Family Experiences of Vegetative and Minimally Conscious States

Death and dying

The relatives of most people we spoke to were still alive, but several had died – from gangrene, pneumonia, other infections or from the withdrawal of the feeding tube. Although families often think that their loved one’s heart might simply stop, none of the patients had died from a cardiac arrest. This is in keeping with the common pattern for this patient group, who are not at particularly high risk of cardiac arrest long-term (see ‘Resuscitation and DNR’) – although some had arrested early on and been resuscitated.

Everyone hoped for a pain-free, dignified and peaceful end for their relative – and, for some, people, this is what eventually happened. But some deaths were very difficult to witness. Families often saw their relative struggling at ‘the very edges of life’ for example with recurrent bouts of pneumonia. This could mean that, even when the family was hoping that the person would recover, they were relieved when the person was finally ‘at peace’. (See ‘Repeated life-threatening incidents’).

From our interviews it was clear that good palliative care could allow for a ‘gentle’ death. It was also clear that those who had experienced a relative die after the feeding tube was withdrawn did not necessarily think that, in practice, this was ‘worse’ than other ways of dying, such as with pneumonia or gangrene.

Morag’s father and Sonia’s mother both died from pneumonia, Emma’s mother died after ‘her body shut down’ and the feeding tube became ineffective. Here they talk about what it was like to witness these ways of dying.

Imogen had been told by doctors that her husband (who was in a vegetative state) was going to die, but hadn’t really understood that this would be as a result of his feeding tube being withdrawn (without going to court). 

David and Olivia, Cathy and Helen were all involved in court proceedings and their relative died after court-approved removal of artificial nutrition and hydration.

Kevin and Miggy were unusual in having their son home to die after his feeding tube was withdrawn. Miggy feels that her son’s death was very peaceful, but wonders if hospice care might have advantages.



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