Palliative or End-of-Life Care Guideline for Babies under the care of Neonatal Services

Publication: 05/09/2013  --
Last review: 07/03/2018  
Next review: 07/03/2021  
Clinical Guideline
CURRENT 
ID: 3440 
Approved By: Trust Clinical Guidelines Group 
Copyright© Leeds Teaching Hospitals NHS Trust 2018  

 

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

Guideline for Babies under the care of Neonatal Services Requiring Palliative or End-of-Life Care

Background

Advances in antenatal diagnosis of fetal abnormalities, obstetric care, neonatal care and care at the margins of viability have all increased the need for decision making about end-of-life care for the fetus and neonate. These decisions present clinicians and parents with new and difficult challenges. The aim of palliative care is to provide comfort to the baby who is dying or who has a life limiting condition and to support the family. Other considerations such as organ donation may be appropriate and should be contemplated.

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Eligibility

The suitability of a baby to enter a palliative care pathway may be considered antenatally after detection of an abnormality, postnatally around the time of delivery or later during neonatal care.

There are many documents that may be helpful in deciding on a baby’s suitability for entry to the pathway. These include:

  • The Royal College of Paediatrics and Child Health (RCPCH) document ‘Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice’ Arch Dis Child 2015;100:s1-s23
  • The General Medical Council (GMC) booklet ‘Treatment and care towards the end of life: good practice in decision making’:  http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_contents.asp
  • The Association for Children’s Palliative Care (ACT)’s ‘Neonatal Pathway for Babies with Palliative Care Needs’, available to buy from ‘Together for Short Lives : http://www.togetherforshortlives.org.uk/
  • The British Association of Perinatal Medicine (BAPM)’s document ‘Palliative Care- a framework for clinical practice in perinatal medicine’

The decision to proceed with palliative care should be made conjointly by the multidisciplinary team caring for the baby, and by the parents and extended family as appropriate. The MDT may include the fetal medicine consultant, neonatal consultant, hospital/community midwife, neonatal nurse, outreach nurse, hospice staff, GP and other health professionals involved in the baby’s care e.g. surgeon, cardiologist etc. Where there is disagreement amongst professionals about suitability there should be an opportunity for open and honest discussion. Where this does not lead to resolution a second opinion should always be sought, preferably by a professional from outside LTHT. Unanimity is not required, however, and the ultimate responsibility for the decision lies with the consultant leading the baby’s care. Reasons for any disagreement must be recorded in the notes.

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Breaking bad news

Discussions with parents should be conducted by the consultant leading care of the mother or baby (on occasions it may be delegated to a senior trainee), and should take place in a private and quiet environment, away from the clinical area where possible. In the LGI unit this should take place in Louis’ suite, at SJUH one of the parent bedrooms and in the Fetal Medicine department the counseling room. Baby’s primary caregivers should be present, and should be offered the chance to involve extended family or friends if they wish. A parent or carer should never receive bad news on their own unless absolutely unavoidable. The discussions should be supported by appropriate literature e.g. Bliss ‘Making critical care decisions for your baby’. An interpreter should be used if English is not the first language of the family. The discussion should include:

  • Information in simple language about their baby’s diagnosis and reasons for offering palliative care
  • How long they might expect their baby to survive if palliative care is offered
  • What alternative treatment options might be available, and the likely outcomes if they were to be offered
  • Where the baby can be cared for (this might include hospital, home or hospice)

When parents are finding it difficult to agree to reorientation of care they must be given time to come to terms with the issues, and further meetings should be offered. Where appropriate, religious, spiritual or cultural representatives, either from within the hospital or from the parent’s own community, may be helpful in supporting the parents in their discussions. Parents must not be made to feel that staff are judging them if they choose to continue with full intensive care. However, parents must be made aware of the likely outcomes of continuing with life sustaining treatments (LSTs). Treatment should not be further escalated, and the parents should be made aware of the point at which withdrawal of LSTs will be the only option. Again a second opinion from outside the Trust may be helpful, and should be offered. Where disagreement between staff and parents is intractable, and where there is a belief that a baby is suffering, the views of the Trust Clinical Ethics Committee should be sought.

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Treatment/Management

Care plan

Once it has been agreed that a baby/fetus is eligible for palliative care, an appropriate care plan should be developed.  Care plans should be reviewed regularly and altered to reflect any change in the baby’s condition or at parents’ request. An antenatal care plan should always be reviewed following birth of the baby, to ensure that it remains appropriate.

Monitoring, investigations and treatment

  • Electronic and invasive monitoring during palliative care is not usually recommended.
  • Intermittent physical assessment should be carried out to assess comfort, pain and physiological status.
  • Investigations should only be performed if the results might lead to treatment that will improve the baby’s quality of life, or help with the diagnosis and management of subsequent pregnancies.
  • Treatments such as antibiotics, oxygen, anticonvulsants, anti-reflux medication, insertion of ventricular access device or ventriculo-peritoneal shunts, and hernia repair can have a role in symptom control.
  • Immunisations should be given as per national immunisation programme.

Physical comfort care

Continue to practice comfort care to minimise distress. This should include positioning, skin care, mouth care, and human contact including breast-feeding and skin-to-skin contact. For babies who cannot feed, expressed breast milk can be used for mouth care, and should be used when available as per the LTHT guideline ‘The use of colostrum and expressed breast milk for oral care, in neonates who are unable to be orally fed on the Neonatal Unit’:

If the baby is comfortable the temperature does not need to be monitored.

The use of medications

A useful free resource for the use of medications in palliative care is the Association of Paediatric Palliative Medicine formulary available free online at Google ‘APPM formulary’ to find. This document collates information from the BNFc, Cochrane reviews and relevant journal articles. Some commonly used medications are listed below under various subheadings.

Pain

All babies receiving palliative care must have consideration given to relief of pain and discomfort. Assess and treat any underlying causes of pain. Assessment of pain in babies is very difficult, but signs may include:

  • Persistent crying
  • Furrowing of the brow and squeezing shut of eyes
  • Being unsettled and agitated
  • Tachycardia

Simple measures such as swaddling, breast-feeding and use of a dummy should be employed. If there is ongoing evidence of pain, the following drugs should be used in a stepwise fashion:

  • Oral sucrose (24%) as per pain protocol
  • Paracetamol (see net formulary / BNFc)
  • Opiates by the route best tolerated by the baby: oral (PO), nasogastric (NG), buccal, intravenous (IV) or subcutaneous (SC).

If a baby is already receiving an opiate infusion at the time of entry to the palliative care pathway this should be continued. If starting an opiate at the onset of pain/distress, oral/NG morphine should be used in a baby who can tolerate enteral medications. For parenteral opiates use IV morphine (only if existing IV line) or SC diamorphine infusions. The following starting doses should be used:

  • Morphine PO 50 microgram/kg/dose 4 hourly
  • Morphine IV 6 microgram/kg/hour or
  • Morphine IV 25micrograms/kg/dose 6 hourly
  • Diamorphine SC 2.5 microgram/kg/hour increased as required up to 7 microgram/kg/hour or 15micrograms/kg/dose every 6 hours (IV/SC/IM)

The opiate dose should be titrated to response. If there is no response to the starting dose, increase doses by increments of 30-50% as needed to ensure that the baby is comfortable. Consider adjuvant analgesics e.g. paracetamol, ibuprofen, if not already using. There is no upper limit to the dose of morphine for relief of pain or distress in palliative care, even in the knowledge that this may cause respiratory depression. Morphine infusion rates of 100 microgram/kg/hr or higher may occasionally be required to effectively treat pain. However, it is illegal to give any medication with the main intention of hastening death. If doses >40µg/kg/hr morphine or equivalent are required, consider adding another drug, as it may indicate that the opiate is not working.

The above doses are for the relief of pain. Morphine and diamorphine can also be used for breathlessness at a half or a third of the doses shown above.

As a rule, hospices tend not to give IV medications; however some regimes are possible, particularly if the baby has a central line in place. It is important to discuss what care the hospice is able to provide prior to deciding upon a preferred place of death for a baby.

Opioid conversion

Care must be taken when converting patients from enteral to parenteral opioids and vice versa. This is due to variations in their relative potencies.

IV morphine is twice as potent as oral morphine. To convert oral morphine to iv morphine the total oral dose over 24 hours needs to be divided by two.

SC diamorphine is 3 times as potent as oral morphine. To convert oral morphine to subcutaneous diamorphine the total oral dose over 24 hours needs to be divided by three.

Drug

Relative potency to oral morphine

Equivalent dose in 2kg baby

Equivalent dose in 3 kg baby

Equivalent dose in 4 kg baby

Oral morphine

1

100 micrograms 4 hourly

150 micrograms 4 hourly

200 micrograms 4 hourly

IV morphine infusion

2 x

12.5 micrograms per hour

18.75 micrograms per hour

25 micrograms per hour

SC diamorphine infusion

3 x

8.3 micrograms per hour

12.5 micrograms per hour

16.7 micrograms per hour

Always discuss escalation in treatment with the consultant when using more than 40 microgram/kg/hr IV morphine or equivalent or adding in midazolam (see below).
Care must be taken to record all changes to medications in the baby’s notes and on the correct LTHT prescription chart, even when care is taking place in the quiet room. The reason for the change should be clearly documented.

Distress and agitation

If a baby is unsettled and distressed, pain must be excluded as a cause. If there is no evidence of pain or where the baby is already on pain relief, the following sedative drugs may be used:

  • Chloral hydrate PO/PR 30mg/kg QDS as required (max 120mg/kg/day)
  • Buccal midazolam 100-300 microgram/kg as required (note larger doses can cause respiratory arrest, so start with 100 micrograms/kg)
  • Midazolam infusion SC or IV 60 microgram/kg/hr increasing by 60 microgram/kg/hr every fifteen minutes as required to a maximum of 300 microgram/kg/hr (for midazolam dosages for seizure control see below)

Buccal, IV or SC midazolam can be used if morphine is not fully effective; midazolam should be considered if a baby is requiring more than 40 microgram/kg/hr IV morphine or equivalent.

Nutrition and fluids

The goal of feeding in palliative care is to provide comfort and reduce distress from hunger, not to achieve growth. The route of feeding should be that which is most suitable for the baby. A baby who is able to feed orally should be allowed to do so, unless it causes pain or discomfort. Breast-feeding may be comforting for the baby and mother, even when it is non-nutritive, and should be encouraged.

Nasogastric feeding can be considered in a baby who is not able to feed orally, but shows signs of hunger. Volumes of 50ml/kg/day are sufficient to maintain comfort and suppress hunger. Feeds should be divided into 6-8 feeds daily, as this will minimise vomiting. It may not be possible to maintain hydration, and this is acceptable. Parenteral fluids are rarely indicated in palliative care. A baby who is unable to tolerate enteral feeds should be treated symptomatically for distress if required (see above). Where death is predicted to be imminent, or where the provision of fluids is merely prolonging death e.g. unresponsive hypoxic ischaemic encephalopathy (HIE), fluids can and should be withheld. In the event that a baby is receiving TPN or IV fluids at the time of entry to the palliative care pathway, consideration should be given to the withdrawal of this intervention, after discussion with the parents. This should always be a consultant led decision.

Vomiting/Gastro-oesophageal reflux

Consider reducing feeds to the level the baby will tolerate, or give smaller feeds more often. Add anti reflux treatment if reflux is symptomatic and distressing, as per LTHT guideline ‘Management guidelines for suspected Gastro-oesophageal reflux disease (GORD) in pre-term infants on LTHs Neonatal units

Start with positioning and add in medical treatments as required. This may include:

  • Feed thickeners: carobel
  • Ranitidine: 2-3mg/kg TDS PO (see BNFC)
  • Erythromycin: 3mg/kg/dose QDS PO as prokinetic (see BNFC)

Constipation

Opiates may constipate. If constipation is causing distress consider using lactulose or glycerin suppositories. If starting regular opioids it is good practice to start laxatives at the same time to prevent constipation developing:

  • Lactulose syrup 2.5 ml BD PO
  • Glycerin suppository chip PR as required

Seizures

Seizures can be a source of distress for the baby, the family and caregivers, and should be treated unless short lived and not causing distress. Seizure medication should be given by the most appropriate route for the baby. This will rarely be IV unless the baby already has an indwelling IV line. For babies with venous access, use the LTHT ‘Guideline for the management of Neonatal Seizures’: detail.aspx?ID=270

In babies without venous access, use buccal midazolam 300 microgram/kg, repeated after 5 minutes if necessary. If seizures are frequent, consider subcutaneous midazolam infusion (see dose above). For management of acute seizures at home provide parents with doses of buccal midazolam.

Urinary retention

Urinary retention may be caused by opiates. Gentle manual pressure over the bladder may help to express urine. Consider catheterisation if persistent and causing distress.

Oropharygeal secretions

Babies with neurological problems including HIE often have difficulty in clearing secretions from the oropharynx. Regular oral suctioning should be offered. If secretions are excessive and difficult to control with regular suctioning, consider using hyoscine patches:

  • 1mg/72 hours hyoscine patch (Scopoderm TTS®) ¼ behind ear every 72 hours (See BNFC).

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End of life care

When preparing for end of life there are many areas to consider in addition to symptom control, including place of care and support for the family.  This checklist (Appendix D) is a useful aide – it has been particularly designed for those babies going home, but can be used in all cases.  The following areas are covered in more detail below:

Families should be prepared for what to expect when their baby dies.  This should include discussion of likely changes in appearance, e.g. cyanosis, pallor and symptoms such as gasping.  Terminal gasping should be explained in order to reassure parents that this is not an indication of suffering.  Patients should be made aware that the time until death after withdrawal of life sustaining treatments or a decision to palliate can vary from minutes to hours, and possibly days or weeks, or even longer. This should be clearly documented in the notes.

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Creating memories

Staff should explain and facilitate the option to create and collect mementoes. A journey or memory box should be provided for this purpose. Mementoes might include antenatal scan pictures, photographs, foot and hand prints, a lock of hair, clothes the baby has worn, cot tags, identity bracelets, ECG electrodes and oxygen saturation probes. If families do not wish to take photos and foot and hand prints, consider offering to arrange for these to be done and kept, in case the family changes their mind at a later date.

Parents should be encouraged to spend time with their baby during the last few hours and days, and provide ‘normal care’ such as bathing and changing. Most families find that this is a very positive experience in an otherwise distressing time. The taking of photographs should be encouraged during this time.

Professional photographers who have experience in these situations are available. Visit the following website for contact details of current photographers offering this service. Phone before offering to parents to check they are available. http://www.remembermybaby.org.uk/find-a-rmb-photographer/

Memories may also be created after death, and the taking of photographs, foot and handprints and hair should be offered.

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Family centred care

Consider the needs of each member of the baby’s family, including parents, siblings, grandparents and extended family. Parents should be encouraged to involve siblings in memory making and caring for the baby. The siblings’ nursery or school should be made aware of the situation so that they can be supported appropriately. This may be done by the parents, or in cases where the parents do not feel able to, it should be done by the clinical team, with the verbal consent of the parents.

Support of spiritual/personal belief

Parents should be offered a visit from the appropriate hospital chaplain (contactable via switchboard), or their own religious or spiritual leader.  Religious and cultural ceremonies should be offered and supported.

Psychological support

Staff should consider offering the family, including siblings, the opportunity to see a psychologist or counsellor. The neonatal counselor can support the family whilst on the neonatal unit. At discharge, offer the family referral to their local
Children’s Hospice for ongoing bereavement support.

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Place of care

National frameworks suggest all families should be offered a choice in the place palliative care is delivered.  This may be in the hospital, in a hospice or at home.  Babies can be extubated on the neonatal unit or on arrival at a hospice.  However in some cases, e.g. imminent death, a choice may not be practical or desirable.

If care will be in the hospital every effort should be made to ensure that this is in a room where the parents can sleep.  This may be on delivery suite, on transitional care or on the neonatal unit.  When care takes place in the neonatal unit, families should be given as much space and privacy as possible, preferably in a private room away from the intensive care environment.  Where this is not possible a side room should be used, or the bed space screened.

In cases where death may not occur for days, weeks or even months, the family should be offered discharge home or transfer to a hospice for continuing care.  Further details of the practicalities of arranging that are given below.

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The role of the hospice in palliative care

There are several children’s hospices in the area which include Forget Me Not, Martin House and Bluebell Wood.  Their catchment areas are:

  • Forget Me Not: Huddersfield, Calderdale, Halifax, Todmorden, Hebden Bridge, Denby Dale, Holmfirth, Dewsbury, Batley, Cleckheaton, Wakefield (Normanton, Pontefract, Featherstone, Hemsworth).
  • Martin House: Leeds and the rest of North, East and West Yorkshire.
  • Bluebell Wood: based near Sheffield, covers all of South Yorkshire, North Derbyshire, North Nottinghamshire and parts of North Lincolnshire.
  • St Andrew’s Hospital in Grimsby has some beds for children and covers Lincolnshire, Hull and East Yorkshire

In general the role of a children’s hospice is to support any family with a child who has a life shortening condition. As well as end of life care, they provide regular respite, and will support other family members and friends as well as parents and siblings. 

Early referral is beneficial so that families can access the support available for as long as possible before the child dies. Many hospices are now accepting antenatal referrals. Families can then receive support from the point of diagnosis in utero and become familiar with the hospice setting. Hospice staff can attend meetings, help to source equipment and make all possible preparations, with the hope that the parents will get the most out of the time they do get with their baby.

The hospice will provide symptom control and management, and at the end of life will work with the family to ensure that their child is in the place that they choose (hospital, hospice or home).  Prior to transfer to a hospice complete a Limitation of treatment agreement (LOTA) (Appendix A) or Respect form if appropriate.  Patients going to Forget-Me-Not Hospice will need to be discharged with a supply of medication – use the paediatric palliative care prescription (Appendix B) to help with this.

Most hospices have cooling facilities that can be used in the hospice or at home and allow the family to spend additional time with their baby after death.  The hospice can also help families with funerals, registering of a death and birth (if not already done), and financial support and will support families after death for as long as they want with no time limit. Families can access complementary therapies, family support, counseling, siblings support, music therapists, etc.

The aim is to make as many positive memories no matter how short or long the life may be.

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Continuing care at home

Babies can be discharged home under the care of the Neonatal Outreach team, with follow up in the neonatal clinic.  After the first few weeks care should be passed on to the Children’s Community Nursing team, with support from the local hospice.  A visit from the palliative care team before discharge may be helpful.  Use this checklist (Appendix D) to help plan discharge.  Complete a Limitation of treatment agreement (LOTA) (Appendix A) or Respect form and the discharge care plan for babies with palliative care needs (Appendix E).

Plans need to be made between services prior to discharge about who will be able to provide what support.

  • Inform GP prior to discharge
  • Plan who will prescribe and provide medication
  • Plan a supply of necessary equipment such as oxygen, suction, monitors, nasogastric tubes, syringes or syringe drivers.
  • Who will be available to verify/certify death?
  • Consider where the family wants the baby to be after death and their plans for post-mortem and funeral/cremation.

Families should be aware of any medication/interventions to be discontinued and the timescale for withdrawal.  They should also understand how to administer drugs required.  They should have the following written information on discharge:

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Compassionate extubation

This can take place on the neonatal unit or on arrival at a hospice.  If a decision has been made to extubate a baby, the following should be done prior to extubation, in either situation.

  • Identification of a lead professional/key worker to support decision making
  • Confirm that the baby has a life-limiting diagnosis, is entering the final stages of life, or that ongoing treatment is futile
  • Arrange for an interpreter if needed.
  • Discuss with parents the possibility of accidental extubation, particularly in transit – in most cases there will be no plan to re-intubate.
  • Confirm parallel planning has commenced i.e. plans for ongoing care if the baby survives extubation, including discussions about whether fluids/feeds would be recommenced.
  • Discuss whether there are other treatments that will be withdrawn, such as inotropes.
  • Check that there is appropriate sedation/pain relief available and anticipate withdrawal symptoms.
  • Arrange for pastoral or other spiritual support.
  • Discuss the patient with the coroner to find out if a post-mortem will be required.
  • Check whether tissue and organ donation has been discussed with the organ transplant team and the family.
  • Have the cool cot readily available.

Extubation on the neonatal unit

  • Confirm enteral feeds have been stopped for a period, to reduce the risk of aspiration.
  • Ensure symptom control is adequate and have any necessary medicines available at the bedside.  Remove any unnecessary medical paraphernalia.
  • Some babies who have been intubated for long periods and are at risk of developing stridor may benefit from an anticipatory dose of corticosteroids
  • Confirm who will suction and who will remove the ETT and ensure all the appropriate equipment is ready.
  • Establish parental wishes on which family members they would like to be present and what they would like to do; would they like to hold their child, would they like them in any special clothes, have special toys or music?
  • Suction the mouth and ETT.  Remove the ETT and place it under a clean towel.  Silence the ventilator alarm, turn off the ventilator and move it out of the way.  Suction excessive oropharyngeal secretions.
  • Encourage the family to take part in their baby’s care and in activities to relieve discomfort.
  • Once the baby has died the family should be encouraged and supported to spend as much time with them as they want.

Extubation following transfer to a hospice

The following flow sheet shows the pathway if a baby is to be transferred to a hospice for compassionate extubation.

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Care after death

Parents may wish to spend time with their baby after death, and this should be accommodated in the quiet room or in a bedroom. Any cultural or religious rituals should be respected and supported. Parents may wish to bathe and dress their baby themselves after death, and staff should not do this without explicit consent of the parents.

Memory boxes should be given to parents, if not already provided, and photography offered as above.

For babies who die on NNU, packs containing all necessary paperwork are kept on the unit. These can be found in the doctors’ office. There is also a set of information leaflets to be given to the family. These include information on death registration, funerals and support organisations such as the Stillbirth and Neonatal Death Society (SANDS).

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The use of cool cots

Cool cots (by Flexmort) are available at LGI and SJUH and can be used following the death of an infant to allow families to spend more time with their baby by reducing the body temperature. The length of time that this can be used for depends on the condition of the baby. Hospices have used the cuddle cot for up to 12 days. They recommend checking the baby for signs of deterioration twice per 24 hrs and this may guide decision making as to the length of time that the cot can be used. The baby does not need to be placed in the refrigerator intermittently. 

Cool cots can be lent to families if they wish to take their baby home. The outreach team would be able to facilitate the return of the equipment.

The baby must be laid on the cooling mattress and will need blankets on top of them to keep the coldness insulated. Families can be keen to swaddle their baby but this creates extra layers between the cooling mattress and the baby which will affect adequate cooling so it is better to have the baby dressed in normal clothing with blankets placed on the top only. It is really important to tell families that their baby will feel cold when they hold them, as this can be upsetting.

There must be adequate ventilation around the system of approximately 15cm to maintain the coolness. Air trapping is common and the alarms will beep and temperature will increase. To rectify this undo the water input valve and lift the machine system up and place down firmly. A bubble may come out . If not keep the valve undone and roll the mattress to push the water out as there may be an air bubble inside. It is important to keep the system topped up with water to help avoid this. The instruction manual is included as Appendix C.

The local hospices also use the same Flexmort Cool cots. The company can be contacted if you experience technical issues with the product (www.flexmort.com 08455 333561)

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Confirmation of death and death certificate

A doctor who has seen the baby alive and is certain about the cause of death should confirm death and complete the death certificate. The cause of death to be recorded on the death certificate should always be discussed with the consultant responsible for the care of the baby at the time of the death. The cause of death, as recorded on the death certificate, must also be recorded in the clinical notes.

For babies cared for at home, the care plan should indicate who and when to inform when the baby dies. If a family calls an ambulance when the baby dies, the police are automatically informed. The care plan is particularly important at this point.

Inform the family’s GP, obstetrician, any other health professional involved with the family. The following paperwork must be completed:

  • Cause of death proforma
  • Children’s Hospital death of a child checklist
  • Forms for the Child Death Overview Panel (CDOP)

A cremation form must always be completed at the time of death. This is very important as the baby must be seen after death by the doctor filling in the form and significant delays and distress can be caused to the family if a cremation form is not completed and is later required. If the baby does not go for cremation, the form can be discarded. For babies dying in hospital, a Badger summary should be completed within 24 hours by a registrar or consultant. A copy of the summary should be sent to all health professionals involved in the baby’s care, and to the obstetrician.

The person completing the death certificate should also inform a ward clerk or neonatal secretary of the death so that PAS can be updated. For babies who die outside the hospital PAS must also be updated as soon as we are made aware of the death.

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The Coroner

The case should be referred to the Coroner if:

  1. There is any doubt about the cause of death
  2. The parents or team looking after the baby have concerns about the cause of death (e.g. issues with care baby or mother received)
  3. The baby has died as a result of hypoxic ischemic encephalopathy
  4. A doctor has not seen the child prior to death or within 14 days of death.

If the case is to be referred to the Coroner, do not issue a death certificate. Complete the online referral form as soon as possible, and inform the family that there may be a delay before we can confirm whether there will need to be an inquest.

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Post mortem

A post mortem examination should be offered to all parents of babies who die even if the cause of death is obvious. This allows the detection of problems that may only be picked up as a result of a post mortem examination. A post mortem may be required by law if the Coroner is involved. The best time to broach the issue of post-mortem is soon after the infant’s death, except where the parents raise it themselves before death, or where it is known that a coroner’s post mortem will be required.

The family should be given a copy of the leaflet ‘A guide to the post mortem examination procedure involving a child’ (WNA610) prior to obtaining consent.

Contact Samantha Oaks (Nurse Specialist for post mortem consent. Tel: 07900433617), for help with consent and support for the parents through the post mortem process.

See the LTHT guideline ‘Policy For Obtaining Informed Consent For Hospital Post Mortem Examination’ for further details.

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Transfer to the mortuary

Once the parents have left the NNU, the baby should be transferred to the mortuary. The cremation form and medical records should accompany the baby to the mortuary. If the onward arrangements are for burial the mortuary will discard the cremation form. The parents should be informed that they can return to see the baby in the mortuary if they wish to do so. They will need to contact the mortuary directly to arrange an appointment. Out of hours the parents should contact NNU who can arrange a viewing via the portering service.

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Taking a deceased baby home

Parents can take their baby out of the hospital after death at any gestation, unless the coroner is involved.  Please refer to the Standard Operating Procedure for taking a Baby, Child or Young Person from Hospital after Death.

It is important to support families who are taking a deceased baby home. The NICU telephone number should be given to them should they need advice and one of the neonatal staff should phone the parents the following morning for support.

Families should be told that the house does not need to be cold.  A baby overnight is not going to decompose. However, if staying at home for longer, cooling facilities will be required.  The NNU or the hospices can lend cooling equipment to families for use at home.  

The family should be advised to ring their local Funeral Director the following morning. They will collect the baby to be looked after in a mortuary where the family can usually visit when they wish.

The plan should be documented in the notes prior to discharge.

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Registration of death

This should normally be done within 5 days of the death. Birth and death may be registered at the same time. The information pack contains a leaflet on registration of death, which should be given to the parents.
The next of kin or nominated other (usually another  relative of the child) should be advised and supported within working hours to register the death with the Registrar in Leeds who will issue a green 'certificate of disposal'. An appointment must always be made to register the death.
The Contact Centre is open to make appointments between 8am and 6pm Monday to Friday.
Telephone number: 0113 2224408.
The Registrar’s office opening times are: Monday -Thursday from 8.45 am till 4.45pm. Friday 9.45 am till 4.45pm and Saturday 9.00 am till 12 noon.
The Registrar’s office is close to the LGI - at 2 Great George Street.
There are other local registrar offices in Leeds, with varying opening hours. Full details of opening hours and contact points can be found on the local authority web pages at: http://www.leeds.gov.uk/residents/Pages/Death.aspx

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Organ donation

Currently neonates are potential donors for hearts, heart valves, kidneys and hepatocytes/liver.  Babies must be ³ 34 weeks corrected gestational age (could have been born more prematurely and reach this age postpartum) and ³ 2.5kg. There is a separate guideline for organ donation which also discusses Diagnosis of Brainstem Death (DBD). If you think a baby may be eligible for organ donation, contact the Specialist Nurse Organ Donation, Long range pager: 07659 171979 to confirm eligibility, before discussing with parents

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Funeral (burial or cremation)

The options for a funeral and how this can be organised should be sensitively discussed with the family. A list of funeral directors close to the family’s home can be found on the following website: www.nafd.org.uk/ click on "find a funeral director" and there is a section to input your post code. 

The funeral Directors will contact the mortuary to arrange for the transfer of the baby from the hospital to the Funeral Directors premises.

Most funeral parlours will do part of their service free of charge for children.

If a family opts for a cremation, a separate cremation form must be completed before the funeral goes ahead. It is best practice to fill this in at the time of confirming the death in case it is later required.

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Baby mailing preference service

Parents should be directed to the following website which will prevent unsolicited mail from baby related companies: http://www.mpsonline.org.uk/bmps/
There is a leaflet regarding BMPS in the parent information pack.

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Bereavement follow-up

All parents of babies who have died in the care of LTHT neonatal services should be offered the opportunity to return for an appointment to discuss the care of their baby. The appointment should be between 6 and 12 weeks after the baby’s death, or sooner if the parents request it, and should be with the consultant who has had the most involvement with the family, a named nurse and where appropriate a middle grade doctor. On occasions it may be appropriate to see the parents jointly with the obstetrician or other specialty consultant. The neonatal secretaries will arrange this appointment, which should take place in the Chaplaincy Room, C floor, Clarendon Wing. It is good practice to inform parents that they will be invited back to discuss the care of their baby before they leave the hospital. Be aware that follow up may be delayed for several months when awaiting a Coroner’s report. It is also possible to arrange follow-up in an alternative location, if parents would find it too difficult to return to the hospital.

Most local hospices, including Martin House and Forget-Me-Not, now offer bereavement support to families of babies who have died, even if they were not involved with the family or baby prior to birth. This service should be offered where appropriate. Families can also self-refer for this service.

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Financial support

Financial help is available for parents whose child dies in the neonatal period and includes:

  • Sure start maternity grant if first child and low income earner or receiving tax credits or certain benefits
  • If in possession of maternity exemption certificates can receive dental treatments and free prescriptions till it expires
  • Entitled to Statutory Maternity Pay if in paid employment and eligible for Maternity Allowance if not.
  • Also available through jobcentre plus and benefits office is Employment and Support allowance.
  • Entitled to 52weeks maternity leave with leave starting the day after baby is born, if yet to commence maternity leave at time of birth.
  • Statutory Paternity Pay if employed and employers previously notified about planned leave and claimed within 28days of birth; one to two weeks consecutive ordinary paternity leave.
  • Parents are entitled to Child Benefit from birth till eight weeks after baby’s death. However, they must claim benefits within three months of birth to get full payment. Child Tax Credit is also available for the same period but must be claimed within one month of birth.

 Specific information about financial support is available from the government website www.direct.gov.uk. The Bliss booklet “Financial advice” also has good information about claiming various benefits including maternity allowance, child benefit, income support, child tax credit, and working tax credit. 

The Patient Advice and Liaison Service (PALS) are able to connect parents with local center’s that help provide support at home including childcare. Grants are also available from the Family Fund.

Helpful contact numbers include PALS 0113 2067168, 0113 2066261.

The national charity, Turn2us also helps to provide access to various benefits, grants and support.

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Useful contact numbers:

LTHT chaplaincy: contact switchboard and ask for appropriate chaplain
Emergency Muslim registrar: via switchboard
Emergency Jewish registrar: via switchboard
Bereavement office: 0113 20 64302/64162
Post mortem consent nurse specialist: Samantha Oaks Tel: 07900433617
SJUH mortuary: 0113 2064312 (08.00-16.30)
LGI mortuary: 0113 3923313/23312 (08.00-16.30)
Leeds Registry office: 0113 2224408 (09.00-17.00 Mon-Fri) for emergencies out of hours use same number and press ‘1’
Martin House: 01937 845045 (09.00-17.00) 01937 844 836 (out of hours)
Forget Me Not Children’s Hospice: 01484 411040 (09.00-17.00) 01484 411 042 (out of hours)
Bluebell Wood Children’s Hospice:  01909 517 360
EMBRACE Transport Team: 0114 305 3005
Specialist Nurse Organ Donation, Long range pager: 07659 171979
PALS 0113 2067168/0113 2066261

Provenance

Record: 3440
Objective:
Clinical condition:

Life limiting illness and end-of-life care

Target patient group: Neonates and Infants under care of neonatal service
Target professional group(s): Secondary Care Doctors
Adapted from:

Evidence base

References:

  • Royal College of Paediatric and Child Health. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice.  Arch Dis Child 2015; 100: s1-s23
  • The Rainbow Children’s Hospice. Basic symptom control in paediatric palliative care - The Rainbow Children’s Hospice Guidelines. 8th ed. 2011
  • McHaffie HE et al. Withholding/withdrawing treatment from neonates: legislation and official guidelines across Europe. J Med Ethics 1999;25:440-446 (C)
  • Murdoch E et al. Palliative care (supportive and end of life care) A framework for clinical practice in Perinatal medicine). London: BAPM, 2010 (C)
  • General Medical Council (GMC), 2010. Treatment and care towards the end of life, London: GMC. (C)
  • ACT neonatal pathway (C)
  • Schott J, Henley A, Kohner N. Pregnancy Loss and Death of a Baby: Guidelines for professionals. 3rd Ed. London:  SANDS, 2007 ©
  • Chelsea and Westminster Hospital NHS Foundation Trust and Royal College of Paediatrics and Child Health (RCPCH).  Practical guidance for the management of palliative care on neonatal units. 1st edition. Chelsea and Westminster Hospital NHS Foundation Trust, 2014.
  • ACT. A Care pathway to Support Extubation within a Children's Palliative Care Framework. 1st Edition. ACT, 2011.

Approved By

Trust Clinical Guidelines Group

Document history

LHP version 1.0

Related information

Not supplied

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