Family Experiences of Vegetative and Minimally Conscious States

Patients with serious brain injuries are usually rushed to the intensive care unit [ICU] where they may be placed on a ventilator and have other interventions to stabilise their condition and enable them to be assessed. At this stage it is sometimes hard to determine the level of their brain injuries – and clinicians usually recommend intervention unless the injuries are so severe that there is very little uncertainty about the outcome. 

Decisions to withhold or withdraw treatment precede the majority of all deaths in emergency departments and in intensive care. Clinicians are cautioned against ‘life-sustaining treatment by default’ and are bound both by law and medical ethics not to carry out life-sustaining but non-restorative treatments if these carry a substantial risk of an outcome that the patient would find unacceptably bad. 

This means that there are many cases of severe brain injury where doctors allow the person to die in the ICU. The families of these people do not experience having a relative in a vegetative or minimally conscious state (and they were not included in our research). 

Sometimes the crucial decision involved whether or not to give the patient a craniectomy (surgery on the skull) (for more see ‘Craniectomy’) or whether to resuscitate them or put them on a ventilator in the first place. 
In a few cases, those we spoke to said that life-prolonging treatment had been withdrawn from their relative but the patient had survived anyway. 
In many other cases, people told us that there were suggestions from clinicians that treatment could be withheld or withdrawn – but it did not happen. Sometimes families protested that they wanted treatment to continue. Many families reacted like Emma insisting everything must be done to sustain their relative’s life: 

‘There was absolutely no thought about it – she has to live, this person has to live. … And it is the naive notion that you never know what would happen. Even though there was obviously nothing could happen, that she was never going to get better – but there was no question that you just do everything to keep that person’. 

Families often wanted the person to ‘have a chance’ and/or believed they were ‘a fighter’ who would defy the odds being suggested by the doctors and make a meaningful recovery. Bob said of his son (who eventually died while still in a vegetative state): ‘Most of us thought, "he’s strong, he can do it!" - if anyone could have done it, he could have done it’. Kate (whose husband was vegetative or possibly minimally conscious at the time of interview) commented: ‘You think, ‘well this is [name] – you don’t know him; he’s strong, he’s a fighter, he won’t let this stop him.’ Family members could simply not face the thought of losing the person or being involved in a decision to allow their death. 
Looking back at this time some families were positive about the stance they had taken (for more see ‘Recovery’).
Reflecting on how things might have been handled better most families felt the emergency interventions had been appropriate. Some thought the doctors should have either given them more information to inform their decisions, or made a different decision regardless (including switching off machines in the face of their own protestations at the time).
We did not talk to people whose relative had regained full consciousness and had a ‘good’ recovery after treatment – which is what the clinicians will be aiming for. The families we spoke to remembered intensive care from the perspective of those who now know that their relative has survived, but with catastrophic brain injuries. 

For both families and clinicians hindsight can make a difference – a crystal ball would make decisions in ICU much easier – but choices often have to be made without the benefit of certainty. All people can do is try to take into account what the patient themselves would have wanted and consider their ‘best interests’ (including, for example, whether the patient would have rejected life-saving interventions given the range of possible outcomes or whether they would value the chance of life at any costs).

Medical ethics is clear. Doctors should not provide life-prolonging treatment when the person’s injuries are so bad that is not in the patient’s best interests to be kept alive. Many people are allowed to die every year in the ICU because doctors decide to withhold a ventilator, or not to do surgery. When doctors provide life-prolonging treatments in the ICU it should be because, weighing up what they know about the clinical situation and what family and friends can tell them the patient’s own values and beliefs, they believe that the person will recover to a quality of life that they would value. 

Surveys show that most people do not want to be kept alive in a vegetative or minimally conscious state. When someone is given life-prolonging treatment in the ICU only to survive, long-term, in a vegetative or minimally conscious state, this is often because something has gone wrong with the decision-making in those early days, but sometimes even with a good decision making process the outcome can be something nobody would have wanted.  The outcomes after severe brain injury are very difficult to predict and most ICU doctors know of one person among all the thousands who did recover, against all the odds. They are trained to save life and (like families) they may hope for a positive result, however unlikely. They may also be swayed by families who, as we have seen, rarely understand what the possible outcome could be and can be powerful advocates for keeping the patient alive even when doctors think otherwise. In an emergency situation these are hard decisions to make. The problem is that allowing death in the ICU – even when there is still some uncertainty about the likely outcome for the patient - can be straightforward (when a patient cannot breathe on their own for example). But allowing death months or years later can be much harder, both for the family and possibly for the patient too. 

For more see ‘Decision-making: the legal situation and clinical practice’ and also ‘Family experiences of decision-making’.

Last reviewed December 2017.
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