Supporting both lives through perinatal and neonatal palliative care

Please note: This article discusses neonatal death, and perinatal palliative care, including the experiences of parents whose babies died shortly after birth. Some readers may find the content emotionally difficult. 

 “They treated her as if she was the most important person in the world. . . .”

(Quote from a mother whose baby died in neonatal care).  

The Healthcare for Both Lives declaration affirms the ethical and professional responsibility to care for and treat both lives in pregnancy with compassion, respect, and integrity. This commitment extends not only to supporting healthy pregnancies, but also to situations where a child’s life is expected to be very short. Perinatal and neonatal palliative care offers a profoundly practical expression of this principle, seeking the best comfort and quality of life for a baby, however brief his or her life may be, while also providing holistic support for parents and families.  

The majority of child deaths occur in the first 28 days of life i.e. in the neonatal period. Implementation of neonatal palliative care programs brings benefits to both parents and children. In general this involves increased use of pain relief for babies in neonatal intensive care units, reduced maternal stress, increased parental involvement in their babies’ care, and increased parental presence at the end of life. 

Supporting families and little ones who are likely to live only a short life is challenging for all involved, including healthcare professionals. At times, this support can be needed for months, such as when a child is diagnosed with a life-limiting condition in utero. Other times, a baby may unexpectedly face a sudden, extremely pre-term birth and its concomitant challenges, or sudden illness and an unexpected early death. In all of these situations, the principles of neonatal palliative care can help guide thoughtful, compassionate practice. 

This article considers how healthcare professionals might support families through these challenges, particularly in a neonatal palliative care setting.  

Seeing the baby as a patient 

Firstly, we can continue to see and care for the baby as a patient, not merely as a diagnosis (“bed 5, bronchopulmonary dysplasia”). We must emphasise that this is a young child needing our care. One concrete way we can do this is through our language: we can refer to our patient by his or her name. If the child is as yet unnamed, we can use humanising, gentle language, perhaps taking a lead from the parents. These small choices can remind us as healthcare professionals who our support is focused on, and can help show parents that we see and appreciate their little one.  

Supporting parents and families 

Part of recognising a baby as our patient, is recognising his or her family and cultural context. Parents are central participants in neonatal palliative care. Wherever possible, we should avoid rushing parents, particularly when they have challenging decisions to make. Even when decisions must necessarily be made quickly, we can create spaces for open communication, maximising parents’ time to reflect and ask questions. As healthcare professionals, we should remain attentive to the varied ways in which families process grief, and support the differing priorities they may hold during this time, such as privacy or time with extended family.  

Stages of care 

Support for families and babies may span several stages: before birth; at birth; after birth/end-of-life; and, after death. 

Before birth 

Before birth, obstetric and neonatal teams in particular can help parents to understand a child’s diagnosis and can explore parental expectations and hopes. In cases where a family faces a range of potential outcomes, parallel planning may involve preparing for potential end-of-life care, or more survival-focused care. Discussions may include early formal involvement of palliative care teams and advance care planning. This may include discussing the planned place of delivery, and discussions around discharge hopes or end-of-life care (e.g. hospital or hospice care). There may be chances to discuss plans for lactation suppression or breastmilk donation.  Ceilings of care can be discussed in advance, helping to avoid burdensome interventions that might not benefit the baby, and may hinder family priorities. Such discussions and decisions can help families be more prepared and supported in the lead-up to birth. Close collaboration between the multidisciplinary team and the family is highly beneficial. 

At birth, where a life-limiting condition is anticipated, care can focus on a calm environment, allowing parents time to hold their baby, if they wish, and focus on memory-making. There are many charities such as BLISS, that offer additional support.

After birth  

After birth, families may have different wishes or priorities that can be explored. Many families appreciate the opportunity for memory-making e.g. family photographs or small handprints can be made. Others may hope to spend time just holding their child. For parents whose baby has spent some time already in neonatal intensive care, the transition to palliative care may allow them more opportunities to ‘parent’ their child – feeding, bathing, dressing them. Similarly, there may be siblings who need support and can be included in the life of their brother or sister. The importance of clear communication and enabling parental involvement is highlighted powerfully by one mother, who reflected on missed opportunities:  “I will never forget that I never got to feed or dress my son before he died! … When we were told we had to take life support away no one explained what was going to happen. We sent our parents away, they should have been involved we didn't realise they could be part of it! As no one explained. The nurses helped us bath our son because he was still under life support. Had they explained we would have asked them to leave and would have wanted to bath our son on our own! Also we would have wanted our parents to be able to hold their grandson!”

In contrast, when families are supported to spend time with and care for their baby, this can shape their experience more positively. Another parent describes: 

 “… they were so lovely with our daughter…They ensured we had as much time with her and holding her, as was possible…They treated her as if she was the most important person in the world, which of course, she is to us, and we did appreciate their approach.”

Alongside emotional and relational support, there are other practical considerations. These may include ensuring appropriate post-natal accommodation for mothers, advocating for free or discounted hospital parking for parents, or supporting families in accessing financial entitlements such as child benefits etc.

After death  

After death, some families may wish to spend more time with their baby, while others may not. Supporting families through their particular form of grief is an important part of our care. Where possible, we can offer families unhurried time together with their baby to say goodbye. Memory-making activities may also continue after death.  

Healthcare professionals can also provide practical support as families navigate making decisions about burial or cremation. Whilst we may not have all the answers to these questions, having an awareness of available resources, and knowing where to direct families for more support, can make a difference during an overwhelming time. Signposting families to bereavement support groups or relevant charities can be a great help. Some teams may also offer follow-up appointments, allowing families to reflect on what has happened and to ask questions that may not have arisen in the immediate aftermath of the death. 

Supporting healthcare professionals 

Finally, as healthcare professionals, we know that caring for babies around the time of their death, and supporting their families, is a privilege, but is also emotionally demanding. It is important to recognise the need for support in this work, including opportunities for reflection, debriefing, and time to decompress. 

Reflections 

Even where lives are very short, and cure is not possible, gentle care can always be offered. As one parent reflected:  “I think it also helped that Baby’s name was actually born alive, even though he only lived for 10-15 mins, it felt like we actually got a proper chance to say hello, and tell him how much we love him and to say goodbye. It also made everything seem more natural, and just feel lucky we got to see a glimpse of Baby’s name alive, …but he died in our arms, which if you are going to die, that’s the best place to die in the arms of the people who love you the most in the world.”¹⁵  Neonatal palliative care offers a holistic, life-affirming approach, consistent with the Healthcare for Both Lives declaration, to support babies and their families.   

Further resources 

• Bliss Charity ‘For babies born premature or sick’ www.bliss.org.uk   

• Together for Short Lives www.togetherforshortlives.org.uk  

• British Association of Perinatal Medicine framework: palliative care in perinatal medicine  https://www.bapm.org/resources/palliative-care-in-perinatal-medicine-framework