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.

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.

I don't think she should be told. What way would it benefit her remaining life? My nephew is severely autistic and has a very very loose grasp on life cycles. He is also prone to obsessing over the most minute details and becoming incredibly distressed. If this lady in question is similar her being told could confuse or distress her unecessarily. If she has carers and a legal guardian then she doesn't have to worry about her funeral to make plans for it like other people might.if she has a bucket list it would be better to just do what's possible on it without her knowing she is terminally ill.

I understand your conundrum but thinking practically about it, I don't see how it can bring any comfort or sense of peace to her.

@DiscoBadgers

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.

Well I’m sorry I just found out that someone I have looked after for many years is dying so my thoughts are slightly littered and chaotic and I’m probably not expressing myself very well.

How much capacity does she have?

You say that you would want to know, but why? A lot of people feel they would want to know so that they could do the things they’ve always wanted to do. So they could prepare both themselves and their family for the fact that they’re going to die. So that they can get their affairs in order.

What would it achieve for her to know other than waiting for it to happen? And would that benefit her in any way?

At the end of the day, we’re all going to die. Would it really help her to know when and how that’s going to happen?

Surely lots of people aren’t told. Their relatives may be told. If they ask, they will be told the truth, but lots won’t ask. I have cancer. I don’t know the prognosis or the stage. I haven’t been told.

OP, you say that you “would want to know”. With respect, that is irrelevant. You are not the patient, and you have no idea whether she would want to know too.
As a doctor, I tend to the view “First, do no harm”. Telling this poor lady that she is going to die will distress her. What possible benefit will the knowledge bring her, that is worth such distress?
If patients want to know something, they ask. There is a strong argument for only telling them what they are ready to hear, and only when they request it.
In a sense, all of us are terminally ill. We are all going to die. Not all of us want to know months in advance that it is becoming more imminent.
I think your role is to support this lady, not upset her. When her illness progresses, if she asks re her prognosis, you can refer her to her GP to discuss it.

As a carer, you may know her much better than the people making the decisions, given her family is distant. It's sad that you're not listened to.

Would she have the capacity to use the knowledge for something positive? For example, to say her goodbyes to those she loves, or to do bucket list things that she always wanted to do?

This person might have views on where they would like to die. At the very least. And most of us have views on medical treatment depending on what it does for us.

I imagine she isn't being told for a reason which is based on evidence. I think it is difficult for you as you are her carer and emotionally involved so it is natural for you to question it. I am really sorry OP - I'd be really upset too.

@StoppinBy

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.

Thanks. I will have a think. Write it down. I guess I just feel like it’s her right to not have vital information withheld.

I would be leaning towards she should not be told.

@Pissedoff22

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.

What benefit is there to her of knowing? That’s what it comes down to.

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.

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.

Which is something I’m sure her medical and care team looking after her have balanced that in their decision.

You don’t need to agree with their decision but you do need to make peace with it, because you can’t do anything about it.

Having a terminal illness is supposed to be distress but doctors still tell people regardless of what difference it will make for them.

A large part of that is so they can make a decision about their care. Will this person be doing that?

What would she do differently is she knew?

I have several people in my life with SEN None of them would benefit from knowing as they're living the only way they can already- they wouldn't understand the concept of bucket list. They'd still have pizza for dinner every night & they'd still play the exact same computer game/paint/whatever. None of them have the capacity to live a better life than they do right now!

So there's absolutely nothing to be gained by telling them. Some would shrug & some would be utterly distressed!

Why out them through that?

Just help your lady to make the most if everyday 😊

OP: I suspect your focus on this is displacement for your own grief. So May I extend my sympathy to you on hearing such sad news about someone you care for and have known so long. It must be hard to process. I hope she is comfortable and pain free, and I wish you all the best for supporting her on the journey to come. I hope that you will get some support from someone too xxx

Just because people have a right to know doesn't mean that telling them is the right thing to do. It may be that she wouldn't want to know.

I think this is a very difficult situation and I understand your view.

On the other hand, you do sound a bit as if you’re on some sort of disability rights campaign as opposed to purely thinking about what would be kindest for your client.

It’s the sort of thing that gets tested in court, isn’t it? I wonder if there have been previous cases that have set a precedent. Maybe do a bit of research.

@WorkingItOutAsIGo

OP: I suspect your focus on this is displacement for your own grief. So May I extend my sympathy to you on hearing such sad news about someone you care for and have known so long. It must be hard to process. I hope she is comfortable and pain free, and I wish you all the best for supporting her on the journey to come. I hope that you will get some support from someone too xxx

I suspect you’re probably right

A member of my family wasn't told for the same reason. She knew she was ill that's all,anything else would've scared her. It was the right decision.

Does she understand she is unwell? Do you know if they have tried to explain her illness at all? They may have tried but she didn't have the capacity to cope.

OP- this obviously is very sad news, and must a shock for you. It concerns me that as her carer, you come across as believing its her right to know- even if it would be more upsetting for her, cause confusion, distress and anxiety.

Many of us have asked 'what benefit is it for her to know??? Yet you can't even come up with 1 answer, other than its her right to know!

What is her mental age? IF the medical team decide to tell her, it would be done in a way that say a 5yr old, 10yr old etc might understand. I would sleep on it, and speak to your manager about your concerns. I would hope your manager has more experience of similar situations than you do, and might be able to explain it to you in a way YOU can understand.

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

OP - you're not 'just' a carer. You're someone who clearly has the best interests of someone you care for at heart, which is care 101, it's the part of the job that can't be taught.

This sounds like a best interests decisions, made by the lady's legal guardians and I can understand why you're conflicted by it considering your description of those involved in the decision making process.

But, would it be of benefit or detriment for the lady to know about her diagnosis? I'd be leaning towards not telling her if it will cause greater alarm and distress to her because of the learning disabilities, than if those disabilities were not present.
You're right that anyone is going to be distressed by a terminal diagnosis, but the level of possible extra distress this lady may face due to her disability needs to be considered.

I'm sorry you're struggling to deal with this 💐

I'm a palliative care specialist. In regards to individuals with learning disabilities, it is not straightforward at all. And it's also not an individual decision. There is far too much to go into, you could do some reading online which might give you a better grasp of why she hasn't been told and palliative care in LD in general. There is no way to say, even from your posts if she should have been told or not.

I'm sorry you have had this shock, it's easy to see you care greatly for her. I did have an autistic patient who was told her diagnosis a few years ago. She was living independently, minimal care input, workong, but it was horrendous. The anxiety linked with her asd, need for routine, for control was completely thrown. She couldn't control her health or diagnosis and went from living alone to having to have sheltered accommodation. She was an absolute mess of anxiety, meltdowns etc. It was very distressing for her, the family and our team. We had to put alot of services and mental health support in place. When we reviewed this case in supervision a while later, it was easy to see the wrong decision was made. She died, quite simply terrified. She couldn't make peace with her diagnosis at all. And in my experience making peace with it and letting go of the fear and terror is one of the keys to a peaceful death.
At the time though, and input from family etc she obviously was told. As I say, it's a very very gray area where every patient will have a different approach.