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

In 7 December 2016, National Guideline Alliance, NICE issued guidelines on End of life care for infants, children and young people with life-limiting conditions: planning and management. Following are the major recommendations :

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

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:

• One-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" below)


• The membership of their multidisciplinary team and the responsibilities of each professional (see "Multidisciplinary Team" below)


• 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" below)


• 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

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.

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
  
  
  • 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
  
  
  • Organ and tissue donation (see also "Organ and Tissue Donation" below)
  
  
  • 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:

• Obstetricians


• Midwives


• Neonatologists


• Specialists in the life-limiting condition


• A member of the specialist paediatric palliative care team (see "Multidisciplinary Team" below)

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:

• General practitioners (GPs)


• Hospital consultants


• Hospices


• Respite centres


• Nursing services (community or specialist)


• School and other education services


• Ambulance service

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

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 well being 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


• Others 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 the "Rapid Transfer Arrangements" section below) 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.

Managing Pain

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)
  
  
  
  

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-N-methyl-d-aspartate (NMDA) agent (for example, ketamine or methadone), used under guidance from a specialist.

Managing Agitation

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,⁹ diazepam¹⁰ or lorazepam¹¹
  
  
  • Neuroleptics, such as haloperidol¹² or levomepromazine¹³
  
  
  
  

Managing Seizures

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.

Managing Respiratory Distress

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
  
  
  • Opioids
  
  
  • Oxygen 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:

• Opportunities 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).

You can read the full Article by clicking on the link :

National Guideline Alliance. End of life care for infants, children and young people with life-limiting conditions: planning and management. London (UK): National Institute for Health and Care Excellence (NICE); 2016 Dec 7. 44 p. (NICE guideline; no. 61).