We are publishing a new book and a process that normally takes two years – we have done it in six months. The book is about covid-19 and time is of the essence. Closing date for submissions has past and checking the final proofs. I am glad to say that I made through to the other side of the week! So I feeling quite calm but if you think I’m ranting on and on you know the reason why.
What did we do before the Mental Capacity Act in 2005 (became statute in 2007)?
I have been teaching Mental Capacity (MCA) since 2000 with the guidance and support of Dr Theresa Joyce. When we started (down to my interpretation) some people looked at us like we were talking a foreign language and couldn’t believe that parents couldn’t give consent for their adult son or daughter who has a learning disability. We also got so many examples when keyworkers from residential and supported living services signed consent forms for activities like going horse riding or more serious medical decisions. Even before 2007 this was unlawful. Consent issues came under ‘Common Law’ and guidance was produced by the Department of Health in 2001.
What efforts should you make to gain consent?
Principle two of the MCA is:
‘The right for individuals to be supported to make their own decisions - people must be given all appropriate help before anyone concludes that they cannot make their own decisions’
Some years ago I was completing an emergency Deprivation of Liberty Safeguards (DoLS) application. As part of this process I was required to do a mental capacity assessment. I knew the gentleman in question and knew that from his level of learning disability and what I would call ‘classic autism’ that he was not going to understand the information. I tried to get him to recognise where he was with the aid of a support worker. We didn’t get go to the second mark of the test ‘retain’.
I was asked how the assessment went in a meeting and I told them what my conclusions were. One professional told me that I should have used loads of photographs and aids to convey the information. But this gentleman had no speech and didn’t operate at a one word level. As usual (prior to the stroke) I just kept quiet. But in reality you must decide when to draw the line, realistically would using any aids support this gentleman to understand or would continuing this assessment cause him distress and to self injure? Would spending an hour or even a morning be beneficial to him or would my time be better spent on assessing someone who has a possibility of passing the test and allowing this gentleman to spend time with his sensory board? I will let you decide.
What happens if the advantage side of the balance sheet outweighs the disadvantage?
I personally think that the balance sheet for best interests decisions is one the most simple but extremely useful tool. I use this tool every time when I am the decision maker and advise other decision makers to use it as well. It is also recommenced in the Code of Practice. Here's an example of a woman who lacked the capacity to decide whether or not she should have a mastectomy - the best interests balance sheet
This is made up case but if it was real we would conclude that it is in her best interests to have a mastectomy.
Dr Joyce and I have been using a very interesting case study for the last twenty years. A capacity assessment has already been completed and in the balance of probability she lacked capacity. Now only the Court of Protection can make such a decision - should a pregnant woman who lacks capacity in be given a termination.
We ask everyone to split into groups of five and each has the same role play but each has exactly one individual item that they only know. That it is what the think should happen before the best interest meeting and what decision they would make. Roles include the mother, obstetrician etc. But during the role play they can change their minds if given evidence. We allow them 25 minutes to do the role play, complete a balance sheet and then vote yes or no to the termination. When using the balance sheet there are far more advantages than disadvantages. Then we ask what they voted and 9 out of 10 groups always vote against the termination. They haven't used the information on the balance sheet which they completed. This is making a decision on your own values and what you would like to happen rather than what is in the best interests of this woman.
A few important parts of the role play that get to read:
She has a severe learning disability
She does not know that she is pregnant and doesn't understand what sex is
They do not know who the father is but they guess that it is someone from the day centre
Because she lacks capacity to agree to have sex - what happened to her in law is 'rape'
She would likely find giving birth very painful and would not understand what is happening to her
Of course the Courts are final decision makers and the best interest meeting is just an advisory meeting. The Court concluded that in balance of probability it in her best interests to have a termination.
Next blog will be on who are the decision makers, what are the outdated approaches to assessing capacity and why do we still see some (minority) examples of this happen.