4 Care and support during the neonatal period

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The role of palliative care

This chapter will further explore the ongoing needs of those babies who survive delivery and are transferred to a nursery or neonatal unit as well as exploring how to meet the needs of their mothers and other family members.

4-1 Can palliative care be provided in the neonatal period?

Yes, when a baby has been diagnosed with a life-limiting condition, or is born extremely prematurely and is admitted to the neonatal unit, there may be a continuation of palliative care that began before labour and delivery. Newborns who are diagnosed postnatally with life-limiting conditions such as Trisomy 13 and 18 or newborns identified early in the neonatal period with conditions such as complex syndrome, multiple birth defects or severe birth injuries may require palliative care. If a baby requires palliative care in the neonatal (newborn) period, we refer to this as neonatal palliative care.

Neonatal palliative care is palliative care given to a newborn baby who has survived the immediate post-delivery period with a life-limiting condition.

4-2 What plans and decisions need to be considered if the baby survives the immediate post-delivery period?

If the baby survives beyond the immediate post-delivery period, he or she will be transferred to the nursery or neonatal ICU where palliative care should continue. When a birth or advance care plan is in place, accommodate the plan as far as medical interventions will allow. If no plan is available, goals of care need to be discussed with the family and planned for. These goals of care must be documented in the advance care plan. Parents should know that this care plan is flexible, especially if the prognosis is uncertain.

4-3 What care needs to be provided if a decision is made to focus on palliative care after the immediate post-delivery period?

If a decision has been made to focus on palliative care, it is important that this message is clear when the baby is transferred to the neonatal unit or nursery. In this instance, babies are given comfort care measures which includes meeting their basic needs. These are as follows:

The core of neonatal palliative care planning is to decide on pain and distressing symptom management and care that meets the basic needs of the baby.

It is very important that all staff understand that routine nursery or ICU (Intensive Care Unit) procedures and observations should not be done if the baby is unlikely to survive and a decision has been made to only provide palliative comfort care.

Setting goals of care

4-4 What are the goals of care that need to be established?

The goals of care should be to ensure the comfort of the baby and minimise distress of both the baby and family. There needs to be continual assessment of the baby’s condition, any distressing symptoms, and signs of transition to the end of life.

An appropriate member of the care team should be available to guide parents in decision making and establishing goals of care for the baby. This may have already happened if an antenatal diagnosis was made and an advance care plan developed for the baby. However, if the baby is diagnosed postnatally as needing palliative care, a discussion with the parents must be facilitated where they decide what they wish to achieve or are hoping for. Questions they will be asked to consider may include:

The goals of care should be to ensure the comfort of the baby and minimise distress of both the baby and family.

4-5 Why do we need to establish goals of care?

The core of perinatal palliative care planning is to help and support parents in identifying their goals and, at the same time, help them work through any fears they may have. Based on the goals of care, the level of intervention required can be established. It may be necessary to plan for the best-case and worst-case scenarios if the outcome is uncertain. Therefore, the goals of care may evolve over time due to the changing condition of the baby. These goals of care will include plans for the physical, psychosocial, spiritual and end-of-life interventions needed.

Care of the baby

4-6 What care interventions are needed?

The care interventions include the following:

  1. Physical comfort care

    The normal routine care should be continued which includes bonding, positioning, temperature maintenance, skin care, mouth care, and skin-to-skin contact, such as kangaroo care, where possible.

  2. Pain and symptom management

    Prevention and treatment of pain and distressing symptoms to improve the quality of life of the baby is a fundamental part of perinatal and neonatal palliative care. A comprehensive and planned approach, which includes careful assessment and both pharmacological and non-pharmacological measures, is needed.

  3. Nutrition and feeding

    It is a mother’s natural response to want to provide nutrition to her baby. The goal of feeding is to provide comfort and reduce distress from hunger. Babies may be breastfed; bottle fed or be fed via a naso/oro gastric tube or cup. The method of feeding should be determined by the level of intervention established and what is most suitable for the baby i.e., providing nutrition, or providing comfort only. Oral feeding should only be withheld if it will cause pain or discomfort. Withholding regular feeds may be necessary as the baby with a life-limiting illness starts to enter the ‘actively dying’ phase. During this phase the baby becomes less and less hungry and shows no signs of wanting food (rooting, crying). This is part of the dying process and the resultant ketosis suppresses hunger and also helps with the release of internal endorphins (the body’s natural pain killers). During this stage the baby should be fed for comfort only when exhibiting signs of hunger, but if these signs stop or the baby is comatose, then feeds can be discontinued.

  4. Procedures or further investigations, monitoring and treatment

    Depending on the level of intervention decided upon, the extent of invasive diagnostic procedures and investigations that are unlikely to improve quality of life or might increase suffering should be kept to a minimum or avoided. These may include blood sampling or heel pricks, etc. However, many parents are comforted by the fact that their baby is being monitored and feel reassured that they are doing all that they can while not giving up hope. All procedures, investigations and monitoring must be done only if they are in the baby’s best interests. Face mask oxygen can be given for breathing difficulty.

  5. Resuscitation plans

    Limitations to resuscitation should be discussed and reviewed on a regular basis. If the parents and care team have agreed on the limitation of life-sustaining treatments, a do-not-attempt-CPR (DNACPR) order should be documented in the advance care plan as well as in the baby’s charts.

All procedures, resuscitation plans, investigations and monitoring must be done only if they are in the baby’s best interests.

It is very important that these goals are discussed and understood by the parents, palliative care team and the nurses and doctors managing the baby. Close communication and cooperation ensure that the parents are supported and the baby receives the most appropriate care.

Managing pain and distressing symptoms

4-7 Do newborn babies feel pain?

Yes. In the past it was thought that newborn babies do not feel pain, however, research has shown that term and even preterm babies do experience pain and express stress responses to pain.

Pain and discomfort should always be anticipated and, for this reason, there needs to be both pharmacological and non-pharmacological measures in place for the treatment of pain and other distressing symptoms such as difficulty in breathing, seizures and agitation.

Research has also shown that babies cared for in neonatal ICUs experience many painful procedures each day, and those born extremely preterm experience these procedures most frequently. Common painful procedures include nasal/tracheal suctioning, heel pricks, IV insertions, chest physiotherapy, blood sampling, etc. When planning care, it is therefore important to decide to what extent these procedures need to be performed.

4-8 How can you assess a newborn baby’s pain?

To assess the baby’s pain the approach needs to be ongoing, holistic and comprehensive. Pain rating scales such as the Neonatal Infant Pain Scale (NIPS) or Premature Infant Pain Profile (PIPP) can be used. Parents are often more aware than staff when their baby is experiencing pain or discomfort. If they feel their baby is in pain, it is important to address their concerns immediately by assessing the baby’s pain levels and providing the appropriate pharmacological and non-pharmacological treatment.

Babies feel pain and discomfort and this must be assessed and addressed.

4-9 What strategies can be used to manage a baby’s pain?

The best approach to the management of neonatal pain is prevention. It is important to identify what the cause of the pain may be and then correct what is treatable using both non-pharmacological and pharmacological measures.

  1. Non-pharmacological measures include:

Procedures appropriate for using non-pharmacological pain relief measures include heel pricks, dressing changes, removal of tape, intramuscular injections, and insertion of intravenous lines. It is also important to minimise routine procedures such as suctioning, and insertion of nasogastric tubes as much as possible.

  1. Pharmacological measures include:

For mild to moderate pain give:

For severe pain give:

Including the parents in monitoring and providing pain relief is essential as they are likely to spend the most time with their baby and can easily identify any changes in behaviour.

A detailed PatchSA Paediatric Palliative Care Formulary with medication names, doses, side effects and contradictions can be accessed via the PatchSA website.

Supporting the mother and other family members

4-10 What routine supportive care must be provided to the mother?

For the mother’s emotional and physical wellbeing, it is important that normal post-natal obstetric care be provided which should include regular surveillance and support.

If the mother has had a Caesarean section, provide the best pain relief possible while ensuring that this will not hinder her ability to interact with and care for her baby.

It will be important to consider and discuss lactation and breast care with the mother. If the baby dies around the time of birth, there may not have been time to establish breastfeeding. Options include suppressing lactation or donating milk to a milk bank. If the baby lives longer than expected, the mother should be given the option to breastfeed or express milk for either her baby or as milk donation or to suppress lactation. If available, a lactation consultant can advise and offer supportive care.

4-11 What emotional support does the mother need?

Where possible, move the mother to an area that allows for privacy away from mothers with healthy newborn babies. If there is not an opportunity for a private room or space, the staff should be aware and sensitive to what else is happening in the ward where the mother is located. Ask the mother where she would prefer to be as some do not want to be alone. The mother should be encouraged to spend as much time with her baby as possible and partners should be allowed unrestricted visiting.

4-12 What supportive care should be provided to the family?

It is important to extend support to the wider family including siblings and grandparents. Should the parents request it, other members of the family should be allowed as much time as possible to be with the mother and baby. Support can include:

Place of care

4-13 Where is the preferred place of care if the baby survives longer than expected?

When the baby lives longer than expected or the prognosis is uncertain there will be a need to explore, in detail, the immediate care needs of the baby and the eventual preferred place of care and death. This is especially necessary if the baby has been born in a tertiary facility and the family lives in a more remote area. Decisions will be influenced by available resources and local services.

If the goal of care is purely palliative, the baby can be transitioned out of an intensive care environment to a post-natal ward, a hospital closer to home, a hospice (if available) or discharged home for ongoing care. It is important that mothers who take their baby home to die still have contact with the clinical team.

The parents should also be provided with guidance on what to do when the baby dies at home. This includes arrangements for death declaration (ambulance staff), notification and certification (usually done by the doctors from the discharging maternity hospital). Pre-made arrangements with a funeral undertaker if the family have a funeral policy are invaluable in these situations and decrease unnecessary distress. If it is not possible to make these arrangements then the baby’s body could be brought back to the hospital (Dead on Arrival).

End-of-life care

When end-of-life care is anticipated, the parents must be informed that there is a deterioration in their baby’s condition and he or she is likely to die. As the baby approaches their final days, hours or minutes of life, all management should be focused on providing holistic comfort care. This management includes pharmacological, non-pharmacological and environmental interventions.

4-14 What end-of-life care is needed?

Babies who are at the end of life will undergo both physiological and behavioural changes and need careful ongoing assessment and management. This should include the following:

4-15 What distressing symptoms is the baby most likely to experience at the end of life and how do we manage them?

The symptoms a baby is most likely to experience include:

A methodical approach to assessment and management is required:

4-16 What are the aims of end-of-life symptom control?

The aims of symptom control at the end of life include:

You may need to explain to the family that the underlying disease condition is what will result in the death of the child, and not the symptom relief medication.

The main aim of end-of-life symptom control is to minimise the baby’s pain and suffering and reduce the distress to the baby and family.

4-17 What are life-sustaining treatments?

Life-sustaining treatments are treatments used to prolong or sustain life without reversing the underlying medical condition such as mechanical ventilation or intravenous fluids.

4-18 What does it mean to withhold or withdraw life-sustaining treatments?

Withdrawing a life-sustaining treatment is when a medical decision is taken to stop providing that specific intervention as it is not improving the underlying condition, is thought to be prolonging suffering and is not in the baby’s best interests.

Withholding a life-sustaining treatment is when a medical decision is made not to start such a treatment for the same reasons. For example, we may decide not to begin antibiotic therapy for a chest infection in an older child that is dying from cancer. In most cases, these decisions allow for a natural death.

Withdrawing or withholding treatment may be decided when it will not improve the underlying condition and only prolong suffering.

4-19 Who needs to make the decision to withdraw or withhold life-sustaining treatment?

The decision to withdraw or withhold life-sustaining treatments is complex and should be made by a team of experienced healthcare providers. While it is not the parent’s decision, they should be involved in the discussion regarding the child’s care and quality of life.

4-20 What is compassionate extubation?

Compassionate extubation is when a decision is made to stop (withdraw) mechanical ventilation and remove the endotracheal tube at a pre-planned day and time to avoid prolonging suffering.

If there is concern that the baby may suffer from upper airway obstruction following extubation, a decision may be made to do a terminal wean rather than a compassionate extubation. In this practice, the ventilatory support is gradually weaned while the endotracheal tube is still in situ and the baby then dies on the ventilator with the tube in place.

Supporting the family at the end of life

4-21 How can you support the parents as the baby enters the end-of-life phase and dies?

Supporting the family can include the following:

Provide the family with information in advance about the procedures to be followed when the baby dies and explain what you are doing at the time to help reduce anxiety.

4-22 What information do the parents need to understand that death has occurred?

It is important to explain that the following will mean death has occurred:

If the family wants to spend time with their child for a period after the death, inform them of the changes that will happen to the body once death has occurred and reassure them that these are normal.

Care after the death of the baby

4-23 How can you support the family in the hours after death has occurred?

Be prepared to provide the family with as much reassurance and support as they may need at this time and to deal with their grief which may manifest as guilt, anger, hysteria, sadness or even physical symptoms, such as fainting, when the baby dies.

It is important to allow the family to spend time with their baby’s body after the death if this is what they want. Allow the carrying out of any cultural practices regarding preparation of the body before it is taken away so that they have the opportunity to express their feelings and say goodbye. If cultural or religious practices allow, ask the family if they would like to have photographs taken of their baby or with their baby. Ask the family if they want to take a lock of hair, the baby’s identity arm band or hand and footprints as part of memory-making. Assist the family with the completing of the required documents, such as a notification of death form, as well as contacting the funeral parlour for collecting the body.

4-24 What can you say or do to help the parents at the time of death?

Parents will always remember those moments before and after their baby died. What you do and what you say will leave a lasting impression. Here is some guidance on what you can say or do at this time:

4-25 What should you not say to the bereaved parents?

Words and phrases that are unhelpful and even hurtful include:

4-26 What other aspects may need to be discussed with the parents?

If not done prior to the death, aspects that will need to be discussed with parents will include:

Case study 1

A woman goes into unexpected labour at 24 weeks gestation and delivers a liveborn baby weighing 550g. She is told the baby is too immature to survive. However, the baby is immediately sent down to the neonatal observation ward where it is given oxygen by face mask for difficulty breathing. The baby is placed in an incubator, routine observations are done and every hour a heel prick blood sample is taken to measure the glucose levels. The parents are only allowed to visit for half an hour and have been asked not to touch the baby. After 4 hours the baby dies.

1. Do you agree with the management of this baby?

No. This baby should not have been sent to the neonatal observation ward where strict protocols such as routine observations and blood glucose measurements are done. It would have been better if the baby had stayed with the mother.

2. Should the baby have been given oxygen?

Yes. Face mask oxygen is indicated if the baby is distressed. More active intervention to improve breathing would not be indicated.

3. Should visiting time be limited?

The parents should have been allowed to stay with their baby if he needed to be in the observation ward. The baby could have been screened off to one side of the ward so that the parents could have had private time with their dying baby.

4. Why should the parents have been allowed to touch their baby?

Touch is an important non-pharmacological way of soothing a baby. It is also a way of promoting bonding and making memories. This sad story is common in many hospitals where the basic principles of neonatal palliative care are not known, understood and practiced.

Case study 2

A routine ultrasound scan at 28 weeks gestation shows that the baby’s lungs have not developed normally (pulmonary hypoplasia). The parents are told that the baby will not survive but they decide to continue with the pregnancy in case the diagnosis is wrong. At birth the baby does not breathe well. As the birth plan states that the baby should not be resuscitated, he is given to the mother. His breathing improves a little and she is able to give him skin-to-skin care. He is even able to attach to the nipple for a few minutes. She and the baby are moved to a private ward where the parents can say goodbye. However, the siblings are not allowed to visit.

1. Should this baby have been fully resuscitated?

No. The birth plan indicated no active resuscitation. As this baby cannot survive without normal lungs there is no indication to move him to a neonatal ICU. He should stay with his mother.

2. Do you agree with the further management of this baby?

Yes. The mother can keep her baby warm and comfortable with skin-to-skin care. It is a very powerful way of making emotional contact with her baby. It also empowers her to care for the baby.

3. Why put the baby to the breast if he is not going to survive?

Like skin-to-skin care, putting the baby to the breast helps the mother bond with her baby. Unless it makes the baby distressed it makes important memories for the mother. The father should also hold the baby and can even give skin-to-skin care. Neonatal palliative care is not only about the baby but also the parents.

4. What advice could you give the parents when they are moved to a private ward?

The baby’s condition may deteriorate. If they are afraid, a staff member can spend time with them. At the time of death, the baby may become blue and gasp.

5. Should the siblings be allowed to visit?

Yes, if it is the parent’s wish and the siblings are willing. It is important that older siblings get to meet the baby where this is possible.

6. What can you say to parents when the baby has died?

It is best to simply say that you are sorry. Do not be afraid of showing your emotion. This is often appreciated by the parents as it shows you care.

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