Who decides when life sustaining treatment should end?

The case of Archie Battersbee has received a lot of public attention and the High Court has ruled that his life-sustaining treatment should be withdrawn - Archie Battersbee: Who decides when life support ends? Yesterday, after his parents' appeal, the European Court of Human Rights declined to become involved in the case - Archie Battersbee: European Court of Human Rights turns down parents' case.

It is useful for students of health and social care to understand why and how these decisions are made and who makes them, along with the underpinning ethical principals involved.

Ethical issues and dilemmas arise frequently in health and social care. An ethical dilemma may be present when there are two opposing ethical principles or values clashing. A simple example is a lung cancer patient in hospital that requests staff to take them outside so they can smoke a cigarette.

There are four moral principals used when analysing the ethics of medical situations:

• Autonomy - individuals have the right to control and decide what happens to their bodies. Thus, our lung cancer patient has the right to choose to smoke,
• Beneficence - service providers should act to benefit others. In the example of our lung cancer patient, staff must act in a way to promote the most good for the patient, which would be to decline to take them outside to smoke a cigarette.
• Non-maleficence - the avoidance of causing harm. This suggests that facilitating the act of smoking by a lung cancer patient is unethical because it would cause harm.
• Distributive justice - relates to the fair allocation of resources and treatments. This could be used to argue that it would be unfair to other patients, to spend money and resources on treating a patient for lung cancer that chooses to continue to smoke.

In most cases, ethical dilemmas can be resolved between the parties involved. For example, the lung cancer patient might agree that they should ask a family member to facilitate their smoking rather than a member of staff, or they may be convinced that smoking is not in their best interests.

Where the withdrawal of life-sustaining treatment is recommended by a doctor, the issue is more complex and inevitably becomes emotional and difficult. In most cases, the family, doctors, nurses and if appropriate, professional advocates, are involved in a shared decision making process.

However, where disagreements arise over the best course of action, cases can be referred to the high court as was the case with Archie Battersbee and Charlie Gard - Charlie Gard: The story of his parents' legal fight. Whilst the parents of any child have a right to make decisions about their child's medical treatment (the 'autonomy' is that of the parents rather than the child), the court may act if the parent's decision is not in the best interests of the child (beneficence) or the action might result in significant harm (non-maleficence). In the case of Archie Battersbee, it is felt that his best interests (beneficence) are, sadly, to die rather being kept alive artificially without quality of life (which itself is linked to non-maleficence). An additional argument was invoked, that treatment was futile (will not produce the desired result) as he is brain-stem dead. Therefore, distributive justice is also considered.

It is important to remember that these decisions are not easy for anyone involved and that Archie's treatment will not be withdrawn until all legal issues have been resolved and his family will be given time to come to terms with the decision.

For an excellent paper that considers how ethical frameworks can be used in these cases, read The Withdrawal of Treatment.

To learn more about the ethical dilemmas and legal process of the Charlie Gard case, chapter 1 of Ethics, conflict and medical treatment for children: From disagreement to dissensus is recommended.