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Key messages

  • Palliative care aims to keep the baby comfortable and to support the family in caring for their baby.
  • When a potentially life-limiting condition is diagnosed antenatally, it is important for an experienced clinician to be present at birth to assess the actual gestational age or to confirm the diagnosis.
  • If a potentially life-limiting condition or gestational date is identified antenatally, discussions should occur during the pregnancy with the aim of addressing maternal and neonatal care both at the time of delivery, and after birth.
  • It is ethically obligatory to provide adequate analgesia when required. Medications to relieve distressing symptoms should be provided without hesitation.
  • Counselling and decision making must consider the religious and cultural background of the family and ensure that the decision making and support model is appropriate to this.
  • Consent for autopsy should only be sought by a senior clinician involved with the care of the child.

Despite advances in neonatal medicine and intensive care there are some infants where, after discussion with their parents, it is decided that the use of intensive or ‘extraordinary’ interventions to maintain life is not appropriate. Some of these infants die in the newborn period.

Care for these newborn infants may involve the withdrawal or limitation of active treatment in favour of a palliative care approach. The aim of palliative care is to keep the baby comfortable and to support the parents in caring for their baby according to their wishes and beliefs.

In the perinatal setting, the care continuum for these patients begins at diagnosis, typically in the prenatal setting, and continued support extends beyond the presumed life expectancy of the child.

While many such infants are managed in neonatal intensive care units (NICU), Special Care Nurseries may need to consider palliative care issues in the following circumstances:

  • infants born extremely prematurely (< 23 weeks)
  • trisomy 13 or 18 (or other lethal congenital anomalies)
  • infants who have been discharged from a NICU while being managed palliatively
  • infants with severe birth asphyxia (where decisions are sometimes made in consultation with PIPER not to transfer the infant and to manage palliatively).

Anticipatory discussion

In some cases a diagnosis of a potentially life-limiting condition or extreme prematurity may have been made antenatally. This may permit discussion with parents before the baby is born of the likely course for such an infant after birth, and allow planning of delivery room management.

Parents need clear and accurate information

Parents need:

  • Information in simple language about what is wrong with their baby.
  • The opportunity to discuss ways in which the baby's condition may impact on their management during the pregnancy and to consider all options for their pregnancy. For some this may mean management directed to optimisation of maternal health and reproductive future. For others it may mean giving priority to the need for live birth to allow contact with baby while alive.
  • To be told how long their baby is expected to survive and the advantages and disadvantages of available treatments.
  • To know the likely outcome if treatment is continued and how this will impact on their baby.
  • The likely trajectory and outcome if a palliative approach is taken, supports and options available in this context.
  • To be part of the decision making process.
  • To discuss what will happen after their baby dies (cold cot / hospital mortuary / funeral parlour).

Discussions with parents should include:

  • How the infant may die, though predictions of how long it will take for an infant to die are difficult to make.
  • The concept of living with uncertainty.
  • Descriptions of what the baby will look like and what changes are expected as the baby deteriorates such as colour changes and gasping.

Decision making

For most situations the key decision makers are the parents and the decision making model is based around them and is traditionally based on autonomy.

Having to face a decision about whether and how one's child may die is a very difficult situation for any parent, and may be considered excessively burdensome. Many parents prefer decisions to be made in a shared decision-making model involving both parents and health care professionals. Some require decision making to be heavily guided by health care professionals who hold both medical expertise, and in-depth knowledge of the family, their cultural and social values.

All parents need clear unbiased information and sensitive enquiry about the beliefs and values driving their decision making. Such a process cannot adequately be managed in a single session, as repeated exploration and explanation is usually needed.

For the clinician, the most critical skill is listening well, combined with the ability to draw out the parents' hopes for what can still be achieved for the baby and themselves.

Maintenance of hope is consistently reported as important, but this often cannot be the unrealistic hope for a cure in an impossible situation. A process of 'reframing what to hope for', with a focus on achievable goals can allow parents the consolation of having had real power to change things for the better for their baby, even if unable to change the ultimate outcome.

For some families an autonomous decision about the timing of death may not, at least on first inspection, be religiously or culturally available. In other families the key decision makers may not simply be the parents, it may be culturally appropriate and far more effective to involve extended family and perhaps other advisors, such as religious advisors.

An openness to explore a preferred decision making model and the supports needed is important in opening up discussion about difficult areas and can facilitate decisions which may, on first inspection, have been ruled out.

In all such discussions consistent contact with a senior person, who can follow through and maintain support, is essential.

Encourage parents to plan

Parents should be encouraged and helped to plan for:

  • the birth, care and death of their baby
  • who they would like present at the time of birth
  • any rituals that are important to them such as a naming ceremony or baptism
  • where they would like their baby to die.

If time permits it will help to introduce parents to the team who will be caring for them. Those involved may include nurses, midwives, doctors, social workers and chaplains. Parents should be reassured that they will be well supported emotionally and in caring for their baby. It may be appropriate to seek in advance the advice of a specialist in paediatric palliative care or a local palliative care service. This is particularly important if the parents may have a wish to care for their baby at home, as community supports are best set up in advance.

Care for the newborn

Immediate management

In the birth room all infants should be dried, warmed and wrapped in warm blankets. All parents should be offered the opportunity to remain with their infants immediately after birth where possible, although some parents may not want this, whether at all or in the first instance. Should this be the case, it is important to respect this wish.

Confirmation of diagnosis

It is important for an experienced clinician to be present at birth to assess the actual gestational age or to confirm the diagnosis. Antenatal images can be misleading, and definitive diagnosis is important for prognosis of affected infants, as well as for genetic counselling. There can be some uncertainty about gestational age from menstrual dates or ultrasound.

Pain and symptom management

One of the main aims of palliative care is to keep the baby comfortable. This can often be achieved by simple nursing care measures like:

  • Keeping the baby swaddled and warm.
  • Ensuring the nappy is clean and dry.
  • Cuddling the baby.
  • Feeding the baby if hungry and able to suck.

Most infants who are dying do not experience hunger. Artificial (tube) feeding should be considered based on the infant's expression of hunger and associated distress. Artificial tube feeding may not increase the comfort of a dying infant, and may prolong the dying process.

Some infants, who appear distressed, in pain or having seizures, require analgesia or anticonvulsants. This needs to be assessed on an ongoing basis and medication given as required.

Some caregivers are reluctant to give medications because of fear of side effects. It is helpful to view this from the burden versus benefit perspective. It is ethically obligatory to provide adequate analgesia (where painful conditions are present) and to attempt to control seizures.

Medications to relieve distressing symptoms should be provided without hesitation, in response to specific symptoms and in appropriate doses. Medications should be titrated to achieve optimum symptom control, with minimal side effect.

In considering treatment of symptoms, In doing so it is important to ask "Whose distress am I treating here?", as some conditions (such as short seizures) may not distress the baby whereas others (such as air hunger) may be distressing.

We may feel a pressure in ourselves or from colleagues to medicate heavily to remove such symptoms. The price paid for this may be oversedation and loss of awareness and interaction with the parents. It is appropriate to consider and discuss such decisions with parents, as treatment must be individualised.

Management of sleep cycle

Babies can be demanding sleepers at the best of times and babies in palliative care often more so, due to disturbed sleep routine caused by pain, distress or the effect of sedative drugs on sleep quality.

Good sleep hygiene practices are an important skill, with the establishment of a routine, minimisation of pain, swaddling and comforting.

There may be a place for short acting sedatives such as some benzodiazepines and melatonin has also been found to be useful.

Similar attention needs to be paid to ensuring that parents also get adequate sleep.

Specific measures for symptom relief

Pain or distress 
Analgesics as required to provide symptomatic relief from pain and distress. Give:

  • morphine 0.15 mg/kg sublingual, or 0.05 mg/kg IV/SC every 15 minutes as required (good for visceral pain and air hunger).

Agitation or seizures
For agitation or seizures give:

Drug
Loading dose
Maintenance dose
Phenobarbitone 20-40mg/kg I.V 3-5 mg/kg/Day I.V/Oral
Midazolam 0.5mg/kg oral or 0.1mg/kg IV every 15 minutes as required  
Clonazepam <0.25 mg I.V(premature or not on ventilator infants 0.1-0.2 mg I.V) 0.01-0.03 mg/kg/day Oral
  • If the infant becomes drowsy or is unrousable anticonvulsants should be ceased, if subsequent fitting occurs then these should be managed acutely using clonazepam or midazolam, but advice should be sought from a tertiary centre. Levetiracetam may have a place in longer term management, as it is effective, relatively non sedating and is well tolerated.
  • In infants who are offered comfort feeding only, seizures are rarely a problem. It is important to understand that the management of neonatal patients in the community setting is complex and should be undertaken with the support of a neonatal unit and skilled neonatal paediatricians.

    Reduction of secretions
    For reduction of secretions which are causing distress that cannot be adequately managed with suctioning and positioning, consider glycopyrrolate. This is usually only necessary in longer term home palliative care. Give:

    • glycopyrrolate 0.02-0.04 mg/kg 8/24 oral.

    Dry mouth or lips
    For dry mouth, use moist swabs or lip balms.

      Where to care for the baby

      Parents may wish to have their baby stay with them on the postnatal ward and should be given a private room. The postnatal ward presents challenges for parents of healthy newborn infants, and can be difficult for grieving parents who are surrounded by several healthy newborn infants while trying to care for their dying child. Other parents may wish their baby to be cared for in the neonatal unit or nursery. The family should be provided with quiet, comfort and privacy or with a place to take their baby when spending time together. Some families may wish to take their baby outdoors.

      In some cases parents may wish for the baby to be cared for at home with the support of outreach services such as Hospital in the Home, domiciliary or palliative care service.

      Very Special Kids provides another alternative venue for end of life care, where parents, siblings and extended family can all stay with the infant in a supported environment. There are nurses on site and doctors on call 24 hours a day, as well as family support workers who provide emotional support for the infant's family from diagnosis through to bereavement. This support is available for parents and siblings.

      The use of respite care can be very helpful in management of parental sleep deprivation in long term care and can also be of great value in management of the needs of siblings.

      Parents will need to be taught how to care for their baby, particularly if tube feeding or suctioning is required. They need to know who to ring if they are concerned or need help and numbers to contact when the baby dies for emotional and practical support.

      They need to be reassured that they can bring their baby back to the hospital at anytime if they feel they need to. It is important to have regular updates with parents to discuss their baby's care, answer questions and address any issues that may arise.

      Family support

      Support for families may be provided by their extended family, close friends, a general practitioner, the multidisciplinary team from the hospital, Very Special Kids, the Victorian Paediatric Palliative Care Program, chaplains and domiciliary and maternal and child health nurses.

      Creating memories is important for families and their grieving process. Encouraging parents to name and spend time with their baby may help this process. Parents and siblings should be given opportunities to hold, bath, clothe and feed their baby where appropriate.

      Some parents may not wish to do so and should not be forced. It is usually worth exploring why they do not wish to do so, if this can be achieved without creating pressure on parents to do something about which they may feel uncomfortable. Sometimes it is for cultural reasons or some parents may just need extra time, reassurance and support to overcome their fear.

      It is important to remember that all parents are different and that there is no 'right' way to manage such a distressing experience.

      Photographs

      Polaroid cameras, disposable cameras, digital still and video cameras can all be used for families to create their photographic memories.

      Families in Australia can access the service of Heartfelt, a volunteer organisation of professional photographers who provide high quality photographs of babies and who are available around the clock.

      For some families the taking of photographs may not be appropriate, so permission should always be sought.

      Photographs should be stored digitally in a secure computer to ensure that privacy can be ensured and that images can be retrieved later should the parents need them.

      Memory boxes and memory books

      Special memory boxes or books that can be made or purchased are valued by many parents and may include:

      • details of the baby's birth including date, time and weight
      • details of baby's death including date, time, weight and those present
      • handprints and footprints
      • locks of hair
      • plaster imprints of hands and feet
      • cord clamps, cot cards, measuring tapes, nametags, clothes the baby has worn, quilts and other mementos that the family find significant.

      Some families may have unusual requests such as a small container of the hand washing solution used in the nursery as the smell reminded the family of their baby. Try to accommodate requests where possible. Parents may not want these mementos at the time, but they should be retained as often parents come looking for them later.

      Pastoral care

      It is always worth inquiring about the importance of blessing, baptism or other rituals for the family. Some families will desire religious ceremonies which can be provided by hospital pastoral care workers, or the appropriate representatives of the family's religion or cultural background.

      The pastoral care team from the hospital may also be of great value in arranging contact with religious supports and advisors from the relevant community at the time when key decisions are being made. Such advice from those with a deeper understanding of the religious tradition may open up many decisions and may be a valued support for the family.

      Spending time with the baby after death

      Families may choose to spend time with their baby after death. This varies from family to family and variations should not be over-interpreted.

      Some families spend time with their baby in hospital and others choose to take their baby home. This is legally possible although it is wise to have the cooperation of an undertaker before the baby goes home, as this provides valuable back up for the family and ensures that legal requirements are met.

      Parents need to know that they can come back to the hospital and be supported in spending time with their baby once it has gone to the mortuary. Usually they would need to phone and make an appointment so that the baby can be prepared. Viewings can also be arranged with the funeral director.

      Staff support

      The experience of looking after an infant receiving palliative care can be rewarding for some and distressing and challenging for others. Communication and continuity of care among the multidisciplinary team is both essential and supportive for both the family and the team. Families benefit greatly from a coordinated approach with as few carers involved as possible.

      It is valuable to have a multidisciplinary care team meeting as part of the decision making process so that a care plan can be developed and a care team arranged. It also gives an opportunity to answer questions that staff may have and to offer them support. All staff involved should have the opportunity to access peer and professional support and formal debriefings should be arranged as required. Staff can also support one another.

      Follow-up

      The general practitioner and maternal and child health nurse should be notified of the death of the baby and the circumstances surrounding it so that they can support the family in the community.

      Domiciliary care for the mother should be arranged and she should be given advice on suppressing lactation. The Australian Breastfeeding Association has information on 'Lactation suppression' which may be helpful.

      Follow-up with the team who has cared for the baby should always be arranged with families after the death of an infant. It may be helpful to schedule this at a time when autopsy results will be available. Some families find it difficult to come back to the place where their baby died. Sometimes they like to meet outside the hospital or in a different area within the hospital.

      Answer questions and provide support information

      The follow-up appointment provides an opportunity to:

      • answer questions that the family may have about the death of their baby
      • organise grief counseling or genetic counseling if appropriate
      • provide families with information about local bereavement support services
      • screen for depression or major relationship dysfunction
      • ensure that mother's health has been properly checked.

      Practical issues in the death of a newborn baby

      The RCH clinical practice guideline on medical administrative procedures after the death of a child is a helpful resource.

      Autopsy

      Parents often find the discussion around autopsy distressing. One family spoke of the distress at having a doctor discuss 'cutting up' their baby while they were cuddling her. This reminds us that we need to be sensitive about the timing of this discussion and the way it is addressed.

      Autopsy has a number of values to parents, according to the situation:

      • to find out exactly what happened
      • to establish whether there is any genetic risk to other family members
      • to gain medical knowledge.

      An approach based around "It is a difficult subject, but for some parents autopsy is important for x,y or z reason. Do you think that this could apply to you?" can soften the blow, while giving the parents opportunities to discuss options they may not initially have considered.

      If parents consent to an autopsy an appropriate institutional consent form should be completed. Parents will want to know when the autopsy will be performed as it will influence when they can have the funeral.

      Discussion should encompass exactly what has to be examined, as this affects funeral choices.

      An external examination of the body by a pathologist, with or without post mortem, CT or MRI may give valuable information even if the parents do not want a formal autopsy. Similarly, selective biopsies/tissue samples may provide useful information without major disturbance.

      Autopsy can also be limited to major organs of chest and abdomen, without examination of the brain. This may only delay funeral processes by 1-2 days.

      Full examination of the brain requires that the baby's skull be opened and that the brain and spinal cord be preserved for 10-14 days before examination. Should the parents wish to bury the baby with brain in situ this delays burial for 2 weeks.

      Consent for autopsy should only be sought by a senior clinician involved with the care of the child. Discussion needs to include any specific investigations to be performed and the possible need for organ or tissue retention.

      Completing paperwork

      The following paperwork needs to be completed:

      • for infants less than 28 days old - Medical Certificate of Cause of Perinatal Death including the Confidential Medical Report of Perinatal Death
      • for infants 28 days of age or more - Medical Certificate of Cause of Death of a person aged 28 days or older
      • for all - Application for Cremation Authorisation AND Certificate of Medical Practitioner authorising cremation (this needs to be done by a different medical practitioner) or Application for Internment Authorisation.

      Coronial review

      Deaths may be deemed reviewable or reportable by the Coroner based on the below criteria. It is important to note that reportable deaths require attendance of uniformed police, and transfer of the infant to the coroner for further assessment. Reviewable deaths may simply involve a review of the medical records, without the need to transfer the infant into the coroner's care.

      Deaths are reviewed by the coroner if:

      • the doctor is unable to ascertain the cause of death
      • the death:
        • appears to have been unexpected or unnatural
        • occurs during an anaesthetic or as a result of an anaesthetic and is not due to natural causes
        • involves a person whose identity is unknown
        • involves a baby who was held in care immediately before death
        • involves the death of a second or subsequent child born to the same parent.

      If you are unsure contact the Victorian Coroner's office on 1300 309 519.

      When a death is reported to the coroner the following paperwork applies:

      • medical deposition
      • statement of body identification
      • request form to the coroner to not direct an autopsy should be completed if the family do not wish for an autopsy
      • death certificate or cremation form should not be completed where the cause of death cannot be ascertained.

      Organising the funeral

      Most parents would not have arranged a funeral before so will need information on how to arrange their baby's funeral. A social work or pastoral care worker can assist with arrangements, emotional and practical support and referral for ongoing support.

      The timing of this information will vary from family to family. Some people will want to know before the baby dies and others will not want to discuss it until after death.

      It is important to remember that there is no rush to organise the funeral and sometimes if it is culturally appropriate, it may be better to wait until the mother is well.

      Red Nose have an excellent brochure, Choices on arranging a child's funeral. It informs parents about their choices and guides them through this difficult time.

      Family members, members of the clergy and social workers are good resources and will be able to help the family to choose an undertaker who will meet their special needs.

      More information

      References

      •  ACNN. Palliative care in the neonatal nursery. 2010.
      • Leuthner SR. Palliative care of the infant with lethal anomalies. Pediatr Clin North Am 2004; 51(3):747-59, xi.
      • Carter BS. Providing palliative care for newborns. Pediatr Ann 2004; 33:770-7.
      • Bell SG. The pharmacology of palliative care. Neonatal Netw 2004; 23:61-4.
      • Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol 2002; 22:184-95.
      • Craig F, Goldman A. Home management of the dying NICU patient. Semin Neonatol 2003; 8(2):177-83.
      • Warland J. (2000) The Midwife and the Bereaved Family  Ausmed Publications  Victoria Australia.
      • Lacey M. Eden, MS, APRN and Lynn Clark Callister, RN, PhD, FAAN. Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review. Journal of Perinatal Education, 2010 Winter; 19(1): 29–39.
      • Paediatrics & Child Health Division of The Royal Australasian College of Physicians, Decision-Making at the End of Life in Infants, Children and Adolescents A Policy of the Paediatrics & Child Health Division of The Royal Australasian College of Physicians, Internal Publication Sydney.
      • PSANZ Perinatal Palliative Care Special Interest Group.

      Consumer

      Get in touch

      Maternity and Newborn Clinical Network
      Safer Care Victoria

      Version history

      First published: March 2014

      Last reviewed: October 2018

      Review by: September 2019

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      Page last updated: 23 Nov 2018

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