Global Perspectives on End of Life Care in Children
Global Perspectives on End of Life Care in Children: A Case Discussion Comparing Legal Provisions in Israel and the United Kingdom
By Tashi Maseland, Glasgow Medical School
I met X, a 26-month-old baby with Down’s Syndrome, on the first day of a five-week placement in paediatric cardiac surgery in Israel. X was in paediatric ICU, intubated and sedated, having undergone the first surgery of a staged repair of Tetralogy of Fallot with pulmonary atresia (ToFPA), a severe congenital heart defect. As a result of this heart defect, X had developed problematic aortopulmonary collateral arteries in an attempt to increase blood flow to the lungs, which further complicated surgical repair for X’s case. X’s poor prognosis was exacerbated by systemic candidiasis, and concerns that X had suffered hypoxic-ischaemic brain injury. X subsequently underwent coil embolization to occlude the collateral vessels, which proved unsuccessful. X’s parents were distraught, and urged surgeons to do whatever was possible to save X. The surgeons proceeded with the second stage of the ToFPA repair, having cautioned X’s parents that the odds of surviving surgery were extremely poor, and highlighting their significant concerns over the possible long-term neurological sequelae of hypoxic-ischaemic brain injury if X were to make a recovery. X survived the surgery, but was left intubated and on extracorporeal life support. X was left with no prospect of recovery and no legal provision for life support withdrawal. Israeli law permits passive omission of treatment, but forbids any acts that actively shorten a patient’s lifespan, including ventilator withdrawal. This respects Orthodox Jewish perceptions that individual autonomy is overshadowed by the sanctity of life.
Ethical, legal, and professional aspects of the case
X and their family have been left in an unbearable situation, whereby life-sustaining support is merely postponing death, yet providing minimal alleviation of suffering. In this case, many would argue that it is inappropriate to sustain life. However, Israeli law prohibits withdrawal of X’s life-prolonging treatment, which will be continued indefinitely.
End of life care (EOLC) is a contentious issue across the globe, especially in the case of terminally ill young children, who generally lack capacity to make decisions around their own treatment. Different countries take very different approaches to EOLC. Israeli EOLC laws represent a unique intersection between religion, medical ethics, and law. The Israeli Terminally Ill Law (2005) explicitly prohibits withdrawal of any life-sustaining treatments,2as this is viewed as omission of treatment and therefore an active life-shortening intervention. On the contrary, withholding treatment is regarded as passive, and thereby acceptable under certain circumstances. This law applies even if a patient with capacity wishes to withdraw life-sustaining treatment. Furthermore, fluids and artificial feeding are legally regarded as basic needs rather than medical treatments, and should be continued. The law has strong religious undertones, and is based on Halacha, Jewish law. Under Halacha, the sanctity of human life is immeasurable, and therefore carries more weight than personal autonomy.
In this case, X had already been initiated on mechanical ventilation, ECMO, hydration and parenteral nutrition before the terminal prognosis was indisputable. Israeli law allows no provision for this to be withdrawn, meaning that X will continue to receive life-sustaining treatment, including fluids and artificial feeding, indefinitely, to minimal benefit.
In X’s case, the Israeli EOLC laws stand in stark contrast to core principles of medical ethics. One of the key pillars of medical ethics, beneficence, dictates that physicians should pursue a treatment course that serves the patient’s best interests. In this case, ventilation, ECMO, hydration and nutrition only serve to sustain X’s life, without granting any additional benefits. As there is no prospect of recovery to an acceptable standard of health, continuing medical treatment in this case is futile. One could therefore argue that according to medical ethics, the most appropriate and ethical approach would be to withdraw life-sustaining treatment and initiate palliation, thereby ensuring X’s comfort and maintaining X’s dignity.
Aside from apparently contradicting beneficence, the Israeli Terminally Ill Law (2005) limits patient autonomy, the key principle on which informed consent is based. Israel is both a religiously and culturally diverse nation, and the law attempts to respect both patient autonomy, by allowing patients to refuse initiation of life-sustaining treatment under certain circumstances, and respect the sanctity of life under Halacha, by preventing treatment withdrawal. However, in addition to being incompatible with the principle of autonomy, this law infringes particularly on the rights of secular patients by subjecting them to Jewish Law, thus disempowering them by dispossessing them of their self-determination. This situation is further complicated in the case of minors, who lack capacity to refuse further treatment.
Unlike in Israel, there are specific provisions in the UK under which life-sustaining treatment may be withdrawn. The Royal College of Paediatrics and Child Health (RCPCH) recognises five clinical situations in which it may be both ethical and legal to withdraw life-sustaining treatment in children. These include: the “brain dead” child, a child in “permanent vegetative state”, the “no chance” situation, the “no purpose” situation, and the “unbearable” situation.
X’s case is an example of a “no chance” situation, in which a child suffers from a disease that is so severe that life-prolonging treatments merely delay death.6Furthermore, X’s surgeons were almost certain that X had suffered hypoxic-ischaemic brain injury. This also arguably categorises X into the “no purpose” situation, whereby if a child were to survive treatment, the extent of impairment would be so severe that the child should not be expected to endure it. In time, X would likely also fall into the “unbearable” category, whereby continued treatment of irreversible illness is more than the child or their family is able to tolerate. If X were in the UK, there would be the option to withdraw treatment and initiate palliation, allowing X to die with dignity and preventing the continued trauma for X’s family.
EOLC remains a controversial issue in medical ethics, with contrasting approaches being employed around the world. This uniquely complex case demonstrates the impact of both the socio-cultural and religious influences on EOLC, and the subsequent extent of diversity in legal approaches globally.
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