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Keywords:

  • clinical framework;
  • consensus;
  • counselling;
  • decision-making;
  • extreme prematurity

Abstract

  1. Top of page
  2. Abstract
  3. Key Points
  4. Survival and Outcome – Changes over 30 years
  5. International Perspectives
  6. Collaborative Framework for Clinical Practice
  7. Summary
  8. References

Abstract:  A multidisciplinary workshop with parent/consumer involvement was held to determine a consensus in the difficult arena of perinatal care of women and babies at the borderlines of viability. Interactive forums produced consensus statements following an extensive consultation process. A grey zone between 230 and 256 weeks of gestation was identified and agreed upon. In this grey zone, while there was an increasing obligation to treat, it was acceptable not to initiate intensive care following appropriate counselling with parents. Important areas identified before birth, were continuing communication between the perinatal team and parents, a review of choice with continued counselling, decision support and empathy. The process must be transparent, open and honest, using the most relevant up to date outcome data in a collaborative framework.

In 2005 the New South Wales (NSW) and Australian Capital Territory (ACT) Consensus Workshop on Perinatal Care at the Borderlines of Viability was held involving perinatal care providers and consumers. The aim was to review and revise guidelines for the care of babies born at the borderlines of viability. Paediatricians and the newborn care team are an integral part of a collaborative team in counselling prospective parents and the management of the extremely premature infant. This paper presents the workshop outcome as a framework for clinical care with a focus on communication and decision support from a paediatric perspective.

Key Points

  1. Top of page
  2. Abstract
  3. Key Points
  4. Survival and Outcome – Changes over 30 years
  5. International Perspectives
  6. Collaborative Framework for Clinical Practice
  7. Summary
  8. References
  • 1
    Consensus of a grey zone between 23 and 25 weeks gestation has been agreed upon in a New South Wales ad Australian Capital Territory multidisciplinary workshop with consumers’ and parents’ participation and extended consultations.
  • 2
    Decision-making for babies born in this grey zone is a collaborative process combining the knowledge of the perinatal team and the wishes of parents.
  • 3
    The management plans for these infants should be formulated before birth with paediatric/neonatal involvement in a clinical framework to provide decision support, review and empathy.

Survival and Outcome – Changes over 30 years

  1. Top of page
  2. Abstract
  3. Key Points
  4. Survival and Outcome – Changes over 30 years
  5. International Perspectives
  6. Collaborative Framework for Clinical Practice
  7. Summary
  8. References

In the last three decades two interventions have led to the increased survival of neonates at the borderlines of viability. The widespread use of antenatal steroids and surfactant, in the early 1990s, has meant that in the short term improved survival has occurred at gestations above 23 weeks.1 However, survival outcome is no longer the principal marker of success. Long-term neurodevelopmental outcome has become the most important indicator of successful intervention for infants born extremely premature. The issue of whether it is wise, loving or kind to treat all babies, continues to be questioned by the medical fraternity, parents and the community.2,3

International Perspectives

  1. Top of page
  2. Abstract
  3. Key Points
  4. Survival and Outcome – Changes over 30 years
  5. International Perspectives
  6. Collaborative Framework for Clinical Practice
  7. Summary
  8. References

Consideration of these factors has been taken into account in guidelines that have been suggested by various international perinatal groups. In 1994 the FIGO Committee recommended that non-initiation of resuscitation of infants less than 25 completed weeks gestation was acceptable practice.4 Canadian and American groups have provided similar guidelines.5–7 the Netherlands have been stricter in their guidelines and have suggested that no infant less than 25 completed weeks gestation should have intensive care initiated.8

Previous workshops have been held by NSW and ACT perinatal care providers in 1984, 1989 and 1998. The workshops concluded that a gestational age limits existed within which, after considered discussion between parents and specialist caregivers, it would be acceptable not to initiate resuscitation and intensive care.

A full description of the 2005 NSW and ACT Consensus Workshop has been published.9 The following constitute the consensus statements produced at this workshop:

Gestational grey zone

  • 1
    Notwithstanding the complexity of maternal, obstetric and other clinical factors, the grey zone appears to be between 230 and 256 weeks.
  • 2
    Parental wishes and on-site assessments such as condition at birth, place of birth (i.e. tertiary hospital) and presence of anomalies would influence the decision to offer resuscitation and intensive care.
  • 3
    Withdrawal of intensive care in infants born within this grey zone is influenced primarily by occurrence of neurological complications, in comparison to illnesses where prognoses are not so clear.

Managing the grey zone

Within this gestational age range when gestation is known with reasonable certainty, the parents’ involvement in the decision-making process during pre-birth counselling or subsequent management is mandatory. The consensus statements in regard to initiation of resuscitation and treatment at varying gestations are summarised in Table 1.

Table 1.  Consensus statements on management within the gestational grey zone
  1. ACT, Australian Capital Territory; NICU, neonatal intensive care unit; NSW, New South Wales.

• In an otherwise normal infant before 23 weeks, the prospect of survival is minimal and the risk of major morbidity is so high, that initiation of resuscitation is not appropriate. Maternal transfer to a tertiary centre for fetal reasons may not be justified.
• At 23 weeks, active treatment may be discussed, but would be discouraged in NSW/ACT NICUs.
• In an otherwise normal infant between 230 and 256 weeks gestation, there is an increasing obligation to treat; however, it is acceptable medical practice not to initiate intensive care if parents so wish, following appropriate counselling.
• At 240−6 weeks, antenatal transfer to a tertiary centre for fetal reasons is indicated. The option of non-initiation of intensive care and/or resuscitation should be offered.
• At 25−6 weeks, active treatment is usually offered but the option of non-initiation of intensive care/resuscitation particularly in the presence of adverse fetal factors; such as twin-to-twin transfusion, intrauterine growth restriction or chorioamnionitis should also be discussed.
• In an otherwise normal infant at 26 weeks and above, the obligation to treat is very high and should generally be initiated, except under exceptional circumstances.

Furthermore, the Workshop was extended to provide recommendations for the clinicians to deal with the decisions arrived by the parents after counselling.

Where the family has opted for non-intervention at 230−256 weeks gestation

  • 1
    All hospitals should have guidelines for communication with parents in the situation where the family has opted for non-intervention.
  • 2
    Counselling should be done by or at least in consultation with senior clinical staff.
  • 3
    If in a non-tertiary centre, access to senior staff in a tertiary centre for consultation should be available and should take place prior to delivery.
  • 4
    Clinical staff should be well versed in preparing parents for palliative care of their infant. This may include information for parents regarding the likely appearance of the infant, the likelihood of breathing and gasping after birth.
  • 5
    Appropriate support for the grieving process should be made available and co-ordinated including appropriate infant dressing, cuddles by parents, mementos’ preparation and discussion regarding post-mortem.

Where the family has opted for active intervention:

  • 1
    If at this gestation, initiation is undertaken, meetings with families should be held at appropriate intervals during the first week, or after any major complications, to discuss whether ongoing intensive care is appropriate.
  • 2
    Clinical staff should be aware of the possibility of parents’ decision uncertainty at the time of a live birth and the need to individualise a management plan to deal with such changes.

Collaborative Framework for Clinical Practice

  1. Top of page
  2. Abstract
  3. Key Points
  4. Survival and Outcome – Changes over 30 years
  5. International Perspectives
  6. Collaborative Framework for Clinical Practice
  7. Summary
  8. References

From the workshops, hypothetical scenarios and discussions, communication was the most important factor identified by both perinatal care providers and consumers. Perinatal care providers should have the ability to listen as well as speak. The process must be transparent, honest and open.

Involvement of the paediatric/neonatal team before birth

The goal for decision-making for babies born in the grey zone is a collaborative process that combines the knowledge of the multidisciplinary perinatal team with the wishes of the parents. In many circumstances there is time for constructive and informative discussions to occur which will allow decisions to be made prior to delivery, providing the caregivers and parents with accepted management plans. This requires a pre-emptive approach to likely premature delivery and recognition of a team approach to perinatal care. Tools that assist these conversations with parents in NSW and ACT include the ‘Outcome for Premature Babies – An information booklet for parents’ produced by the NSW Pregnancy and Newborn Services Network10 along with other parental information packages provided at individual perinatal centres or referral hospitals.

If a decision is not possible prior to birth because of rapid escalation of events, resuscitation may need to be initiated with an assessment of continuing intensive care made with parents following communication of likely outcomes. Birth in a non-tertiary centre, the presence of adverse fetal factors and the presence of serious congenital anomalies are factors which may influence non-initiation of resuscitation at the time of birth. Parents should be informed of these factors accordingly.

Information for perinatal team members and parents

Clinicians in regional centres should have ready access to consultation and support from a tertiary perinatal centre. Communication should be simple, factual and consistent within the perinatal team. Information provided to parents should utilise local outcome data. Counselling should include information about the neonatal course and childhood disabilities that may be encountered. This is important, as parents are more in favour of intervening to save a baby irrespective of weight or condition than are professionals.11 In acting in the best interests of their baby, parents need to understand what interventions will mean for their baby so that they do not prolong the baby’s dying process with false hope.

Decision support and empathy

Making the decision to forego, commence or withdraw medical intervention for extremely premature babies is always emotional for parents. Parents need to continue to be supported with their decision, whichever choice they have made. If following counselling parents choose to take on likelihood of lifelong care of their baby despite expectations for a poor outcome, this decision should be respected and supports provided to the parents both emotionally and for the long-term physical requirements of their child. In acting in the best interests of the family, perinatal care providers should recognise that parents (and survivors) often have a more positive view of the survivor’s quality of life and that mild to moderate disabilities do not preclude the potential for a relatively happy and productive life.12

In the opposite circumstance where parents have chosen not to initiate or withdraw intensive care, support for their bereavement process should be provided, not only in the short term but the long-term as well. Any perceptions of guilt on behalf of the parents for their decision should be avoided. In both cases, the support of social workers and psychologists is essential to help prevent depression, anxiety and post-traumatic stress in parents who have experienced an extremely premature birth. The family’s general practitioner is an ongoing provider of support, monitoring and access to other services. Hospital staff should liaise appropriately with the family doctor in order to ensure optimal ongoing management.

Summary

  1. Top of page
  2. Abstract
  3. Key Points
  4. Survival and Outcome – Changes over 30 years
  5. International Perspectives
  6. Collaborative Framework for Clinical Practice
  7. Summary
  8. References

Management plans should be formulated after agreement between parents and clinicians following appropriate counselling. Outcome considerations should be based on the most relevant information available while recognising that even with the most sophisticated technology it is not possible to predict with certainty the degree of impairment in an individual baby. The concept of a grey zone was acknowledged as clinically more practical and relevant to perinatal care than cut-off limits. The best interests of the infant must be considered within the context of the obstetric and medical history, the family environment and the parents’ wishes. It is envisaged that these management guidelines will aid communication and assist parents and clinicians in the care of these families and their babies.

References

  1. Top of page
  2. Abstract
  3. Key Points
  4. Survival and Outcome – Changes over 30 years
  5. International Perspectives
  6. Collaborative Framework for Clinical Practice
  7. Summary
  8. References
  • 1
    Louis JM, Ehrenberg HM, Collin MF, Mercer BM. Perinatal intervention and neonatal outcomes near the limit of viability. Am. J. Obstet. Gynecol. 2004; 191: 1398402.
  • 2
    Murakas J, Marshall P, Tomich P, Myers T, Gianopoulos J, Thomas D. Neonatal viability in the 1990’s: held hostage by technology. Camb. Q. Healthc. Ethics 1999; 8: 16070.
  • 3
    Harrison H. The messenger case. J. Perinatol. 1996; 16: 299301.
  • 4
    FIGO. Recommendations on Ethical Issues in Obstetrics and Gynaecology by the FIGO Committee for the Study of Ethical Aspects of Human Reproduction. Ethical Aspects in the Management of Newborns at the Threshold of Viability. London: FIGO, 1994; 357.
  • 5
    Fetus and Newborn Committee, Canadian Paediatric Society and Maternal-Fetal Medicine Committee, Society of Obstetrics and Gynaecologists of Canada. Management of women with threatened birth of an infant of extremely low gestational age. CMAJ 1994; 151: 54553.
  • 6
    American Academy of Pediatrics – MacDonald H & Committee on Fetus and Newborn. Perinatal care at the threshold of viability. Pediatrics 2002; 110: 10247.
  • 7
    American College of Obstetricians and Gynecologists. Perinatal care at the threshold of viability. ACOG practice bulletin 38. Obstet. Gynecol. 2002; 100: 61724.
  • 8
    Nederlandse Vereniging voor Kindergeneeskunde. Doen of Laten? Grenzen van het medisch handelen in de neonatologie. Utrecht: Dutch Paediatric Association, 1992.
  • 9
    Lui K, Bajuk B, Foster K et al. Perinatal care at the borderlines of viability: a consensus statement based on a NSW and ACT consensus workshop. Med. J. Aust. 185: 495500.
  • 10
    NSW Pregnancy and Newborn Services Network. Outcomes for Premature Babies: An Information Booklet for Parents. Sydney: NSW Pregnancy and Newborn Services Network, 2006. Available from: http://www.psn.org.au/images/stories/outcomesprematurebabies.pdf[accessed October 2006].
  • 11
    Streiner D, Saigal S, Burrows E, Stoskopf B, Rosenbaum P. Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics 2001; 108: 1527.
  • 12
    Saigal S. Perception of health status and quality of life of extremely low-birth weight survivors. The consumer, the provider, and the child. Clin. Perinatol. 2000; 27: 40319.