International conference «Actual approaches to the extremely preterm babies: International experience and Ukrainian realities» (Kyiv, Ukraine, March 5-6, 2013)

1. Ethical issues of extremely
preterm babies’ care:
the “grey zone” experiences
Kyiv, March 6th 2013
Dr Lucas Opitz
Anaesthesia and Intensive Care NICU - PICU
Centre Hospitalier Universitaire - GCS
Nice, France

2. What are ethics?
• “Nothing is either good or bad, but thinking makes
it so” (W. Shakespeare’s Hamlet)
• Branch of philosophy, addresses questions about
morality = concepts such as good and bad, right
and wrong, justice and virtue
• The study of the general nature of morals and of
the specific moral choices to be made by a person
or a profession

3. Are ethical choices in medicine easy to
define?
• Classical medical ethical convictions:
Preserve life - at any cost!
• Life or death = all or nothing = 100% or 0%
• At the threshold of viability in preterm
babies: “in-between status”: prognosis quod
valitudinem difficult to predict

4. Definition of ethical choices in medicine
• Beneficence: best interest of the patient (Salus aegroti suprema lex.)
• Non-maleficence: "first, do no harm" (primum non nocere).
• Autonomy: the patient has the right to refuse or choose his treatment.
(Voluntas aegroti suprema lex.)
• Justice: distribution of scarce health resources, decision of who gets
what treatment.
• Dignity: the patient (and the person treating the patient) have the right
to dignity.
• Truthfulness
• Honesty

5. Ethics in neonatology influenced by…
• Culture - religion - philosophy
• Sociology - society
• Individual convictions
• Cost
• Fears, dilemmas, taboos
• Juridical backgrounds
Singh M. Ethical and social issues in the care of the newborn. Indian J Pediatr. May 2003;70(5):417-20

6. Ethics in neonatology
- We touch the most profound interface between
materialistic, objective medicine and emotional
empathy, personal conviction
- Tragic situations leave only tragic options

7. “In Preemies, Better Care Also Means Hard Choice”
(New York Times August 13, 2012)
Where do we touch the limits?
• Skin immaturity
• Fluid balance instability
• Lung immaturity and breathing problems
• Malnutrition and gut damage
• Retinopathy of prematurity
• Early and late onset infections
• Brain damage which can lead to a spectrum of long-term
neurological sequelae = THE MAIN ETHICAL ISSUE

8. Brain development
• 12-16 weeks: neuronal proliferation
• 12 - 20 weeks: neuronal migration
• 20 weeks: neuronal organisation: inside-out layering
of the cortical neurones, synaptogenesis
• 26 -28 weeks: rapid gyral growth
• Myelinization starts at 20 weeks gestation,
continues for many years postnatally
• 29-40 weeks: 2.7 fold increase in brain volume,
4 fold increase in grey matter volume
• Brain folding: coffee bean  walnut

9. Gestational age: are we always talking about
the same time?
Pediatrics Vol. 114 No. 5 November 1, 2004 pp. 1362 -136 (4doi: 10.1542/peds.2004-1915)

10. Estimate of gestational age
• The best obstetric estimate is necessary
- gaps in obstetric information
- inherent variability (as great as 2 weeks) in traditional
methods of gestational age estimation
- postnatal physical examination inaccurate
• First trimester ultrasound: golden standard
(margin of error: a few days)
• Methods should be clearly stated
Wisserl J. Et al Estimation of gestational age by transvaginal sonographic measurement of greatest embryonic length in
dated human embryos Ultrasound in Obstetrics & Gynecology Volume 4, Issue 6, pages 457–462, 1 November 1994
Bulletin of the World Health Organization The worldwide incidence of preterm birth: a systematic review
of maternal mortality and morbidity Stacy Beck, Daniel Wojdyla

11. Viability and its implications
• Disability
• Psychological
• emotional impact of raising a child with a disability
• the child himself: depression, anxiety, aggression, lower self
concept (Rachel Levy Shifft and Gili Einat, Journal of Clinical Child Psychology V 23 p 328-9)
• Financial:
- US, 2003:
Premature newborns = US$18.1 billion in health care costs
= half of total hospital charges for newborn care
+ ongoing costs for the health system
(1,4 billion on less of 1,25 USD/day)
• Societal

12. Thresholds of viability: some numbers on
SURVIVALS
• Dramatically improved during last 3 decades
• Differences in methodology
• Few studies have reported mortality and morbidity rates in
gestational age-specific categories
Preterm Birth: Causes, Consequences, and Prevention.Institute of Medicine (US) Committee on Understanding Premature
Birth and Assuring Healthy Outcomes; Behrman RE, Butler AS, editors.Washington (DC): National Academies Press (US); 2007.

13. Thresholds of viability: some numbers on
SURVIVALS
– Risk of neonatal deaths not higher than 50%, except for infants less
the 500g and 24 weeks gestation
Stringer M, Brooks PM et al: New guidelines for maternal and neonatal resuscitation. Journal of obstetrics,
gynecology and neonatal nursing 2007; 36(6), 624 -34
– At 24 weeks, survival = 58%
– At 25 weeks = 77%
– Not precised for < 24 weeks
– Survival vary from 1% at 22 weeks to up to 44% at 25 weeks.
– Before 21 weeks and six days, no survival published
Brazier M et al Letting babies die J Med Ethics 2007; 33 (3) 125-6

14. Thresholds of viability
• Survival
– at 24 weeks: 31%
– at 25 weeks 50%
Larroque B, Ancel PY, Marchand-Martin L, Cambonie G, Fresson J, Pierrat V, et al. Special care school diffiulties in
8- year-old very preterm children: the Epipage cohort study. PLoS ONE 2011; 6: e21361.
– at 23 and 24 weeks gestation varies from 10-50%
– at 25 weeks gestation: 50 - 80%
Fetus and newborn committee, Canadian paediatric society, maternal-fetal medicine committee, society of obstetricians and
gynaecologists of Canada. Management of the woman with threatened birth of an infant of extremely low gestational age.
Can Med Assoc J 1994;151:547-53.
- 22w (0), 23w (29%), 24w (50%), 25w (65%).
Aust N Z J Obstet Gynaecol 2007 Aug;47(4):273-8.Delivery in the 'grey zone': collaborative approach to extremely
preterm birth. Keogh J et al Consensus Workshop Organising Committee

15. Thresholds of viability
• > 23 weeks' gestation:16% chance of surviving
• At 24 weeks, survival: 44%
• At 25 weeks survival: 63%
• Each day increases survival by 3%.
Nuffield Council on Bioethics. Critical care decisions in fetal and neonatal medicine: ethical issues.
London:NCB,2006. www.Nuffieldbioethics.org/go/ourwork/neonatal/publication 406.html.

16. Morbidity: EPICure (UK, Ireland)
• Follow up of 78% of 308 children born < 25 weeks + 6
days up to 6 years, from 1995 on
• 12% cerebral palsy
• < 750g: 30 - 50% moderate or severe disability
• 41% cognitive problems (-2SD) compared to classmates
• Survivers of 24 weeks: 14% with no handicap
• Survivers of 25 weeks: 24% with no handicap
Marlow N, Wolke D, Bracewell MA, Samara M, The EPICure Study Group. Neurologic disability at six years of age after
extremely preterm birth. N Engl J Med 2005; 352

17. EPICure

18. Morbidity: EPIPAGE (France)
• 77% of 2901 infants between 22 and 32 weeks,
control group of term babies, up to 5 years (not
finely sliced!)
• < 27 weeks, -1DS of QI, attention deficit,
language and behaviour disorders,
Larroque B, Ancel PY, Marchand-Martin L, Cambonie G, Fresson J, Pierrat V, et al. Special care school diffiulties in
8- year-old very preterm children: the Epipage cohort study. PLoS ONE 2011; 6: e21361.

19. Morbidity:The American Academy of
Pediatrics:
• 30-50% of surviving children with <750g or whose
gestation <25 weeks had moderate or severe disability
Stringer M, Brooks PM et al: New guidelines for maternal and neonatal resuscitation. Journal of obstetrics,
gynecology and neonatal nursing 2007; 36(6), 624 -34

20. Morbidity:Nuffields (GB):
• 23 - 24 weeks' gestation: 64% risk of serious disability
• At 25 weeks: risk of severe disability: 40%.
• Each day increases survival by 3%.
• Girls have a week’s advantage over preterm boys
Nuffield Council on Bioethics. Critical care decisions in fetal and neonatal medicine: ethical issues.
London:NCB,2006. www.Nuffieldbioethics.org/go/ourwork/neonatal/publication 406.html.

21. Morbidity: Australia
• Grey zone between 23-25 weeks + 6 days
• Survival to discharge data
- 22w (0)
- 23w (29%)
- 24w (50%)
- 25w (65%).
• Proportion with no functional disability
23w (33%), 24w (61%), 25w (67%)

22. Morbidity: The Netherlands:
Leiden follow up project: data since 1983:
Death or abnormal development:
23-24 wks (92%)
25 weeks (64%)
26 weeks (35%)
27-32 weeks (18%)
Sheldon T. Dutch doctors change policy on treating preterm babies. BMJ 2001;322:1383
Rijken M et al Mortality and Neurologic, Mental, and Psychomotor Development at 2 Years in Infants Born less than 27 Weeks
Gestation: The Leiden Follow-Up Project on Prematurity, Pediatrics january 2003

23. Recommendations: British Association of
Perinatal Medicine
22-28 weeks threshold of viability (under 26 weeks)
- Increasing risk with decreasing gestational age
serious ethical dilemmas
- Short notice decisions
- Need to balance maternal well-being against the
likely neonatal outcome
- Caesarean section in the baby’s interests
can rarely be justified prior to 25 weeks gestation.
- Threshold viability infants should be followed up for
at least 2 years: data collection
British Association of Perinatal Medicine. Fetuses and newborn infants at the threshold of viability. Pediatr 2002;110:1024-27.

24. Recommendations: The American Academy
of Pediatrics:
• 22-25 weeks gestation problematic
• Non-initiation of resuscitation at 23 weeks (less 400g)
is appropriate
• Difficulties in making accurate assessments before birth
• Fetal weight can be inaccurate by 15-20%
• Small discrepancies in gestation of 1 or 2 weeks can have
major implications for outcome
• Multiple gestation makes evaluation difficult
• Counselling
• But: US: legal trends restrict discretionary decision-making
The Marginally Viable Newborn: Legal Challenges, Conceptual Inadequacies, and Reasonableness.Sadath A. Sayeed M.D., J.D
The Journal of Law, Medicine & Ethics Volume 34, Issue 3 600-610, 2006
Stringer M, Brooks PM et al: New guidelines for maternal and neonatal resuscitation. Journal of obstetrics,
gynecology and neonatal nursing 2007; 36(6), 624 -34

25. Recommendations: The Fetus and Newborn
Committee, Canada
• 22 weeks: compassionate care only
• 23-24 weeks: careful consideration: limited benefits and potential
harms of caesarean section and active resuscitation
• Full care 25 weeks
(survival rate is 50-80% with disability rates 10-25%)
Fetus and newborn committee, Canadian paediatric society, maternal-fetal medicine committee, society of obstetricians and
gynaecologists of Canada. Management of the woman with threatened birth of an infant of extremely low gestational age.
Can Med Assoc J 1994;151:547-53.

26. Recommendations: The Netherlands
• No intensive care to babies before 25-26 weeks gestation
• Decisions should be taken with full participation of the parents
• Unclear cutoff of resuscitation of immature infants:
- at 25%, 50% or 75% chance of intact survival?
- (Viability not universally agreed, thus: if bar is set low there will be more
survivors with more handicaps)
• Euthanasia institutionalised
Sheldon T. Dutch doctors change policy on treating preterm babies. BMJ 2001;322:1383.

27. Recommendations: Australia
• Grey zone between 23-25 weeks + 6 days: option of non-initiation of
resuscitation and intensive care reasonable
- obligation to treat increases as the gestation advances
- at 25 weeks active treatment is usually offered
- unless adverse circumstances:
• twin-twin transfusion,
• intrauterine growth restriction
• chorioamnionitis.
• poor condition at birth or the presence of a serious abnormality
- at 26 weeks gestation the obligation to treat is very high
- non-directive counselling, avoidance of over burdening parents
• 24 weeks antenatal transfer to a tertiary centre, with option of “DNR”
Aust N Z J Obstet Gynaecol. 2007 Aug;47(4):273-8.Delivery in the 'grey zone': collaborative approach to extremely preterm birth
.Keogh J, Sinn J, Hollebone K, Bajuk B, Fischer W, Lui K; Consensus Workshop Organising Committee

28. Malcom F. Should artificial resuscitation be offered to extremely premature neonates? AMSJ 2010 p 86-9

29. Recommendations: The Nuffield Council
on Bioethics (GB)
• 23-26 weeks = grey area
• 2 components:
- to resuscitate and admit to the NICU
- to continue with intensive care or replace with
palliative care
• Recommendations
- at 25 weeks and above institute intensive care
- 24-25 weeks offer intensive care unless different parents’ wishes
- 23- 24 weeks clinicians should not be obliged to resuscitate
Nuffield Council on Bioethics. Critical care decisions in fetal and neonatal medicine: ethical issues.
London:NCB,2006. www.Nuffieldbioethics.org/go/ourwork/neonatal/publication 406.html.

30. Nuffield Council on Bioethics
“Natural instincts are to try to save all babies, even if
the baby's chances of survival are low.
However, we don't think it is always right to put a baby
through the stress and pain of invasive treatment if the
baby is unlikely to get any better and death is
inevitable.
(Margaret Brazier, professor of law at Manchester University)
Prolonging the life of profoundly sick premature babies
may be "inhumane" and place an "intolerable burden on
the baby”,
"treatment just prolongs the process of dying,”
(Andrew Whitelaw, professor of neonatal medicine at the University of Bristol, UK)

31. The Nuffield Council on Bioethics
Medical ethics committee of the British Medical Association (BMA):
• The report echoes "existing best practice”
• Disagreement with stringent cut-off points for treatment.
- "The BMA believes that blanket rules do not help
individual parents or their very premature babies”
- "Each case should be considered on its merits andin its
own context”
(Tony Calland)
When premature babies should be allowed to die, Gaia Vince, New scientist, 15 November 2006

32. Neonatal section of the Irish Faculty of
Paediatrics
• Withdrawal of care appropriate in infants born within the
threshold period who fail to respond to initial intensive care
efforts or develop severe complications
• Acceptable not to resuscitate newborns
under 500g and/or under 24 weeks gestation.
Neonatal subcommittee of the Irish faculty of Paediatrics. Statement on perinatal care at the threshold of viability.2006.

33. Recommendations: France
• Usually, no resuscitation below 24 WGA
• At 24 weeks, particular attention to parents’ wishes
• Maximum degree of uncertainty on the real interest of the patient:
nobody can pretend to claim which is the best attitude
• Other criteriae to be taken into account (discretional resuscitation):
• Prenatal corticosteroids
Moriette G Rameix S et al groupe de réflexion sur les aspects éthiques de la périnatologie very
premature births: dilemmas and management. Part 1 outcome of infants born before 28 weeks of
postmenstrual age and definition of grey zone. Archives de Pédiatrie 2010 May17(5):518-26, part 2
527-39

34. Recommendations: Switzerland
• < 24 weeks: palliative
• > 24 weeks: according to the experienced neonatology
team
Swiss Society of Neonatology: recommandations pour la prise en charge des prématurés à la limite de la viabilité (22 - 26 SA) 2002

35. Recommendations: Ukraine
Gestation period < 28 weeks
• Define the exact gestational age and weightof the fetus, estimate
prognosis, provide further consultations, recommendations and coordinate
team work of all members of perinatal team
• Inform and discuss with future parents about medical and social risks and
peculiarities of resuscitation care providing for the newborn
• Resuscitation is almost always provided if high survival chances and
acceptable morbidity
• In case of doubtful prognosis: necessity to support the wish of parents
• Do not start the resuscitation of a newborn, if almost 100% early death rate
likely (I.e.: gestation period < 23 weeks, weight < 400 gr)

36. Can limits be clearly defined? Summary
- No international consensus = chance for avoidance of
systematic approaches!
- CUTOFF, borderline of viability:
- 50% of mortality, but disability difficult to objectify and use as a criteria
- All would resuscitate at 26 weeks, most would not at 23 weeks
- Grey area: 24 and 25 weeks gestation = 2 per 1000 births
- fetal weight: 10% error
- gestational age: 3 - 5 days error

37. Can limits be clearly defined? Outcome
estimation tool
Secondary criteriae:
- Girls 1 week advantage
- Every day increases survival by 3%
- Full course of antenatal steroids
- Level of unit
- Black race
- High-medium level of income of parents
- Multiple birth, twin-to-twin transfusion
- Birth weight
- Baby’s condition at delivery
(chorioamnionitis increases the risk of periventricular leucomalacia)

38. Time-frame, algorythm for decision
making
• Primary resuscitation: Y/N
• Proceed to intensive care or palliative care
• Continue with option Y/N
• Euthanasia
– Netherlands (Groningen Protocol)
• To motivate physicians to adhere to the highest standards of decision
making
• To reduce hidden euthanasia by facilitating reporting
• Requires that all possible palliative measures be exhausted before
euthanasia is performed
• Might do more in mobilizing the availability of palliative care
services than the current situation of unreported practice
– EURONIC: 73% in 8 European Countries
Rebagliato M et al.: EURONIC study group. Neonatal end-of-life decision making: Physician’s attitudes and relationships
with self-reported practices in 10 European countries. The Journal of Medical Association. 2000 Nov 15;284(19):2451-9

39. Legal - moral: The Best Interests Standard
Acting in the “best interests of the patient”
• degree of suffering involved in the care
• futility of further intervention
• likelihood of survival free of serious disability
and practical consequences

40. Palliative Care
United Kingdom: Court of Appeal,1993:
Doctors and parent/s may not undertake actions where the purpose is
to end life, they may, in appropriate circumstances, use drugs to
relieve pain and distress, even though their use may advance the time
of death.

41. Palliative Care in France: lois Leonetti (2005)
• Legalises arrest of “non-reasonable treatment”
• Authorizes, at the end of life, the use of treatment for comfort
of patient (pain)
• Taking into account that the treatment might shorten length of
survival
• Always with the patient’s consent = parent’s consent!
Recently, French Medical Council expressed itself in the same terms

42. Decision-making for palliative care
•. At birth: neither certainty nor uncertainty as prognosis is clear-cut
(Self-fullfilling prophecy may be created by delays or suboptimal management)
• Initiation of resuscitation leads to admission to NICU:
- cascade of expensive, uncomfortable or painful procedures
- raise parental expectations about survival
• Denying intensive care a priori, based solely on the age of
gestation or birth weight = contrary to the principle of equity
• Decision-making after initial resuscitation (continue or withdraw
treatment) more justifiable
Acta Paediatr. 2008 Mar;97(3):276-9. doi: 10.1111/j.1651-2227.2008.00663.x.Caregivers attitudes for very premature infants
what if they knew?Janvier A, Lantos J, DeschÍnes M, Couture E, Nadeau S, Barrington KJ

43. Decision-making for intensive care
• Case-by-case basis according postnatal assessment
• Factors always to be considered:
- parents
- resources,
- planned pregnancy
- assisted conception,
- maternal age
- illness and fetal conditions
Decisions made by parents before birth are not necessarily
absolute and binding.

44. Divorces after handicap
• Nine times higher in case of spina bifida (BJ PSYCH 131: 79-82
(1977)
J. Maulden, Population studies, vol 46, issue2, pages 349 362 (1992)
• Low birth weight children in the US are at higher risk of experiencing
their parents divorce than children of normal birth weight
• Not confirmed in British couples
Healthy Baby, Healthy Marriage? The Effct of Children's
Health on Divorce Angela R. Fertig Princeton University
288 Wallace Hall Princeton, NJ 08544
afertig@princeton.edu 609-258-5868 June 17, 2004

45. Ethics and…corticosteroids
• Antenatal corticosteroids
• A technical, medical, ethical obligation
– No obstetrical or medical CI (infection, hypertension)
– C. Spencer, K. Neales Antenatal corticosteroids to prevent neonatal respiratory distress syndrome BMJ 2000; 320 : 325 doi:
10.1136/bmj.320.7231.325 (Published 5 February 2000)
– Roberts D, Dalziel Antenatal corticosteroids for accelerating fetal lung maturation for women at risk of preterm birth The
Cochrane Database of Systematic Reviews 2010 Issue 8, Copyright © 2010 The Cochrane Collaboration.
– J.V Been, B W Kramer, L J Zimmermann Antenatal corticosteroids to prevent preterm birt The Lancet,Vol 373, Issue 9667, Page
894, 14 March 2009

46. Ethics and…corticosteroids
• Postnatal corticosteroids in BPD
– Increased risk of neurodevelopmental
impairment, growth retardation etc, but
faster extubation, less PDA etc….
– “Ethically” contraindicated??
Early (< 8 days) postnatal corticosteroids for preventing chronic lung disease in
preterm infants
Henry L Halliday1, Richard A Ehrenkranz2, Lex W Doyle31Perinatal Room, Royal-Jubilee Maternity Service,
Belfast, UK. 2Department of Pediatrics, Yale University, New Haven, Connecticut, USA. 3Department of
Obstetrics and Gynaecology, University of Melbourne, Parkville, AustraliaContact address: Henry L Halliday,
Perinatal Room, Royal-Jubilee Maternity Service, Royal Maternity Hospital, Grosvenor Road, Belfast, Northern
Ireland, BT12 6BA, UK.
Cochrane Neonatal Group

47. Ethics and…iatrogenic diseases
- Environment in which the baby is managed (eg,
light, noise, touch)
- Mode of ventilation (eg, conventional, synchronized,
high-frequency)
- Types, doses, and results of medications used
- Short-term and long-term effects of certain, often
painful procedures
- Foreign bodies or devices used
- How the baby's nutritional needs are met (enteral,
parenteral nutrition)
Developmental care for promoting development and preventing morbidity in preterm infants
Amanda J Symington1, Janet Pinelli2
1The Children's Hospital, Hamilton Health Sciences, Hamilton, Ontario, Canada. 2School of Nursing, McMaster
University, Hamilton, Canada
Cochrane Neonatal Group.

48. Ethics and…pain
Opioids for neonates receiving mechanical ventilation
Roberto Bell˘1, Koert A de Waal2, Rinaldo Zanini31Neonatal Intensive Care Unit, Ospedale "Manzoni" -Lecco, Lecco,
Italy. 2Neonatology, Academic Medical Centre, Amsterdam, Netherlands. 3Neonatal Intensive Care Unit, Ospedale
"A. Manzoni" - Lecco, Lecco, ItalyContact address: Roberto Bell˘, Neonatal Intensive Care Unit, Ospedale
"Manzoni" -Lecco, Via Eremo 9, Lecco, 23900, Italy.
Editorial group: Cochrane Neonatal Group.
Intravenous midazolam infusion for sedation of infants in the neonatal intensive care
unit
Eugene Ng1, Anna Taddio2, Arne Ohlsson31Department of Newborn and Developmental Paediatrics, Sunnybrook
Health Sciences Centre, Toronto, Canada. 2Graduate Department of Pharmaceutical Sciences, Hospital for Sick
Children Research Institute, Toronto, Canada. 3Departments of Paediatrics, Obstetrics and Gynaecology and Health
Policy, Management and Evaluation, University of Toronto, Toronto, CanadaContact address: Eugene Ng,
Department of Newborn and Developmental Paediatrics, Sunnybrook Health Sciences Centre, C/O Women's College
Hospital, 76 Grenville Street, Toronto, Ontario, M5S1B2, Canada.
Editorial group: Cochrane Neonatal Group.

49. Ethics and…aesthetics
• End-of-life comfort/appearance for the
– Infant
– Parents
– Caregivers

50. Ethics and…parents
• Infant-parent emotional bonding
– Regionalisation
– Participation of parents in healing process
– Skin-to-skin
– Informed consent
– Decision making
Raines DA. Parents' values: a missing link in the neonatal intensive care equation. Neonatal Netw. Apr 1996;15(3):7-12.

51. Parents
When individuals lack decision-making capacity…
…the interests and welfare of the patient take priority
over all other parties
…the interests of the neonate are inextricably linked
to that of the parents
their interests must be taken into account, empowering them to
decision-making
Kent AL, et al. Collaborative decision-making for extreme premature delivery. J Paediatr Child Health 2007; 43: 489-91.

52. Parents: recommendations
• Counselling should initiate before delivery
• Transparency, openness and honesty
• Favour frequent discussions with parents
• Update them on
– their infant's condition
– interventions that may be needed
• Avoid confusing medical terminology as much as possible
• Be honest and frank about the infant's condition and prognosis, even
on matters of uncertainty
• Ask feed backs to ensure parents understand what is being discussed
Caeymaex L, ed al: Journées Parisiennes de Pédiatrie 2008 Fin de vie en réanimation néonatale: mieux
comprendre les attentes et le point de vues des parents
Collaborative decision-making for extreme premature delivery.Kent AL et al NSW and ACT Perinatal Care at the Borderlines
of Viability Consensus Workshop Committee J Paediatr Child Health 2007 Jun;43(6):489-91.

53. Communication with parents
Montreal group:
52 mothers in preterm labour: all infants at
23 weeks gestation were resuscitated, including
6 cases with conditional non-resuscitation instructions
Thus:
- In acute situations the default mode is to treat
- To step back from action seems to be very difficult

54. Some answers: creation of guidelines /
protocols
Not feeling alone, ability to rely on the experience
and expertise of others is helpful.
– Expertise
– Enabling
– Empowering
– Encouraging
– Education

55. A Case Method To Assist Clinical Ethics
Decision Making
(Modified from American College of Physicians Ethics Manual)
• 1. Define the ethics problem as an "ought" or "should" question. (e.g." "Should we withhold a respirator for this
extremely preterm baby 25 WGA as his parents request?")
• 2. List relevant facts and uncertainties. Include facts about the patient and caregivers (such as emotional state, cultural
background, and legal standing). Include physiologic facts and significant medical uncertainties (such as expected
outcomes with and without treatment), and the benefits and harms of treatment options.
• 3. Identify a decision maker. If the patient is competent, the decision maker is the patient. If the patient is
incompetent, identify a proxy decision maker (e.g., as specified by court appointment, state law, a durable power of
attorney for health care, living will, or the next of kin.)
• 4. Give understandable, relevant, desired information to the decision maker and dispel misconceptions.
• 5. Solicit values of the patient that are relevant to the question. These include the patient's values about life; relation to
community and health care institutions; goals for health care and conditions that would change goals; and preferences
about health care or proxy decision makers.
• 6. Identify health professional values, including health goals (such as prolonging life and alleviating pain), values that
pertain to patient physician communication (such as truth telling and confidentiality), and some values that extend
outside of the patient physician relationship (such as promotion of public health, and respect for the law).
• 7. Propose and critique solutions, including options for treatment and alternative providers.
• 8. Identify and remove or address constraints on solutions (such as unavailability of services, laws, or legal myths).

56. Recommendations
• Define yourself your borderline between viability
according to capacities of your facilities
– Neurological outcomes
– Respiratory outcomes
– Caloric intake
Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol.Apr-May, 2002;22(3):184-95

57. Much more research…
• Sociological
• Interviews of implicated persons
• Stratification
• EURONIC

58. Conclusion
• Grey zones are grey
• It is likely they will stay grey for some time
• It would be an error to wash them white or darken them
• Grey zones have to be adapted to the local contexts
• Every ward/hospital/maternity should allow open discussions, have a
committee on ethics, establish internal guidelines
• The role of the parents in decision-making after as-objective-as-
possible information given by healthcare members is essential
• Making ethical decisions might be very difficult, but ethical
relationships with the preterm and his parents can compensate this