Counselling a family who are facing an imminent preterm birth is a complex and extremely delicate duty. The approach to antenatal counselling is heterogenous, varying by country, medical centre, and physician. The general approach is prognosis-based that considers the gestational age at birth, estimated fetal weight, gender, exposure to antenatal corticosteroids, plurality, place of birth, antenatal complications, and presence of underlying fetal anomalies. This article is based on statistical evidence from the Australian and New Zealand Neonatal Network (ANZNN) annual reports and Safer Care Victoria prematurity guidelines. We’ll propose a framework approaching antenatal counselling and discussing strategies to effectively communicate with parents to best help them in the decision-making process.
Zone of Parental Discretion (ZPD)
In Victoria, babies born between 22+0 and 23+6 may fall within the zone of parental discretion (ZPD) where it may be ethically legitimate for parental wishes to determine the level of care provided. Parental decisions may not be aligned with the treating team as long as the decision does not cause significant harm to the child. Shared decision-making is a fundamental principle and should be individualized based on parental preference, individual risk factors and resources available for active resuscitation. Any baby born before 22-weeks gestation is considered outside ZPD as the risk of them surviving with a severe disability is >90% thus should receive palliative care, even if the decision is not in line with parental wishes. Babies born at or after 24 weeks gestation usually receive active management despite parental wishes unless significant adverse risk factors are present.
The primary considerations in deciding active management in ZPD are the mortality and morbidity risk for the baby, alongside a review of gestational age and other risk factors affecting fetal and maternal health. For example, suppose there is a significant risk of dying or surviving with severe disabilities that constitutes harm. In that case, active resuscitation is not considered in the baby’s best interest.
The figure below taken from the Safer Care Victoria Extreme Prematurity Guidelines best depicts the shared decision-making continuum:
In cases where there is significant medical uncertainty, the ZPD will be the widest. Antenatal counselling should be balanced and least directive AND recognise and incorporate the parents’ values and wishes.
Factors Affecting Neonatal Outcome
Many factors affect neonatal outcomes. These include:
Gestational Age
Prolonging a delivery even by a day, more so a week increases the odds of survival as well as reduces the risk of disability. Even a relatively small discrepancy in gestational age can have significant implications on survival and neurodevelopmental ability.
Estimated Fetal Weight
Fetal weight is estimated using ultrasonographic measurements and standard reference tables incorporating fetal growth parameters, i.e. biparietal diameter, femur length, abdominal circumference and head circumference. It is important to know that this is just an estimate but is helpful for prognostication. The table below depicts the latest statistical evidence on birthweight centiles based on gender and gestational age.
Sex
Females born prematurely have better outcomes than males.
Plurality
Singletons born prematurely have better outcomes than multips.
Antenatal Corticosteroids (ANCS)
ANCS have been proven to accelerate fetal lung development and reduce neonatal morbidity and mortality. ANCS facilitates the induction of proteins and enzymes, including increased tissue and alveolar surfactant production. ANCS use is not only associated with a reduction in respiratory distress syndrome and need for respiratory support but also necrotising enterocolitis, intensive care admissions, systemic infections in the first 48 hours of life and intraventricular haemorrhage (IVH). Antenatal corticosteroids should be offered to women >= 22 weeks gestational age when early intensive care is an option. The timing of steroid administration can be a challenge because the chance of delivering extremely preterm is difficult to estimate and maximal efficacy is reached within 7 days of the last dose.
Place of Birth
Rates of neonatal mortality and morbidity decrease if extreme preterm babies are born in tertiary care centres. In-utero transfers to tertiary neonatal centres improve maternal care and also offers counselling from maternofetal specialists and neonatologists. When transfers are not possible and delivery is imminent, management needs to be tailored to the availability of resources as well as the limitations of setting and local expertise.
Presence of congenital anomaly
The outcome or prognosis associated with significant congenital anomaly may be worsened with extreme prematurity.
Maternal Complications
Maternal health directly impacts fetal well-being. The fetus is relying on nutrients provided via the placenta as well as a healthy environment to grow. Some maternal complications lead to preterm labour, including cervical or placental insufficiency, uncontrolled type 2 diabetes, pre-eclampsia, and perinatal infections.
Factors To Consider in Decision Making
When considering options around the management of a preterm birth, we need to consider survival, the risk of neurodevelopmental disability and quality of life for both the child and the family. When counselling expectant parents using statistical data, it is important to explain the limitations of current data clearly and truthfully.
Survival
The most relevant data for expectant parents in Australia are population-specific (i.e. Australian) and ideally based on local institution rates. Based on Australian and New Zealand Neonatal Network 2020 Annual Report, survival has been tabulated according to gestational age at birth as well as birth weight. 53.6% of babies born <24 weeks GA are surviving. This increases to >90% if they were born at or after 26 weeks GA. On the other hand, 53.4% of babies born with a birth weight <500g survive. This increases to >90% if they were heavier than 800g or more. The ANZNN website (https://www.anznn.net) provides up-to-date data.
Neurodevelopmental Disability (NDD)
Survival of extremely preterm live-born babies has increased with advancements in technology and proactive obstetric and neonatal management. However, with increased survival, the question that comes to mind is the long-term outlook, especially in terms of neurodevelopmental ability such as cognitive impairment, or cerebral palsy. Vision and hearing deficits are less common. Functional impairment is defined by physical or neurodevelopmental impairment and graded as mild, moderate, or severe according to the following classification: mild (GMFCS level 1 cerebral palsy, mild language, cognitive or motor delay); moderate (GMFCS level 2 to 3 cerebral palsy, deafness requiring amplification, moderate language, cognitive or motor delay); severe (GMFCS level 4 to 5 cerebral palsy, blindness, or severe language, cognitive or motor delay). While there was no statistically significant difference in the risk for severe neurodevelopmental disability by the week of gestational age, there is a statistically significant reduction in the risk of moderate-to-severe disability with each increasing week of age. Based on Australian and New Zealand Neonatal Network 2020 Annual Report, the risk of moderate-to-severe disability drops by 7% each week until it reaches a plateau from 27 weeks.
Quality of Life
Decision-making often occurs in an environment of distress, prognostic uncertainty, and an attempt to evaluate the baby’s best interests. In determining ‘best interest’, survival in qualitative terms (how will they live?) rather than merely in quantitative terms (what are their chances of survival) should also be considered. Think about…
- Will the child be able to survive without permanent life support?
- Will the child be able to live outside the hospital?
- Will the child be capable of establishing relationships with others?
- Will the child be likely to experience pleasure from life?
Other considerations include…
- Healthcare professionals are reported to underestimate survival and overestimate likely disabilities.
- A quality of life which could be considered intolerable to an able-bodied person would not necessarily be unacceptable to a child who has been born with a disability.
- Impairment is not incompatible with a life of quality and people with severe impairment describe a life of high quality which they are happy to be living.
- Quality of life exists on a continuum and the family vary regarding where they would choose death/no resuscitation on this continuum.
- Many people would perceive a loss of awareness and inability to interact as an intolerable burden not only for the future child but also for the family.
- The quality of the life is significantly affected by the family’s ability to provide an environment within which he or she can achieve his or her full potential.
Effective Communication with Families
Open and honest communication between the family and healthcare team is the cornerstone of ethical decision-making and care provision. Ideally, discussions are led by clinicians experienced in the care of extremely premature babies. Acknowledging prognostic uncertainty is an essential component of this communication. Communication should, ideally, commence in the antenatal period.
Patient and family-centred care are grounded in mutually beneficial partnerships among healthcare providers, patients, and families. The core concepts are:
Respect and dignity
Healthcare practitioners listen to and honour patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care.
Information and sharing
Healthcare practitioners communicate and share complete and unbiased information with patients and families in affirming and helpful ways. Patients and families receive timely, complete, and accurate information to participate in care and decision-making effectively.
Participation
Patients and families are encouraged and supported to participate in care and decision-making at the level they choose.
Collaboration and shared decision-making
Collaborative decision-making allows different parties to present their views about what they hold these interests to be and makes it possible for the family to raise objections to team. A multidisciplinary approach is recommended to ensure a range of concerns and areas of clinical care are represented, support continuity of care/carer in the transition through antenatal, intrapartum, and neonatal care provision and where possible, facilitate regular meetings to discuss the goals of care and to establish rapport and build trust with the family.
A Framework for Antenatal Counselling
Preparing
- Ascertain any available information that may influence counselling, including:
- maternal history (including past obstetric and medical history)
- fetal diagnoses or risk factors
- ultrasound scans or results of other investigations
- perspectives or treatment plans from other members of the treating team, e.g., obstetrics
- Assess and acknowledge the degree of prognostic certainty/uncertainty.
- Begin counselling at the earliest possible opportunity. Information may need to be revisited or revised but should not be delayed.
- Hold conversations in quiet, private, and physically comfortable spaces and involve both parents and/or support persons at the same time wherever possible.
- Assess parental knowledge, expectations, and psychological capacity for discussions.
- Use translation services if either parent requires.
- Consider the family’s cultural background that can affect clinician and parental communication styles and expectations and perspectives of viability and palliative care.
Counselling
Begin by promoting parental understanding
Prepare the family for the seriousness of the discussion. Ask about their understanding of the situation. Then, provide summarise in your own words.
Conveying complex information
Provide complete and unbiased information appropriate for the family’s level of understanding. Written information or pre-recorded material may help as the family may forget or be unable to comprehend what they have been told at the time.
Prognosis
Convey a compassionate but realistic assessment of the outlook with the most accurate prognostic morbidity and mortality data available. Ensure the family is aware that your ability to give accurate short- and long-term prognosis is limited and is impacted by many things that may not be obvious before the birth.
Resuscitation
Explain the flow of events that could be expected, and team members present at delivery including resuscitation and admission to NICU to better prepare the family. Advise the family that if their decision is not to initiate resuscitation, or resuscitation is unsuccessful, palliative care will be provided.
Clinical Course
Offer information about events that may impact clinical course, future decisions, and outcomes i.e., preterm lung disease and ventilatory support, sepsis, IVH and cranial surveillance, feeding, necrotising enterocolitis, anaemia and blood product transfusions, retinopathy of prematurity and eye screening. Discuss the possibility of the redirection of care if the situation changes.
Expectations for care provision
Discuss/provide information on expected care as appropriate (e.g. appearance or condition of the baby, likely procedures/investigations, when the family will be able to hold the baby, expected discharge). Provide a tour of the nursery if applicable.
Continuing Antenatal Review
When communication is established in the antenatal period, ensure arrangements for review and follow-up are established.
Emotional Wellbeing
Acknowledge the range of emotions that may be experienced and offer a referral for psychological support.
Making the decision
Provide family time to digest the information before making decisions. Find out what the parents deem most important when making decisions (e.g. best interests, pain and suffering, giving their baby a fighting chance, faith in a higher power, likelihood of disability). These decisions should be shared between the treating team and the parents. This can reduce parental grief when involved in end-of-life care. The concept of ‘hope’ can be respected whilst exploring both life-sustaining treatment and palliative care. Parents need to feel reassured that the healthcare team will support them whether they choose active management or palliative care. Parents may worry that they will be ‘abandoned’ by the healthcare team if they choose palliative care.
References
Chow SSW, Creighton P, Chambers GM and Lui K (2022) Report of the Australian and New Zealand Neonatal Network 2020. Sydney: ANZNN.
Joseph FA, Hyett JA, Schluter PJ, McLennan A, Gordon A, Chambers GM, Hilder L, Choi SKY and Vries B (2020) ‘New Australian Birthweight Centiles’, The Medical Journal of Australia, 213(2):79-85, doi: 10.5694/mja2.50676
Lemyre B and Moore G (2017) ‘Counselling and management for anticipated extremely preterm birth’, Paediatrics & Child Health, 22(6), 334–341, doi: 10.1093/pch/pxx058
Queensland Clinical Guidelines (2020) Perinatal care of the extremely preterm baby, Queensland Health, Accessed 27 July 2022. http://www.health.qld.gov.au/qcg
Safer Care Victoria (2021) Extreme Prematurity Guideline: Clinical Guidance, Victorian Government, Access 27 July 2022. https://www.safercare.vic.gov.au/sites/default/files/2020-12/20201222%20Extreme%20Prematurity%20Guideline_FINAL.pdf
