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Severely Disabled Newborns. PHIL361 – 2009 Dan Turton. 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.

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Severely disabled newborns

Severely Disabled Newborns

PHIL361 – 2009

Dan Turton

Neil campbell
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

Technology and elbw babies
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

Elbw babies
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

Respiratory distress syndrome rds
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)

Broncho pulmonary dysplasia bpd
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

Dilemmas of rds and bpd
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?

Interacerebral hemorrhage 1
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

Interacerebral hemorrhage 2
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

Dilemmas for interacerebral hemorrhage
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?

Necrotizing enterocolitis nec
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

Dilemmas for necrotizing enterocolitis nec
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?

Ethical issues of elbw babies 1
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?

Ethical issues of elbw babies 2
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?)

The cost of elbw babies
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

Cost vs survival dilemma
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?

Birth defects
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

Conditions in which death is inevitable 1
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

Moral issues with potter s syndrome ps
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)

Conditions in which death is inevitable 2
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

Moral issues with trisomy 18
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?

Moral issues with the inevitability of death
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’?

Survival with severe handicaps spina bifida
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

Survival with severe handicaps spina bifida 2
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

Survival with severe handicaps spina bifida 3
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

Moral dilemma for severe spina bifida
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

Moral issues for survival with severe handicaps
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?

Possible survival with severe handicaps
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

Moral dilemma hypoplastic left heart syndrome
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?

Some moral issues concerning birth defects
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?

The facts
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

Western best practice
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

Summary of campbell
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?



  • 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?

Helga kuhse
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

The death of john pearson
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

The sanctity of life
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

The trial
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)

The moral difference myth
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

4 examples
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


  • 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”


  • 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

Dr arthur s intentions
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?


  • 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)

Was dr arthur the cause
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?

Which are conditions and which is the cause
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

Pneumonia vs antibiotics as the cause of death
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

Verdict on dr arthur
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?

Verdict on sanctity of life
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?”

Verdict on the moral difference myth
Verdict on ‘The Moral Difference Myth’

  • Is it a myth that ‘letting die’ is always more moral than ‘killing’?

  • Kuhse: In some cases, killing is better for the patient than letting die.

Summary of kuhse
Summary of Kuhse

  • Sanctity of life is the basis for many laws

  • Murder is the intentional (including by omission) causing of death

  • Both killing and letting die are murder (Moral Difference Myth = a myth)

  • Sometimes, killing a severely disabled newborn is morally better than letting it die

  • Intentional causing of death to severely disabled newborns needs to be re-evaluated (without the MDM)

  • Re-evaluation shows that it should be allowed by law in certain circumstances