Interview with Dr Fauzia Paize
Perinatal palliative care (PPC) is a fairly new subspecialty within palliative care. What are the main ideas behind this new concept?
Dr Paize: Healthcare professionals working in antenatal and neonatal services are accustomed to providing babies and families with sophisticated expert care using high levels of technical skills, communication and knowledge. However, there is a growing need for them to provide a palliative care approach throughout the pathways, which means a shifting of emphasis, ensuring that the baby continues to receive intensive care but reducing the level of highly technical care. This is where perinatal palliative care comes into play: It is all about maximising your time as a family. It helps families to spend time with their baby, improve bonding and build memories, in a more home-like environment and with as little technology dependent care as possible. There is more emphasis on family-centred care to enable parents to create positive memories, for example by having time to hold their baby.
What are the specific questions and challenges when caring for dying babies before, during, and after birth, compared to caring for dying children and adults?
Dr Paize: First of all, although national frameworks and clinical pathways for palliative care after birth have been established, we still do not have a unified pathway guiding care for women and families. The uncertainty of prenatal diagnosis is another significant challenge. If a problem is detected before birth, there is the potential for discordance between those findings and the possibility of the affected organs being able to sustain life after birth. This leads to the need for parallel planning – hoping for the best whilst planning for the worst. Another difference to older dying children is that babies can deteriorate and die with great speed, much faster than older children or adults. This also highlights the importance of parallel planning for every eventuality so as to introduce effective and planned palliative care support for these babies and their families. The time parents can spend with their baby alive can be very short and therefore very precious – there is only one chance to get it right, so it is vital to create opportunities for parents to make and share memories of their baby.
In the neonatal setting, mothers are sometimes not fit enough to be transferred to a neonatal unit where care for the baby is to be taken place. Some women, such as those with pre-eclampsia, may be seriously ill themselves. In multiple births, there may be one or more sick babies to take care for, alongside babies who do not have a life-threatening condition. There may be queries about organ donation from the sick baby, something neonatology and the blood transfusion service are still not fully prepared for although they have happened successfully. A baby may die in utero, triggering off bereavement during an ongoing pregnancy.
Another point is, that there are different and often multiple teams and services involved in this particular area of healthcare. There are obstetricians, midwives, neonatal nurses, neonatologists, fetal medicine specialists, sometimes based in different hospitals, so there is a need for high levels of efficient, compassionate, accurate communication to prevent that parents need to repeat their story over and over again. When a newborn baby dies, the family’s grief can be lonely, with few people having met their baby that died very soon after birth. There can be a lack of appreciation of what has happened from their usual support circles. Only few people can understand what they have gone through or know what to say to provide comfort. Finally, we must not forget those pregnancies that are terminated because of significant physical problems of the baby. Those babies are often born alive and may have physical supportive needs if distressed, but families need emotional support following the loss of their baby.
In your view, what are the largest barriers for PPC and what are the best strategies to overcome these barriers?
Dr Paize: There are a lot of barriers to perinatal palliative care. We are a generation that thinks that a positive pregnancy test always leads to a baby and we do not expect babies to die. There is societal expectation that we always take our babies home, we go to a 12 week scan to see when our baby is due and we go to our 20 week scan to find out if we are having a boy or a girl. We do not expect that something could go wrong in pregnancy that can potentially lead us to not take our babies home or have a baby that has significant problems in the long term.
We as healthcare professionals see death as a failure, as we think our job is to diagnose illnesses, treat them and make people healthy. If this is something that we cannot do, we find that very difficult in our sphere of work. We also have to deal with a lack of scientific evidence compared to other areas of intensive care within neonatology. We need more adequate palliative care training and experience for providers, we also need more multidisciplinary trainings so that fetal medicine, midwives and neonatal practitioners can sit down and train together.
As a society, we should promote more discussions about the reality that babies can be very sick and can die. Model programs that show excellent standards of providing perinatal palliative care should be awarded and seen as lighthouse programmes for people to follow.
What is most important when communicating with affected parents?
Dr Paize: Families should be provided with value-neutral information about all options, including termination of pregnancy, continuation with palliative care or continuation of pregnancy with an active postnatal care plan. It is important to discuss openly parents’ priorities, hopes and fears, in order to facilitate shared decision making. It is also vital to talk about the most common eventualities in the process of pregnancy and delivery in general, and the uncertainties of each individual case. Establishing and maintaining trust is crucial in this evolving relationship, so continuity of care with the same clinicians is advised. Items that should be covered include deciding the mode and timing of delivery, monitoring during labour, resuscitation after birth, symptom management and the possibility of transitioning to a community setting if the baby shows signs that they may survive for longer than expected. Families may ask about organ or tissue donation and this should be supported if appropriate with involvement of the local specialist nurses for organ donation.
It is, however, important to know that decisions do not always need to be made at the time of the first meeting, as there is a lot of information to take in when a pregnancy has changed course. Plans can evolve over several meetings and should be formalised in a written advanced antenatal palliative care and birth plan. This plan should ideally be kept in the maternal hand held notes to make sure that information can be shared between fetal medicine, neonatal teams, children’s hospices, palliative care teams, referring centre labour ward and, community midwifery and general practice teams. It is a difficult but very important task to maintain high standards in communication and documentation with all parties at all time.
Families have to make tough ethical decisions sometimes, for example if they need to decide whether to withdraw a life-sustaining treatment. What is your approach to support the families in these extremely difficult moments?
Dr Paize: Families need emotional, spiritual and religious support in these situations, and we need to be mindful of the fact that they are going through something extremely difficult. We need to empower them to use their own support networks and provide support as long as we can. In difficult ethical decisions, it is important that we are honest and open with families, give them written information, connect them with people who have been in a similar situation, and always have our doors open. They should get all the support they need and we need to let them know that they are not alone in these difficult times.
The large majority of neonatal deaths still occur in the hospitals, how can we give parents the opportunity to be with their dying child, in the clinics or at home?
Dr Paize: It is vital to understand the local resources available to families. This will vary and it will be important to only offer what can be delivered in the local area, for example, what local hospice or palliative care teams are and are not able to offer. We need to be aware that taking a baby home with a life-limiting diagnosis, complex medical needs and equipment, can be a truly daunting task. Comprehensive discharge planning is crucial to support a seamless transition to home or to another place of care. The mother’s own care needs will need to be considered, but also the family will need to be prepared for the arrival of the sick sibling. Some hospitals can provide an outreach service which improves continuity of care between settings.
What role can children’s hospices play in this context?
Dr Paize: Children’s hospices working in partnership with local neonatal teams, fetal medicine units, community midwives and palliative care teams have been a revelation in the last 5 years of neonatal palliative care. In this partnership, they can emotionally support families throughout pregnancy and help in the transition to the hospice immediately after discharge from hospital. Families can visit the hospice before their baby is born to decide if this is the place they would like to spend time with their baby and extended family.
Children’s hospices can offer a home away from home setting, allowing families as much privacy or support as possible and providing family-led palliative and end-of-life care to babies with complex needs. They allow some normality in a supported environment, such as being able to sleep in the same room, being able to take the baby into the garden, pushing it in a pram, and spending time as a family. It allows parents to balance their expectations of parenthood and independence with the specialist palliative care. Children’s hospices also offer household services, so families can spend more time with their baby. They also are experienced in memory making, symptom control, supporting families at home as a step down from hospital for those babies that may not die imminently. Hospices also aid in funeral planning, registering the birth and death of their child, and give bereavement support to the extended family including siblings and grandparents.
How can healthcare professionals who work in PPC be compassionate partners for the families and still not be overwhelmed psychologically in these often devastating situations?
Dr Paize: Healthcare professionals sometimes find it difficult to ‘let go’ of the baby and family and may themselves need support. Following the baby’s death, staff may find it helpful to use a range of support methods such as debriefs or reflective practice. This can help to reduce their levels of stress, risk of burnout, compassion fatigue and increase their job satisfaction. It can be helpful to provide psychological support for palliative care staff in neonatal units, e.g. by a children’s palliative care team.
Dr Fauzia Paize is a Consultant Neonatologist at the Liverpool Women’s Hospital NHS Foundation Trust in the UK. She is also the mother of Jacob who was stillborn at 23 weeks. Having felt the severe pain of baby loss she is committed to improving perinatal palliative, end-of-life and bereavement care. She has implemented a North West strategy to integrate children’s hospices with neonatal units to ensure smoother patient and family journeys. She was the consultant neonatologist for the NICE guideline “End-of-life care for infants, children and young people”, the “Perinatal Pathway for Babies with Palliative Care Needs – Together for Short Lives” and she is one of the authors on the 2016 APPM Master Formulary. She is passionate about supporting parents and staff through the traumas of neonatal intensive care and has led several initiatives in neonatal units trying to make the journey as tolerable as possible for all involved.