To think you should tell someone that they have a terminal illness even if they have learning disabilities?

[Pissedoff22]

This is probably not the best place to discuss this but I don’t feel like I can talk to anyone and I really need some advice. The lady in question has cancer and learning disabilities. She manages to be quite independent despite her disabilities, and has a basic understanding of life and death. She doesn’t know she has cancer and that it is terminal, and they’re not going to tell her. I just don’t know how I feel about this, it doesn’t feel right. Please be kind as I have looked after this women for many years and I am devastated. She’s not even very old.

“ Actually you do have to agree with it. It's your job to agree with it. I understand that you don't like it, but you are not tje decision maker here.”

Her job is to care for and advocate for her client. Her compassion is shining through here and I wish that all carers cared so much. If she feels that this decision is not best for her client she should raise it. If she is the main long term day to day carer then she may well know the client best and a proper best interests meeting would have included her. The fact the main carer was not included in the meeting raises suspicion it was not done correctly.

@Cbtb I actually agree with you here. If she is the person doing the Fay to day to day care and has the closest relationship with the lady, has known her a long time, she should absolutely have been involved in the best interest decision.

I might also argue that she could also have been involved in the capacity assessment. Everything possible is supposed to be done to try and find that the person DOES have capacity. In many cases, that means the person asking them questions and having exploratory conversations should be someone they already know well, are comfortable with, who knows how to communicate with them and how to understand their communication in return. It should take place at the time best for the person, in a place they know and are comfortable, in order to get the most accurate picture of that persons understanding.

My son is autistic. If a stranger tried to explain something complex to him like this he would not engage, would go mute. The assumption could well be made that he did not understand and therefore lacked capacity. But with someone who knows him, who he trusts, he would engage and respond and be much more able to accurately communicate his level of understanding.

This is why I suggested she request to see the documentation around the decision. If it is lacking then she can then challenge it

@starfishmummy

It may not be my decision but that doesn’t mean I can’t ask question. It may not be up to me but that doesn’t mean I have to agree with it.

Actually you do have to agree with it. It's your job to agree with it. I understand that you don't like it, but you are not tje decision maker here.

No, the job of a care or support worker is not to follow orders blindly and just do what they're told, it is to provide person centred care, which includes all aspects of someone's life. We are expected and encouraged to question things that we don't agree with, or aren't sure of, because we are not just there to wipe bottoms, make cups of tea and for a trip to the shops, we're there to listen, observe and advocate for the person(s) we care for and act in their best interests in everything we do. We're encouraged to ask questions and should do so. In this case the person is unlikely (imo) to come to harm if the carer doesn't question that decision, but there are plenty of instances where they could come to harm when a decision is made, and that harm can be prevented by carers questioning decisions and actions that they don't feel reflect the best interests of the person they are caring for - in a professional manner and through the proper channels, the manager being the first step.

Managers and HCPs should be open and transparent in these circumstances, it's not about heirachy or who's above who and who's decision it should be in the proved absence of capacity, it's supposed to be a team effort to give someone the best quality care that can be given.

This kind of attitude is why abuse can happen, because the carer is ignored when they have vital input that could lead to a better decision for the person they're caring for being made.

Would it help in anyway knowing? Maybe the view is her quality of life will be affected by knowing what was going to happen? What if the remainder of her life is lived in distress and fear? Or she could believe she’s just a bit poorly but otherwise get on with her life? I’m sorry OP you are obviously really close to her and I’m sorry this is happening.

*Many had poor concept of time for example. They would have been asking every day when they were going to die, is it today, is it tomorrow?

Well, if I have been told I was going to die, but not been given or fully understood the prognosis, I might have some of the same questions..*

When my mother was dying of cancer, she also had premature dementia (she died relatively young). We had her in a care home as no other places were suitable for her, and we couldn't care for her at home. I would go and see her every day. She couldn't understand why she was in so much pain, but this was because her spine and hips had crumbled away. I'd have to explain to her, every day, that she had cancer. And she'd look at me in such confusion. I never said she was dying, but she knew it, and she never asked. She just wanted to the pain to go away, and soon it did.

If I could change anything, I wouldn't have kept telling her, day after day, that she had cancer. I'm not sure if she fully understood, and the impact has never left me.