal College of Physicians report Why children die: death in infants, children and young people in the UK (2014) noted that, despite improving mortality rates, in 2012 more than 2,000 children and young people aged between 1 and 19 died in England and Wales. Approximately 40% of deaths in children and young people under 15 are neonatal deaths (Office for National Statistics, 2016). In addition, it is estimated that almost 50,000 children and young people aged 19 or under in the UK (40,000 of these in England) are living with a life-limiting condition and may need palliative care. They may have widely varying needs, as there are over 300 conditions that could be classed as life-limiting or life-threatening in this age group. Some of these children and young people also have severe disabilities and multiple complex health and social care needs.
End of life care combines a broad range of health and other care services, including hospitals, hospices, primary care and community professionals, ambulance services, dedicated palliative care teams, and other support providers. Services span the public sector and charities. Because of this, good communication, care coordination, and effective networking are essential. Children and young people are likely to need different services at different stages of their illness and they will get the best care possible when services communicate with and support each other.
Palliative care for adults is a well-established discipline, with evidence that if it starts early it can both enhance and even prolong life. Paediatric palliative and end of life care generally lasts longer and is for a wider range of life-limiting conditions than for adults. It begins when a life-limiting condition is diagnosed (which could be diagnosed during the antenatal period), and continues even if a child is having treatment for the underlying condition (World Health Organization 1998). Young people may continue to have palliative care after they turn 18, and it may be part of the transition to adult care (see the NICE guideline on transition from children's to adults' services).
Children, young people and their parents or carers can have varied ideas about what represents good palliative and end of life care, and they may have differences of opinion with each other. They may also have different priorities at different stages in their lives.
This guideline covers the physical, emotional, social and spiritual elements of end of life care, and focuses on improving the child's or young person's quality of life and supporting their family. There are for instance recommendations on managing distressing symptoms and providing care and bereavement support after death. It also includes recommendations on how services should be delivered. The guideline is aimed at all providers of paediatric palliative and end of life care (whatever their level of practise), as well as children and young people with life-limiting conditions and their parents and carers.
To help develop this guideline, a focus group of young people with life-limiting conditions were asked for their views and experiences of care. See the full guideline for the report presenting these findings.
The guideline covers children and young people with life-limiting conditions. It does not make recommendations for children or young people who die suddenly and unexpectedly (for example accidental death).# Recommendations for research
The guideline committee has made the following recommendations for research. The committee's full set of research recommendations is detailed in the full guideline.

# Preferred place of care and place of death
When planning and managing end of life care, what factors help children and young people with life-limiting conditions and their parents or carers to decide where they would like end of life care to be provided and where they prefer to die?

## Why this is important
When deciding the place of care and place of death, paediatric palliative care services sometimes assume that the main concern of parents and carers is that their child is able to die at home. However, the guideline committee's experience suggests that there are other significant factors for children and young people as well as their parents and carers (in particular, treatment of distressing symptoms) that may affect their choice of care setting. No research has been done to identify these factors, but it is important to recognise any reasons why a care setting might not be suitable. Understanding this would allow services to provide more personalised care, improve planning, and reduce waste and the cost of care.

# Perinatal palliative care
What impact does timely perinatal palliative care have on the experience of bereaved parents?

## Why this is important
Parents with a baby that is diagnosed antenatally with a lifelimiting condition are increasingly being offered perinatal palliative care before the birth (or very soon afterwards) if they decide to continue with the pregnancy.
Perinatal palliative care should help clinical staff (obstetric, neonatal and specialist palliative care) to deliver consistent high-quality care and ensure that families are offered meaningful and realistic choices for the care of their baby. If it is done well, perinatal palliative care also ensures that everyone involved understands the medical, social and legal frameworks for any decisions on critical care before and after birth.
There is little evidence on the experience families have of the death of a baby with or without specific support from a perinatal palliative care team. Individual case reports on family experience are very positive about perinatal palliative care, but published evidence is scarce.

# Emotional and psychological support and interventions
What emotional support do children and young people with life-limiting conditions and their parents or carers need, and how would they like these needs to be addressed?

## Why this is important
Previous UK studies, such as The Big Study for Life-Limited Children and their Families from Together for Short Lives, have explored broad themes of psychological support needs. However, no studies have tried to understand psychological difficulties using standardised measures of psychological and relationship distress, or looked at what families want from psychological therapies.
Before research into effective interventions can be carried out, the following aspects of psychological difficulties need to be better understood:
their range (for example low mood, worry, stigma, conflict in family relationships, avoidance, and distress about medical procedures)
their severity (from mild long-term low mood to severe depression with suicidal thoughts)
their context (for example socioeconomic status, and communication or mobility needs).

# Managing breakthrough pain
What is the acceptability, safety, and effectiveness of different types of opioid analgesia for breakthrough pain in children and young people with life-limiting conditions who are having end of life care in the community?

## Why this is important
Opioids (with morphine the most common first-line agent) are effective as background analgesia for children and young people who are having end of life care. However, no evidence was identified on how to provide safe and effective breakthrough analgesia (particularly in community settings). This potentially exposes children and young people who are having end of life care in the community to untreated pain or significant side effects. Studies should aim to provide evidence-based options to help manage breakthrough pain in the community. This would improve the safety and effectiveness of care for breakthrough pain, and would be likely to reduce emergency hospital admissions.

# Recognising that a child or young person may be dying
What signs and symptoms indicate that a child or young person with a life-limiting condition is likely to die within hours or days?

## Why this is important
Healthcare professionals are often asked to estimate how close a child or young person may be to death. There is very little evidence on which to base any such estimate. To help predict when a child or young person is in the last hours or days of life, a clearer understanding is needed of which groups of signs and symptoms indicate this most clearly. This would improve healthcare planning, but importantly would also allow families to realistically address their 'hopes and wishes' for their child's care while preparing themselves for the child's or young person's last hours and days of life.