5 Key considerations in perinatal palliative care

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Contents

• Objectives
• Care and support of the family after the death of the baby
• Post-partum care and discharge
• Other circumstances needing consideration
• The role of genetic counselling
• Care of self
• Case studies

Objectives

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

• Provide bereavement care and support to families after the death of their baby.
• Provide physical care to the mother during the post-partum period.
• Advise the mother about lactation decisions and breast care.
• Communicate with parents the need for sibling support.
• Identify the need for genetic counselling.
• Identify the need for staff wellbeing and self-care.

Care and support of the family after the death of the baby

5-1 What is the effect of a perinatal loss?

A perinatal loss can be described as one of life’s most devastating experiences, affecting the parents, any siblings, and a wider circle of relatives and friends. The gestational age or length of time which the baby has survived does not significantly influence how parents grieve. For parents who wanted the pregnancy, it is a loss of all the hopes, dreams and the future they imagined for the baby, themselves and their family.

The death of a baby is always distressing and the quality of care provided for the family before and following the death will have a lasting impact on the grieving process and the bereavement period. Part of the continuum of care includes supporting the family in the bereavement period.

All staff should understand how to provide ongoing bereavement care and support and be aware of the range of grief responses that parents may demonstrate after a perinatal loss. Bereavement care and support is best when managed in a multidisciplinary manner.

Note

Occasionally, there may be an absence of grief, a feeling of relief and/or overwhelming guilt if the baby was not wanted. These families should be treated in a non-judgemental way and should not be forced to do anything that makes them feel uncomfortable.

5-2 What is bereavement?

Bereavement is the period of time when the person is grieving and mourning a deep loss. Bereavement is the same after a miscarriage, stillbirth or neonatal death as when an older child or adult dies. It is the normal state a person experiences during the period of grief and mourning after a loss such as death.

Bereavement is a period of time during which the person is grieving and mourning a loss.

5-3 What immediate bereavement care and support do parents need?

If the baby’s death is expected soon after birth, the parents would have already started to grieve before the delivery. They may have been made aware of the responses and reactions they are most likely to experience so as not to be too surprised by them. However, if it is a sudden and unexpected death, the event will likely be even more distressing. The enormous loss experienced by the parents must be recognised and acknowledged.

Members of staff should be sensitive to possible differences in the way men and women grieve and show equal support to both parents, ensuring everyone feels safe to express their emotions. If there are any differences of opinion between the parents, these differences should be acknowledged and a time and place arranged to address them with sensitivity and understanding.

5-4 What initial reactions can be expected?

Accept that the family may have a broad range of grief reactions. Loss of a pregnancy or a newborn baby is an acute and distressing experience for parents who planned for and expected to have a normal, healthy baby. Parents generally are in a state of shock and numbness, even if it is expected that their baby would die. Disbelief and denial can occur. Intense outbursts of emotion and crying are common. They may also feel anger and blame themselves or the caregivers.

Disbelief and denial are often the first reactions to bad news.

5-5 How can we support the parents at this time?

Reassure the parents that what they are experiencing is normal. Ways to support them include the following:

• Validate (acknowledge) their experience and feelings without judgement and do not withdraw from the situation. Give them the time and space to react while still being present and available to support them and to answer any questions they may have.
• Encourage them to tell their personal stories. They may need to tell their story over and over again as this helps them process the loss.
• Listen in a non-judgemental, caring manner.
• Give them permission to grieve.
• Explain and reassure them that grief is normal and each individual grieves in their own way, and in their own time.
• Allocate enough time to spend with them without being rushed.
• Know who is available to counsel them should they need it, whether it be a grief counsellor, a pastoral worker or other members of the care team.

5-6 What ongoing bereavement support will the family need?

Ways in which parents can be supported once the mother has been discharged home include:

• Informal types of bereavement support such as giving sympathy cards, sending letters, emails or text messages, phone calls, and attendance at funerals and memorial services are deeply appreciated by parents when provided by healthcare providers who cared for them during the pregnancy and/or neonatal period.
• Parents should be offered follow-up appointments with the treating team in hospital, with bereavement support groups or with family doctors, as these appointments provide further opportunities to discuss their baby’s death as well as offering some emotional support.
• Provide information in multiple formats (e.g., written, audio-visual, or internet based) about the bereavement process including gender differences, expected problems, needs of siblings and extended family and available services in and around their community.
• Support groups can play a vital role in helping grieving families both before the baby’s death and afterwards. Knowing that they are not alone and knowing what to expect assists parents in coping with their grief.
• Ongoing assessment of each of the family members for signs of complicated grief and other mental health concerns.

5-7 What is complicated grief?

Complicated grief refers to bereavement accompanied by extreme symptoms of separation distress and trauma. To consider that someone is experiencing complicated grief, these symptoms must have lasted at least six months or have led to severe functional impairment (e.g. unable to manage day to day responsibilities).

Complicated grief may also present as prolonged grief or sometimes as a complete lack of any signs of grief and mourning. Complicated grief includes behaviours such as an obsession with and longing for the dead baby, isolating themselves, or intense and continued guilt or anger, depression or anxiety.

Providing ongoing bereavement support can reduce the risk of isolation for the family and at the same time reduce the risk of complicated grief.

Complicated grief refers to mourning beyond 6 months or grief resulting in severe functional impairment.

5-8 What are the risk factors that may result in complicated grief and post-loss depression?

The loss of a baby is a traumatic event and therefore there may be an increased risk for the mother, and possibly the father, of developing intense grief reactions after the baby has died. The risk factors associated with the increased likelihood of experiencing complicated grief and/or post-loss depression include:

• Lack of social support
• A history of infertility
• No other children
• Difficulties in the existing relationship
• Termination of a pregnancy for severe fetal anomalies.

Post-partum care and discharge

5-9 What unique postnatal aspects do we need to consider for the mother whose baby has died?

Aspects that we need to be concerned about for the mother include:

• Her emotional wellbeing
• Her post-partum physical recovery
• Breast care
• When she returns to work as many work policies do not acknowledge perinatal loss or honour mourning and so she may be expected to return to work early on in the bereavement period
• The timing of possible future pregnancies and family planning.

5-10 Is it important to provide breast care and lactation support?

Yes, women produce colostrum from 16 weeks of pregnancy and when the baby is born the mother’s milk will ‘come in’, regardless of whether the baby survives or not. Discussions need to be centred on whether she will prefer to let lactation stop if her baby dies or whether she would like to express and donate her milk to a milk bank.

Routine breast care and advice should be provided as part of post-partum care. For painful engorged breasts ice packs, cold cabbage leaves, paracetamol (Panado) and a firm supportive bra are recommended. Small amounts can be expressed to manage engorgement but too much expressing of milk will prolong the drying up process. Milk will dry up in 2 to 3 weeks.

Note

The South African Breastmilk Reserve is an organization that has pioneered a human-milk banking model in South Africa. To find out more about the organization, visit their website: www.sabr.org.za.

Note

Medication to suppress lactation is usually not used as the drugs have side effects. Binding the breasts tightly is also not recommended.

5-11 What arrangements should be made for discharge from hospital?

To provide a continuum of care, the treating facility needs to arrange who will be instrumental in the follow-up care once the mother is discharged home. She should be referred to her primary health clinic, her primary treating doctor or social services.

Referral should initially be made via a phone call. A referral letter sent via email should follow shortly after making the call.

The referral letter should include:

• A history of the pregnancy, birth and neonatal care provided
• A follow-up plan
• Services offered whilst in hospital such as genetic counselling or bereavement support
• The hospital dates for follow up visits
• A list of the support services that have been offered to the mother and how to contact them.

Parents should be provided with written details of national and local sources of support and organisations. They can also be guided to relevant websites and given literature and pamphlets to take home, if available.

Note

If the baby is still alive and both mother and baby are being discharged, it would be important to find out if there are any children’s palliative care teams close to where they live. If available, referral of the family should be arranged. Information on children’s palliative care services can be found on the PatchSA website: www.patchsa.org.

Detailed follow-up care plans must be in place when the mother is discharged home.

Other circumstances needing consideration

Multiple pregnancies

5-12 How can you support parents where one baby of a twin pregnancy has died?

When there has been a twin pregnancy and parents have suffered the death of only one baby, bereavement support is more complex and is often over-shadowed by the care needs of the surviving baby. Many families are challenged by simultaneous feelings of both joy and grief and therefore experience difficulty in expressing their emotions.

Ways in which the parents can be supported include the following:

• Acknowledgement that the surviving baby is a twin.
• Acknowledge the memory or existence of the twin who has died.
• Find out the name of the baby who died and talk about their baby by name.
• Acknowledge that the family will be grieving and use empathetic behaviours, words and phrases that will provide emotional support.
• If the surviving twin is in the nursery or neonatal ICU, use a symbol such as a butterfly on the cot to indicate that this baby was one of twins. This symbol should be understood by all staff members.
• Place a symbol such as a butterfly above the mother’s bed or on her charts so that changing staff members will know that this mother has lost one of a twin and will need sensitive emotional support.

Support for siblings

5-13 Do siblings need to be supported?

When a baby is born prematurely, has a life-limiting condition or dies before going home, it is important to recognise that this can be a very stressful time for any siblings (brothers and sisters of the baby) who may be at home and be in the care of other family members. The impact on siblings can go unrecognised when parents are preoccupied with the health or death of their baby. In addition, information is often withheld from siblings in an attempt to protect them.

It is sometimes assumed that siblings will not be too deeply affected by the death of a baby they may or may not have met. However, this is not usually the case. All children grieve according to their developmental age and stage and will need some support. It is important that healthcare workers understand that siblings are an integral part of the family and that interventions are put in place to provide ongoing support to them.

5.14 How can siblings be supported?

Interventions to support siblings before or after the death should include the following:

• Preparing parents for common behaviours that may be displayed by siblings. These may include behaviours such as clinginess, being very withdrawn or being disruptive.
• Advice to parents on how to explain the baby’s condition and the current situation if still alive.
• Parents should be encouraged to tell the truth in a developmentally appropriate way.
• Enabling the siblings to meet their brother or sister or, if they would like to do so, to say goodbye if the baby has died. These visits should never be forced.
• Siblings need to be given developmentally appropriate explanations of what they may see before they are allowed to visit.
• Opportunities for involvement in the care of their brother or sister such as feeding or bathing. Participation in memory-making activities for example taking photographs of them holding the baby if feasible, drawing of pictures, and writing poems or letters should be encouraged.
• Whether the baby goes home or dies before going home, follow-up support is essential. This support can include providing grief resources, referring the family to support groups and informing schools of the situation.

Siblings at home also need support and must not be neglected.

The role of genetic counselling

5.15 What is genetic counselling?

If a baby is affected by an inherited genetic disorder, it is important to offer an appointment with a genetic counsellor to discuss the risk of the problem recurring in future pregnancies. Genetic counsellors are trained to have these difficult discussions about complex issues. Parents can be empowered to make good decisions for themselves, other children and future pregnancies. Some parents want to be reassured that their baby’s congenital disorder is not genetically inherited and is very unlikely to happen in a future pregnancy.

Care of self

5-16 What impact can caring for babies whose lives may be short have on you as a healthcare provider?

Caring for a baby who is not expected to live long and their family members, can have an emotional, physical, spiritual, behavioural and cognitive impact on the healthcare provider. There could be feelings of failure when the baby dies – feelings that they have failed because they could not save the baby’s life or failed in their social role as adults to protect the baby from harm and feel they have betrayed the parents who trusted them with the most valuable being in their life.

It is important that healthcare providers examine and understand their personal feelings about death and dying to be effective in providing ongoing support to the family, as well as prevent burnout and a probable risk of developing compassion fatigue.

5-17 How can you deal with your own grief as a healthcare provider?

The following suggestions may assist in dealing with your own grief:

• Organisational strategies include:
  • Finding outlets for sharing emotional expressions such as debriefing sessions, retreats, professional counselling and pastoral care.
  • Allowing time and opportunities for grieving such as dedicated meditation areas, memory boards or books and remembrance ceremonies.
  • Educating yourself on grief theories, compassion fatigue, end-of-life care and communication.
• Personal strategies include:
  • Recognising feelings of grief and loss and allowing yourself time to grieve.
  • Using available resources and mechanisms for coping with grief through sharing feelings and venting emotions with co-workers, friends and family members.
  • Finding activities that bring comfort and refreshment such as painting or listening to music.
  • Identifying ways to renew personal strength and wellbeing, for example spirituality, yoga or relaxation.
  • Maintain physical health by eating healthily and exercising.
  • Maintaining an appropriate work-life balance.
  • Building positive relationships in both your personal and professional life.
  • Seeking professional help when needed.

As a healthcare provider it is important to use both organisational and personal strategies to cope with your own grief.

5-18 What is self-care?

Self-care is about you. It is about looking after yourself physically, emotionally, spiritually and socially (mind, body and soul) so that you can be the best person possible both at work and at home. Self-care is different for everyone as it is whatever nourishes and re-energises you. Through self-care you can develop resilience (the ability to bounce back) and the ability to walk forward positively every day. Self-care also ensures that you will be a fully functioning and effective member of a healthcare team.

Self-care is important so that you can be your best both at home and at work.

5-19 Why should self-care become a daily practice?

Daily self-care practices will help you build up resilience to deal with the emotional and sometimes traumatic health events that you face daily with your patients. Resilience is the ability to bounce back after a stressful time. Each of us is like a pot of liquid with a lid over a fire. The logs in the fire under the pot represent the stress in our lives. As more logs are piled onto the fire it gets hotter and the liquid in the pot begins to boil. If we do not find a way to lift the lid and relieve some of the pressure, the contents will bubble over. Once that has happened, we are unable to get all that liquid back into the pot. Self-care is like lifting the lid a little every day to stop it boiling over.

5-20 How can we take care of ourselves at work?

Self-care is about caring for your body, mind and spirit. It takes discipline to eat a balanced diet, sleep enough, exercise and ensure we keep our minds healthy. In healthcare teams you should take time each day to check in with one-another. Each of us is a human being and this should never be forgotten. There are a number of things you can do at work to help take care of yourself:

• Because you are busy and time runs away while caring for patients, formally choose a ‘buddy’ to whom you are accountable. You should check in with each other on a regular basis.
• Be each other’s mirror and if you identify that you or your ‘buddy’ is struggling, seek help.
• Plan a regular meeting with a range of different team members to talk about the challenges of caring for patients.
• Ideally, we should be requesting supervisors to arrange a formal debriefing once a month or at least provide more formal debriefing after a death on the ward or other traumatic incident.
• Set firm emotional and professional boundaries for yourself.

5-21 How can we take care of ourselves in our private life?

There are a number of things that will help:

• Take time out wherever you are. Stop: scan your body for tension, your mind for stress, breathe through any tension and start again.
• Take time to write in a journal weekly. Writing can often soothe and calm your mind.
• Take time to do some form of exercise even if it is just walking.
• What do you do for fun? Schedule it in your diary and make a commitment to take time for this. Don’t cancel on yourself! Make yourself a priority, since if you don’t prioritise yourself, you will not be able to care for others.
• Spend time on the things that feed your soul. For example, your faith, daily practices, volunteering, reading, walking in nature, singing and other favourite spiritual endeavours.
• Be present and avoid distractions.
• Spend quality time with your husband, wife, partner or good friends where you have no distractions or interruptions.
• Take note of your feelings and emotions, both good and bad, and notice the emotional and physical triggers. You don’t have to avoid the triggers; just be mindful of them and recognise them, acknowledge them and then breathe.
• Allow yourself time to grieve if needed. You are allowed to feel sad.
• Nurture close friendships outside of work.
• Practice mindfulness.

The key lesson of self-care is that you cannot care for your patients or work well with others if you are not also taking care of yourself.

Note

True self-care is not an occasional luxury treat or holiday. It is the discipline to care for your mind, body and spirit, building the life you want to live.

5-22 What barriers are there to self-care?

There are many barriers to self-care:

• Firstly, we need to recognise its importance. There is a misconception that stress is something to be overcome rather than reduced. It does not always help to simply work harder.
• The biggest barrier that most people complain about is a lack of time. Everyone is so busy being busy that it is difficult to find the time to get everything done, such as exercise, sleep, eating well and caring for the family and work.
• Healthcare providers are at high risk of putting the needs of others before their own. We have to give of ourselves at work and at home.
• Many people believe that self-care requires financial resources. This does not have to be the case. Find the things that make you feel happy.
• Taking the time to look after ourselves can leave us feeling guilty: guilty that we are not being a good enough parent, partner or healthcare provider.
• We have a poor sense of self-worth.
• Social media and electronic devices can be a problem. We are constantly bombarded by our cellphones. We are always contactable and some of us are addicted to sites like Facebook and Instagram. This can take a lot of time away from caring for yourself. Be aware and monitor the time you spend interacting online.

5-23 What must self-care include?

Good self-care includes making sure that boundaries are in place and that you are protecting your mental health. So make time and make space for yourself. If you do not, the consequences can be severe for all involved in the healthcare relationship. This includes not just your work environment and patients but also your family and loved ones.

Good self-care includes setting boundaries and taking care of your mental health.

5-24 What are boundaries?

It is important to set both personal and professional boundaries as they are a key part of self-care:

• Professional boundaries are those set out in our code of conduct that ensure that we do not behave inappropriately with our colleagues and patients. For example, becoming romantically involved with a patient you are treating.
• Personal boundaries are setting your own personal limits. For example, deciding for what you are responsible and what you are not. Boundaries are not about building emotional walls which can be harmful to you, your colleagues and your patients. Being assertive and saying ‘no’ can be done in a caring and empathetic manner.

Note

Boundaries are a key part of self-care. ‘In work or in our personal relationships, poor boundaries lead to resentment, anger, and burnout’ (Nelson, 2016). Setting boundaries helps to avoid burnout and stay in the profession longer (Bernstein-Yamashiro and Noam, 2013). Read more about boundaries at www.ncsbn.org/professional-boundaries.htm

5-25 How can we be aware of our boundaries and crossing them with our patients and their families?

There are a number of ways to be aware of our boundaries:

• Check yourself for over-involvement but do not be afraid to be empathetic when dealing with your patients. There is a difference between being empathetic and literally ‘climbing in’ with your patient. Don’t jump into the water with them, help pull them out instead. Otherwise you might both drown.
• You can be mindful of your patient and family’s suffering, acknowledge it and discuss it with them, but it is not your pain to take on.
• If you feel like you are overstepping boundaries, you probably are.
• Help patients and families set the boundaries, and if inappropriate, you can kindly inform them in a manner that is both kind and caring while remaining professional. Being professional is not about being cold, distant, emotionally removed and clinical.

Patients and family members are dependent on you for the care of their loved ones and therefore they are vulnerable in your care. Respect this vulnerability and do not violate it in any way. Trust on both sides of the relationship is key.

Case study 1

Baby Joe, diagnosed with a life-limiting congenital condition at 20 weeks, is born at 29 weeks gestation via an elective Caesarean section due to his mother having a sudden placental abruption in a rural hospital. His Apgar score at 1 and 5 minutes was 5/10 and then 2/10. Attempts to resuscitate him fail and he dies an hour later in the nursery. When his mother regains consciousness, she asks how he is doing and is told that he did not survive. She starts to cry loudly and says she does not believe you. She demands to be taken to the nursery to see her baby.

1. Is the mother’s initial reaction to be expected?

Yes, any perinatal loss will be devastating, even if the baby had a life-limiting congenital condition. It is important to recognise and acknowledge that her response is normal and to be expected.

2. As she did not have time to bond with Joe, will her grief be as intense?

Yes, her grieving would have already started when he was diagnosed at 20 weeks with a life-limiting condition. Her not seeing the baby before he died will not lessen her grief.

3. How can you best support her at this time?

She needs to be reassured that what she is feeling is normal and to be expected. Do not avoid her but rather say you are sorry for what has happened. Make yourself available to answer any questions and listen in a non-judgemental, caring way. Arrange for her to see and hold her baby (if she wants to), preferably in a private space. Check and get permission from her to contact other family members if she so wishes. Ask her if she would like someone to come and talk to her such as a pastor or counsellor.

4. What loss is likely to impact her the most during the bereavement period?

Bereavement is a period of time during which a person grieves and mourns a loss. When a baby dies it is the loss of all the hopes, dreams and the future they imagined for the baby, themselves and the family. It is important that you recognise and acknowledge the loss she may be experiencing.

5. What ongoing support will she need?

She should be offered follow-up appointments to meet with either the nurses or a doctor as these will provide opportunities to discuss her baby’s death, if she wants to, and assess her and her family’s wellbeing as well as look for signs of complicated grief. Other ways to support her can include providing information about any support groups in the area, providing brochures about the bereavement period or multi-media links for further information she may need.

6. Is the mother at risk of complicated grief?

The loss of a baby is a very traumatic experience for a parent/parents, therefore there will be an increased risk of her experiencing complicated grief. There will be other factors such as the adequacy of her social support system that may influence her grieving process and put her at an increased risk for complicated grief.

Case study 2

Parents are given the news that one of the twins they are expecting has an inherited genetic disorder and are informed that the baby is not likely to live very long after birth. The two older siblings, both boys aged 3 and 9 are very excited about the birth of their little brother and sister. The treating doctor has referred them to the perinatal palliative care team for further support as the parents are overwhelmed. The twins are born at 36 weeks but sadly the one twin with the inherited disorder dies an hour after delivery.

1. Why has the doctor referred the family to the perinatal palliative care team?

Any family whose baby is diagnosed with a life-limiting condition and is likely to die soon after birth can benefit from palliative care. Part of the continuum of care is supporting the family from the time of diagnosis, through the death and into the bereavement period. Palliative care supports the whole family and that includes the siblings and extended family.

2. What feelings are the parents most likely to be experiencing?

The parents are most likely to be experiencing mixed feelings of both joy and grief at the same time. Staff need to recognise that men and women may grieve differently and show equal support to both parents, ensuring that they feel safe to express their different feelings and emotions.

3. In what ways can you provide support to the parents at this stage?

Acknowledge that the family are grieving. Use empathetic words and phrases when talking to them and supporting them. Always acknowledge that the surviving baby was a twin. This can be acknowledged by using a symbol such as a butterfly above the mother’s bed and if the surviving twin is in the NICU the same symbol can be used on the cot or incubator. The parents will want to talk about the twin who has died so refer to their baby using her given name.

4. Will the siblings need to be supported?

Yes, all children grieve according to their developmental age and will need support. Being at home and cared for by others while the parents are preoccupied with the healthy and the dead baby will have a big impact on siblings and this impact often goes unnoticed.

5. What support do these siblings need?

They were very excited that they were going to have a brother and sister. It is important that they are told the truth about their sister’s death. This sharing needs to be done in a developmentally appropriate way.

6. Should they be allowed to meet and say goodbye to the twin who died?

Yes, they should be given the opportunity to meet their sister if they choose to. They should not be forced.

7. How can ongoing support be provided to the siblings?

Parents need to know that it is common for a change in behaviour and it is part of the grieving process. The siblings’ teachers should be informed of the situation. If grief support materials such as books are available, these can be given to the family. Memory-making activities should be encouraged. If bereavement support groups are available, the family should be encouraged to attend these together.

8. Should the family be referred for genetic counselling?

Yes, because the baby has an inherited genetic disorder it is important that they make an appointment to see a genetic counsellor to be educated and informed about the condition the twin was diagnosed with.

Case study 3

Mavis is a neonatal nurse working in a busy neonatal ICU. Because she is the only staff member who has a palliative care qualification, when a baby with a life-limiting condition is born she is the person who is allocated to take care of the baby and the family. She finds she is working a considerable amount of overtime as she does not want to abandon families when they need her. She confides in her unit manager that she feels exhausted and depressed and feels she is at risk of developing compassion fatigue.

1. Why do you think she says she may be developing compassion fatigue?

Caring for babies who are not expected to live long, and their family members, can have an emotional, physical, spiritual, behavioural and cognitive impact on how she copes. Added to her always being the nurse allocated to these babies, she is working overtime. Therefore, she is probably not debriefing enough at work or taking care of herself both at work and at home. With compassion fatigue, the carer has difficulty feeling empathy for her patients. This can be very distressing.

2. What strategies would she need to introduce to prevent herself from developing compassion fatigue?

She needs to recognise that she herself may be grieving and look for ways to manage her own grief both in the workplace and in her private life. She needs to recognise the importance of self-care and practice this daily. This will help her build up resilience to deal with the emotional and traumatic events she deals with on a daily basis. It is important that she sets boundaries for herself by not becoming overly involved with the families she works with as well as limiting the amount of overtime she works.