Severely Disabled Newborns

1. Severely Disabled Newborns PHIL361 – 2009 Dan Turton

2. Neil Campbell • ‘When Care Cannot Cure: Medical Problems in Seriously Ill Babies’ • Technology and medical technology are great! • But, the existence of some technologies pose ethical dilemmas for healthcare practitioners

3. Technology and ELBW Babies • Extreme prematurity used to result in death • Babies can now be born at 23 weeks and survive (40 weeks is normal) • Youtube video • Medical technologies can: • Breath, feed and regulate temperature for little babies

4. ELBW Babies • 0.3% of live births are ELBW babies • (<1kg, <28 weeks gestation) • Cute, but chronically ill: • Skin leaks fluids and bruises easily • Organs function very poorly • Difficulty maintaining body heat • Some conditions bring up moral dilemmas: • RDS, intracerebral hemorrhage, NEC

5. Respiratory Distress Syndrome (RDS) • Little lungs can’t get enough oxygen into their system • Mechanical ventilation and extra oxygen can help • But, it can make the lungs even weaker • Many die within a few days • The others go on to develop Broncho-Pulmonary Dysplasia (BPD)

6. Broncho-Pulmonary Dysplasia (BPD) • Little lungs get poisoned by the extra oxygen and weakened by the pressure of the ventilator • For a few, the damage to the lungs is very quickly to much • Most continue on the ventilator for some time (a few weeks-a year) • Some survive with weak lungs • Others become respiratory cripples who will always need a respirator

7. Dilemmas of RDS and BPD • For newborn ELBW babies it is sometimes obvious that they will die in 24hours from RDS despite use of a ventilator • Should they be put on the ventilator at all? • A baby is clearly a respiratory cripple and maximum care cannot keep it comfortable. • Should therapy be removed? • What if it also has brain damage?

8. Interacerebral Hemorrhage 1 • 40-50% of ELBW babies experience this in the 1st week • Blood flow to their brain fluctuates too dramatically • Some parts of the brain die because of lack of blood • If small areas die, it’s OK • But, if large areas die, then permanent physical and mental handicaps are very likely

9. Interacerebral Hemorrhage 2 • CAT scans reveal the extent of damage (likelihood of handicap) • Many ELBW babies will be on a ventilator or scheduled feeding as therapy to keep them alive • Scheduled feeding is usually via a stomach tube and is used when the brain is not developed enough to perform swallowing etc

10. Dilemmas for Interacerebral Hemorrhage • A 2-week-old ELBW baby is on a ventilator and scheduled feeding by stomach tube • A CAT scan reveals that a serious permanent handicap is very likely. • Should therapy be withdrawn? • What %chance of serious permanent handicap would make you withdraw therapy?

11. Necrotizing Enterocolitis (NEC) • 2-5% of ELBW babies develop NEC • Their bowl becomes inflamed and parts of it are destroyed • Babies with NEC need intravenous nutrition (IVN - a food drip) • Some recover in 3 weeks • Others never recover and suffer liver failure after 6-12 months

12. Dilemmas for Necrotizing Enterocolitis (NEC) • A baby’s bowel is heavily damaged – it will never recover • Should IVN be withdrawn, or should it have a short life on IVN? • A baby’s bowel did not recover as expected and now it’s liver is failing too • Should a donor be searched for, or should IVN be withdrawn?

13. Ethical Issues of ELBW Babies 1 • Parental Consent • Sanctity of Life • Right to Life • Quality of Life • Effects of physical and mental handicaps on child’s life • Effects on parents of raising a physically or mentally handicapped child • Should babies’ interests be assessed in isolation or alongside families’ interests?

14. Ethical Issues of ELBW Babies 2 • Cost • Of initial treatment/therapy • Of subsequent hospitalisation • Of ongoing provision of care • Of equal opportunities • Opportunity costs (given the limited amount of money, how else could that money be spent?)

15. The Cost of ELBW Babies • Saving the life of an ELBW baby costs up to about $300,000* • *Not including ongoing care/ subsequent hospitalisation • About $1,000 per day • Trying to save the life of an ELBW baby that dies costs between $1,000 and $300,000 • ELBW are very expensive and have very poor chances of life

16. Survival of ELBW and VLBW Babies

17. Cost vs Survival Dilemma • Caring for ELBW babies diverts funds from older patients • Survival rates are low and many are severely handicapped • Should the financial cost of treatment be taken into account? • Should ELBW babies be given care? • Does it depend on chances of survival? • Does it depend on quality of life?

18. Birth Defects • Birth defects are best grouped by prognosis (the likely effects on survival and function) • Conditions that can be fixed • Babies will survive with no or limited effects on future functioning • Conditions that cannot be fixed: 2a) Conditions in which death is inevitable 2b) Babies will survive, but with severe handicaps 2c) Babies might survive, but with severe handicaps

19. Conditions in which Death is Inevitable 1 • Potter’s Syndrome (PS) • Kidneys and lungs fail to form • Ventilation, oxygen and temporary renal dialysis (RD) followed by kidney transplant could keep the baby alive • Kidney transplants for newborns are considered too rare to wait for, so ventilation, oxygen and RD are withheld

20. Moral Issues with Potter’s Syndrome (PS) • Should babies with PS be kept alive in case a donor can be found? • Should babies with PS be put on ventilators until they die (a less painful death)? • Should babies be taken off ventilation if PS is discovered late? (They currently are taken off in these cases)

21. Conditions in which Death is Inevitable 2 • Trisomy 18 (extra chromosome) • Abnormal appearance • Suppressed consciousness • Problems sucking, coughing, swallowing • 50% die in month1, <10% survive year1 • Death by choking or pneumonia is considered inevitable, so care is usually withheld • But, IVN or scheduled feeding could keep them alive indefinitely

22. Moral Issues with Trisomy 18 • The babies are probably never aware of their life. • Carers can save the babies life by clearing it’s throat when it chokes • Should carers save these babies’ lives when they can? • Should these babies be put on IVN? • Should they be killed, rather than let die?

23. Moral Issues with the “Inevitability” of Death • Death is not inevitable in these cases (on any normal understanding of ‘inevitable’) • Should these claims of inevitability be protested against? • Is consciousness required for ‘a life’?

24. Survival with Severe Handicaps: Spina Bifida • Brain and spinal cord do not develop properly • If spinal lesion that dramatically affects everything below it • Mild brain damage/learning difficulties is common • Between 1 and 5 babies in every 1,000 is affected • ¼ of these are severely affected

25. Survival with Severe Handicaps: Spina Bifida 2 • Severe Spina Bifida • Spinal lesion is high, baby will never walk or have proper function in lower vital organs • Mild to severe brain damage/learning difficulties is common • Survivors will be in and out of hospital for their whole life • Quality of life will be very low

26. Survival with Severe Handicaps: Spina Bifida 3 • Carers often practice selective treatment in severe cases (relieve pain, but allow death) • Most babies die within a few months • But some survive… and have more brain damage and worse handicaps than if they had been given maximum care

27. Moral Dilemma for Severe Spina Bifida • When severe Spina Bifida is detected, how should they be cared for? • Given maximum care (they will survive but will have a low quality of life) • Given pain relief, but let die (chance of surviving and having a very low quality of life) • Killed

28. Moral Issues for Survival with Severe Handicaps • Is a severely handicapped life better than no life for the baby? • Is a severely handicapped life better than no life for all concerned? • Is it appropriate for us to judge the quality of a mentally or physically handicapped person?

29. Possible Survival with Severe Handicaps • Hypoplastic Left Heart Syndrome • The main ‘pump’ in the heart fails to form properly • This can be ‘fixed’ by surgery (5-50% success) and ventilation etc • The whole heart needs to be replaced within 2 years • Success rate unknown

30. Moral Dilemma: Hypoplastic Left Heart Syndrome • Costs are very high • Chances are very low • Survivors will have ongoing handicap • Quality of life could be OK • If we keep trying, we’ll get better at this • Should resources be used to give therapy for HLHS?

31. Some Moral Issues Concerning Birth Defects • Should treatment depend on prognosis? • I.e. no treatment if death is considered inevitable or quality of life is thought to be very low • Should life-saving treatment ever be given to extend the life of a baby that will die soon and will suffer or be unconscious until it dies?

32. The Facts • About ¼ of baby deaths (in hospitals) comes after withdrawal of treatment • In Melbourne, 1,362 babies with complications: • 90% survived • 2% died despite all efforts • 8% died following withdrawal of treatment • Death was ‘inevitable’ for 42% • 17% would have survived with severe handicap

33. Western Best Practice • Withdraw treatment when: • Chances of survival are very low • Quality of life will be too low • Unless parents say no • Try to persuade them otherwise • Baby first, but their interests cannot be separated from those of the family • When treatment is withdrawn, all efforts are to make baby comfortable • Sedatives that shorten life are OK • Killing the baby is not OK

34. Summary of Campbell • Facts about ELBW babies and severely disabled newborns • Many questions raised in relation to various types and degrees of illness • Ethical aspects/questions raised: • When to withdraw life-saving treatment? • How resources should be allocated?

35. Activity • http://www.ves.org.nz/uk00.htm • What is the Church of England’s stance on treatment of severely ill newborns? • What is the Catholic Church’s stance? • What, if any, is the difference?

36. Helga Kuhse • ‘A Modern Myth: That Letting Die is Not the Intentional Cause of Death’ • Busting the ‘Moral Difference Myth’ • Discrediting the Sanctity of Life Ideal • Opening the way for legalising euthanasia • In cases where doctors would withhold care, they should consider killing

37. The Death of John Pearson • 1980: Molly gives birth to John • John is healthy, but has Down’s Syndrome • “Parents do not wish baby to survive. Nursing care only” • Dr Arthur prescribed a narcotic painkiller, water and no food • John died 3 days later • A hospital employee reported it

38. The Sanctity of Life • An Ideal that underpins many of our laws • Human life has some very special value, so it’s always prima facie wrong to kill • All forms and qualities of human life are equally valuable and, therefore, equally inviolable • Therefore, killing innocent humans is wrong

39. The Trial • “however much the disadvantage of a mongol… no doctor has the right to kill it”- Justice F • Sounds like the Sanctity of Life Ideal • But, Dr Arthur goes free! Why? • Because (apparantly) he let John die (different to killing)

40. The Moral Difference Myth • Justice F: In medicine, murder and the mere setting of conditions in which death might occur are very different • This may seem unusual… • But Justice F explains with examples

41. 4 Examples • A baby with Down’s and an intestinal blockage • A healthy, but severely handicapped child. Doctor prescribes lethal dosage of pain-killer • Terminal cancer patient. Doctor prescribes lethal dosage of pain-killer • A rejected severely handicapped child gets pneumonia. The doctor withholds antibiotics

42. Murder • Murder = the intentional causation of death • Kuhse: including direct and indirect killings • NSW: murder includes “or the things by him omitted to be done, causing the death charged”

43. Intention • Law: “everyone must be taken to intend that which is the natural consequence of his action” • If you could have refrained from acting, but did it anyway, then all of the foreseeable consequences of that action should count as intended under the law

44. Dr Arthur’s Intentions • Dr A: I prescribed DF118 because I intended to “reduce any suffering on the part of the infant” • Kuhse: True, but there would have been no suffering had Dr A not also prescribed “nursing care only” • What is the reasonable intention behind withholding food/antibiotics?

45. Causation • By action or omission, a fairly direct causal connection must be made between murderer and victim • Causation by omission is established when the omitted act is normally expected • I.e. the omitted act must not be a background condition (conditions that remain the same)

46. Was Dr Arthur the Cause? • John died of pneumonia • “Nursing care only” = no antibiotics • Dr Arthur could have arranged for life-saving care, but refrained • But was his omission the cause or just a background condition?

47. Which are Conditions and which is the Cause? • Why is the house on fire? • Oxygen present • House made of wood • Curtains made of flammable cloth • Alight kerosene lamp knocked over • Why did the plants die? • No rain • No visitors watered them • The gardener didn’t water them

48. Pneumonia vs Antibiotics as the Cause of Death • Pneumonia as the cause/difference: • Rejected handicapped babies normally die • Some die from pneumonia, others from other illnesses • Pneumonia was the cause of death • No antibiotics as the cause/difference: • Babies normally survive pneumonia • Those not given antibiotics die • Not giving antibiotics was the cause of death

49. Verdict on Dr Arthur • Did Dr Arthur intend for John to die? • Did Dr Arthur cause John to die? • (Legally) did Dr Arthur murder John? • Is what Dr Arthur did morally wrong? • What were his alternatives? • What would the consequences of those actions been?

50. Verdict on Sanctity of Life • Kuhse: “Does human life, irrespective of its quality or kind, have ‘sanctity’,… or should life and death decisions in the practice of medicine at least sometimes be based on quality-of-life considerations?”