Acting in your Loved Ones ‘Best Interests’

If like me you are the parent of a young adult with severe learning disabilities you will be familiar, I am sure, with the term ‘best interests.’ But what does it actually mean?

We would all like to assume that parents make any decisions about their children’s care in their best interests. That parents make all choices because it is the best choice for their child in any particular circumstance i.e. choosing a school. In an ideal world everyone would want the best for their children, I know there may be a few exceptions and we generally hear about those rare cases in the media but here I am referring to the norm.

I have gone through my sons’ lives making what I hope are the best decisions for them, be it getting their vaccinations when they were babies to protect them against illness, or choosing for them to attend a good local nursery so they can benefit from socialising with others, right through to choosing what they ate or were dressed in for the inclement weather. We make those decisions consciously and sub-consciously all the time. When you have a child who lacks mental capacity to make any decisions themselves it all gets a little more complicated. 

Mental Capacity

Let’s break this down a bit and look at mental capacity first. Lacking in mental capacity or not having capacity, as it is often referred to, means that a person is unable to make decisions for themselves. In my son James’ case, his severe learning disability means he is unable to make the most basic of decisions himself. Without guidance he may leave the house on a cold day in a t-shirt, if food options were put in front of him he may choose something he could choke on or he may sit up and play on his iPad all night. These are day to day choices that myself and his carers have to make for him to keep him safe and healthy. You will find many definitions of mental capacity online but they amount to the same thing. 

You will also find a great deal of information online about the Mental Capacity Act 2005. Not to be confused with the Mental Health Act 1983. They are two different things but, in some cases, the two acts will affect the same people. 

The Mental Capacity Act is there to protect the most vulnerable in society, like James, and it applies to individuals over the age of 16 years. The act gives clear guidelines (Code of Practice) for those who work with and care for people who are unable to make decisions themselves. There are 5 main principles set out in the act and principle 4 relates specifically to ‘best interests.’

In order for someone to make a decision in someone else’s best interests it first has to be established that the person at the centre of the decision being made is ‘lacking in capacity’ to make that decision themself. So how is that done? They would have what is called a Mental Capacity Assessment. In theory anyone can do a mental capacity assessment however ideally it should be someone appropriate to the decision in question depending on whether the decision is related to finance, health or welfare. For example, James recently had a mental capacity assessment caried out by his GP. The GP met with James and one of his care staff and took a good amount of time talking with James’ staff and interacting with James. It was clear to him that James lacked capacity. The reason for this assessment was because we needed to have a Best Interests meeting to discuss the possibility of taking bloods from James and this was the first step. 

Unfortunately, even in a situation like ours where James will always lack mental capacity, these assessments have to be carried out repeatedly and James has had several. Another example of this was when the Department of Works and Pensions came to assess James for mental capacity. This was necessary in order that I could be made an appointee to manage James’ benefits. The reason for repeating mental capacity assessments is because some peoples lack of capacity may be temporary, for example in the event they have had a stroke, or a person’s capacity maybe fluid in the instance of mental illness. There are a few decisions that can never be made by other people on behalf of someone who lacks capacity. These are consenting to sex, marriage, divorce, adoption and voting.

Our Best Interests Meeting

Having established James’ lack of capacity we recently had a Best Interests meeting to discuss the options available to us in taking bloods from James if everyone was in agreement. Our meeting was chaired by our community learning disability nurse and also in attendance was James’ GP, the manager and care staff from James’ home and myself. James has been having some gastric issues for many months, in fact it has been an ongoing problem throughout his life but it has got worse over the last year or so. He clearly has days when he is pale, quiet and not himself, his bowels behave somewhat erratically and we are unable to establish whether he is in pain. Aside from this he also has times when he is excessively tired and falling asleep throughout the day even when he appears to have slept at night. I am also aware of several issues to do with electrolytes, kidney function, liver function etc that are a concern for people with Wolf Hirschhorn Syndrome and so not having had bloods for many years it was agreed in our meeting that it was now in James’ best interests to investigate these matters for the benefit of his long-term health.

Having agreed that blood samples would be beneficial, we looked at how this could be done. When making a best interests decision, guidelines state that where appropriate the least restrictive option should be considered. It was decided that short term sedation would be preferable and the least restrictive option and that this could be done at James’ home. There was some discussion around the pros and cons of doing it at home as opposed to the surgery but it was felt unsafe to transport James if he were sedated.  

Understandably, with the many complexities James has and his history of heart surgery the GP was very cautious and has taken advice from the psychiatrist about which sedative to use. Unfortunately, on our first attempt it was clear that the sedative had no effect on James. We attempted again two weeks later with double the dose and still this had no effect. Where we are currently is that we have now attempted three times to sedate James but with no effect and a date has been made to try again in a couple of weeks time. It is both frustrating and concerning to me that we haven’t yet been able to successfully get bloods from James and it may well be that we have to go back and reconsider trying a different type of sedative. I am not enjoying the process at all but having said that, it is still my belief that it is in James’ best interests to see if we find any underlying reason for the issues he is having.   

You will find a great deal more information online about mental capacity and best interests. In some circumstances it is a very complex issue and this is just a very brief outline from research I have done and from my own experience with James. As always, we would love to hear of your experiences too.