1 Introduction to perinatal palliative care

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Contents

• Objectives
• Understanding perinatal palliative care
• The importance of perinatal palliative care
• When to provide perinatal palliative care
• The continuum of perinatal palliative care
• Different points at which perinatal palliative care can be provided
• Providing palliative care alongside other treatments
• Case studies

Objectives

When you have completed this course, you should be able to:

• Define the concept of perinatal palliative care.
• Identify the conditions that would benefit from perinatal palliative care.
• Provide care and support in the antenatal period.
• Provide care and support during labour and birth.
• Provide care and support during the postnatal period.

Glossary of terms

Understanding perinatal palliative care

1-1 What is the perinatal period?

Although the formal definition of the perinatal period is the period from possible viability of the fetus at 22 completed weeks of gestation until 7 days after delivery, in practice this period is sometimes extended from the confirmation of pregnancy until 28 days after delivery. This longer timeframe is used to support parents and family of a baby who is expected to die at any time during pregnancy or the first month of life as their needs are very similar to those who lose a baby between 22 weeks of gestation and 7 days after birth. Therefore, the working definition of the perinatal period from the time of diagnosing pregnancy to the end of the first month after delivery will be used in this chapter. This will include miscarriages. Any death during the perinatal period is called a perinatal loss.

The working definition of the perinatal period is the time from the confirmation of pregnancy to 28 days after delivery.

Note

Gestational age is measured from the first day of the mother’s last menstrual period. If the accurate gestational age is not known a birth weight of 500g is often used instead of 22 weeks.

Figure 1-1: Definitions used in the perinatal period.

1-2 What is a perinatal death?

A stillbirth or a neonatal death. This is the extended definition of a perinatal death.

Note

For collecting mortality data in South Africa the international definition of perinatal death, any death from 22 weeks gestation until 7 days after delivery is used.

1-3 What is the difference between a miscarriage and a stillbirth?

A miscarriage is a baby (fetus) who delivers before 22 weeks (not viable), while a stillbirth is a baby with a gestational age of 22 weeks or more who dies before delivery. A stillbirth may occur during pregnancy (antepartum stillbirth) or during labour (intrapartum stillbirth). Regardless of gestational age, parents experience the loss similarly and should be supported.

Note

For some developing countries with limited resources a stillbirth is sometimes defined as a fetal death from 28 weeks (a body weight from 1000g or a body length from 35 cm). This definition is not used in South Africa.

1-4 What is a neonatal death?

Liveborn babies who die before 28 days after delivery are recorded as a neonatal death while babies who die in the first 7 days are called early neonatal deaths and those who die between 8 and 28 days are called late neonatal deaths.

1-5 What is perinatal palliative care?

Perinatal palliative care focuses on an approach that assists, guides and supports families in decision making and planning in the event of a diagnosis of a life-limiting condition during pregnancy, a miscarriage or stillbirth, a preterm delivery or an infant born at term with a poor prognosis. It allows families to spend quality time with their infant, bonding and creating positive memories. Grieving will start at the time of hearing the bad news of the condition or prognosis of their infant. Therefore, perinatal palliative care includes bereavement support of parents, siblings and the extended family.

Using a palliative care approach from the time of diagnosis is about making sure that both the baby and family achieve the highest quality of life, regardless of the outcome.

Palliative care provides holistic, multidisciplinary support for families following the diagnosis or recognition of a life-limiting condition of the fetus or newborn infant.

‘Palliative care for a foetus, neonate, or infant with a life-limiting condition is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, at the time of death and beyond. It embraces physical, emotional, social, and spiritual elements and focuses on the enhancement of quality of life for the neonatal infant and support for the family. It includes the management of distressing symptoms, the provision of short breaks, and care through death and bereavement’

– Together for Short Lives – UK

Perinatal palliative care focuses on assisting families in decision making and planning if a diagnosis of a life-limiting condition is made during pregnancy or soon after birth.

The importance of perinatal palliative care

1-6 Why is perinatal palliative care important?

When a family is faced with the news that their baby has a life-limiting fetal condition or there is a sudden preterm birth or an unexpected post-birth diagnosis (such as hypoxic brain injury or a congenital disorder) there will be significant shock and a need for decision making. Perinatal palliative care is an approach that assists, guides and supports families in the following ways:

1. It aims to relieve suffering, to preserve dignity and promote quality of life for the baby and the family.
2. It allows for a continuum of care from the time of diagnosis, regardless of the length of life, and continues as follow-up care to the family after the baby dies.
3. It supports and guides decision making and planning.
4. It honours parental wishes and preferences for their baby’s care.
5. It allows families to spend quality time with their baby, bonding and creating positive memories whether the baby is born alive or dead.
6. It provides understanding that loss will start at the time of hearing the bad news of the health or prognosis of their baby. Therefore, perinatal palliative care includes bereavement support of parents, siblings and the extended family.

When to provide perinatal palliative care

1-7 When can perinatal palliative care be provided?

A palliative care approach can be provided at any time in the event of diagnosis or recognition of a life-limiting (reduced life expectancy) condition or life-threatening (high risk of dying) condition during pregnancy, labour or after delivery. These conditions include a miscarriage or stillbirth, a preterm delivery or an infant born at term with a poor prognosis.

Referral to a care team can be made at any point from viability (22 weeks). Perinatal palliative care can be provided alongside active treatment and into the bereavement period.

1-8 In what situations can perinatal palliative care be provided?

There are several fetal or neonatal situations that may indicate eligibility for perinatal palliative care. These can include perinatal loss, confirmed and potential life-limiting conditions and life-threatening conditions.

1. Perinatal loss includes the following scenarios:
   • Miscarriage (under 22 weeks completed gestation)
   • Stillbirth (22 weeks or more completed gestation)
   • Neonatal death (death in the first month of life)
   • Loss of one or more fetuses in a multiple pregnancy
   • Termination of pregnancy.
2. The British Association of Perinatal Medicine (BAPM 2010) developed a framework for life-limiting conditions considered eligible for perinatal palliative care, shown here in Figure 1-2.

Figure 1 ‑2: Categories of conditions needing perinetal palliative care.
British Association of Perinatal Medicine (BAPM). 2010. Palliative Care (Supportive and End of Life Care), A Framework for Clinical Practice in Perinatal Medicine.

Note

With the advancement in technology the need for perinatal palliative care may be recognized as early as first blood tests or scans during pregnancy where results may indicate a congenital disorder, whereby the parents will need support regardless of whether they choose to continue with or terminate the pregnancy.

Early initiation (starting from diagnosis) of palliative care may make a great deal of sense to those parents who must cope with a tragic prenatal diagnosis.

Perinatal palliative care can be provided in several fetal or neonatal situations which include perinatal loss, confirmed and potential life-limiting conditions, and life-threatening conditions.

The continuum of perinatal palliative care

1-9 What is a continuum of care?

A continuum of care involves a team of different healthcare providers working together to provide compassionate, non-judgemental care, which is provided in an ongoing fashion, regardless of the setting, from time of diagnosis. Bereavement care should be integrated throughout the perinatal palliative continuum of care and continue as follow-up care to the family after the baby dies.

Figure 1‑3: The continuum of perinatal palliative care.

1-10 Who is responsible for providing this care?

Perinatal palliative care requires a collaborative team approach. The team members will vary depending on when the need for palliative care is required.

1. Core team members:
   • The parents (and family)
   • Doctors, e.g. obstetricians, paediatricians, neonatologists, paediatric palliative care specialists, general practitioners
   • Nurses, e.g. midwives, paediatric palliative care nurses, neonatal nurses
   • Social worker
   • Spiritual counsellors.
2. Extended team members:
   • Sonographers
   • Psychologists
   • Bereavement doulas
   • Funeral directors
   • Childbirth educators
   • Genetic counsellors
   • Pathologists.

Perinatal palliative care can be provided by both a core and extended team of healthcare professionals.

1-11 Where can palliative care be provided?

Choices of care may vary and can be provided in any setting that is considered appropriate to the circumstances, with priority given to safe care of the mother and fetus or newborn baby. These settings may include clinics, maternity wards, neonatal units or nursery areas and in the home.

Palliative care can be provided in any location in hospital: in the delivery room, labour ward or in a neonatal unit. It can also be provided at home.

Different points at which perinatal palliative care can be provided

1-12 Are there different points at which perinatal palliative care can be provided?

Yes, there are three stages which represent the points of perinatal palliative care depending on when the diagnosis is made, namely:

• Antenatal period which may include the decision to terminate the pregnancy if a category 1 and 2 diagnosis is made, or support if the decision is made to continue the pregnancy, or support with opportunities for memory-making if there is an intrauterine death which will result in a miscarriage or stillbirth.
• Intrapartum period which may include a stillbirth or delivery of a live baby.
• Postnatal period and into the bereavement period.

1-13 What care can be included at each stage?

Perinatal palliative care, which includes bereavement support, can be provided during the following stages:

Antenatal diagnosis and obstetric care include care planning (birth and advance care planning if pregnancy is to continue), psychosocial support for the family and informed decision making before the baby is born.

Intrapartum support and care during labour and birth whether the baby is born alive or is stillborn.

Postpartum care includes offering emotional support, attending to the physical needs of parents and the baby, assisting with legal aspects, such as birth notification or death certificates, and if, or when, the baby dies, providing bereavement care and support.

Bereavement care includes supporting and/or referring parents and siblings to support groups or counsellors as needed.

Perinatal palliative care, which includes bereavement support, can be provided in the antenatal, intrapartum, and postnatal periods.

Providing palliative care alongside other treatments

1-14 Can perinatal palliative care be provided alongside illness-modifying or life-sustaining treatments?

Yes. If the parents and healthcare providers choose to initially pursue active treatment once their baby has been delivered, palliative care can be continued alongside active treatment. There can be a transition from active care to comfort supportive care at any point of care.

1-15 What are the core elements when providing perinatal palliative care?

1. Recognition or diagnosis of a life-limiting or life-threatening condition.
2. Establishing goals of care including birth planning.
3. Ongoing care and support by a multidisciplinary team, which includes the parents:
   • Physical
   • Psychosocial
   • Spiritual/cultural.
4. End-of-life care by the multi-disciplinary team:
   • Physical
   • Psychosocial
   • Spiritual/cultural.
5. Bereavement care and support

The core elements of providing perinatal palliative care include the recognition or diagnosis, goals of care, ongoing support using a collaborative team approach, end-of-life care and bereavement support.

Case study 1

A single mother who is 24 weeks pregnant with her third child has just been told that her baby has been diagnosed with a severe brain abnormality. She has been given the option to terminate her pregnancy but has declined as she wants to give her baby whatever chance she can. She is in your clinic room today for her 24-week check-up and wants to know what support she can receive to help her cope through this difficult time. Her other children are 6 years and 3 years old.

1. Who should you consider referring the mother to for further care and support?

The baby has been diagnosed with a life-limiting condition and is likely to die soon after birth, therefore the mother should be referred to a palliative care team (if available) for perinatal palliative care or to a social worker or counselor for counseling if there is no team.

2. Why should you refer the mother to the care team now?

Perinatal palliative care should be provided from the time of diagnosis of a life-limiting fetal condition, as this will allow an opportunity to establish goals of care for each stage of her pregnancy, the labour and delivery, documented in a birthing plan. This will allow her a chance to make decisions regarding end-of-life care for her baby.

3. When will the mother require bereavement care and support?

The mother is likely to start experiencing anticipatory grief from the time the bad news is broken to her about her baby’s condition. She will need bereavement support through the continuum of the infant’s illness trajectory, through the death and months to even years after the death.

4. Who else in the family will need support?

The older siblings will also need bereavement care and support.

Case study 2

A mother whose baby was diagnosed with a severe fetal abnormality (bilateral renal agenesis) at 20 weeks visits the clinic again at 26 weeks as she is worried because she has not felt her baby move in the past few days. Both parents opted to continue with the pregnancy and not terminate when given the baby’s diagnosis. She is now sent for a scan after no fetal heartbeat is heard and the sonographer confirms an intrauterine death.

1. Would her loss be considered a perinatal loss?

Yes, perinatal loss includes miscarriages, stillbirths, neonatal deaths and termination of pregnancy.

2. Could she have been referred to a care team when the baby was diagnosed as having a fetal abnormality at 20 weeks?

Yes, perinatal palliative care can be offered from the time of recognition or diagnosis of a life-limiting condition such as bilateral renal agenesis which has a significantly high risk of morbidity and mortality.

3. Which healthcare worker will be initially involved in breaking the bad news to the parents that their baby has died?

The sonographer will be the first healthcare worker to break the news to them.

4. Would a continuum of care be appropriate for these parents?

Yes, a continuum of care involves a team of different healthcare providers working together to provide compassionate, non-judgemental care, which is provided in an ongoing fashion, regardless of the setting, from time of diagnosis into the bereavement period.

5. Which healthcare professionals might you consider including in planning care for these parents?

Team members to include would be both a core team and an extended team of healthcare providers.

Core team:

• The mother and father
• Obstetrician
• Midwife
• Social worker
• Pastor/spiritual worker.

Extended team members to include, if available, the following:

• Bereavement doula
• Genetic counsellor
• Psychologist
• Child bereavement support group.

6. What care and support will they now need?

They would need the following:

• Goals of care need to be established which can include a birth plan
• Ongoing care and support by a multidisciplinary team which includes providing:
  • Physical care for the mother
  • Psychosocial care
  • Spiritual/cultural care.
• Bereavement care and support.