2. I do not consider myself to be the EXPERT
on the subject.
I consider the talk more of reflection on
Neonatal Practice in General.
I have referred various resources for the
presentation
I have no conflict of interest.
3. "No other gift is greater than the gift of
life! The patient may doubt his relatives,
his sons and even his parents, but he has
full faith in his physician. He gives himself
up in the doctor's hands and has no
misgivings about him. Therefore, it is the
physician's duty to look after him as his
own". (Charak)
4. Ethics refers to moral principles or
set of moral values that determine
the conduct of doctors as stipulated
by the medical profession from time
to time.
5.
6. “A physician should be an upright man... He
shall keep himself pure in character and ...he
should be modest, sober, patient, prompt in
discharging his duty without anxiety;
conducting himself with propriety in his
profession and in all the actions of his life.”
7. Ethics Requires that we
treat people as ends and
never simply as means or as
subjects, and never simply
as objects - Immanuel Kant
8. beneficence
Non maleficence
Parental autonomy
Distributive justice
correct medical facts
9. Who benefits from my action and in what
way?
doing good
preserving life and alleviating suffering
10. Primum non nocere
Which parties may be harmed by my action?
What steps can I take to minimise this harm?
Have I communicated risks involved in a
truthful and open manner?
In the event of a disaster, how can I avert
the possible harm caused?
11. respect parental autonomy and family
privacy
presumptive authority over the
welfare of their children.
Strong ties of affection and concern
insight into the functioning of their
family
an ongoing role in their children's lives.
12. The treating team
- less likely to be vulnerable to
the stress and emotional turmoil
- wide range of nonmedical issues
involved
Shared decision-making between
parents and physicians - ideal
strategy
13. Have I identified all vulnerable groups
that may be affected by my action?
Is my proposed action equitable?
How can I make it more equitable?
- protect patient rights
- fair allocation of medical resources
14. Medicine is about : “Can we?”
Ethics is about: “Should we?”
15.
16. At three junctures -
resuscitation,
treatment planning,
and withdrawal of treatment.
17. Apply three basic ethical concepts:
Do no harm.
Act in good faith.
Act in the patient’s best
interest.
18. Ethical Issues in Neonatal Medicine
• Limits of viability: 22-24 wks GA
• Congenital anomalies
– Prenatal- Fetal surgery
– Postnatal - genetic, multiple anomalies
• Nonresponsiveness to therapy
– Chronic lung disease
– Perinatal distress
– Intraventricular hemorrhage
19. Gestational Age Recommended Care
(completed weeks)
<23 (24) weeks DNR
23-24(24-26) weeks Comfort
care
Resuscitation only if family wishes
support after outcomes discussed;
comfort care may be chosen
> 26 weeks full Resuscitation
recommended
20. In the postsurfactant era, most
commentators have recommended -
Initiating intensive care when the GA is 26
weeks or greater,
forgoing intensive care when the GA is < 24
weeks or less, and
providing care in accordance with the parents’
wishes when the GA is 24 – 26 weeks
not appropriate to initiate resuscitation for
newborns less than 24 weeks’ or 500 g BW
21.
22. Sophisticated, intensive care
environment with aggressive
interventions
In combination with
Patient/family-centered comfort and
palliative care ?
“Ethical issues” are emotionally,
physically and intellectually demanding
23. Often confronted by moral dilemmas
to which there are NO easy answers
and about which reasonable people
disagree
24. The goal of NICU care is NOT survival
alone, but survival with an acceptable
quality of life
25. survival to discharge and survival without
severe disability or impairment at follow-up.
Severe disability or impairment has generally
been defined as the presence of cerebral
palsy, blindness, deafness, or developmental-
cognitive scores more than two standard
deviations below the mean.
26. favorable outcome might be defined as
survival,
survival without severe neonatal morbidity, or
survival without impairment at 18 months
To the extent possible, the criteria used to
identify these infants should be based on data
27.
28. In, Which newborns NICU care should not be
initiated?
Once initiated, should such care be
withdrawn if severe complications occur?
Who should Decide?
30. Newborn Infants for Whom Ethical
Decision-Making is Often Required
• Extreme prematurity (limits of viability
22-24 wks) morbidity (CNS, pulmonary)
• Full-term — severe perinatal asphyxia
• Genetic disorders (e.g., trisomy 13)
• Multiple congenital anomalies
31. Newborn Infants for Whom Ethical
Decision-Making is Often Required
• Hypoplastic left heart syndrome, complex
cyanotic heart disease
• Severe intraventricular hemorrhage
• Requirements for “high technology”
(transplant, ECMO)
• Non-responsiveness to intervention (e.g.,
worsening chronic lung disease-ventilator
dependent, short gut, sepsis)
32. Neonatologists are too eager to
initiate intensive care,
too reluctant to withdraw such care,
and too hesitant to involve parents
fully in treatment decisions
33. death following a prolonged period of
suffering is clearly a worse outcome
some survivors, have of severe
handicaps that many consider worse
than death
34. The most “aggressive” neonatologists
routinely initiate intensive care to any
extremely premature infant, no matter how
small or immature
The most “conservative” neonatologists, do
not recommend intensive care before 25 or
26 wks GA
35. “Despite some chance of
survival, intensive care may
not be preferable to comfort
care and contact with the
parents as they desire”
36. Neonatology lacks the “holy
grail” whereas an intervention/
approach to care will improve
survival and decrease the
prevalence of disability among
survivors
In an age of spectacular scientific
progress, parents with gravely ill
children have never had more
information or better medical
options…But when the possibilities seem
endless, one choice becomes more
difficult to contemplate:
whether to do nothing.
Marcus AD. Wall Street Journal. Dec 15, 2003
Non-Initiation / withholding Treatment
37. Consider
the risk of death
Pain and suffering caused by intensive
care,
the future quality of life of survivors,
The views of the patient or his or her
surrogates
The resource use and cost of care
38.
39.
40. Neonatology lacks the “holy
grail” whereas an intervention/
approach to care will improve
survival and decrease the
prevalence of disability among
survivors
We have NO right to impose experimental
therapies on newborn infants of 22 and 23
weeks’ gestational age in view of lack of data
demonstrating effectiveness of care
Ethics and the NICU
Vermont Oxford Network, 2004 Annual Meeting
41. The infected mother should be told about
the risk of vertical transmission of HIV to
her offspring
given the option for abortion if desired by
her
should be encouraged to take an informed
decision regarding breast feeding
The confidentiality should be honored and
maintained at all costs
42.
43. Should NICU facilities be denied if family
can’t afford ?
Should fertility of the couple or gender of
the child affect our ethical decisions?
Should a high-risk extremely LBW baby be
taken off the ventilator to provide assisted
ventilation to a more salvageable bigger
baby?
44. What should be done when the family
cannot further afford the expenses ?
Is it worthwhile to provide hi-tech and
extremely expensive intensive care to a
tiny baby of illiterate and economically
destitute parents ?
45. complexity of care involved,
scientific uncertainty regarding
outcome,
lack of medical and social consensus on
ethical standards
the necessity for adequate social and
physical resources
46. decisions to continue intensive care
should be based on reasonable
evidence that the benefits
outweigh the pain and suffering to
the infant and the use of expensive
and limited resources.
47. Admission to an intensive care unit in a tertiary
hospital can be a harrowing experience for the
patient (and the family).
IMPERATIVE that we periodically step back from the
bedside and decide what are our goals.
Is there a REASONABLE CHANCE that all that is
being done will result in meaningful survival?
If the answer is “NO” or “PROBABLY NOT”, then the
time has come to start discussing plans with the family
to DISCONTINUE SUPPORT.
Alpert, JS Amer J Med
2009; 122: 789-790
48. Follow the principal of Distributive
Justice
acceptably cost-effective?
expenditures to preserve life are limited
in every society.
selective use of intensive care for
extremely premature infants results in a
lower cost
49. The total costs per survivor at
discharge are very high
These resource costs do not include
the costs after discharge to the
family
Medicine, Money and Morality clash
50. effects on the infant are of primary concern
consequences for all persons affected
relevant
the effects on the family when there is little
likelihood of benefit to the infant
principle of nonmaleficence should be applied
to the family as well as the infant
effects on the parents’ marriage and family
life
52. Maternal ill health
Separation from her infant
Strange, “hostile” environment - ALIEN
environment
High-tech noise, light
Unfamiliar staff
Complex medical disorders to understand
53. • Appearance, condition of infant
- tubes, wires, other
• Sudden unexpected changes
— two steps forward, one step
back
• lack of control, uncertainty
• Lack of information
• Financial hardship
54. Lack of Information
Exclusion from Decision-Making
Overtreatment of Babies
Pain and suffering of treatment
55. “The NICU experience is like living through a
nightmare that you just cannot wake up
from”
“The NICU is full of numbers: As and Bs,
grams per day, ounces of milk, q3 hours, % of
oxygen, level of sodium,etc.”
56. “We constantly read research papers and
abstracts, trying to digest the
information.”
“Our lives revolved around the numbers,
percentages and statistics regarding
cognitive impairment, behaviour
abnormalities and motor disabilities”
57. Compassion
Humility
Courage
Information
Honesty
Time
Sensitivity
Commitment
What parents require of
the health care team
58.
59. Despite the progress made over the
past decade, scientific uncertainty
regarding outcome continues in the
neonatal intensive care unit.
60. “a vast uncontrolled experiment
undertaken without informed consent
and with possibly undesirable results.”
- Jeffrey Maisels
61. “ Intensive Care is like the withdrawal
method of contraception, Best used
early and certainly before physiology is
irreversible ”
62.
63. Layman unable to cope with data
Opinions not facts cause anxiety
Defensive medicine
Third party information
64. Parents should be told of the following:
(1) the probable outcome of the
treatment plan,
(2) the existence and nature of risks of
interventions or treatments
(3) information about any alternative
treatments, including their potential
for risks and benefits.
65. The parents should be kept informed about
the condition
Humility, concern, empathy and compassion
are crucial
The health team should not only try to do
their best, but the family must perceive
The religious faith of the family should be
honored
66. • Information given parents in the NICU
often consists of euphemisms and half-
truths.
• Parents are rarely informed about major
uncertainties surrounding their babies care
or allowed to participate in decisions.
71. Press reports of the “worlds smallest baby”
without follow up or appropriate
discussion of problems [and]
costs (financial and emotional)...
...do nothing but create unreal expectations in
parents and families.
72. Physicians who compete in the
lay press contribute to
- misunderstanding,
- malpractice and
- increased cost.
73.
74. Parents of a ELBW Baby
During the ten years between Our baby’ birth and
death, it seemed as if the doctors were slowly
chipping away at his body and his spirit.
During those ten years, what stands out are the
constant battles to find our baby help and
treatment.
As his care became more difficult and
unsuccessful, much of the medical community
backed away in frustration. (contd--)
75. Parents of a ELBW Baby
Believe me, I felt the frustration too, but I
spent the endless nights holding him while he
cried in pain and asked me to make the hurt go
away.
My greatest fears from ten years ago were
realized:
that in spite of all the love and nurturing we
gave Our baby , we could never take away the
pain or make him well.
76. When Our baby was two, I was asked to bring
her back to the NICU for a follow-up study.
At the time, she was being treated for
cerebral palsy by a world- famous neurologist;
for visual defects by a pediatric
ophthalmologist; …for ear and throat problems
by an ENT; for chronic pulmonary disease by a
pediatric pulmonologist...
(contd--)
77. …for immune deficiencies by an infectious
disease specialist; and for orthopedic
problems by a pediatric orthopedist.
She was also receiving speech, physical, and
occupational therapy.
(contd--)
78. However, for the purposes of the NICU
follow-up study, She was declared
NORMAL!
79. “There is no excuse, no matter how well-
intentioned, for withholding important clinical
information about a child’s condition or prognosis
from his or her parents.”
80. “David will be 9 on May 8. I consider this the ninth
year of my jail sentence. Even killers get out on
parole. Not the parents of micro-preemies, who
suffer brain damage from being intubated,
respirated, poked, prodded, bled and barely fed.
Hospital gets $500 K from our private insurance.
We get a life of broken dreams and sleepless
nights.”
Father of a micro-preemie
81.
82. …We find the scenarios (of neonatologists)
for quality-of-life evaluations to be out of touch
with the harsh realities of our children’s lives.
Where is the description of the months or years of
grueling hospitalization with the associated
gastrostomy tubes, jejunostomy tubes, and
fundoplications; the tracheostomies, shunts, and
orthopedic, eye, and brain surgeries;
hyperalimentation, oxygen tanks and ventilators?
(continued)
83. Similarly, there was no mention of
bankruptcies, divorces, mental and physical
breakdowns, death in late childhood,
neglected siblings, and suicides caused by the
extreme burdens of caring for severely
medically and developmentally compromised
children.
Culver G, et al. JAMA. June 28, 2000
86. The first step in the evolution of
ethics is a sense of solidarity with
other human beings.
— Albert Sweiter
87. initiate regular education programs in
the field of
- behavioral sciences,
- communication techniques and
- medical ethics for the benefit of
medical and nursing students.
