Family Experiences of Vegetative and Minimally Conscious States

Family experiences of applying to court for treatment withdrawal

We spoke to several families where a legal application had been made to allow the feeding tube (artificial nutrition and hydration) to be withdrawn between the 1990s and 2017. The court approved the application in every case where the patient was confirmed to be in a permanent vegetative state and in some cases where the patient was minimally conscious. (Please note that the law has changed since these families went through this process – do get up-to-date advice regarding any potential legal proceedings).

These family members praised the clarity of legal procedures and the skill and compassion of many of the health professionals who came to do expert clinical assessments and the legal professionals involved in the case. They were grateful for efforts to reduce the strain on families. But they also highlight some challenges. In particular, there were often long delays in getting cases to court. 

Here, Helen, Gunars, Margaret, and Cathy share their practical or emotional experience of the process of preparing applications and then finally going to court. They have quite different experiences depending on the clinical team and when their case happened. The court case for Cathy’s brother was in 1998, the case for Helen’s son was heard in 2010 and for Gunars’ sister in 2013. They tell their stories in the hope of supporting other families and helping to improve the system.
In 2013 National Clinical Guidelines were issued addressing some of the concerns raised by Helen, Gunars, Margaret and Cathy. The Guidelines (Royal College of Physicians, 2013) outlined the responsibility of the Trust or Clinical Commissioning Group to take the initiative in making an application to the court and specify the timescale for doing this. This has since been built on with new interim guidelines (2017) which specifically address the legal issues whiich have been produced by the Royal College of Physicians along with the British Medical Association and the General Medical Council (See ‘Resources’).

Last reviewed December 2017.
​Last updated December 2017.


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