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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
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
• 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)
• 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 BronchoPulmonary 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
• 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
• 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
• 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
• 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)
• 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 612 months
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
•
•
•
•
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
• 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
• 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
Survival of ELBW and
VLBW Babies
Kg Birth
Weight
Weeks
Gestat
Survive
Severe
Handicap
Normal
Survivor
1.25-1.5
29-31
>95%
<10%
60%
1.0-1.25
27-29
85%
<10%
60%
0.9-1.0
26-27
75%
10-15%
35-40%
0.8-0.9
25-26
45%
10-15%
35-40%
0.7-0.8
24-25
30%
15-25%
5-15%
0.6-0.7
23-24
<10%
15-25%
5-15%
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 are best grouped by
prognosis (the likely effects on
survival and function)
1) Conditions that can be fixed
1) Babies will survive with no or limited
effects on future functioning
2) 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
• 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)
• 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
•
•
•
•
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
• 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
• 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
• 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
• 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
• 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
• 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
• 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
• 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
• 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
• 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
• 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
• 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
• 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?
Activity
• http://www.ves.org.nz/uk0
0.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?
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
• 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
• 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
• “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
• 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
1) A baby with Down’s and an intestinal
blockage
2) A healthy, but severely handicapped
child. Doctor prescribes lethal
dosage of pain-killer
3) Terminal cancer patient. Doctor
prescribes lethal dosage of painkiller
4) A rejected severely handicapped
child gets pneumonia. The doctor
withholds antibiotics
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”
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
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?
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)
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?
• 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 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
• 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
• 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’
• 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
• 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