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.

@Theunamedcat

Your self righteous and indignant behaviour is uncalled for this isnt your decision to make and it isn't about you and what you would want

There are many reasons to withold information like this some people would not cope they would withdraw do you really want to see them turn in on themselves? You don't want to see them suffer right?

My nan had dementia she would get lost in the past talk about my grandad and parties she went to "last week" there are many people who wanted to remind her that he died 20 years prior that her friends were dead that her dog was dead but that woukd be the same as her reliving his death over and over again and for what? To make them feel better? Make someone sad for no reason other than the vague feelings its the "right" thing to do? Nope no way I left her to enjoy her parties to wait for her husband she was happy to her he came home every night took her places she was happy

There’s no need for the personal attack. 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. We try and provide a high standard of care, and sometimes it is necessary to ask questions in order to achieve this. It’s not like I’ve said I’m going to tell them. I’m just working through my own thoughts and feelings on this, I know it not about me but you cannot expect me to be totally unaffected. It’s still hard for us as carers but we continue to do this job that many of you wouldn’t consider because we care. I’d be a pretty shite carer if I didn’t care. I’m sorry about your grandmother but this person doesn’t have dementia so I don’t think it’s a fair comparison.

OP I would think this decision was not taken lightly.

If it were me, of course I'd want to know. It would be devastating, sure. But it would be necessary for me to know so I can get my affairs in order. I'd probably marry my partner and try to create lots of happy memories before I die especially for my daughter. Even though it would be painful and shocking, I would be able to cope and make the most of the time I have left, that's the kind of person I am.

As someone who has supported various people with learning disabilities in care, I can think of some people who would be better off not knowing. One man in particular comes to mind, I just know if he were to be told he's terminally ill it would be absolutely earth-shattering in a way that's not conceivable for you and me. I just know the rest of his days would be spent in torment with great pain and suffering and not an ounce of happiness. This is a man who cannot cope with even the knowledge of a doctor's appointment, he cannot be told anything in advance because he puts his life on hold for whatever it is and is filled with the worst anxiety until that event passes. So what good would it be telling him he is terminally ill? I think his head would explode with that knowledge. I suspect the decision was made for the man you care for because of similar reasons.

To me as well OP that is so wrong that she doesn't know. She has the right to know. I feel they should at least attempt to gently tell her. Heartbreaking. I truly hope the rest of her life is as enjoyable, and comfortable as possible

How would it benefit her to know?

OP, I think you're being a little selfish here. If they told her that she was terminally ill, would she have the capacity to understand? Does she have capacity to agree/deny medical treatment?

Yes, you are upset that someone you care for is dying, but your wish that they know that they are dying surely would not be good for them, you're only thinking of how you would feel. They may give up an die sooner than they would've done if they were none the wiser. Ignorance is bliss as they say... let her enjoy her life as it is rather than hanging a cloud over what time she has left.

To those people who say she has a right to know, would you say the same about a young child, because, depending on her capacity, that may well be the equivalent. Would you insist that a 5 year old child should be told that they were going to die in the near future?

It's clear from your post that you care so deeply for this lady, and I'm sorry to hear about her diagnosis. I hope she can spend her remaining days as comfortably and happily as possible and that you also have someone to support you. I used to be a carer for adults with SEN, and it's incredibly upsetting when someone you care for so much gets so sick.

All I would say is that there could be very good reasons that she isn't being told. I agree with you in principle that people should generally be told the truth about their prognosis so that they can make preparations and decisions, but that's not always going to be the right thing for every person. The news of a terminal prognosis would be distressing for anyone, but the question is whether she would be able to cope emotionally with the knowledge and whether there would be effective ways to support her through her distress.

What I mean is that the problem is, it might not be clear what the answers to these questions are until she's told. I think it would be very difficult for her and the people who care for her if she is told and it turns out that she becomes very distressed and that nothing gives her peace or comfort, and at that point there would be no way to untell her if it turned out to be the wrong decision. As a PP described, these are complex decisions, and I think that there's more potential harm to be done by telling than not telling.

I wonder if there is someone that you could speak to to help you process your feelings about this. I think in your situation, I would trust the conclusions of her medical team to be in her best interests. But I know it's really hard when you care for someone so much

I've never known anyone whose doctors told them outright they were dying. It is something that the patient pieces together from information about what is wrong with them and treatment plans. Occasionally people do ask doctors "how long have I got?". This is often asked with a view to making plans/arranging their affairs. The information you have is very private and I do not think you should discuss it with her. If she asks about her illness or prognosis, refer back to her doctors.

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.

But she needs to be treated as the whole human being that she is - there is no default 'whole human being' that applies to everybody.

As has been said, for most of us in her position, it would be a case of getting our affairs in order and making sure everything was known/passed on to our loved ones to take over. We'd know we couldn't stop the dying, but we'd focus on what we could take care of - indeed probably with a lot of worry. Her affairs are already looked after by others, so she has nothing to worry about there.

Rights come with responsibilities and, sadly, her inability to take on some of the latter already means that she also doesn't have equal of the former. To compare her case to children again, they don't have the right to decide on which house to buy/rent - how big, location, facilities, price etc. as this right is ultimately down to adults; but equally, when it comes to the concern of having to find the money to pay the mortgage/rent each month, and to meet all of the bills and put food on the table, the children also don't have any responsibility for that.

In fact, continuing with the likening of her circumstances to those of a child.... we shield children from films/documentaries telling stories of the harrowing deaths of other real people, because we know it would frighten and trouble them; so why would we dwell on telling them of their own deaths?

I'm with you: I would hate not to know if it were me, and I can see why you're wanting to defend her; but you and I are fortunate enough not to have learning disabilities and would be able to deal with the whole picture in a 'standard' adult way.

@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.

But knowing the full extent of her prognosis may not help her. If told the full extent of her illness but she be expected to make decisions and be able to cope with that? Slightly different situation, my friend’s father had Alzheimer’s when he was diagnosed with terminal cancer. If he had been told he would not have retained the information and a doctor explained it would hit him anew each time he was told. It could well be a shock and a grief over and over. He wasn’t told and all the family’s energies went into making his last months comfortable and as happy for him as possible.

To me as well OP that is so wrong that she doesn't know. She has the right to know. I feel they should at least attempt to gently tell her.

I don't want this to come out in the wrong way, but sometimes, we deliberately take away the rights of vulnerable people when we - with the privilege of much greater capacity - know that giving them that right would ultimately upset or hurt them more than not doing so.

Our toddlers do not belong to us - they're free individuals with their own rights, including the right to run into a road if they so want to. But those of us who know their interests 'better' than they do, and have a greater appreciation of the consequences, will grab at their hand, restrain them and deliberately deprive them of these 'rights' - out of pure love and care for them. Even with that safety net in place, we still would never tell them all the gory details of a horrific, painful death that could befall them if they get hit by a car - we just say "It isn't safe" and take the rest of the responsibility ourselves on their behalf.

I suppose there might be a dilemma in future, if this lady in question senses something is different and actively asks if she's going to be OK, or even if she's going to die; but if the people charged with her best interests genuinely believe that she would be more distressed by knowing than she is by being blissfully unaware - bearing in mind that plenty of people without any kind of learning challenges don't want to be told the whole story - telling her when she otherwise wouldn't know would be the active decision, and could actually mean that they have deliberately taken away her right to peace of mind.

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

You can't compare yourself to her . You are her carer and it's best if you just keep on caring for her and leave this to her family. It is never wise to go outside of your scope of practice .

There may well be an argument for saying that everybody has a "right" to know the truth about their diagnosis. However that doesn't mean that all cases it's the right thing to do . It's impossible to know what would be best for the person you care for based solely on your interpretation of the circumstances, and how you would like to be informed personally.
I honestly think there is no right or wrong decision ... there will be equal arguments for and against telling her .... each one will have some validity.
You obviously care for her a great deal , and your practical support of her is what matters now - for her and for you . I'm so sorry you e been left in a conflicted situation .

To echo a PP, my DGM had severe mental health problems all her life - although not dementia - and she would tell us a whole load of what were, objectively, lies. Reports of what real people had 'told her' (via the voices in her head) and other random things that made no sense and were of course not true.

Now, we realised that she wasn't deliberately telling us lies - she was quite honestly telling us HER 'truth'. We could have firmly gainsaid her, described to her (in vain) logically why it wasn't true and told her to be away with her 'nonsense'. From our pov, we might have been happy 'setting the record straight' - but doing so would only have made us - the 'stronger' more privileged ones - feel better.

As we clearly saw no desire or value in making her more distressed - in her case, not just genuinely believing these voices but the added upset that we were calling her a liar, we naturally said nothing and just nodded along. There was a lot we didn't tell her - but only because it would have upset her to hear/know it and not helped her at all (possibly made her worse) if we had.

I think it comes down to 'how will it improve her life to know' and I can't really see the answer to that. She does not sound like someone with a bucket list of things to see and do and plans to make so how would knowing help her?

@Pissedoff22 this is a really difficult situation. 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. There are some people who might grasp elements of death but depending on the LD it might actually make their last days worse for a variety of reasons. It’s all based on individual ability to cope and whether it’s in their best interests and how extreme the LD is. You can say you would want to know but that’s your personal decision.

No.
What for?
What good will it do?

I think some people give up when they find out, not everyone gets told- learning disability or not.

i think your reasoning, moral reasoning has become muddled, probably due to your own sadness at her diagnosis.
you seem to be asserting that she has a right to be distressed, as much as a non-disabled person would be by such knowledge.
actually i think things have swung too far towards telling everyone everything.
once spoken, it cannot be unheard.
even the way doctors have spoken to me about others' condition has caused me great distress.
i'm sure you want your client to have the best life possible, for as long as possible, and you will continue to enhance the enrichment of her life.

I have a type of Autism formerly known as Asperger's and can still work and moderately function. I would prefer not to know if there is nothing more that can be done, as long as I wasn't in severe pain. As part of my OCD and anxiety, as a result of my autism I have thanatophobia, so actually not telling me would let me live a more positive life but everyone is different.

Also, just to add apparently thanatophobia is quite common in ASD. This is the question of quality of life and as long as you can ensure that pain is managed, then the quality of life is much greater by not knowing.
Also please read my post directly above before commenting negatively.

There is a fantastic movie from 2019 called The Farewell that deals with the cultural aspects of telling or not telling someone that they are dying of cancer. I certainly made me think twice about my preconceived ideas about the subject. Perhaps it might give you some solace, OP.

My child has a lifelimiting illness. They know nothing about it and I am hoping to keep it that. He had major surgery last year and came close to dying and he doesn't know that either, he just knows he was very ill.

With his LDs and his autism, it would be a cruelty to tell him. He would spin into acute anxiety and the condition would rule his every minute of every day. He's much better off without knowing.

It's a complex one and you obviously really care about the person,I hope a lot of thought has gone into the decision based on the person's best interests.
My sister has learning disabilities, generally she's v involved in her medical care, although doesn't fully understand things is supported to have all the information she can manage. I'm not sure whether it would be in her best interests to know that she was terminally ill, I'd definitely want her to know she had cancer to try and help her understand any treatments and appointments she was going to, but she may find being told she is going to die very distressing and frightening (as a lot of people do!) but might really struggle to cope emotionally.

If she was told and her anxiety took over meaning she spent the last few months of her life screaming and having meltdown after meltdown how would you feel about it then?

@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.

I don't think that not being privy to your own medical care means that you are in any way less human. Knowledge is not quintessentially positive, we encourage it to be in control of our own lives and make decisions based on various factors, however we also accept the negative aspects which come with it, and often, in situations where we have little or no control, they out way the positives. We don't tell small children, what would they gain, it doesn't make them in any way less human , less respected or less loved.

@XenoBitch

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.

There wouldn’t be much point in giving any bad or distressing news to most people with dementia, when they’re only going to forget so quickly anyway. We soon learned to stop explaining (however gently) to my FiL that MiL had died 10 years previously, when it was only going to distress him to the point of tears - only for him to forget and ask again half an hour later where she was. So she’d ‘gone to the shops’ or ‘to visit Auntie So-and-So.’ In dementia-carer circles these are called ‘love lies’.