Consent must be informed; it is a response to knowing the facts. Many of the facts in terminal illness are potentially sad and disturbing, but there is no justification for deliberately withholding information that will allow genuine informed consent.

The right to refuse treatment

In advanced neurological conditions there are a number of common situations in which continuation of life may depend on particular medical interventions. These include the performance of a gastrostomy to maintain nutrition in those unable to swallow, the provision of assisted ventilation for those whose respiratory function is severely impaired, or the treatment with antibiotics of an incidental infection (often respiratory).

In the judgement of some, if refusal of treatment leads to more rapid death, it ought not be allowed. In the opinion of others (including some governments), a patient can refuse medical treatment, but not the provision of food and drink if its refusal will lead to death, even if this is being administered by an ‘artificial’ route (intravenous (I-V), percutaneous endoscopic gastrostomy (PEG) and naso-gastric tube). This creates a distinction between nourishment and hydration on the one hand and the administration of drugs or surgery on the other. Still other persons and governments state that any patient has the right to refuse any medical intervention, even one that is regarded as the only way to sustain life.

The matter is made more complex by requiring a definition of ‘medical treatment’ or of ‘artificial means’.