Family Experiences of Vegetative and Minimally Conscious States

Applying to the court for withdrawal

In England and Wales artificial nutrition and hydration ('the feeding tube') can be given to any patient who lacks ‘mental capacity’ to make their own treatment choices if doctors consider it in the patient’s best interests. The only exception to this is if there is an Advance Decision refusing a feeding tube, or someone legally empowered to refuse it on the patient’s behalf. (See ‘Resources’).

Artificial nutrition and hydration can be withdrawn from any patient if doctors consider it not to be in the patient’s best interests. The only exception to this is if the patient is in a vegetative or minimally conscious state. In such cases the decision has to be referred to the Court of Protection. This is different from the situation in Scotland – where a decision about the feeding tube can be made by the treating clinician, after consulting the family. (And laws vary in other countries). However, just because the decision needs to be referred to court should not be a reason for delay ( see 'Resources' for a timeline for decision-making).
  • some families find the law in relation to this (in England and Wales) very reassuring. They feel it gives their relative, and families, extra protection, although they may also be outraged by the idea that a court would ever permit anyone to be ‘starved’ to death.

Other families find the requirement to go to court intimidating and an obstacle to their willingness to contribute to best interest decisions. One mother, for example, said she would never want her daughter’s case to go to court as "I’d feel like I was on trial".

Both legal and clinical practice are evolving in response to new national guidelines and as court judgments result in new ‘case law’. At the time of writing:
  • Cases for withdrawal of artificial nutrition and hydration from vegetative or minimally conscious patients do not seem to be reaching court if there is active opposition from families. 
  • So far in all cases where the withdrawal of artificial nutrition and hydration has been approved the patient has been in an uncontested permanent vegetative state (rather than minimally conscious).

This is the current state of affairs, but it does not mean that it will not change – or that a court might not approve withdrawal from an minimally conscious patient in future.

Derick Wade, a neuro rehabilitation consultant with extensive experience in this area explains the process of considering ANH withdrawal.
For clear written guidance on procedure see the national Clinical guidelines 2013 (see ‘Resources’). For family experience of the process see ‘Family experiences of court applications for withdrawal’.

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