Experiences of court applications about life-sustaining treatment

We spoke to several families where a court application had been made concerning life-sustaining treatment. In these cases the decision was about the feeding tube (clinically assisted nutrition and hydration).

The family members we interviewed described experiences of court applications before 2018. 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-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 told their stories in the hope of supporting other families and helping to improve the system.

Family experiences have changed in some ways since we did these interviews. Efforts have been made to address causes of delay and also there is no need to go to court unless, for example, there is a dispute either within the family or between the family and clinical team.

Obviously experiences of family conflict about medical treatment can be very painful and have their own dynamics – but when we have spoken with families on ‘difference sides’ of a legal dispute they have often still been relatively positive about court hearings even when they disagreed with the final decision. They usually spoke about feeling ‘heard’ and respected by judges and felt that the matter had been dealt with in a detailed and transparent way and was not as intimidating as they had anticipated. Nevertheless court hearings can be very difficult and the courts are an alien environment to most families. We hope you will find our interviewees’ experiences useful to give some insight into the court experience – but please get up-date legal advice.

After some initial challenges, Helen found the legal procedure was robust and it was helpful to know that the final decision was not her responsibility. She explains what happened in her case, and offers advice to other families.

Gender Female

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Gunars and Margaret have some clear messages for health care professionals and organisations. They report delays and poor communication and stress that professionals should take the lead and ensure the right process is followed.

Gender Male

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Cathy was grateful for the kindness of all involved but, sixteen years later, remains very distressed about what happened. She highlights how families can be left feeling very guilty if they are the ones who have to start the discussion about withdrawing

Gender Female

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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 fact that it was the responsibility of the Trust or Clinical Commissioning Group to take the initiative in making an application to the court – and they specified the timescale for doing this. This remains the case in the new guidelines (2018) (See ‘Resources’).

Cathy was excited to read the National Clinical Guidelines brought out by the Royal College of Physicians in 2013.

Gender Female

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The guidelines Cathy is referring to here have been further improved – the revised guidelines published in 2020 are even clearer about the points she highlights as important.

See resources for links to more information.

Repeated life-threatening incidents

The people we spoke with described how they were often on 'red alert' for years - anticipating the person's death. Many witnessed repeated life-threatening events...