I’ve been asked this a lot recently – particularly after recent publicity about a woman named Brenda, whose advance decision was ‘lost’ by hospital staff for well over a year. During this time she was admitted to hospital after a stroke which left her unable to walk, talk or swallow. She was fitted with a PEG* device so that she could be fed through her stomach. She was then moved to a nursing home, where staff reportedly put mittens on her hands because she was trying to remove the device.
Best Interests: What About Quality of Life?
All this may well have been in Brenda’s best interests: it certainly kept her alive. But when her advance decision was finally unearthed among her notes, it changed matters completely. She had decided, before losing capacity, that there were certain treatments she wouldn’t want if she lacked capacity to consent to them – and of course ‘capacity to consent’ is also ‘capacity to refuse.’ Treatment such as clinically-assisted nutrition and hydration (CANH) may keep a person alive, and this might be really valuable to enable the person’s health to improve. But we do sometimes see the kind of approach to treatment, particularly of the elderly, that seems to value ‘life at all costs’ ahead of any thoughts about the quality of that life. Brenda used the MCA to make it illegal to give her certain treatments she would not want, and CANH, delivered through a PEG device, was one of them.
Trump Card: An Advance Decision
An advance decision to refuse treatment is the only part of the Mental Capacity Act (MCA) that ‘trumps’ best interests. This is because the MCA says we can all make decisions that other people think are unwise, as long as we have the capacity to do so. The MCA gives us the power to refuse, with capacity, any specific treatments that might be suggested for us when we lack capacity to make that decision for ourselves. And it’s our choice – which, if we lack capacity to make that decision, won’t be the case otherwise.
So how do I go About Making an Advance Decision?
It’s pretty simple: there are no forms. You write in your own words what treatments you’d like to refuse, in which circumstances, if you lack capacity to decide yourself in the future. (You don’t even have to put your advance decision in writing, unless you are using it to refuse life-sustaining treatment! Mind you, given what happened to the woman whose written advance decision was ignored, I recommend that you encourage people to put them in writing.)
You do not need to discuss what you propose with your GP, though it might be a good idea to check out whether you’ve explained clearly enough the nature of a treatment you might refuse.
Step 1: Think about the future, and what you’d be horrified to be subjected to if you lacked capacity to decide. For quite a few people it’s being forcibly resuscitated if their heart stops: they make advance decisions refusing cardio-pulmonary resuscitation, or CPR. Somebody else might just say, ‘I had my ears syringed once and hated it; if I lacked capacity I definitely don’t want someone to decide it’s in my best interests to have my ears syringed!’
Step 2: Write it down, in your own words. You can’t use an advance decision to refuse ‘basic human care’, such as being kept warm and clean. You also can’t use it to refuse admission to residential care; it only applies to treatments regarded as medical – though these do include CANH. If you are using the advance decision to refuse life-sustaining treatment, you must put this in writing, with a statement that you want it to apply even though it may put your life at risk; you must also sign the document, again only if it’s about life-sustaining treatment, and have your signature witnessed.
Step 3: Remember it can only be used to refuse treatment; so, take out any requests for specific treatments you’ve put in! A relative of mine made an advance decision refusing treatment with antibiotics for chest infections, if she’d not recognised her loved ones for at least three months, adding a note that she always found champagne the best medicine for chest infections so please could she have that instead. She was advised to create a ‘statement of wishes’ and put the ‘I’d like champagne whenever I have a chest infection’ in there. It won’t be legally binding, but might be a hint to relatives and friends.
Step 4: Make sure your GP practice has a copy and highlights it in your notes; take a copy with you if you’re admitted to hospital. Do tell your family: there may be a difficult conversation because they won’t like to think of you not having every possible treatment however unlikely it is to be any use. But if they don’t know, like Brenda’s daughter, they can’t make sure your decision is honoured.
Make it Easy to get it Right
You can find out all about advance decisions to refuse treatment in the MCA code of practice, chapter 9 https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice or from https://www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx
The hospital Trust that so failed Brenda admitted liability and agreed to pay £45,000 in an out-of-court settlement. It accepted that it failed to act in accordance with her advance decision to refuse treatment, and failed to store the record of this decision properly. It now highlights any advance decision to refuse treatment on the front of patients’ notes.
This case, and the harm done to Brenda by giving a treatment she had lawfully refused, is a wake-up call to all health and care providers. Make sure you find out about any advance decisions, explore before they’re needed what treatments they apply to, and whether they’ve been properly made. And, most of all, tighten up on your record-keeping, and your communication with people using services, their relatives, and your fellow professionals.
*PEG stands for Percutaneous Endoscopic Gastrostomy