5 Key considerations in perinatal palliative care

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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.

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:

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:

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:

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:

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.

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.
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:

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.

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:

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:

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:

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:

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

There are a number of things that will help:

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.

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:

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:

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:

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.

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