2 Providing palliative care in the antenatal period

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Providing care during the antenatal period

2-1 How should we share the significant news once the diagnosis has been confirmed?

Discovery of a congenital disorder (fetal abnormality), through either routine blood tests or ultrasound scan, or a sudden intrauterine fetal death, is an unexpected, emotionally devastating event for the pregnant woman and her family. The significant news should be delivered as soon as possible.

The way patients receive and subsequently deal with significant news is directly influenced by how the news is communicated to them. Taking some time to prepare for the delivery of significant news is crucial. This news needs to be broken in a sensitive and caring manner using language the parents will understand. Words or broad labels such as ‘lethal prognosis, fatal malformation or incompatible with life’ can have a lasting and devastating impact on the parents. Therefore, start by explaining that the baby has ‘not developed normally’ or has a ‘life-limiting disorder’ and may not survive.

Significant news should be given as soon as possible in a sensitive and caring manner.

2-2 How should we break significant news?

These are the steps to follow when breaking significant news:

  1. Create a safe environment:
    • Provide a private and quiet space free from interruptions.
    • Whenever possible, speak to both the parents together.
    • Include other support person(s) such as a social worker or chaplain if possible.
  2. Share the information:
    • Preparation:
      • Ensure that you have all the facts and information that you need
      • Eliminate possible distractions e.g. set your phone to silent and ask not to be disturbed
      • Sit squarely with an open body posture, facing the parent/s
      • Maintain reasonable eye contact
      • Have one person lead the discussion.
    • How to say it:
      • Use culturally sensitive translators with an understanding of the situation whenever necessary.
      • Be empathetic and respectful.
      • Give the information in a way that can be easily understood without euphemisms, clichés or medical jargon. Use simple, short sentences and check regularly for understanding.
      • Give accurate information and acknowledge any diagnostic uncertainty.
      • Be patient and repeat the information if needed.
      • Review the options available to the parent/s.
  3. After breaking the significant news:
    • Practice active listening
    • Allow the parents time to process the information
    • Respond appropriately to their feelings and provide empathic support
    • Determine any need for immediate support e.g. family, phone or transport
    • Offer to assist with disclosing the diagnosis to others
    • Explain the follow-up process:
      • Which appointments they will require
      • Referral to appropriate specialists.

It is important to learn the steps required when breaking significant news.

2-3 What are the difficult decisions that need to be made once the parents are told about their baby’s condition?

Having received the news that their baby has a life-limiting fetal condition, counselling with an appropriate team of healthcare professionals will need to be arranged. These sessions should include discussions to be made about the available pregnancy options which include:

Giving the family time to find out more about the condition, talk to other parents and make informed decisions will give them a sense of autonomy and control. Their decision needs to be respected and supported by all the healthcare providers involved.

Parents should be helped to choose whether to terminate the pregnancy, continue the pregnancy with comfort care only or continue with every life-saving intervention.

Management if the decision for a termination is made

2-4 Does the termination of the pregnancy need to be performed immediately?

When the significant news is given and the decision to terminate is made, unless it is a medical emergency, the mother or parents should not be rushed to have the procedure performed immediately. They should be given time to make an informed decision, allowing a period to grieve the loss of a normal baby and pregnancy, and plan tasks that they may wish to be implemented.

These tasks can include the following:

Do not rush the parents into a decision on when to terminate the pregnancy.

2-5 What supportive care will the mother and family need when the decision to terminate is made?

The following will be needed:

Loss can be experienced in many conditions, even in the absence of death, therefore bereavement care is an ongoing, continual process throughout the continuum of care.

Providing care and support for parents who have an unexpected intrauterine fetal death resulting in a miscarriage or stillbirth is similar to when a decision is made to terminate a pregnancy for a congenital disorder.

Management if the decision to continue with the pregnancy is made

Despite the advances in testing and diagnostic technology, the challenge of making an accurate, definitive diagnosis still remains in some cases and therefore, it can still be difficult to be certain of the prognosis, including life expectancy and disease severity or degree of disability.

2-6 What are the possible outcomes of the pregnancy?

2-7 When should the mother be referred to the perinatal palliative care team?

Referral can be made at any point from viability, that is, from 22 weeks gestation after a diagnosis of a life-limiting fetal condition. Some parents-to-be may seek consultation earlier than this in order to implement care planning for the pregnancy and birth. Offering palliative care as an option can help families feel more empowered during this difficult decision-making and care planning process.

2-8 What if there is no access to a palliative care team?

If no palliative care team is available, it is important that the treating healthcare providers use a palliative care approach to care and support the mother and the family.

Holistic perinatal palliative care planning

2-9 How can the mother and family be supported after the diagnosis and the decision has been made to continue with the pregnancy?

Parents who chose to continue a pregnancy with a life-limiting diagnosis have the unique experience of grieving for the future they had hoped for with their baby but at the same time embracing the pregnancy and planning for what they want to happen in the foreseeable future. Prenatal care should include focusing on facilitating attachment, creating memories and assisting the family to cope with possible anticipated grief. Support will include doing the following:

Encourage the parents to bond with their unborn baby if a decision is made to continue with the pregnancy.

Anticipatory grief is the normal grieving process when a person or family is expecting a death or a bad outcome such as a baby with a life-limiting condition.

2-10 How is holistic perinatal care planning offered?

Parents who have chosen to continue the pregnancy should be offered an opportunity to meet with the care team if available. This will facilitate care planning through which birth and advance care plans are developed for a number of various possible scenarios and outcomes. These plans are individualised according to their wishes and cultural, spiritual and religious beliefs.

2-11 What is the core of perinatal palliative care planning?

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 fears they may have. Goals of care are established according to the healthcare provider’s recommendations based on the underlying condition and decisions made of the level of intervention the family decide upon. An individualised written care plan is then composed, taking into consideration the parents’ wishes for themselves and their baby.

Always first assess the parents’ knowledge and expectations about what the possible outcomes could be after birth.

2-12 What are the goals of care?

When parents are given a potentially fatal diagnosis, they are informed of the varying options of care provision available once the baby has been delivered. These include either of the following:

2-13 Are there different types of perinatal palliative care plans?

Care planning typically includes documenting the plans discussed and agreed upon. Care planning includes the following:

These care plans should be flexible and allow for changes and updates when required.

Care planning documents are not legally binding.

2-14 What information and details should be included in the birth plan?

A birth plan is a tool that allows parents to document and communicate their wishes about their baby’s delivery and immediate postpartum care. Ideally this is drawn up before labour but if there is no birth plan in place, this process can be followed when labour begins. The following types of questions and options are usually found on a birth plan:

The plan should be communicated to the entire team caring for the mother and baby, including those expected to be at the delivery. It is very important that the midwife or obstetrician fully inform the institution’s staff of these plans.

A birth plan documents the parent’s wishes for their baby’s delivery and management immediately after birth.

For more information, see Appendix A: Perinatal palliative care birth plan checklist.

2-15 What is advance care planning?

Advance care planning (ACP) is planning in advance on how to manage a particular situation that may occur in the foreseeable future. It is appropriate for any baby where death is a potential outcome. The process of advance care planning in perinatal palliative care involves informing the family about what the future may hold for their baby, then initiating discussions and decisions around goals of care and the direction to take in the management of their baby’s life and care. It is not a once-off conversation, but rather a series of discussions between the care team and parents regarding the following:

  1. Goals of care
  2. The parents’ wishes for themselves and their baby, based on quality of life from the baby’s perspective
  3. The spiritual and emotional needs of the family
  4. Parallel planning for all the possible outcomes – stillbirth, preterm birth, full term birth
  5. Management of distressing physical symptoms
  6. Decisions with regard to interventions such as resuscitation at birth and end-of-life care.

Advance care planning addresses how to manage a future situation.

Open and honest care planning discussions between parents and the care team can help to focus on what really matters to families and ensure all are better prepared for whatever may happen in the foreseeable future.

2-16 What information and detail needs to be included in the advance care plan for the newborn baby?

The advance care plan for the newborn baby is a documented plan that focuses on the quality of life of the baby, once born. The process of advance care planning involves discussions and decisions made by the parents around the goals of care and the direction to take in the management of their baby’s postnatal care, pain and symptom control and end-of-life care. The advance care plan should include the following:

  1. Resuscitation status
  2. The intervention level – procedures or further investigations, monitoring and treatment
  3. The psychosocial needs of the mother and baby
  4. The spiritual and cultural needs of the mother and family
  5. The physical needs of the baby
  6. The place of care
  7. End-of-life care.

2-17 Who needs a copy of this advance care plan?

The following need a copy to make sure that the plan is understood by them all:

2-18 What is parallel planning?

Parallel planning is a way of planning for several possible future outcomes. For conditions with an uncertain prognosis and where there is a chance for a longer-term survival, parallel planning allows for healthcare professionals and parents to consider and plan for the best- and worst-case scenarios simultaneously.

Management if there is an unexpected early death of the fetus

2-19 What happens if the baby dies before delivery?

It is preferable for the mother to give birth vaginally as it is the safest method with the least interventions. For this reason, an induction of labour may be planned. However, the doctor will discuss delivery options with the mother. The possible indications for a Caesarean section would be a previous Caesarean section, a breech presentation, an increased risk of maternal haemorrhage due to either a placental abruption or placenta praevia, or in a multiple pregnancy where only one of the twins has died.

2-20 Does the induction need to be performed immediately if the baby dies in utero?

Unless there is a medical reason, a mother may choose not to have an induction immediately but opt to delay the induction for a few hours or days or to allow labour to start naturally on its own. Some mothers need time before they are emotionally ready to be induced.

2-21 Should the mother be given the opportunity to see her stillborn baby?

Yes. The mother/parents should be encouraged to see and hold the stillborn baby but should never be forced to do so. Staff need to be sensitive when showing a stillborn baby to the parents; the baby may have macerated or discoloured skin or other physical abnormalities. Parents need to be sensitively warned about what to expect. The baby should be dressed in clothes provided or swaddled in a blanket.

Parents should be encouraged to see and hold their stillborn baby.

2-22 What support can you provide at this time?

The grieving process will have started when the parents were informed of the diagnosis of their baby’s condition or of the death, but they might still not be prepared for the loss until they see and hold the stillborn baby:

2-23 What other interventions may be required?

The following options should be considered:

Case study 1

At a routine 20-week ultrasound scan the sonographer finds that a baby has anencephaly (absence of a major portion of the brain, skull, and scalp). The parents pick up from the sonographer’s body language that she is concerned at what she sees on the screen. They ask the sonographer whether there is something wrong with their baby. The sonographer tells them that she has identified a possible birth defect and would like to ask the obstetrician to take a look. The obstetrician arrives and confirms the findings. She tells the parents that their baby is anencephalic which is a condition that is incompatible with life and that they should consider terminating the pregnancy immediately.

1. Should the obstetrician have broken the news to the parents in this manner?

No. Parents will remember every detail of how the news was broken to them. They may remember where they were standing, who was in the room, who said what and especially how this news was shared.

2. Should the obstetrician have used the language she did to break the significant news?

No. The news needed to be broken in a sensitive and caring manner using language that is easy to understand. Words or broad labels such as ‘lethal prognosis, lethal malformation, fatal or incompatible with life’ can have a lasting and devastating impact. The doctor should should have explained to the parents that the baby’s brain has not developed normally and that this is a life-limiting condition from which the baby would die.

3. How should the doctor have created a safe environment to break the significant news to the parents?

The steps to create a safe environment include:

4. Is the doctor correct in telling the parents they need to terminate the pregnancy immediately?

No, they should not be rushed to terminate the pregnancy but be given time to make an informed decision and allowed to grieve the loss of a normal baby and pregnancy.

5. What possible outcomes of the pregnancy would the doctor need to prepare the parents for?

The outcomes of the pregnancy could be an intrauterine death of the fetus (miscarriage or stillbirth) or a liveborn baby either preterm or at term.

6. If the parents choose to continue with the pregnancy what needs to be established from them?

Their wishes and goals of care for the remainder of the pregnancy, delivery and for the newborn baby need to be established. These wishes and goals should be written in an individualised birth plan which must then be communicated to the team who will be taking care of the mother and baby, should it survive delivery.

Case study 2

A young unmarried mother attended her routine antenatal clinic at 28-week gestation and tells her doctor that she has not felt any fetal movements for the past few days. The doctor cannot hear a fetal heartbeat and an ultrasound scan confirms an intrauterine death. After discussing the options, the mother agrees to an induction of labour.

1. Would it be advisable for the mother to have a Caesarean section?

No, it is preferable to have a vaginal delivery as this is the safest method especially in a young woman who may still want to have children in the future.

2. Do you think it will be of help referring the mother to the palliative care team?

Yes. Offering her support will help her feel more empowered during this difficult time. It would be important to find out whether she has a partner or family who can also support her. Many mothers may feel it is their fault that their baby has died. Speaking about her fears and anxieties will help her come to terms with the baby’s death. She should decide who she would like to be with her when the baby is born.

3. Should she be allowed to see the baby when it is born?

Yes. She should be encouraged to see and hold her stillborn baby but only if she wants to. She should be warned that the baby may be macerated. Wrapping the baby in a towel may make the experience less frightening.

4. What memory-making activities could she do?

She may wish to keep a lock of the baby’s hair or make hand and footprints. Ask if she would like to have photos taken of and with her baby.

5. Should she ask for a post-mortem examination?

She will want to know why her baby died as this may make it easier to accept the loss. Often the doctor or midwife can tell from the mom’s history or examination of the baby and placenta what the problem was and whether the same problem will affect future pregnancies. Sometimes a post-mortem is needed if there is uncertainty as to the cause of death or if it looks like there was a congenital abnormality that may happen again. If a post-mortem is done, however, she will need to know that it will take a while to get the results and that the burial/funeral will be delayed.

6. What other support could be provided to a mother who has a stillborn baby?

Allow the parents and any siblings to spend as much time as they need with the baby. Also allow for privacy and as few interventions as possible. The mother will want to go home as soon as possible. Follow-up bereavement counselling may also be needed.

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