Family Experiences of Vegetative and Minimally Conscious States

In England and Wales those making decisions to provide or withdraw artificial nutrition and hydration ('the feeding tube') from any patient unable to consent/refuse on their own behalf have to ensure that the decission is made in the patient’s best interests (not just the patient's 'clinical' interests). (Note: if there is a valid and applicable Advance Decision refusing a feeding tube then that must be followed - it is not up to anyone else to make the decision).

For most patients, artificial nutrition and hydration can be withdrawn if doctors - having consulted appropriately - consider it not to be in the patient’s best interests. The only exception to this has been (until recently) if the patient is in a vegetative or minimally conscious state. In such cases the decision was referred to the Court of Protection. This was different from the situation in Scotland – where a decision about the feeding tube was usually made by the treating clinician, after consulting the family. (And laws vary in other countries). The law in England/Wales is evolving and by early 2018 it may be that the court is not involved where doctors and families have contributed to a robust best interests assessment and agree on the best way forward. Some cases may still have to go to court however e.g. if there is a dispute. Up-to-date advice should be sought.

At the time of writing December 2017 the situation was as follows:

• Cases for withdrawal of artificial nutrition and hydration from patients in permanent vegetative or minimally conscious states had not been reaching court if there was active opposition to withdrawal from the whole family. 
• Of those cases reaching court the withdrawal of artificial nutrition and hydration had always been approved when the patient had been in an uncontested permanent vegetative state and sometimes approved when the patient had been in a minimally conscious state.
• Case law was placing increasing emphasis on respecting the patient’s wishes – rather than focusing on the diagnosis itself if the precise diagnosis – or prognosis - would not have changed what the patient would have wanted. For example in the Paul Briggs case the judge ruled that it was not in his best interests to continue life-sustaining treatment even though there was still some possibility of further recovery. The judge ruled that even the ‘best case scenario’ was not something that Mr Briggs would have wanted.

Note: It is important that those commissioning care (e.g. Health Boards in Wales and Clinical Commissioning Groups in England) make sure that any treatment they are funding is in the best interests of the patient – this means ensuring that the patient has access to any expert assessment necessary to inform best interests decisions and initiating and funding a court case if one is necessary.
It is important to remember that if a decision does needs to be referred to court this should not be a reason for delay (see 'Resources' for a timeline for decision-making).

For some guidance on procedure see the latest guidelines from the British Medical Association, General Medical Council and Royal College of Physicians (Interim guidelines released in December 2017, final version due in may 2018) (see ‘Resources and Information’). For family experience of the process -  at least how it has operated to date - see ‘Applying to the court for withdrawal of artificial nutrition and hydration’.

Last reviewed December 2017.
Last updated December 2017.