Critical care decisions in fetal and neonatal medicine: ethical issues
Glossary (A - G)
Abnormality:An anomaly, deformity, malformation, impairment or dysfunction.
Abortion:See Termination of pregnancy.
Acardiac twinning:Twins where only one twin has a heart, and that twin pumps blood through them both.
Amniocentesis:A procedure that involves removing a sample of fluid from the amniotic sacsurrounding the fetus using a needle using ultrasound guidance. The sample is then used for laboratory tests to inform an assessment of whether the fetus has certain conditions. Amniocentesis is the most common prenatal test used to diagnose chromosomal and genetic birth defects.
Amniotic sac:A thin membrane around the fetus that is filled with amniotic fluid.
Anaemia:A deficiency in the blood involving a lack of red blood cells or haemoglobin (the molecule that transports oxygen in the blood).
Analgesic: A compound that relieves pain by altering the perception of painful stimuli without producing anaesthesia or loss of consciousness.
Anencephaly: An developmental abnormality in which most or all of the brain is absent. This condition is incompatible with life and may be detected by tests during pregnancy.
Antenatal:During pregnancy.
Antepartum infection:Infection in the period before labour or childbirth.
Anoxia:Lack of oxygen, especially of such severity as to result in permanent damage.
Aorta:Large blood vessel that carries blood from the heart to be circulated around the body.
APGAR:A scoring system used to evaluate the condition of a newborn baby based on a rating of 0, 1 or 2 for each of the five characteristics of colour, heart rate, response to stimulation of the sole of the foot, muscle tone, and respiration.
Ascending meningitis: Bacterial infection entering via an opening in the spine (spina bifida) and spreading to the fluid and membranes around the brain.
Autonomy:Self-governance or self-determination.
Best interests: Principle that requires that in all matters affecting a child his or her best interests should be an important consideration. Although there are different interpretations of scope and status, the principle is central to medical practice, child protection and disputes about child custody.
Bilateral:On both sides (e.g. of the brain or body).
Borderline of viability:Extremely premature babies who are born alive at or before 25 weeks, six days of gestation (measured from the first day of the pregnant woman’s last menstrual period).
Brain death:Irreversible cessation of all functions of the entire brain, including the brain stem.
Caesarean section: Procedure in which the fetus is removed from the mother after surgical incision through the abdominal wall and the uterus, rather than being born vaginally. A classical Caesarean section involves opening the abdomen and the upper part of the uterus, unlike the operation which usually can be performed at or near term in which only the lower part of the uterus is opened (lower segment Caesarean section).
Care: The activity of providing treatment for or looking after someone.
Catheter: A tube inserted into the body usually through a natural passage to remove (or introduce) fluid, such as urine from the bladder through the urethra.
Cerebral palsy: A general term for permanent but non-progressive disorder or abnormality of movement and posture arising from injury to the immature brain. See also Spastic diplegia.
Cerebrospinal fluid: Clear fluid produced in the ventricles of the brain and which flows through channels to be reabsorbed on the outside of the brain.
Chorioamnionitis: An infection of the chorion and the amnion, the two membranes enclosing the fetus and amniotic fluid, which can lead to more serious infections in both the mother and baby. This condition increases the risk of other problems in the baby and can cause premature birth.
Chorionic villus sampling: A biopsy of part of the placenta during pregnancy to obtain a sample that can be used for diagnosis of chromosomal or genetic disorders in the fetus.
Chromosome: Within the nucleus of each cell of the human body, the genetic material (DNA) is arranged in 46 string-like chromosomes. The chromosome complement of an individual is
determined when the sperm fertilises the egg.
Chromosomal abnormality or disorder: A condition in which extra or missing chromosome material leads to abnormalities, for example Down’s syndrome.
Chronic lung disease of prematurity: Persistent abnormality of the lungs of premature babies which prolongs the need for help with breathing and oxygen. In most cases this condition gradually improves over months or after one or two years.
Cognitive impairment: Impairment of mental processes used in rational thinking, for example, learning, judging, knowing, analysis, etc.
Complication: A disease or disorder that occurs during the course of (or because of) another disease.
Congenital diaphragmatic hernia: A protrusion of the abdominal contents into the chest through a defect in the diaphragm.
Congenital disorders: Abnormalities or diseases that involve the way a baby has developed during pregnancy. They may be present at birth or become apparent soon after birth.
Consent: It is a general legal and ethical principle that valid agreement must be obtained before examining or treating a patient, whenever possible. The purpose is to ensure absence of coercion, force or duress (see Appendix 5).
Consequentialism: An ethical approach that judges right and wrong primarily on the basis of the consequences of a given action.
Continuous positive airway pressure (CPAP): Air is made to flow through fine tubes placed in the baby’s nose to assist breathing. This slightly raises the pressure and prevents the lungs from collapsing.
Critical care decision: A decision that potentially affects whether a patient will live or die. This Report deals with three particular areas of medical decision-making: (1) about the care of the fetus and the mother-to-be during her pregnancy; (2) whether to resuscitate a premature or ill newborn baby, and admit him or her to neonatal intensive care; and (3), whether to institute further treatment after birth, or to withhold, or even withdraw treatment.
Cyst: An abnormal sac in part of the body that contains gas, fluid or a semi-solid material and has a membrane lining.
Deontology: Philosophical approach in which the rightness or wrongness of certain actions is defined by a formal system, independently of their outcomes.
Diagnostic technique or test: Technique or test used to establish or confirm a diagnosis.
Disability: Various definitions of disability are currently in use. The Disability Discrimination Act (DDA) 1995 (as amended 2005) provides the following definition of a disabled person: “A person has a disability...if he has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities.” The courts have interpreted ‘substantial’ as meaning neither petty nor trivial. Long-term is generally interpreted as meaning 12 months or longer. The EPICure Study (see Chapter 5) distinguishes between severe, moderate and mild disability using the following criteria. A severe disability would be likely to make a child highly dependent on care-givers, and involve one or more of: cerebral palsy that prevented the child from walking, an IQ score considerably lower than average, profound sensorineural hearing loss, or blindness. With a moderate disability reasonable independence would be likely to be achieved and one or more of the following would be involved: cerebral palsy (but the child could still walk), an IQ score lower than average, sensorineural hearing loss that can be corrected with a hearing aid, or impaired vision without blindness. Mild disabilities would include mild learning problems or other impairments such as squints. See also Impairment.
Doppler ultrasound: Investigation of the speed and direction of blood flow in the fetus, placenta and uterus using ultrasound waves.
Down’s syndrome (or trisomy 21): A condition in which there is an extra chromosome 21 (three instead of two) in (usually) every cell, leading to learning disabilities. Other abnormalities occur in some cases, including problems with the heart, intestine and muscles.
Duodenal blockage: Blockage of the intestine immediately beyond the stomach.
Duty of care: Once a baby is ‘born alive’ the healthcare team legally owe the baby a duty of care. This duty will be to sustain the patient’s life and restore him or her to health, where possible and appropriate, and, in all cases, to prevent pain and suffering, and comfort the child.1
Electroencephalography (EEG): The recording of the electrical activity of the brain to identify seizures (convulsions and fits) and abnormalities of background brain activity.
Embryo: Name given to the stage of development of a fertilised egg until classified as a fetus at around 12 weeks of gestation.
Empirical research: Knowledge built up by direct observation and by testing to see if theories can be disproven.
Encephalopathy:Any disease or disorder affecting the brain and especially chronic degenerative conditions.
Endoscopy: (literally ‘looking in’) involves the insertion of a narrow telescope into the body. Endoscopic procedures are often referred to as ‘keyhole surgery’.
Epidermolysis bullosa: A group of inherited skin diseases in which the skin blisters and erodes easily when knocked or rubbed. Different diseases within this group affect the body in slightly different ways and affect the severity of the disease, from being lethal in early life to allowing the person to lead a near-normal life for many years.
Epilepsy: A persistent disorder of the brain caused by sudden electrical disturbance in which an individual experiences disturbances of brain function affecting movement and consciousness.
Fertility treatment: A term used to describe all the treatment methods that are used to help a couple achieve a pregnancy when they are having difficulty conceiving. Treatments are available for both male and female infertility problems, and include in vitro fertilisation (IVF).
Fetal blood transfusion: Procedure carried out if the fetus suffers from rhesus haemolytic disease that involves transfusing blood into the fetus to correct fetal anaemia.
Fetal growth restriction: Condition in which the fetus fails to achieve its growth potential, usually due to an inadequate supply of nutrients and oxygen by the placenta.
Fetal medicine: The branch of medicine that deals with the growth, development, care, and treatment of the fetus and with environmental factors that may harm the fetus. (See also Open fetal surgery; percutaneous surgery.)
Feticide: The action or process of causing the death of a fetus. The guidelines of the Royal College of Obstetricians and Gynaecologists (RCOG) recommend that feticide be carried out
before termination of a pregnancy after 21 weeks, six days of gestation to ensure that the fetus is born dead.2 The recommended method of feticide is injection of potassium chloride into the fetal heart.
Fetoscopy: Use of an endoscope introduced through the mother’s abdominal wall into the uterus to view the fetus and the fetal surface of the placenta, for diagnostic or therapeutic purposes.
Fetus: The name given to the unborn baby usually from the end of the 12th week of gestation until birth.
Futile: An intervention or treatment that would delay death but is judged to improve neither life’s quality nor potential.3
Gene:The fundamental physical and functional unit of heredity consisting of a sequence of DNA, occupying a specific position on a chromosome.
Genetic screening: Screening is a public health service in which members of a defined population, who do not necessarily perceive they are at risk of, or are already affected by a disease or its complications, are asked a question or offered a test, to identify those individuals who are more likely to be helped than harmed by further tests or treatment to reduce the risk of a disease or its complications.
Genetic testing: Testing an individual for the genetic change (mutation) underlying a condition or abnormality that may be suggested by other evidence.4
Gestation: The duration of the pregnancy from first day of the woman’s last menstrual period to birth.
Gestational age: The duration of gestation is measured from the first day of the pregnant woman’s last menstrual period. Conception will usually occur around two weeks after this date.
Gradualism:In the context of this Report, the view that the fetus gains increasing moral status as biological development progresses.
Gynaecology: The science of the physiological functions and diseases of women and girls, in particular those affecting the reproductive system.
1 Royal College of Paediatrics and Child Health (2004) Witholding or Withdrawing Life Sustaining Treatment in Children: A framework for practice, 2nd Edition, available at: available at: http://www.rcpch.ac.uk/publications/recent_publications/Witholding.pdf, accessed on: 23 Nov 2005.
2 Royal College of Obstetricians and Gynaecologists (2001) Further Issues Relating to Late Abortion, Fetal Viability and Registration of Births and Deaths, available at: http://www.rcog.org.uk/index.asp?PageID=549, accessed on: 8 Aug 2006.
3 Royal College of Paediatrics and Child Health (2004) Witholding or Withdrawing Life Sustaining Treatment in Children: A framework for practice, 2nd Edition, available at: available at: http://www.rcpch.ac.uk/publications/recent_publications/Witholding.pdf, accessed on: 23 Nov 2005.
4 See Nuffield Council on Bioethics (2006) Genetic Screening: A supplement to the 1993 Report by the Nuffield Council on Bioethics (London: NCOB).