Deciding about surgery when advanced dementia means a person can’t consent

Question:

Can Mum have a hip operation? Her advanced dementia means she can’t give informed consent and there’s no health and welfare LPA?

Answer:

Whether or not your mum can give informed consent, she can have an operation if that’s the right medical decision for her. 

This is still true if she hasn’t set up a lasting power of attorney (LPA) for health and welfare, which would have appointed someone to make decisions about care and medical treatment on her behalf.

Who decides about consent and how? 

If someone can’t give consent for themselves and there’s no LPA for health and welfare, it’s their doctors who’ll decide whether to operate. 

Your mum’s doctors would need to think about what’s in her best interests and look at her medical history. 

They should still listen to your mum’s views if she’s able to express them. This includes wishes previously recorded in her medical records, or if she set these out in an ‘advance statement’ about her future care and treatment. 

The doctors should also talk to you to see what you think, since you may know her wishes and what she’d want if she could decide for herself. However, they should not ask you to make the decision. 

The doctors should also check if your mum has made an ‘advance decision to refuse treatment’ and if it covers this operation. These are rare, but they’re different from an advance statement. If she’s made one in the correct way, then it must be followed – it would be treated as her decision.

What if you disagree? 

No one has the right to demand treatment that’s not medically appropriate. There could be good medical reasons why the doctors think the operation is not the best thing to do. 

However, being unable to give informed consent is not a reason in itself for someone to be denied surgery.

If your mum’s not being given the opportunity to have the operation simply because she’s unable to consent or because she has dementia, then that may count as unlawful discrimination. 

If you disagree with the doctors, you could ask for a second opinion. You don’t automatically have the right to a second opinion, but a request for one should be properly considered. The hospital’s Patient Advice and Liaison Service (PALS) team could help you with this – ask at the hospital reception desk to contact them. 

The PALS team can also help if you want to make a complaint on behalf of your mum, which is another option.

Further information

• For information about decision making in England and Wales, see Dementia and the Mental Capacity Act 2005 and Dementia, advance decisions and advance statements. 
• The law is different in Northern Ireland, but decisions over someone needing an operation work in a similar way. Rather than a PALS team, you could ask for support with a complaint from the Patient and Client Council. For more about decision making in Northern Ireland, see Financial and legal tips for people living with dementia in Northern Ireland.