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END OF LIFE DECISIONS: NICU

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  1. END OF LIFE DECISIONS: NICU DR SD SINGH 2008

  2. IMPROVEMENT IN CARE • In the past, newborn infants <28 wks GA rarely survived and were termed ‘previable’ • In recent years and in continents with appropriate skills and technological resources, survival has become possible after a shorter gestation of 23 wks

  3. WHO: 1993 • Perinatal period: commencing at 22 wks of gestation • Infants born 22 - <28 wks GA (500-1000g) termed ‘threshold viability’ • Developed countries : <26 wks GA

  4. CONSEQUENCES • Increased percentage of infants born at the margins of viability, surviving • Increased potential risk of early death or residual disability with deceasing GA esp. <26 wks GA • RAISES SERIOUS ETHICAL DILEMMAS WITH RESPECT TO APPROPRIATE CARE

  5. APPROPRIATE CARE • appropriate care does not necessarily mean every conceivable care for that baby at that time • DILEMMA: • mode of delivery • whether intensive care should follow delivery • is ‘comfort care’ more appropriate

  6. End of life decision • To facilitate appropriate ethical decisions on treatment options, the medical team should be aware of data based on evidence of expected outcomes on survival, short-term and long-term outcomes

  7. APPROPRIATE CARE DECISIONS • It is also the responsibility of the medical team to keep the parents informed as to the likely clinical outcomes at that GA resulting from the decisions, in which parents need to participate. • Counselling must be honest and accurate • Parents may have unrealistic expectations, not only to what is medically possible but also as to future prospects for their infant, whatever treatment is proposed

  8. SURVIVAL • Illustrated by 3 well known studies • Total of 1976 infants: </= 26 weeks GA • 1. 1995-2000, UK/Ireland: EPICure • 2. 1999-2000, Belgium: EPIBEL • 3. 1997, France: EPIPAGE

  9. Survival on GA at birth • < 23 wks GA : rare • 23 wks GA : 9% • 24 wks GA : 27% • 25 wks GA : 47% • 26 wks GA : 64% • < 24 wks GA 68% die in DR , only 3% discharged alive

  10. Survival to discharge once admitted to NICU • 24 wks: 35% • 25 wks: 55% • 26 wks: 68% • Birth weight [Lucey et al: Vermont- Oxford network, 1996- 2000] 4172 infants: 401-500gm(mean GA 23.3+/-2.1) 52% died in DR 31% died in NICU 17% survived to discharge but with increased rate of serious morbidity

  11. SHORT – TERM OUTCOMES(evaluated at discharge) • For infants < 26 wks GA most common morbidity: 1. CLD 2. severe ROP 3. major neuromorbidity

  12. EVIDENCE BASED • I or more of the above • EPICure: (<26 wks GA) n = 314 morbidity: 62% • EPIBEL: (</= 26 wks GA) n = 175 morbidity: 72% 24-25 wks gestation have higher chance of major adverse outcome variables

  13. LONG – TERM OUTCOMES( 2 studies) • 1a. Project on preterm and SGA infants [POPS] [Dutch 1983] n= 1338 , <32 wks GA , bwt <1500g 998 survivors to discharge (74.6%) assessed at 2,5, 9-14 and 19 years of age 10%: severe disability, handicap 40%: mild developmental delay, behavioural and learning disorders

  14. Study repeated 1996-1997 • 1b. Leidan Follow up project of prematurity [LFUPP] n=266 <32 wks GA % adverse outcome were comparable mortality decreased from 30% to 11% increased survival with CLD At 2 yrs of age: normal neurological examination at term : 48% at 2 years: 42% increase in numbers with definite abnormal CNS exam from 16 to 39% ADVERSE OUTCOME AT 2 YEARS ON GA[ NEUROLOGY, MENTAL, PSYCHOMOTOR] 23-24 WKS: 92% 25WKS: 64% 26 WKS: 35%

  15. LONG TERM OUTCOME • 2. EPICure 30 months 30%: severely dev. Delayed 10% severe neuromotor disability 20% blind or perceived light only 3% hearing loss that was uncorrectable or required hearing aids Overall disability: 49%

  16. EPICure study follow up 6 years of age: 41% cognitive disability 22% severe disability 24% moderate disability 34% mild disability Only 20% of children born < 26 wks GA had no disability at 6 years of age ADVERSE OUTCOME (DISABILITY AT 6 YEARS OF AGE ON GA) 23 wks: 97% 24 wks: 91% 25 wks: 80%

  17. % OF WITHDRAWAL OF CARE • EPICure: 55% • EPIPAGE: 44% • LFUPP: 52%

  18. PRACTICES • Most units withhold intensive care in infants <500gm bwt, < 24 weeks GA. • 500-600gm bwt, 23-25 wks GA: adopt a ‘wait and see’ decision • Infants with bwt > 600gm , > 25 wks GA initiate full resuscitation and withdraw care in those who do not respond to treatment or in whom ongoing treatment is futile

  19. South Africa • Public sector: infants , <1000gm are not generally ventilated(28-29wks) • Private sector: resuscitation threshold 25-26 wks GA, bwt 665-685gm 91% will not resuscitate infants 24-25 wks GA Intensive care for very low birthweight infants in SA: A survey of Physicians attitudes, parental counselling and resuscitation practices,

  20. End of life decisions: • 1. Decision not to resuscitate at birth • 2. Discontinuing resuscitation • 3. Commencing intensive care but withdrawing at a later stage

  21. WITHHOLDING CAREELECTIVE • Lethal congenital conditions: anencephaly multiple severe malformations chromosomal abnormalities e.g. triosmy 13, 18

  22. Guidelines for resuscitation of infants born at extreme margins of viability • When GA is known and HR heard: < 22 wks GA: no resus. Comfort care 22- 23 wks GA: individual assessment assess condition extensive resus. Not initiated if baby does not respond to facial oxygen and bagging CPR and adrenalin: NO 23-24 wks GA: routine resus. commenced but must be prepared to backdown

  23. ELECTIVEBORN AT MARGINS OF VIABILITY • Antenatal counselling is of paramount importance. • Unit guidelines should be available • Informed counselling on available statistics on mortality and morbidity on GA, bwt • Address extent of resuscitation measures and subsequent support of the infant after birth • Address parental preferences • Decision on most appropriate mode of delivery

  24. Remember! Following counselling on likely prognosis, some parents may wish to give advanced authorisation for non-resus. and non provision of intensive care for their infant born at extreme margins of viability HOWEVER Authorisation cannot be considered binding if the infant is found to be more mature and vigorous at birth

  25. EARLY WITHDRAWAL Baby responds initially to resuscitation and is admitted to NICU but steadily deteriorates: a. severe IVH b. Severe hypoxia not responding to maximum respiratory support c. severe hypotension on maximum inotropes d. postnatal diagnosis of chromosomal abnormality DECISION TO WITHDRAW INTENSIVE CARE BECAUSE THE BABY HAS NO REASONABLE CHANCE OF SURVIVAL. HE/SHE WILL CONTINUE TO DETERIORATE DESPITE ALL MEASURES AND WILL DIE ON THE VENTILATOR

  26. WITHDRAWAL: LATE • Most babies have been in the NICU for weeks to months • Babies condition becomes progressively worse and there is no longer a realistic chance of improvement e.g. severe end stage CLD with irreversible pulm. Hypertension WITHDRAWAL IN THIS CASE MIGHT INVOLVE SOME FORM OF INTENSIVE CARE e.g. ventilation/Ncpap or decision not to commence ventilation if the baby further deteriorates

  27. TO ASSIST IN DECISION MAKING • 1. Will intensive care prolong life or prolong the process of dying? • 2. What degree of pain and suffering will be inflicted on the child (family/carers) as part of the intensive care and to what end? • 3. Will the baby ever be able to be discharged from hospital? • What will be his/her quality of life?

  28. QOL? • 1. independent of life support • 2. pain free • 3. live in a home environment • 4. ability to establish a meaningful relationship with family members • 5. ability to experience pleasure

  29. PROCESS OF DECISION MAKING • Development of a close and trusting relationship between medical team and parents starting antenatally • Repeated counselling on clinical status and prognosis • Doctor counselling parents on withdrawal of life support should be senior and experienced • Offer second / third opinion

  30. Decision making process • Be sensitive and gain insight to parent’s wishes and concerns • Allow parents the opportunity to seek advice from others. • In situations of disagreement, intensive care should be continued until an agreement is reached. • As a last resort – Ethics Committee/Courts

  31. PALLIATIVE CARE/ COMFORT CARE • Humane, sensitive • Private setting • Careful handling • No invasive procedures • Limited monitoring • Counsel on possibility of life post withdrawal

  32. SOUTH AFRICAN SCENARIO[Parental perception of neonatal intensive care in public sector hospitals in SA: July- Aug 2001] • Antenatal : 60% not counselled on mortality or morbidity 80% no discussion on option of withholding or withdrawing care 49% not counselled on possibility of severe disabilities 78% not counselled on religious/moral considerations 55% not counselled on issues pertaining to pain 74% no counselling on financial considerations SAMJ, Nov 2004, vol.94

  33. PERCEIVED AND OPTIMAL LIFE SUPPORT DECISION MAKING (n=51)

  34. PARENTAL EXPERIENCE IN NICU • 1. Zulu-speaking parents were LESS LIKELY than non Zulu- speaking parents to report that doctors should make the final decision [48% parents interviewed were Zulu speaking] • 75% understood the infants condition. Parents commonly reported that the nurses were more helpful than doctors in talking about their baby’s treatment and status

  35. Important outcome • Parents overall desired a larger share in the NICU decision making involving their child • Several barriers probably diminish parental involvement therefore limiting overall satisfaction with communication in public sector hospitals • Nurses are more often perceived as helpful in counselling because: 1. spend more time at the bedside 2. share more cultural and linguistic commonalities with parents

  36. Take home message ‘Limited technological resources and medical and social realities restrict options available for care of the preterm infant in SA, HOWEVER, Neither government restrictions nor technological limitations should obviate the need to establish consistent parental counselling as a standard of care

  37. CONCLUSION The key to end of life decisions will always be CLEAR COMMUNICATION between ALL stakeholders.