I’ve come across a situation recently that I want to share with you. This particular situation concerned someone living with dementia, but the principles that come out of the events I’m going to tell you about apply to lots of other users of services as well.
Jimmy* has lived in his current care home for over five years, during which time his dementia has progressed to a point where he no longer remembers his satisfying career as a teacher, or recognises his old friends. It’s evident to everyone, however, that he is very happy and contented in his care home: until a few months ago, when his speech deteriorated quite quickly, he used to tell everyone that he was staying in a really excellent hotel.
But Jimmy’s solicitor, who acts as his deputy for financial matters, is aware that Jimmy’s funds are running out fast, and that this home’s fees are a lot higher than their local authority will pay. Nobody wants Jimmy to have to move, but it appears inevitable. Jimmy himself is oblivious to the stark choices ahead of him, but no one wants him distressed by a move.
You might be surprised to know that there’s no definition of ‘best interests’ in the Mental Capacity Act (MCA) – or even in the code of practice. That’s because the MCA focuses on the individual, with all their history and personality. Probably not two of us would have exactly the same triggers that would make us happy, or conversely that we would find unendurable. So the MCA and its code warn us to put aside any thought about what we might want in these circumstances, and give a check-list as a guide to how we must go about making specific decisions for people, when we’ve made every effort to enable them to decide for themselves.
Use the check-list
The best interests check-list, [here, see chapter 5 ]which must be used in reaching a decision except in an emergency, stresses involvement of the person and requires the decision-makers to give weight to their wishes and feelings.
Lady Hale, now President of the Supreme Court, has said, in the context of medical treatment [here], that ‘The purpose of the best interests test is to consider matters from the patient’s point of view.’ She went on to warn, though, ‘That is not to say that his wishes must prevail, any more than those of a fully capable patient must prevail. We cannot always have what we want.’
Jimmy no longer communicates in words, but his smiles and his demeanour make it clear how happy and settled he is. And we know what his views were in the past. When he still had capacity to recognise his increasing care needs, he actually selected this home for himself, since he was so moved and impressed by how they cared for his cousin.
His dementia was progressing fairly fast at that stage, and he worked out that he could pay for at least four years in this home; he had been told that his prognosis was probably ‘a couple of years’ so anticipated that the money would be comfortably enough for his lifetime.
This was such a big decision facing Jimmy that it was right to hold a specific best interests meeting, with all those involved, to make sure that all the options were identified and considered.
It soon became clear that Jimmy’s options were cruelly limited. He could not afford to continue paying the fees to enable him to stay in his current care home. The local authority would not pay a top-up, since it would set a precedent and be inherently unfair to benefit one individual over others. Jimmy’s only nephew is disabled and cannot afford an on-going commitment to his uncle’s care.
The only remaining option was to move Jimmy to a care homes that would contract to meet his care needs within the budget allocated by the Council. In practice, this came down to a single large care home, where a place was available in the dementia wing.
Dr. Jones got very upset. His point, forcibly made, was that this meeting was to find an outcome that they could all agree was in Jimmy’s best interests; it was clear to all of them that it was in his best interests to stay where he is so happy and so well cared for. Therefore, he said, he refused to agree any option that would predictably risk causing distress to Jimmy: he complained to the local authority in stringent terms, threatening them with Court action.
The ‘least bad option’
Dr. Jones was showing his humanity, but he was misguided. The rub with making a best interests decision for someone as vulnerable as Jimmy is that those making the decision can only choose from the options that are actually available. And the Courts always uphold a council’s right to make its difficult funding decisions, as long as they treat everyone fairly.
The task for the meeting was to check this really was the only option, and then to find ways to make the move in a way that would cause as little as possible distress to Jimmy. It was important to get Dr. Jones back on board, to remain as Jimmy’s GP if possible or liaise with his new one.
Jimmy’s current care home arranged with his new one that his named worker would go with him for the first week, to ensure that his communication was understood and his needs and wishes met. And Jimmy’s friends actually visit him more often, and their pleasure in Jimmy’s continued contentment is reassuring.
*Names have been changed