UK courts have once again had to rule on an incredibly fraught case about the withdrawal of life support from a child: 12-year-old Archie Battersbee was found in an unconscious state by his mother on 7 April this year and never regained consciousness. The clinical team at Barts Health NHS trust viewed that it would not be in Archie’s best interests for him to continue to receive medical intervention. Archie’s parents disagreed, and sought the court’s support to have medical intervention continued. The court of appeal has now ruled that it is legal for the medical team to withdraw his life support.
The tragic nature of how Archie became ill and the minutiae of the subsequent legal processes will likely be the subject of public and academic scrutiny for some time. However, what is not in dispute is that these decisions are immensely complex, and often include experts considering information that isn’t in the public domain. What does need closer inspection is how cases like Archie’s and others that have recently been brought to the courts (those of Charlie Gard, Alfie Evans and Tafida Raqeeb, to name a few) move beyond the sphere of medical decision-making and careful deliberation among healthcare teams, patients and families, to the stark arbitration of our legal system.
Suffering a life-threatening illness or injury may mean that a child requires medical intervention to support basic functions that can maintain life, such as breathing. When they are brought to hospital, clinical teams will do their utmost to care for and treat a patient if there are any signs of life. The professional duties of clinical teams, their ethical standards and the UK legal system all currently include a presumption in favour of prolonging life. Beginning an initial course of treatment also allows clinical teams time to more fully assess the extent of the patient’s illness or injury. Such an evaluation is ongoing as patients differ markedly in terms of the nature and extent of the support they need, and whether and how their body responds to treatment.
The questions they would be looking to answer include: what is the extent of the patient’s illness or injury? How is their underlying health? Do they have physical reserves that will help their recovery? How likely are they to recover? If they can recover, what will be their quality of life? If they are unlikely to recover, then what is their current condition? What are the likely benefit and burdens associated with the medical interventions they are currently receiving?
Clinical teams also assess what a patient’s wishes would be and whether they would have a preference for medical intervention being continued or withdrawn. Adults can make their wishes known through advance directives or lasting power of attorney. Children, who are legally unable to avail themselves of such tools, rely on their parents to make decisions on their behalf and to help clinical teams understand what their wishes would be.
In cases where there are disputes between families and clinical teams, and the decision is then referred to the courts – as in Archie’s case – the ethical question that is often most pertinent is whether medical intervention should continue. In such cases clinical teams either consider the patient to be dead, or they consider continued intervention to be burdensome or harmful to the point that it would be unethical to continue. “Best interest” decisions involve delicate deliberations on the patient’s condition, and are some of the hardest decisions that clinical teams are required to make.
The likelihood of recovery and the degree of harm an unconscious patient is experiencing can be difficult to pin down. These decisions are made more robust by multiple experts, sometimes with a combined experience of a hundred years, who monitor head scans, heart traces, blood tests, pupillary responses and muscle reflexes. They do so repeatedly over days, weeks and even months to establish trends and to understand which of their interventions are helpful and ought to be sustained or increased and which are likely to be equivocal or harmful and ought to be stopped.
Such consideration and careful titration reveals medicine more as an art than a science. There is no litmus test or easy read-out of what to do when a patient is unconscious and requires artificial means to stay alive. In the case of children, in the UK, “best interests” decisions are weighted even more heavily towards sustaining life. As such, a decision to withdraw intervention from a child is likely to rely very heavily on a clinical team’s judgment of such intervention being harmful and providing no chance of enabling a life through unsupported means.
Recently, ethics committees have had a larger role in supporting clinical teams – they consult families and relevant experts to understand what is at stake and whether there are aspects of the patient’s care that may require further assessment, for example, involvement of additional experts such as a palliative care team.
We also need a wider public discussion about what it means to support people artificially through medical means – and to allow children as well as adults to make their wishes known about what they would like to have (and not have) done to them.