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.

Who is “they” - her carers, parents, doctors?

Yes, of course you're right. She has every right to know and for people to make sure that they tell her in a way she can understand.

If you know that she hasn't been told, are you in touch with her doctors? I think as her carer you absolutely should raise this with them.

I'm not really sure about this. Would she be able to tolerate and cope with the distress of a terminal diagnosis? Would it be kinder to wait until she's closer to passing before telling her (e.g. at the point when she is unwell enough to want to ask about death herself?). Would knowing her enable her to make better plans or would it just prolong her distress?

It sounds like you know her well though so perhaps you're right.

Maybe she wouldn't actually like to know if her understanding is limited. Presumably her doctors/carers have a fuller idea?

• Sorry that was supposed to say 'would knowing (not knowing her) enable her to make better plans or would it just prolong her distress'.

Does she have a welfare guardian with medical powers? If yes, then legally they consent to treatment but the person should still absolutely be given approp, well pitched medical info. If not, then it is not legal for others to make medical decisions for them.

I don't think that can be answered without knowing the extent of her disability.

The two questions that come to my mind though are

A/ Will telling her reduce her quality of life by causing anxiety and stress, thereby taking away whatever time she has left to enjoy?

B/ Will telling her be beneficial in some way in terms of allowing her to help choose treatment paths and give her the option of making a 'bucket list' etc or are these non options anyway?

I personally lean towards the thinking that her parents know her best and have made the decision they think will be in her best interest.

I’m not sure about this. It could be deemed as cruel to tell her perhaps. It may wreck her peace and life as it is and bring immeasurable distress. It may be better to wait. Are small children told that they are terminally ill?

I think that it depends hugely on her ability to function knowing the diagnosis. Whilst she may understand the basics of life and death that does not mean she can cope with a terminal illness diagnosis. Unless you think that her life will be improved by knowing or that she is being prevented from accessing treatment, I think you need to respect the decision of her family.

Thanks for the responses so far. It’s given me a lot to think about and I am open and interested in seeing it from the other perspective. For those that are asking, she has autism. Her understanding is limited but she has basic understanding. I don’t know, I think being told you have a terminal illness would be extremely distressing for anyone but I personally would still want to know.

I’m not sure who made this decision exactly, she was a brother who she rarely sees and that’s her only family. Her legal guardian is somebody from the council who’s never even met her. I think the learning disability team and doctors as the hospital had some input as well as our manager but they don’t really know her either. I’m just a carer. It’s such a bloody mess.

@cansu

I think that it depends hugely on her ability to function knowing the diagnosis. Whilst she may understand the basics of life and death that does not mean she can cope with a terminal illness diagnosis. Unless you think that her life will be improved by knowing or that she is being prevented from accessing treatment, I think you need to respect the decision of her family.

Very much agree with this, what good would it actually do anyway, sometimes ignorance is bliss, she clearly has been dealt a dreadful set of life cards and now terminal cancer on top of that, it’s not like she will need to get her affairs in order, make wills etc just let her be.

I think this totally depends on your relationship with her - if it's a family decision, and you are not a family member, then it isn't to do with you.

Whilst she might have a basic understanding of life / death, will she understand the complexity of her situation? Will people have to keep explaining it again and again (causing distress to her and them?)? Will it actually improve anything for her, or upset her?

Vaguely similar situation - when my relative was dying last year, we didn't tell them. They didn't have learning disabilities but were in the late stages of dementia. They didn't understand life / death or what was going on beyond a superficial level. They didn't gain anything from the knowledge, didn't understand and retain it and it didn't give them any benefit to know. It also meant we didn't have to explain twenty times a day, which would have been horrible for us.

Sometimes ignorance is definitely bliss OP.

I recall having a patient that had dementia.... and he was admitted for investigations into a potential cancer. He had no idea what was going on at all. It was awful. He had no family to say what should happen either way.

@cansu

I think that it depends hugely on her ability to function knowing the diagnosis. Whilst she may understand the basics of life and death that does not mean she can cope with a terminal illness diagnosis. Unless you think that her life will be improved by knowing or that she is being prevented from accessing treatment, I think you need to respect the decision of her family.

Can anyone really cope with a terminal illness diagnosis? How does her disability make her less able to cope than the next person I wonder? Even if you’re right I think these need looked at.

From your update, I’d be inclined to say no, she shouldn’t be told.

what good would it actually do anyway

Well if it was me then it probably wouldn’t do any good but I’d still want to know.

Okay, so if council has legal, financial, welfare guardianship she will have an allocated social worker. Your manager and that person are where to raise your concerns or ask to discuss your thoughts.

I came across this situation where the family of a person didn’t want him to know he had a terminal illness as they were concerned it would distress him too much. He was not learning disabled, but very elderly - no obvious dementia but relied on his wife to do most things. In the end, the doctors explained some of the ongoing issues with him (but not telling him explicitly that he had terminal cancer) and asked him what he would want to know. He said to just talk to his wife. They said that if he wanted to know more at any time, to ask them. I think people also have a right not to know if they don’t want to - it’s like getting tests for certain genetic conditions. Some people prefer to carry on and not know.

I tend to think many people would rather not be told. If she asks directly, that’s a different matter.

@TheDaydreamBelievers

Okay, so if council has legal, financial, welfare guardianship she will have an allocated social worker. Your manager and that person are where to raise your concerns or ask to discuss your thoughts.

I wish my manager would return my calls.

You keep saying you would want to know. You don't have a learning disability and presumably do not need carers to look after you. You may need to put affairs in order or tell family members and support them as well. This seems to not be the case for this lady. Why are you insisting she knows just because you would want to know? How would knowing benefit her? So far, you haven't explained at all how it would be beneficial for her to know this information.

@cansu

You keep saying you would want to know. You don't have a learning disability and presumably do not need carers to look after you. You may need to put affairs in order or tell family members and support them as well. This seems to not be the case for this lady. Why are you insisting she knows just because you would want to know? How would knowing benefit her? So far, you haven't explained at all how it would be beneficial for her to know this information.

Why shouldn’t she know? Because it would cause her distress? We wouldn’t tell anyone that they had a terminal illness if that were any standard to go by.

Your posts are littered with “if it was me”, but it’s not you. Someone with SEN will have a very different capacity. My son has autism and a learning disability, and in these circumstances I wouldn’t tell him either - even if he could understand about the cancer, he wouldn’t understand about why it couldn’t be fixed, about treatment options, about palliative care so no I wouldn’t distress him when there was nothing to be gained.

She may have a learning disability and need care, but she should be treated as a whole human being with the same rights as anyone else.

OP,

What do you think the benefits are for her if she is told?

What do you think the negatives are for her if she is told?

I think that answering those questions will give you more clarity.

If the negative outweighs the benefit then would you personally want to know?

I would want to know because it would give me time to prepare my children and to make sure I did everything I could to give them a bright, happy future even though I wouldn't be there to support them through it. Honestly though if I didn't have kids and there were no treatment options available, I would rather just not know, it would just put a dark cloud over the final stage of my life for no benefit at all to me.