Family Experiences of Vegetative and Minimally Conscious States

Decision-making: the legal situation and clinical practice

According to the law in the UK, family members are not responsible for making medical treatment decision on behalf of another adult. 

Even if you are ‘next of kin’ (a parent, partner, sibling, close friend etc.) you are not ‘the decision-maker’ – and have no power to consent to, or refuse, medical treatment on their behalf. The only exception to this is if legal action has been taken to give you such powers (For further explanation see the leaflet: ‘Serious medical decisions… and the role of family and friends’ on the ‘Resources’ page).

When a patient cannot make decisions for themselves, and they have not previously written an Advance Decision (see ‘Reflections on own end of life wishes’) it is usually the responsibility of their treating clinician to decide what to do. The clinician should make ‘best interests’ decisions – informed by the views of family and friends about what the patient would have wanted. 

It is the clinician’s responsibility to ensure that family members or friends are appropriately consulted – so that the clinician understands the patient’s approach to life, and can factor this into his or her decisions on the patient’s behalf.

Having asked family and friends about what the patient might have wanted – it is then the clinicians’ responsibility, not the family’s, to decide whether it is right to continue or discontinue different forms of treatment. If the decision does not lie within the clinician’s responsibility, they refer it to court (e.g. the clinician can not decide to withdraw the feeding tube, that decision lies with the court).

A few of those who spoke with us reported examples of what seemed to be very good practice. For example, Hannah explained how, a few days after surgery for cancer which left her relative in a severely brain injured condition ‘the consultant called us in…[and] told us about the brain scan and about the 10 to 20% chance of recovery’, and wanted to understand what [the patient’s] wishes might be in this situation’. Hannah was asked: “if [he] was sitting there next to you, how do you think he'd feel? What would he want? “Hannah was able to describe her relative’s views and gave the consultant a letter he had written. Clear lines of communication were established and there were regular meetings to try to ensure that all decisions took the patient’s prior expressed wishes into account. Hannah recalls ‘best interests’ meetings as well organised, giving her a central place in the discussion, with good support. She describes one such meeting as follows:

“Cousin [name] and his wife came. There was the surgeon. There was an advocate from the advocacy services. There was the ward sister, the ward manager, [and] the specialist nurse from Macmillan nurses – she's been liaising with me all along. And there was a solicitor's representative. I was thinking, ‘they're going to try and say, right, we're going to put this tube in his stomach, you know, regardless of that [what he wanted] because it's the only way forward’ so that we can – you know, we were thinking they're trying to get him off their premises, it's a valuable bed. And they probably want to put him into a nursing home. And it wasn’t like that at all. They were actually really, really good. They were saying, ‘So where do we go from here?’ And I said, he would not want to be [kept alive]. […] And there was a discussion about the tube into his stomach, but apparently they had been thinking of doing this and the staff at the hospital said ‘no, we can't do that because it's on there [the letter], he does not want it. So we're not doing it’. And this was why this meeting was called, to find out what the situation was, what they could do, what they couldn’t do, and that was why the solicitor was there."

Hannah feels the eventual outcome was what he would have wanted in the circumstances - he was allowed die some months later, still in a vegetative state. Hannah concludes: 

“I can't commend them the clinical team enough, I think they're excellent. They have really tried to take everything into consideration and they were very keen to follow his wishes”.

Such descriptions are gold-standard accounts of best interests decision-making compliant with the Mental Capacity Act – with the patient’s wishes, and a person who knew them well, having a central place at the table, with good support to help ensure the patient’s views were heard (e.g. with an advocate for the patient and a liaison nurse for the relative, as well as having other relatives present). The ‘best interests’ meeting was conducted in a timely manner (within days of the initial injury) and repeated regularly in light of developments, and there appears to have been clear identification of decisions to be made and options considered in accordance with the law.

However, our research found that sometimes families feel they were not given the opportunity to represented the patient’s point of view. They feel that the family were not given the time to talk about this, or that they were not asked clearly enough and given guidance to help them understand what they were being asked. 

Sometimes clinicians may fail to communicate the legal situation clearly – certainly very few families understood the legal situation, many believing that they had decision-making rights as ‘next of kin’. It may be that clinicians are sometimes unclear about their own role, or do not want to disempower families in such a desperately difficult situation – or perhaps they tried to let families know the legal position, but the family could not take it on board at the time. In our research it also seemed that some clinicians had even asked family member to sign a ‘consent form’. This is a meaningless gesture as if a family members refused to sign the clinicians could still overrule them (see ‘Family experiences of decision-making).

Making best interests decisions for patients who, by definition, can not speak for themselves is a very challenging process. For a guide for clinicians about how to run best interests meetings see ‘Resources’.

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