Family Experiences of Vegetative and Minimally Conscious States

Hospital re-admissions

Patients in vegetative and minimally conscious states often end up being re-admitted to hospital even after they have moved into long term care, because of issues such as infections or operations (e.g. to try to address spasticity or deal with a feeding tube). Whereas a specialist care home offers staff with a combination of skills (and equipment) to support these patients, their highly complex needs can rarely be addressed within any single hospital department. On many wards staff have never encountered anyone in a vegetative or minimally conscious state before. Hospitals were repeatedly described in interview as ‘dangerous places’. Going into a hospital with a severely brain-injured relative was dreaded, even when it was thought to be in the patient’s ‘best interests’. (This is one reason why sometimes decisions are taken to keep patients comfortable in their care home, rather than transfer to hospital).

People talked of patient’s notes lost in transit, best interests decisions that had been put in place in the care home being ignored and their vulnerable relatives having to be admitted via A&E because there was no system to deal with them. Patients were sometimes left without their medication or without the nebuliser they needed to help them breathe. Some were put on trolleys where they were at risk of falling and subject to unexplained changes in medication. 

Relatives often had to show staff how to set up equipment (or go back and forth to the care home to find compatible parts, such as tracheotomy tubes) and sometimes found they had to manage aspects of the patient’s care themselves - ‘So you end you don’t dare leave him’. This disruption could seem distressing to patients – some of whom became agitated or moaned. Family members, after struggling to sort things out with the hard-pressed healthcare staff, often found that all arrangements disintegrated as the patient was moved between departments or wards. 

Lack of knowledge (and sometimes failures in basic observation) led to ludicrous situations:
  • One woman was advised that her sister (who had been in a minimally conscious state for years) ‘seems to showing symptoms of a blow to the head’. 
  • Another was informed, as he returned to the ward, that everything had been explained to his (possibly vegetative) brother – and he should have a chat with him.
  • A third person, who had explained that her daughter was in a vegetative state, was then asked if her daughter could walk by herself or would need a wheel chair.

Hospital re-admission places huge stress on the family and their relative, and patients sometimes returned to care homes with problems such as bedsores or hospital acquired infections. Mark comments that his experiences ‘colours your judgement - “Should he go to hospital or not?” Because you’re thinking, oh, unless he’s at death’s door, probably not’ to which Helen responded: ‘Because even if he isn’t [at death’s door’], if he goes to hospital, chances are he will be by the time he comes out!’
Other families talked about how best interests decision were ignored. For example one reported that DNAR (Do not Attempt Resuscitation) had been added to her relative’s note in the hospital setting by staff who did not know the patient, over-riding careful best interests discussions between the family and the long-term care team. Family members were also sometimes put in the position of challenging decisions to admit, or not to admit, a relative to intensive care – and sometimes they were able to lobby to over-turn a best interests decisions not to give treatment because of their desperate pleas at the time. 
From these family reports it seems that there is a need for better co-ordination for the care of these patients as they move between care homes and hospitals and better support for patients and their families in the hospital environment. It also seems that there is a need for improved understanding of ‘best interests’ decision-making among staff working outside specialisms where they regularly work with patients lacking mental capacity.

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