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Who’s Best Interests? Resuscitation Decisions for Neonates Annie Janvier, MD, PhD, FRCPC Associate Professor of Pediatrics University of Montreal.

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Presentation on theme: "Who’s Best Interests? Resuscitation Decisions for Neonates Annie Janvier, MD, PhD, FRCPC Associate Professor of Pediatrics University of Montreal."— Presentation transcript:

1 Who’s Best Interests? Resuscitation Decisions for Neonates Annie Janvier, MD, PhD, FRCPC Associate Professor of Pediatrics University of Montreal

2 Medical developments 50 years ago, many neonates / children / patients did not survive their disease or accident Less treatments to propose – « Nature decided and took it’s course »

3 Medical developments Technological and medical discoveries  increased survival Now physicians have to take some of these decisions – Does this intervention work? – Should I offer this intervention? Is it worth it for my patient? – Should I withdraw this intervention?…

4 What is in the best interest for my patient / loved one ? Not a new question There are some interventions that patients, physicians and / or families may find unreasonable – Medical treatments – Resuscitation: do / do not – Surgical treatments

5 US 1984 amendment: to treat or not to treat? Treatmentefficiency Parents want Tx Parents refuse Tx BeneficialYesYes Grey zoneYesNo Futileyes?No

6 Treatment for extreme preterm infants: beneficial, “grey zone” or futile?

7 Beneficial, “grey zone” or futile? Women 23 week gestation (as per dates), EFW: 500g, imminent delivery Wants to do “everything” for baby Do you think it is in this baby’s best interest to receive intervention? Would you offer intervention? Would you obtain a court order to withhold intervention?

8 Beneficial, “grey zone” or futile? How can we determine this? – Survival – Outcome – Quality of Life – Best Interests

9 What are the outcomes at weeks? France “Parents should receive appropriate information of survival and risks”, “informed consent is given in the delivery room” “In France, a do not resuscitate order is (generally made) for newborns weighing less than 600g and/or with a gestation of less than 24 weeks since the mortality is 100%” – Desfrere, L; Tsatsaris, V.; Sanchez, L.; Cabrol, D., and Moriette, G. [Extremely preterm infants: resuscitation criteria in the delivery room and dialogue with parents before birth]. J Gynecol Obstet Biol Reprod Feb; 33(1 Suppl):S84-7. NICHD neonatal network, the survival of a 23 week female weighing 600g is 40%

10 What is the survival at weeks? Germany Herber-Jonas et al, Am J Obs Gyn, 2006Jul, 195(1): General resuscitation at > 24 weeks, weeks: according to parents wishes In this study, 60% resuscitation at weeks When resuscitated – Survival at 22 weeks: 37% – 23 weeks: 75%

11 What do we tell parents: subjective (23wk girl, 600g, PNS) « 0%: 23wk babies do not survive in our center » « 1 in 4 survive without moderate or severe impairment» « About 1 out of 2 survive. Among survivors about 1 out of 2 do not have any disability, 1 in 4 have major disability» « About 1 out of 2 survive. Among survivors about 1 out of 2 do not have any disability when evaluated at months. If you then evaluate these children at 8y old, 3 out of 4 do not have any moderate-severe disability. When babies do have disabilities, parents generally adapt to these difficult challenges »

12 Morality and ethics are relative: adaptation to our environment « It seems to me morality does change. The evidence is all around us. It used to be that one could smoke cigarettes in hotel rooms but had to go out into a dark alley to buy pornography. Now, we can lie in bed and choose among four dirty movies on Spectravision but have to sneak out into the alley for a smoke. » – John Lantos, Do we still need doctors?

13 The evaluation of the outcomes The outcomes depend largely on where you are, the attitudes of healthcare providers and who is on call Pediatricians: generally pessimistic about survival and disability (Haywood et al, Pediatrics 1998) Pessimists would intervene less often Nurses are even more pessimistic than physicians (Streiner et al, Pediatrics, July 2001)

14 Parents do not share our pessimism Lee et al, Pediatrics, 1991 (Newfoundland) « « an attempt should always be made to save all infants, regardless of outcome »

15 Janvier et al, Arch Pediatrics (n=272; resp rate: 90%) What if they knew? Janvier et al, Arch Pediatrics (n=272; resp rate: 90%) There is an impending delivery of an infant with a 50% predicted survival and a long term outcome as follows: There is an impending delivery of an infant with a 50% predicted survival and a long term outcome as follows: – 50% “within normal limits” – 35% behavioural / learning disabilities – 15%-25% major disability Do you think such a baby should be resuscitated in the delivery room? Do you think such a baby should be resuscitated in the delivery room? Corresponds to a 24 wk infant

16 What if they knew? Hypothetical case (24 wk) vs actual 24 wk

17 What is their future quality of Life? Dr Saigal Quality of life: Dr Saigal, JAMA 2007 QOL of < 1000g at adolescence and adulthood QOL of ex-preterm and controls difficult to differentiate In all her QOL research, QOL is always superior when judged by children and their parents compared to heathcar providers.

18 Design: McMaster Longitudinal* Cohort, Dr Saigal, JAMA Prospective Longitudinal Population-Based Study 90% follow-up, evaluated at 23 years of life ELBW: 179/ 397 (45%) survivors, 501 to 1000g BW ( births), born in c-w Ontario NBW: 145 socio-demographically matched reference group recruited at age 8 years from a random list of public school children

19 Chronic Physical Health Conditions copyright Dr Saigal, JAMA ELBW NBW P n = 149 n = 133 % % No Problems  Problems # 1 Mean (SD) 2 ( 2 ) 2 ( 1 ) <.001 NS 1 Mean # for those with  1 problem

20 QOL (23y old) Dr Saigal Permanent job = 35% Completed school = 40% Having children= 10% same as control Living independantly= 30% same as control Being in school education= same as control Being sexually active = less (60% vs 78%) Problems with the law = less frequent

21 Quality of Life conclusions Overall, despite their health problems,at young adulthood, ELBW adults are functioning at about the same level as the NBW participants in their educational attainments, employment status, independent living, marital status/ cohabiting, and becoming parents

22 Life is not a matter of holding good cards, but of playing a poor hand well Robert Louis Stevenson ( )

23 Decision making for incompetent patients Guiding principle = patient’s best interest: – Legal decisions – Parents as surrogate decision-makers – Physicians advocating for their patients If an intervention is in an incompetent patient’s best interest -and serious harm would follow withholding intervention- refusal of care is generally not acceptable ethically and legally

24 Estimations of best interests for incompetent patients Anonymous questionnaire to physicians in 8 culturally different countries “You are a physician working in an ER in a tertiary care center…” 8 Critically ill patients of different ages with outcomes explicitly described; all arrive and – need immediate intubation + resuscitation – Have potential serious neurological consequences – Are currently incompetent, no known preferences for adults

25 8 patients 4 patients have a 50% survival. If they survive, 50% will be “normal” and 25% will have severe disability: 24 week preterm Term baby with an AV brain malformation 2 month with meningitis 50 y old trauma victim

26 2 pts have a 5% survival: 14 y with leukemia with a 20% risk of severe disability if survives 35 y with brain cancer; needs surgery, radiotherapy and chemotherapy to survive with 100% risk of disability if operated 2 pts have preexisting disabilities and a 50% survival. If survival: 50% risk of further impairments 7 y old: cerebral palsy, deafness, hyperactivity, learning disability with a new head trauma; (“bad outcome” ex-preterm) Demented 80 y old with a new stroke

27 Results : Physician responses, n = % neonatologists Response rate = 66%

28

29 Would you accept to not resuscitate at the family’s demand and give comfort care?

30 Best interest vs accepting family refusal of care What one expects from the ethical-legal theories

31 Best interest vs accepting comfort care

32

33 In what order would you intubate patients if all needed intervention at the same time (average ranking)? TRUE IN EVERY COUNTRY 1st: 2 months (meningitis) 2 nd : 7 y (multiple severe disabilities) 8th: 80y (dementia and a new stroke)

34 First and second positions

35 It seems… The majority think resuscitation is in the best interest of sick neonates YET, the majority would accept not intervening for neonates than for patients with similar or much worse outcomes The best interest principle is not used for neonatal resuscitation in many culturally different countries.

36 Beneficial, “grey zone” or futile? Women 23 week gestation (as per dates), EFW: 500g, imminent delivery Wants to do “everything” for baby Do you think it is in this baby’s best interest to receive intervention? Would you offer intervention? Would you obtain a court order to withhold intervention?

37 Beneficial, “grey zone” or futile? 40y old women, married, works with disabled children. Infertility treatment x 7 years. 5 trials of IVF, Second mortgage on her house IVF GA = 22 5/7 week gestation, EFW: 500g Wants to do “everything” for baby Do you think it is in this baby’s best interest to receive intervention? Would you offer intervention? Would you obtain a court order to withhold intervention?

38 Do parental demographics influence our attitudes towards intervention? Marcello, Janvier, in press Pediatrics 850 surveys, 78% resp rate – Montreal, Delaware, Philadelphia Described outcomes at 22-23wks, 24wks, and 27-28wks

39 Do parental demographics influence our attitudes towards intervention? Marcello, Janvier, in press Pediatrics 3 scenarios 16 yo female with two previous abortions, accidental pregnancy. (TEEN) 30 yo couple who are trial lawyers, no fertility problems. (LAW) 40 yo couple with their 5 IVF attempt. Mother works as a caregiver of handicapped children. (IVF)

40 Do parental demographics influence our attitudes towards intervention? Marcello, Janvier, in press Pediatrics More would comply with parental wishes at weeks and 24 weeks for the IVF > law> teen mother More would obtain a court order to give comfort care for the week preterm of the teen mother than for the other parents

41 Following the preterm’s best interests? 22weeks: best interests estimates are lowest (23%) – Yet 68% would intervene at parental demand… if mother is old and had IVF 24 weeks: best interest estimates are higher (60%) – But 70% would accept comfort care at parental demand. 27 weeks: best interest estimates are highest (95%) – Nonetheless, 30% of respondents would accept to give comfort care at the family’s demand

42 Cost consideration Stolz et al, Pediatrics, 1998

43 Nonsurvivors cost little Denying care to <500g would save 0.8% of the NICU budget <600g = 3.2%, <700 = 10.3%

44 Why are NICUs “relatively cheap”? Babies die quickly: 70% deaths in 1 st 5 days (Meadow et al; Lucey et al) approximately 9 of every 10 NICU beds are devoted to babies who survive (adults 4/10 ICU beds) Most survivors will be productive citizens: – costs per quality adjusted life year saved being about 1/100 of the cost of acute adult coronary care (Doyle et al)

45 Beneficial, “grey zone” or futile? Women 23 week gestation (as per dates), EFW: 500g, imminent delivery Wants to do “everything” for baby Do you think it is in this baby’s best interest to receive intervention? Would you offer intervention? Would you obtain a court order to withhold intervention?

46 Conclusions Physicians, nurses and residents are not well informed about outcomes of premature infants: they underestimate survival and overestimate disability If they knew the outcomes, physicians might intervene more What is described as being « beneficial », « futile », « grey zone » is relative and subjective.

47 Conclusion QOL of ex-preterm infants is hard to differenciate from controls. – Outcomes also improve over time NICUs are cost effective Despite having similar or better outcomes, neonates are often ranked after older patients with similar or worse outcomes

48 Conclusion: Best interests Respondents seem to follow the family’s best interest more than the child’s Respondents seem to follow the family’s best interest more than the child’s – Unless the mother is a young poor single mother – Specially if the baby is « precious » The best interest principle is not applied when considering life and death decisions for neonates, particularly for the extreme preterm The best interest principle is not applied when considering life and death decisions for neonates, particularly for the extreme preterm

49 Devaluation the the newborn, why might this be so? See Dr Dupont’s poster Lack of personhood / experience / attachment ? Still considered a reproductive choice? – Abortions may be performed at similar gestational ages – Do we react differently to their death? Decreased sense of duty than older individuals? Media: focus on neonatal disasters and miracles Easier to discriminate against possibility of handicap than confirmed handicap? Cultural, anthropological, sociological, evolutionary? – Were we “built” this way?

50 “You're lovely, but you're empty," says the little Prince to roses on the earth. “You don’t mean anything. Nobody has tamed you yet. At first, my rose was like all of you. But now my rose, all on her own, is more important than you altogether, since she's the one I've watered. Since she's the one I put under glass. Since she's the one I sheltered behind a screen. Since she's the one for whom I killed the caterpillars (except for two or three for butterflies). Since she’s the one I listened to when she complained, or when she boasted, or even sometimes when she said nothing at all. She is important because of all the time I spent with her." Antoine de Saint-Exupéry, Le Petit Prince

51 Des questions?

52 Ethical confrontation: During your practice, were you confronted with resuscitating / treating with important support / caring for extreme preterms against your moral beliefs and values (having « no choice » to do it as resident / nurse)? – Choices: Always, generally, exceptionally, never

53 Ethical confrontation: Frequent ethical confrontation Ethical confrontation is frequently experienced by residents and nurses in the NICU – Nurses = 35% – Residents = 19% Not associated with ethical confrontation : Level of training, years of practice sex, age Children +/-

54 Ethical confrontation and center (p<0.05)

55 Ethical confrontation, CP rates and centers

56 Residents training in centres where resuscitation is uncommon at 23 and 24 weeks will have higher thresholds for resuc and less ethical confrontation Residents who overestimated outcomes were less likely to have ethical confrontations (p<0.05) Nurses who incorrectly thought CP rates were high were more likely to have ethical confrontations (p<0.05) Nurses working in a unit with a high incidence of complications have profoundly different views on the ethics of resuscitation

57 WE GET USED TO WHAT WE SEE Our experience shapes our conception of what is normal or not  WHAT GOES ON IN OUR ENVIRONMENT IS NORMAL (ie ethical?)

58 How do we take clinical decisions? What is legal? What others around recommend – local expert, statements from associations, evidence… What is done around us: local experts, what is done where we are (ethical microcosms) What we learned through formal process Previous experience: Instinct, intuitions, emotions Personality What is best for the community: cost consideration

59 Birth Demographics ELBW (149) NBW (133) Gestation (wks), Mean (SD) 27 ( 2.3)Full-term Birthweight (g), Mean (SD) 841 (124)3384 (487) BW <750, n (%) SGA <10 th percentile, n (%) 24 3 Neurosensory Imp, n (%) 27 2 Gender: Male, n (%) Caucasian, n % 94 97

60 Would you comply with parents request for intervention? 22 4/7 weeks * P< P<0.0001

61 Would you comply with parents request for intervention? 24 weeks * P< P<0.001 P<0.04

62 If you disagree with parent’s decision – Would you obtain a court order to withhold treatment? 22 4/7 weeks P< P< P<0.02 * *

63 How do babies die compared to older children? Most pediatric deaths occur in ICUs NICU: neonatal intensive care PICU: pediatric intensive care Many of them occur after life sustaining treatments (LST) are withdrawn (WD) or withheld (WH)

64 There are 4 ways to die in ICUs Patients who die «no matter what »: unstable physiology – With CPR – On the respirator, without CPR – After WH/WD Life sustaining therapies « because patient is dying » Patients who died and might have survived – LST are WH/WD because of quality of life (QOL) considerations

65 Survival: what kind of death? Most studies do not make the distinction between WD/WH interventions from dying children and WD/WH interventions from physiologically stable children for quality-of-life (QOL) considerations.

66 Survival in ICU: can depend on the attitude of the physician This is an important distinction, as children who were stable might have lived if interventions has not been withdrawn, or withheld. Ethically: There is a wide variation / comfort (physicians, hospitals, countries) when it comes to WH/WD interventions for children who are not actively dying Important when comparing outcomes between ICUs and describing survival

67 Review of all patient deaths over 2y Janvier et al in review 214 deaths – NICU = 77 – PICU = 68 – Delivery room = 22 – Outside of DR-NICU-PICU = 47 Floors> home> hospice > ER

68 PICU n = 68 NICU n = 77 PICU vs NICU Died with CPR (no WH + no WD) 6%7%NS Died on a respirator (no WD, WH CPR) 51%5%p<0.05 WH / WD because dying27%35%NS WH / WD for QOL (stable)16%53%p<0.05 Modes of death: PICU vs NICU Mode of death

69 PICU n = 68 NICU n = 77 PICU vs NICU Died with CPR (no WH + no WD) 6%7%NS Died on a respirator (no WD, WH CPR) 51%5%p<0.05 WH / WD because dying27%35%NS WH / WD for QOL (stable)16%53%p<0.05 Modes of death: PICU vs NICU Mode of death

70 PICU n = 68 NICU n = 77 PICU vs NICU Died with CPR (no WH + no WD) 6%7%NS Died on a respirator (no WD, WH CPR) 51%5%p<0.05 WH / WD because dying27%35%NS WH / WD for QOL (stable)16%53%p<0.05 Modes of death: PICU vs NICU Mode of death

71 Pts who died despite maximal therapy Much more common in the PICU (82%) than the NICU (47%) Many of these PICU deaths were not unexpected: the majority of these deaths occurred in children with serious preexisting medical conditions

72 WD/WH interventions for QOL reasons (pts who might have lived if ICU had been continued) The most common mode of death in the NICU In the PICU “stable QOL” category, all patients had serious confirmed disability (could not walk, talk, eat independently). In the NICU, 60% of “QOL stable babies” had only a RISK of long term disability: (grade 3 or 4 IVH in preterm, pall care for HLHS)

73 Delivery room deaths, n= 22 (all babies > 22wks and > 400g) Median GA = 24wks; BW = 685g 23% had confirmed severe disabilities 60% of babies had a calculated survival > 50% with a RISK of disability Using Tyson’s “Preemie calculator”, avg. survival = 61%, and if survival ~ 50% normal outcomes

74 Modes of death for neonates and older pediatric patients are strikingly different For neonates, there is a greater proportion of: – Deaths following withdrawal of life sustaining therapies with stable physiology for a risk of disability (patients who might have lived with CP) – Withholding ICU admission with good chance of survival (> 50%) and a risk of disability, which suggests that...

75 1. Neonatologists & parents (and obstetricians?) are more inclined to WD/WH life sustaining treatments -before babies become unstable? -and / or when there is only a risk of disability?

76 2. PICU physicians & parents are more inclined to WD/WH life sustaining treatments when older children become unstable, but not earlier? 3. Parents & physicians are more willing to WD/WH life sustaining treatments for neonates for QOL considerations in babies who might live as compared with older children?


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