It’s a real puzzle when someone who lacks capacity to understand risk is nonetheless determined to do something where you can see the risk of harm to them. There are no easy answers for how to proceed, but I’d like to give you a framework for your decision-making, and a couple of true stories.
What Does the Law Say?
The Mental Capacity Act (MCA) says that just because someone makes a decision that other people think is ‘unwise’ or ‘eccentric’ (polite words for ‘silly’ or even ‘barmy’) this can’t be used, by itself, as a reason to decide they lack capacity for that decision.
The code of practice, however, does admit that there may good reason to be concerned and to question the person’s capacity if, as they put it, somebody:
- Repeatedly makes unwise decisions that put them at significant risk of harm or exploitation, or
- Makes a particular unwise decision that is obviously irrational or out of character
The framework for deciding what to do must be the MCA
Step one: if the person has capacity they can do anything – however stupid others may think it. I don’t want to pry, but I bet everyone reading this has made unwise decisions with capacity: anyone who’s ever experimented with smoking or alcohol in the teeth of the evidence, or driven too fast, or got into a dodgy relationship that made their mother roll her eyes… well, you get the picture. We shouldn’t ask for more sensible decision-making from someone living with a disability or illness than we expect of ourselves!
Step two: if the person lacks capacity for this decision, even with all the help you can give, you need to move on to working out what is in their best interests. I’ve written a lot about this, and the MCA Code of Practice is really helpful, with chapters on how to maximise someone’s capacity wherever possible, and the factors you have to consider when making a best interests decision: see https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice chapters 3 and 4.
The Balance Between Risk and Happiness
This is where decisions involving risk get hard. Judges identify something they often see among health and social care professionals as the ‘protection imperative’: we need to recognise that a big motive when we go into this kind of work is the wish to keep people safe. Yet sometimes this completely worthy intention makes life miserable for the person who uses our service.
Peggy Ross was an elderly woman living with dementia. Her care home and her social worker were very worried that Peggy was planning to go on a cruise ship holiday with her man friend, Norman. Although Peggy and Norman, who had been close for many years, were booked on the ship, the Local Authority arranged a DoLS authorisation to stop Peggy going.
Peggy and Norman challenged the authorisation, and it went to court as an emergency, since the ship was about to sail. Everyone – except Peggy, Norman and the judge – thought that Peggy lacked capacity to agree to go on the ship; everyone – except Peggy, Norman and the judge – thought that there were huge risks to Peggy going. The main risk perceived by Peggy’s care team was that Norman might have too much to drink to notice Peggy leaving the cabin; when confused, she might, they were sure, ‘go over the side.’
This gave no weight to the fact that Norman had strategies to ensure she didn’t leave their cabin during the night; and that they’d gone on about 20 similar holidays, including on the very ship they were booked on; or that, actually, Norman was a non-drinker.
Look For Reasons to Let Someone Do What They Want
The judge said it looked as though they were trying to find reasons why she shouldn’t go on the cruise, rather than looking for reasons why she should have what might, given her increasingly poor health, turn out to be her last holiday with Norman. He decided that the holiday was definitely in her best interests, even if she lacked capacity to make the decision herself.
Interestingly, the judge also questioned the assessment that she lacked capacity: this wasn’t a life-changing decision to agonise over, but a choice about whether to go on a holiday, with a loved and trusted companion, of a type she’d gone on many times before. He felt that the assessment didn’t take account of this, so it wasn’t proportionate. Peggy and Norman went off on their holiday and, no, she didn’t fall overboard but had a great trip!
It’s a short judgment and very wise: do read it:
Protection or Happiness: Getting the Balance Right
I can’t do better than quote a famous judge, Sir James Munby on the importance of getting this balance right:
‘Physical health and safety can sometimes be bought at too high a price in happiness and emotional welfare. The emphasis must be on sensible risk appraisal, not striving to avoid all risk, whatever the price, but instead seeking a proper balance and being willing to tolerate manageable or acceptable risks as the price appropriately to be paid in order to achieve some other good – in particular to achieve the vital good of the elderly or vulnerable person’s happiness. What good is it making someone safer if it merely makes them miserable?’
How Best Interests Can Look in Practice: Tony’s Tale
Tony has Down’s syndrome and loves his job in a coffee shop. His workmates are planning tandem parachute jumps for charity, and Tony really wants to be part of this. However, as part of his condition, he has a very unstable joint in his neck, at the top of his spine. This means a severe jolt could literally break his neck and kill him. Tony’s capacity to make the decision to do the jump is assessed; he cannot understand the information about the very serious extra risks to him compared with his work-mates, so he is assessed as lacking capacity to make this decision.
After a lot of discussion, it is decided that Tony should go up in the plane as part of the group, do the count-down for everyone as they jump out of the plane, and then as a special treat sit next to the pilot for the excitement of the landing. There is still the minor risk of a bumpy landing, but his support team and medical advisors think this is a risk worth taking, especially as he wears his supportive collar.
Tony collects more sponsorship than anyone else in the group, and has a great day, with photos to remind him of it.