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Lecture
prepared by Professor Omar Hasan Kasule Sr. MB ChB (MUK), MPH (Harvard),
DrPH (Harvard) Chairman of the Institutional Review Board.
LEARNING
OBJECTIVES
·
To introduce the learners to the medical, legal and ethical issues in
NICU
·
To understand the dilemmas of decision making in critical situations
·
To understand the roles of the parents, physicians, and nurses in
dealing with ethical issues in NICU
·
To understand KFMC regulations and procedures regarding ethical issues
in NICU
KEY WORDS
·
Dilemmas
·
Roles
·
Ethical issues
ATTENDEES
·
Physicians
·
NICU head nurses
·
NICU charge nurses
·
NIDCAP professionals
CONTENTS
Medical problems in NICU
·
Problems arising from the intra-uterine period: intra-uterine growth
retardation:
·
Problems arising from the perinatal period
·
Problems arising in the intra partum period
·
Problems in the postnatal period
Ethical principles
·
Privacy and confidentiality
·
Truthfulness and disclosure
·
Autonomy
Scenarios of ethical dilemmas
·
Dystocia and interventions:
·
delivery of neural tube defects
·
routine neonatal screening
·
disclosure of anomaly to parents:
DURATION AND CME
·
1 day course
·
30+ CME hours
PROBLEMS ARISING FROM THE INTRA-UTERINE PERIOD: intra-uterine
growth retardation:
·
IUGR can be due to fetal, placental, or maternal factors.
·
The fetal factors are: congenital anomalies and congenital infections.
·
Placental insufficiency develops in the third trimester is caused by:
abruptio placenta, placenta previa, placental thrombosis, placental
infarctions, and multiple pregnancy.
·
Maternal causes of IUGR are: toxemia, HT, maternal malnutrition,
narcotic abuse, alcohol intake, and cigarette smoking.
PROBLEMS ARISING FROM THE INTRA-UTERINE PERIOD: malformations:
·
Teratology is the study of abnormalities of embryogenesis.
·
Anomalies may be structural or may be disorders of metabolism.
·
Chromosomal anomalies are Down’s syndrome, Turner’s syndrome,
·
Congenital malformations are due to genetic factors, environmental
factors, or an interaction between the two.
·
Environmental factors may be infections such as rubella, syphilis, and
toxoplasma.
·
Irradiation, drugs, and chemicals cause anomalies.
·
Hormonal deficiencies and excesses can also cause anomalies.
PROBLEMS ARISING FROM THE INTRA-UTERINE PERIOD: Neoplams &
malnutrition
·
Neoplasms are
rare in neonates. The most common ones are Wilms' tumor, neuroblastoma, and
various types of teratoma.
·
Protein and
energy malnutrition in the mother affects fetal growth. Placental insufficiency
decreases fetal growth. It may cause premature deliverym and fetal distress,
PROBLEMS ARISING FROM THE PERINATAL PERIOD
·
Neonatal
infections occur during the peri-natal period and may have long-term sequelae
if not treated vigorously. Maternal infections may be viral (eg rubella),
bacterial, or protozoal (eg toxoplasmosis). The microorganisms cross the
placenta and attack the fetus.
·
Transplacental
drugs: The following types of drugs can cross the placenta and cause
adverse effects in the fetus: analgesics, sedatives, anti-hypertensives,
antibiotics, and antithyroids. Narcotics and alcohol can cross the placenta.
PROBLEMS ARISING IN THE INTRA PARTUM PERIOD: birth injuries
·
Infants may
have birth injuries due to dystocia or other causes.
·
Bruising,
abrasions, and edema may occur.
·
Fractures or
nerve injuries can occur but are rare.
·
Severe anoxia
may cause death or brain damage.
PROBLEMS OF THE NEONATAL PERIOD: Pre-maturity
·
Pre-term or
premature infants are born before the 37th week.
·
Small for gestation
age newborns must be distinguished clinically from the premature infants
because treatments are different.
·
Premature
infants have respiratory problems due to deficiency of surfactant and have
difficulty sucking at the breast.
·
Premature
infants have more difficulty maintaining body temperature.
·
Prematurity is
associated with higher mortality and mental retardation among survivors.
PROBLEMS OF THE NEONATAL PERIOD: infections
·
Infections can
be transcervical or trans-placental.
·
Maternal
rubella in the first 8 weeks of pregnancy is found in 50% of cases with
congenital anomalies.
·
CMV infection
may cause death or brain damage among survivors.
·
Toxoplasmosis
may cause microcephalus, hydrocephalus, and mental retardation.
·
Infections are
bacterial and cause pneumonia, meningitis, and septicemia
·
Infants with
agammaglubulinemia may die of overwhelming infections.
PROBLEMS OF THE NEONATAL PERIOD: metabolic disorders: .
·
Tetany can
occur due to low serum calcium, high plasma phosphate, or low plasma magnesium.
·
Metabolic
disorders due to genetic causes are more severe and long-lasting.
·
The common metabolic
disorders are inborn errors of metabolism such as PKU, galactosemia, cystic
fibrosis, SIDS.
·
Phenyketonuria
(PKU) is due… and is detected using the Githrie test. It is easily managed by
dietary modifications.
PROBLEMS OF THE NEONATAL PERIOD: Respiratory disorders:
·
The Respiratory
distress syndrome is common in the premature infants, infants of diabetic
mothers, and infants delivered by Caesarian section.
·
Pneumothorax
and atelectasis occur and may be fatal
·
Pneumonia may
be due to pre-natal or post-natal infection.
·
Meconium
inhalation may block respiration.
·
Pneumothorax
and atelectasis may occur.
·
Sudden Infant
Death Syndrome (SIDS) usually at night and of unknown cause
PROBLEMS OF THE NEONATAL PERIOD: Cardiovascular disorders:
·
Neonatal
cardiovascular disorders are congenital either due to chromosomal anomalies, infection
(eg rubella), or developmental anomalies of unknown cause.
·
Congenital
cardiovascular disorders are associated with chromosomal disorders (Down’s or
Turner’s syndromes) or maternal rubella.
·
Blood disorders: Erythroblastosis
fetalis is due to incompatibility between an Rh-negative mother and an
Rh-positive infants. Anemia is a neonatal blood disorder.
PROBLEMS OF THE NEONATAL PERIOD: Gastrointestinal and genitourinary
disorders:
·
Vomiting may
be due intestinal obstruction or overfeeding. Infants may have pyloric stenosis
or various forms of intestinal obstruction.
·
Physiological jaundice
is normal in newborns. Neonatal jaundice may be physiological or may be due to
septicemia, liver disorders, or bile duct obstruction. Excessive jaundice
causes nerve damage (kernicterus) that leads to deafness and cerebral palsy.
·
Kidney and
urinary tract disorders: Neonatal kidney anomalies are
usually congenital such as renal agenesis, renal dysplasia, and polycystic
kidney. The bladder or the ureter may be obstructed. Infections.
PROBLEMS OF THE NEONATAL PERIOD: neural tube defects
·
The neural
tube, the embryonic structure that develops into the central nervous system,
normally closes by the end of the third week of fetal growth; severe deficits
result if it fails to close.
·
Examples of
neural tube defects include the absence of brain (anencephaly) and a cyst
replacing the cerebellum. The spinal canal or cord may also fail to close up.
PROBLEMS OF THE NEONATAL PERIOD: neural tube defects: spina bifida
·
Spina bifida is
a neural tube defect that varies in severity.
·
In spina bifida
occulta there is only X-ray evidence of damage to the spinal cord.
·
The meningocele
form of the spina bifida disorder is characterized by a meningeal pouch that
visibly projects through the skin. Spina bifida meningomyelocele is diagnosed
when such a pouch contains elements of the spinal cord or nerve roots.
·
Function of the
legs and bladder and bowel control is often severely impaired in individuals
with spina bifida. Infants with the defect commonly have hydrocephalus as well.
PROBLEMS OF THE NEONATAL PERIOD: neural tube defects:
hydrocephalus
·
Hydrocephalus,
the accumulation of cerebrospinal fluid in the ventricles, or cavities, of the
brain, causes progressive enlargement of the head.
·
The condition
usually results from a congenital malformation that blocks normal drainage of
the fluid.
·
A tube called a
shunt is required to drain cerebrospinal fluid from the brain and prevent
further expansion of the skull.
PROBLEMS OF THE NEONATAL PERIOD: Nervous, endocrine, musculoskeletal
disorders and neoplasms:
·
Nervous system
disorders are usually congenital: anencephaly, microcephaly (retarded brain
growth), hydrocephalus (CSF obstruction), and spina bifida.
·
Infants may
convulse due to traumatic brain injury, infection, or metabolic disorders.
·
Convulsions are
due to brain damage or due to infections or metabolic disorders.
·
Endocrine
disorders are congenital such as hypothyroidism and adrenal hyperplasia
·
Congenital
musculoskeletal disorders include clubfoot (talipes equinovarus), talipes
calcaneovulgus, and dislocation of the hip
·
Tumors, benign
and malignant. The malignant tumors are usually: neuroblastoma, retinoblastoma,
and Wilm's tumor
PROBLEMS OF THE NEONATAL PERIOD: Maternal disease:
·
Infants of
diabetic mothers have large organs (macrosomia), hypoglycemia, and respiratory
distress.
·
Infants born to
mothers addicted to heroin or morphine suffer from withdrawal symptoms. Infants
of alcoholic mothers may get the feto-alcohol syndrome which consists of mental
retardation, growth retardation, and microcephaly.
·
In mild or
moderate maternal malnutrition, the infant may not be affected. The infant is
affected in severe maternal malnutrition.
·
Fetal
malnutrition may be caused by placental insufficiency.
FIQH ISSUES FOR
THE NEW BORN..1.
·
Adhan and
iqamat are required for the newborn.
·
A name should
be chosen as soon as possible. A problem could arise in cases of indeterminate
gender.
·
The ‘aqiiqah
ceremony for the newborn is a social occasion for introducing the baby as a new
member of the community.
·
Uncontrollable
bleeding may complicate circumcision of newborns with hemostatic diseases.
Screening newborns for metabolic & genetic disorders is encouraged since it
leads to discovery of diseases early to enable earlier treatment.
FIQH ISSUES FOR THE NEW BORN..2
·
Newborn
Immunization is encouraged because it prevents disease.
·
Breast-feeding
is mandatory for 2 years according to Qur’anic injunction. Breast-feeding by a
wet-nurse is allowed. Milk banks are discouraged because they may create unregistered
foster relations that invalidate marriage later in life. Payments are made to a
divorced mother for breast-feeding the baby.
·
Nafaqat
includes all material sustenance needed for the infant such as food, clothing,
and medical care. The father is responsible for nafaqat during marriage and
also after divorce. The extended family and the state are responsible for
financial maintenance of single poor mothers.
ETHICAL DILEMMA 1: Dystocia and interventions:
·
In difficult
labor, contradictions in the purposes and principles of the law can arise
because there are two lives to consider, the mother and the fetus.
·
Early medical
and surgical intervention in the birthing process is generally for the benefit,
maslahat, of the mother but could be detrimental, dharar, to the
pre-mature fetus.
·
In some cases
like those of ecclampsia, early delivery is more to the benefit of the mother
but delay of delivery could eventually be harmful to the fetus as well.
·
The principle
of necessity, dharuurat, is invoked in situations of respiratory
distress when delivery must be effected as early as possible to prevent further
deterioration in the fetus.
ETHICAL DILEMMA 2: vaccination
·
According to
the purpose of preserving life, taking an infant for immunization is waajib.
Vaccination is usually against smallpox, chicken pox, measles, and mumps.
·
The risk of
vaccination reactions is small compared to the advantages of the procedure.
ETHICAL DILEMMA 3: delivery of neural tube defects
·
Before OR at
term? Anencephaly, Spina bifida, Hydrocephalus
·
Vaginal OR Caesarean?
Anencephaly, Spina bifida, Hydrocephalus
·
CPR at birth:
provide or withhold: Anencephaly, Spina bifida, Hydrocephalus
ETHICAL DILEMMA
4: routine neonatal screening
·
Disease
screened for: PKU? Cystic fibrosis? Sickle cell disease? Muscular dystrophies?
·
Ethical issues:
Informed consent, Benefits vs risks, detection of carriers (worry for nothing?)
ETHICAL DILEMMA 5: decisions
·
Parents and
doctors disagree
·
Parents
disagree with one another
ETHICAL DILEMMA 6: disclosure of anomaly to parents: case study 1
·
Zulaikha, a
45-year old housewife and mother of 7 healthy children, went into labor with no
worries or anxieties since she has been through this many times.
·
When the baby
was delivered she wanted to see him immediately but the midwife seemed
reluctant and her face showed that she was worried but she said nothing.
·
The mother was
told that the doctor has been called to look at the baby and that after that
she will be able to see and hold the baby. Zulaikha suspected that something
was wrong because on previous occasions she was able to see and hold the baby
immediately.
·
She was told
after half an hour that the baby had difficulty in breathing and was being
treated in the intensive care unit.
·
Q1. What
ethical issue (s) can you identify at this stage?
ETHICAL DILEMMA 6: disclosure of anomaly to parents: case study 2: Pediatric
examination:
·
Examination by
a specialist physician showed a child with unusual facial features but not much
was made of these because normal new borns have faces distorted by the birthing
process.
·
Heart murmurs
were heard.
·
The examining
pediatrician requested chromosomal analysis. The results indicated a karyotype
of 47,XY,+21.
·
Q2. What do you
think is the problem?
ETHICAL
DILEMMA 6: disclosure of anomaly to parents: case study 3: Encounter with the
pediatrician 2
·
It was not
until 3 days after birth hours later that the pediatrician came to talk to
Zulaikha.
·
The doctor went
straight to the matter ‘I am sorry Mrs Zulaikha, you have produced an abnormal
baby with a congenital condition of genetic origin. You should not be surprised
at this outcome because mothers of your age have a high risk of having abnormal
babies.
·
Someone should
have advised you not to get pregnant this late in your life. We have delivered
a couple of such babies in the past but very few survived early childhood. I
only pray that your also survives for sometime’.
ETHICAL
DILEMMA 6: disclosure of anomaly to parents: case study 4: Encounter with the
pediatrician 2
·
Mrs Zulaikha
asked the pediatrician why she was not informed of the genetic anomaly during
pregnancy.
·
The
pediatrician answered that it was the fault of the obstetrician who looked
after her in the pre-natal period.
·
Q3. What is
your opinion about the communication between the pediatrician and Mrs.
Zulaikha?
·
Q4. Give a reason for and reason against
screening for genetic anomalies during pregnancy
ETHICAL
DILEMMA 6: disclosure of anomaly to parents: case study 5: Encounter with the
baby
·
Zulaikha was
shocked but she retained her calm and asked the doctor that all she needed was
to see the baby. The doctor ordered the nurse to bring the baby.
·
Zulaikha was
shocked to see the baby and refused to touch him. “This is an abnormal baby.
This is not my baby. You have mixed up my baby with someone else’s baby. I
actually suspected this because the midwife would not let me see the baby
immediately after delivery as is the usual practice’.
·
She started
crying and moving off the bed and has to be restrained and calmed down.
·
The baby was
taken back to the newborn nursery.