Family Experiences of Vegetative and Minimally Conscious States

Artificial nutrition and hydration

Artificial (or ‘Clinically assisted’) nutrition and hydration refers to providing nutrients and fluid to a patient who cannot swallow. It is a life-supporting or life-prolonging treatment for vegetative or minimally conscious patients: without it they will die. 

Treatment is provided by a tube into the patient’s stomach. In the early stages after injury a tube is usually inserted into the patient’s stomach through their nose and down their throat (a nasogastric tube) but for long-term treatment, there is usually an operation to enables the tube to go directly through the stomach wall. This may be referred to as a PEG (Percutaneous Endoscopic Gastronomy) or RiG (Radiologically Inserted Gastrostomy). 

Although some people see providing artificial nutrition and hydration as basic care, it is classed as a medical treatment in law, and, like any other treatment, should be provided only if it is in the patient’s best interests.

It is often advised in the initial stage to maintain a severely brain injured patient’s condition while they are properly assessed. However questions may arise later, about whether artificial nutrition and hydration should be continued – but withdrawing it from a patient in a vegetative or minimally conscious state requires an application to the Court of Protection. There are national clinical guidelines which outline when applications to the court should be considered (RCP, 2013, pp.61 –pp.66 see ‘Resources’).
Decisions about artificial nutrition and hydration [ANH] generate strong feelings. There may be concerns about providing it at all shortly after catastrophic injuries, with some people believing that it would be better not to extend the patient’s life at that point. There are often strong views later about whether or not ANH should be withdrawn from patients who have received it, or whether it is in the patient’s best interests to replace feeding tubes that have dropped out, or perished. A range of views was represented by those we interviewed.
  • Some people we spoke to were opposed to withdrawing any life-prolonging treatments from their relative because they believed the person would have wanted to be kept alive. 
  • Some would consider withdrawing such treatments in the future, but felt it was too early to contemplate such decisions.
  • Others thought that many (potentially) life-prolonging treatments should be withdrawn (e.g. ventilation) but felt strongly that it would never be acceptable to withdraw ANH, even though they believed that their relative would not want to be alive.
  • However some of the people we spoke to had come to view the withdrawal of ANH as the ‘least worst’ option for their relative.

Some interviewees thought that considering withdrawing artificial nutrition and hydration from the person they loved, could be an act of caring and courage.

Some interviewees were horrified at the idea of withdrawing ANH and anticipated that death ‘from starvation’ would be a ‘ difficult death (although see ‘Death and Dying’ for family reports of such deaths - which suggest this is not necessarily the case).
Withdrawing ANH was also seen as a deliberate act causing death. It was contrasted with withdrawing other kinds of treatment since this might not (and often did not) lead to the patient’s death.

By contrast other people think of tube feeding as an active intervention, imposing something on a person which might get in the way of the natural end-of-life process.
Interviewees were often concerned that, even with a confirmed vegetative diagnosis, it was possible that their relative would experience pain and suffering from a protracted death following treatment withdrawal. But some were reassured when they gained extra information, or witnessed what happened when a feeding tube was withdrawn. Fern describes how her partner has repeatedly been close to death from a series of cardiac arrests and infections and she would now would like him to be allowed to die, including if necessary the withdrawal of his feeding tube.

“If he got very ill, which he will do again, he will that’s inevitable. I would support the decision at this point to remove it and I would be very emotional and, yes I would be up there and I would wait with him. It can take a week I’ve heard, so you know. It sometimes takes two. People just, you know, it does take... but I know he’s going to go. There’s not a miracle coming for this, this is the way it’s going to go. And I support that, because I believe that’s what he wants. I feel he’s had enough”. 

Helen, who at first rejected the idea of withdrawal, came to think it was the best option.
We interviewed several people who had initiated, or gone along with, court proceedings to consider withdrawing ANH from their relative. In all cases a diagnosis of permanent vegetative state was confirmed and ANH was withdrawn. Although each of these interviewees saw this option as the best course of action in the circumstances with the law, they also felt that there should have been another way of allowing the person to die.
Whether or not families would like to see a change in the law they often observed that death from ANH withdrawal was not as bad as they had anticipated. Indeed, It often seemed peaceful. It was noticeable when we compared accounts of different ways in which patients had died that this seemed to be 'better' than some of the other ways of dying (see ‘Death and Dying’). David and Olivia are clear that David’s mother died painlessly and peacefully after the withdrawal of her feeding tube. They are glad they had the courage for the court case and to prevent her dying a worse death from lying ‘rotting in a bed’ for longer and dying a worse death.

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