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.

An assessment has to be made in line with care act and mental capacity act

Bear in mind that the decision not to tell her isn't a 'once and forever' decision. If her situation changes, the decision may change. It may become clearer in future that she does want and need to know.

I looked after children with emotional difficulties who needed support to process difficult things. There were times when we didn't tell them about coming events until the last minute, in order to allow them to enjoy each day. If they knew about a holiday booked, for example, they'd become very erratic- unable to sleep, over excited, anxious- and day to day life would be trying for them and us.

We'd trail what was going to happen without actually announcing it. Lots of work was done on preparation, then at an appropriate time beforehand we'd give the detail. So we'd buy clothes 'for the summer', talk about singing songs in the car 'if we were on a long journey' etc. When they found out about the trip, they already knew they had appropriate clothes, games for the car, etc.

If they knew too soon, it would stop them coping with day to day life and they'd have no benefit of the knowledge. Perhaps it's the same for your lady. Perhaps the people who have made the decision have seen similar situations before that inform their action.

I'm sorry for your sadness. I'm sure as she becomes less well, there will be opportunities to support her helpfully. It's very sad and she's lucky to have someone who cares about her as you do.

People with dementia often ask for their husband or wife. Rather than say 'they died' and have the person cry until they ask again the next day, they are often told they've 'gone to the shop' the person asking forgets and doesn't ask again.

Treating people equally and with respect does not mean treating them the same. For me, a weekend at chess camp was a dream. For my brother a weekend at football camp was great. If you had forced us both to go to the other it would have been torture.

Just because you would want to know doesn't mean she should be told.

She will be upset and distressed. Perhaps they will tell her when she is bedbound.

You can still say "Jenny, write me a list of your favourite people in the world so that we can facetime them more."

"Jenny what are your ten favourite things to eat?"

"Jenny, if you could visit anywhere in the world where would you like to go? The seaside? I think we can arrange that."

So the can have the bucket list experience without the distress.

I think the person should know, unless there is a very good reason, dependent on the nature of their disability.

I lost a beautiful very young adult who I loved dearly. She had treatment for 4 years. The doctors advised against telling her that she terminal as it would likely she would have a panic attack and traumatic passing. I would like to know to allow me to make plans however if the person has limited understanding I believe that it would cause them great distress and ruin the time she has. I am sorry for the pain you are going through.

Hi,

In this situation there should be someone coordinating her care. As this is such a big life event/decision they would need to do a mental capacity assessment or possibly multiple mental capacity assessments.
These should be done as a multi-team approach and involve the person concerned, where appropriate, their family and relevant professionals.
There are 5 principles to look at-
1 - presume capacity unless the person is deemed not to have capacity
2 - the person should be supported to make decisions where possible e.g. presenting the information in an appropriate manner
3 - they should be allowed to make decisions you/me may consider 'unwise'
4 - decisions made must be in the persons 'best interests'
5 - the least restrictive option must be taken

In short, one person can't just decide not to tell her.

Hope this helps a little, your line manager may be the best starting point for you to make sure all things have been considered.

I am sorry . Mum and my sister are both cared for by carers, and I’d be glad to know there was an individual in their corner who cared as deeply as you do . I hope you can take comfort and solace from this thread, @RandomBasic has particularly good ideas going forward .

I'm not sure. My friend aged 17 when I was 17 had cancer. Her family at her funeral admitted they didn't tell her it was terminal so she got to enjoy her last summer with hope. Having spent time with her during that last summer I agree...she talked of the future and things she do and was positive. It's hard. On the fence here. My friend didn't have any learning difficulties.

This is so hard. It must be so horrible to have a big secret like that from someone you care about. I don’t know the answer either. I guess it would depend on whether it makes her life unbearable going forwards. If she had lots of meltdowns or something. I totally get what you mean about treating her the same as you would if it were you who had the diagnosis. There is a huge power imbalance in care and this can be tricky to navigate if you’re a good person.

I think some people have been awful to you on this thread. You've just found out someone you care deeply for is terminally ill, a little empathy wouldn't have gone amiss. I think this lady is incredibly lucky to have you looking out for her.

As the parent of a child with severe autism and learning disabilities ,this is a very individual my child wouldn't have the capacity to understand ,and it would not bebin his interests to tell him
If telling her is going to confuse and frighten her ,why woulda anyone do that

@Pissedoff22

Having a terminal illness is supposed to be distress but doctors still tell people regardless of what difference it will make for them. I don’t understand how this is different when I know she will understand. I will do my utmost to support her regardless but I can’t help but feel like this is wrong. I just needed somewhere to speak anonymously as I feel sick and I can’t sleep.

No they don't always. I've known several situations where the patient has been vulnerable and the doctors have dealt with the family.

Personally, I can't see the benefits of this lady knowing, all it will cause her is distress. And quite honestly that's all that counts in this situation.

@Sapphireskies I’m sorry but that’s bollocks. My son has severe learning difficulties. As an adult he would have the right to walk out into the road if he wanted to. As someone with SEN, he doesn’t have the capacity to understand about traffic so I do what I need to to protect him.

Those who care for people with special needs to their best every day to make the very best decisions we can for them. It is our job to advocate for them, protect them, and prevent them from pain and distress.

The right to the best quality of life possible is what matters and that includes not terrifying and distressing him with information he doesn’t have the capacity to deal with that has no benefit for him.

It’s not really up to what one person thinks.

Under the mental capacity Act, there’s many parties involved in such decision making such as doctors , a social worker, legal guardian, maybe a psychologist/psychiatrist and any family members to come up with what’s in her best interest. That how a proper mental capacity assessment is made, not thought mumsnet.

Has she got a carer/support worker? Is this cancer just been discovered now? If so how did it get to the terminal stage without being pick up by people supporting her?

I disagree with PP that it's likely this has been carefully thought out. I work as a hcp specialising in ld and autism and we know that people with ld are often not involved or informed in their care, regardless of mental capacity.

That doesn't mean that the decision not to tell this person about their cancer is wrong, OP, but just that there is a huge amount of social context that needs to be considered when answering questions like this.

As to pp talking about mental ages - it's not appropriate, nor are the comparisons to children. Adults with ld are adults legally, physically and mentally.

So YABU for asking about it in here.

If she’s got a capacity and someone is withholding her medial status from her, there’re breaking the law.

Medical status* sorry

For the most part yes everyone has a right to know they are dying but there are some situations where it’s best to decide on the basic of well-being for the individual.

And also we need to think about what the person thinks dying is. I've known people whom others think know what 'death is' but then they ask (about a dead person) " when are they coming back". So they don't know what death is and instead they have learnt the words which others say about person x ("they are dead"). Not everyone actually has the cognitive ability to know what death really is (I know we can all struggle but we know it's final, our bodies will rot, we won't talk again etc.). If someone is very confused about death, then telling them they are dying can be meaningless but terrifying. It's easy to think we're doing the right thing by treating people as we'd want to be treated but if we start with such an un-individualised mindset then we sometimes will not be. That said, I wish drs were clearer with everyone about prognosis though I think some of their shying away from the brutal truth is to help them avoid painful feelings.

@Mummytobe93

So YABU for asking about it in here.

If she’s got a capacity and someone is withholding her medial status from her, there’re breaking the law.

Eh?

That how a proper mental capacity assessment is made, not thought mumsnet.

It's not though, a proper capacity assessment is made by assessing the persons capacity first, which would necessitate discussing cancer, death and dying. How would you do that? You cannot make a decision in someone's best interests unless they lack capacity.

@Pissedoff22

Having a terminal illness is supposed to be distress but doctors still tell people regardless of what difference it will make for them. I don’t understand how this is different when I know she will understand. I will do my utmost to support her regardless but I can’t help but feel like this is wrong. I just needed somewhere to speak anonymously as I feel sick and I can’t sleep.

But doctors don't tell people normally just for the sake of telling them. They do it for a variety of reasons. The chances are that the person in question will suspect anyway, plus they may need to know so that they can do things they always wanted to do but have put off, put their affairs in order, say goodbye to people they love, etc. For a very learning disabled person, none of that really applies. Furthermore, an NT person will be able to understand better; for a learning disabled person, the information may simply cause them major distress and anxiety. Whether that is the case for this person depends on a lot of personal factors and you simply can't formulate a blanket rule that they must be told just because you as an individual would want to know.

@Pissedoff22

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.

Of course she should. However, withholding a prognosis for the sake of a patient's mental health is common practice and is not exclusive to those with learning disabilities.

Doctors will withhold a terminal diagnosis from those who do not have a disability too if they determine that it is the right action for the patient. The diagnosing doctor will have made this decision after discussion with this person's family and they will be the expert in the field.

What you're feeling is sympathy. Thinking about how the situation would affect you, how you would feel, that you would prefer to know. Your customer would be better served if you were empathetic to HER needs instead. She is not you. Her circumstances are very different and you are not the expert here, the GP and your customer's guardians are.

She should not find out she is close to death from you. That would be wholly inappropriate and very damaging to her. I hope you understand that.

I would presume that a best interest decision had been made on her behalf, and on balance it was deemed it was better for her not to know. Unless you were party to that, then you wouldn't know why. But it certainly would not be a good thing for you to make the choice to tell her.

Autism isn’t a learning disability. Many people with autism also have a learning disability on top but you do not make it clear from your posts if this is the case.
Everyone is different. I am autistic, dully able to comprehend what a terminal diagnosis of cancer entails and would want to be informed. However, I also know someone whose daughter is autistic, with some learning disabilities who would be unlikely to understand and process this sort of news. You cannot treat both those cases the same as it wouldn’t be appropriate

First off thank you for caring.

Are you her main day to day carer? The person who knows her best? If so you really should have been involved in the discussions as best interests discussions should involve the people who know the patient best. If that is you and you weren’t involved it would make me worried that the process was not correctly followed.

Do you know is there was an IMCA - independent mental capacity advocate involved? They should be and have spoken to your client to find out her views and advocated for her. It’s possible she has spoken to an IMCA and said something along the lines of not wanting to know about bad news or upsetting things.

I think it’s very honourable that you want to protect her rights. Usually concerns should be raised through your manager but if there not responding I would contact her social worker with your concerns.