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Palliative and end-of-life care for newborns and their family/whānau is an integral component of perinatal care.1,4 Generally, perinatal palliative care should be considered in the following circumstances:
It is important for all involved in care to present a united front for families.5
How things evolve for the family is going to impact them for the rest of their lives.6
Perinatal palliative care is a right for all babies with a life-threatening or life-limiting illness and their parents and families/whānau.7-9 However, the timing and approach to perinatal palliative care planning can be challenging because information about a baby’s diagnosis and prognosis is often complex and uncertain.10 Timing of referral to perinatal palliative care depends on diagnosis and decision making of parents and healthcare professionals. The decision to take a palliative approach to perinatal care needs to be jointly made by the parents, any chosen support people (for example family/whānau), and the multidisciplinary team of healthcare professionals supporting the parents and the baby.4,6
Palliative care providers need to partner with parents and families/whānau to develop individualised, seamless, and compassionate care plans that address the physical, emotional, and cultural needs of the baby, parents, and family/whānau. Continuity of care and a central coordinating contact is important.5 Bereaved parents report benefit in having a perinatal palliative care coordinator (often a midwife or nurse) who is able to coordinate care between family/whānau and healthcare professionals and team members.11 All team members and family/whānau members should be able to contact the care coordinator who serves as a single key point of contact to ensure care is seamless.1,12 Team members who are able to respond to the family’s social and emotional needs (for example social workers; psychologists; cultural, religious, and spiritual advisors) should be integrated in the palliative care team to support and provide continuity of services throughout the perinatal period,13 including offering information and support for practical considerations (such as accommodation, parking, family/whānau leave benefits). Parents and family/whānau should be offered options for and access to community-based resources, including opportunities to talk with other parents who may have had similar experiences.1
Care may be planned and started before birth or may be initiated for newborns after birth. Perinatal palliative care programs generally include the following:14-16
“Avoid having families need to tell their story over and over; consolidate and provide continuity.”5
Discussions with parents and family/whānau about palliative care for their baby are often challenging for healthcare professionals.17 All communication should be clear, sensitive, honest and timely.18 Medical terms should be explained in lay language and care should be taken with choice of words, and terms such as ‘withdrawal of treatment’ or ‘withdrawal of care’ should be avoided (‘palliative’ or ‘comfort care’ are better alternatives).
Good communication involves finding the right words and the right approach with attention to what is said and how.
Above all, parents need to be assured that they and their baby have the support of the care team and that all will be done to ensure their baby’s comfort and care.1 Vitally important is that parents are encouraged to express their values, goals, wishes, and fears, and that these are incorporated in care planning.19 This includes the ability to reflect on their choices along the care pathway and change their mind if necessary.
Effective and compassionate communication respects individual needs and values and promotes a parent-centred decision-making framework. Healthcare professionals can provide individualised care by acknowledging parents as the primary carers and as equal partners in decision making with the multidisciplinary team.18,12 It is important to acknowledge the complexity of decisions being faced by parents at a highly emotional time. Uncertainty of prognosis, ethical and legal aspects may add to this complexity. It is important that parents and family/whānau members are provided with sensitive parent-centred information and that they are given time to process that information and opportunities to discuss with other family or support persons and to ask follow-up questions of their care team. Different decision-making styles need to be acknowledged. Conflicts between parents and between parents and the healthcare team members may arise and parents should be prepared for this possibility. Discussion should occur ahead of time about procedures for managing any such differences. A senior and appropriately experienced member of the team should lead these discussions.1
Palliative Care Australia provides the following resources to support healthcare professionals undertaking difficult conversations with parents and families/whānau and parent-facing resources to support families.
Creating a culturally responsive environment requires understanding that communication and consultation is crucial in empowering families to voice their cultural, religious, and spiritual needs.15,20,21 A carefully developed perinatal palliative care plan can help to highlight the religious, cultural and spiritual needs of parents and family/whānau during the birth.22 Healthcare professionals should invite parents and family/whānau to involve their cultural advisors or spiritual Elders across the continuum of perinatal palliative care to ensure appropriate rituals and traditions are available to them and their baby. A qualified interpreter should be made available if needed.
Consensus-based recommendation 4.1
When a life-limiting perinatal condition is diagnosed in pregnancy, arrange a formal consultation with parents and family/whānau and the lead healthcare professionals to openly discuss the diagnosis and available options and begin to develop a detailed palliative care plan. A follow-up meeting should be held once parents have had the opportunity to consider and discuss with others the information received.
Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine