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Share your dilemmas and get honest opinions from other Mumsnetters.

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

131 replies

Pissedoff22 · 08/03/2022 22:47

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.

OP posts:
AngelinaFibres · 09/03/2022 08:41

@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.
My husband lost his late wife when she was 38. She had cancer. The doctor said to my husband that if a direct question was asked by the patient,regarding their prognosis, then that question would be answered honestly. If the patient did not ask ,and many NT people do not want to know, then it would not be discussed. It is not automatic in health care to tell anyone that they are dying. When my father was dying we had months of care at home from the hospice at home team of carers. We knew dad was dying and he ,as the patient, wanted to talk about it. He was totally comfortable about his death being talked about. He got everything in order and everything that needed to be said was said. He planned his own funeral.The hospice team didn't use the words death or dying or terminal at any point until we had used those words. I asked them about it and they said that it wasn't at all unusual for a person who is dying or the family of the person to absolutely not want to discuss it or to have it acknowledged. I have said to my husband that I would absolutely want to know because I have children and a grandchild (arriving anyday now) and there are things I would want to say and do. His late wife knew that she was becoming more and more ill and that all the treatment options had been exhausted. She didn't want to discuss it. She didn't want it put into words. He respected that completely. What difference would it make to the person you care for to know. Do they need to tell anyone? Do they need to make a will? Do they have life insurance? Do they own a house ? As their carer it isn't your role to push their diagnosis into their face. The kindest thing you can do is to make whatever time they have left as good as possible because you know it is limited. The truth is not always helpful.
Mummytobe93 · 09/03/2022 08:54

www.nhs.uk/conditions/social-care-and-support-guide/making-decisions-for-someone-else/mental-capacity-act/

“ Examples of people who may lack capacity include those with:

dementia
a severe learning disability
a brain injury
a mental health illness
a stroke
unconsciousness caused by an anaesthetic or sudden accident
But just because a person has one of these health conditions does not necessarily mean they lack the capacity to make a specific decision.

Someone can lack capacity to make some decisions (for example, to decide on complex financial issues) but still have the capacity to make other decisions (for example, to decide what items to buy at the local shop).

The MCA says:

assume a person has the capacity to make a decision themselves, unless it's proved otherwise
wherever possible, help people to make their own decisions
do not treat a person as lacking the capacity to make a decision just because they make an unwise decision
if you make a decision for someone who does not have capacity, it must be in their best interests
treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms
The MCA also allows people to express their preferences for care and treatment, and to appoint a trusted person to make a decision on their behalf should they lack capacity in the future.

People should also be provided with an independent advocate, who will support them to make decisions in certain situations, such as serious treatment or where the individual might have significant restrictions placed on their freedom and rights in their best interests.”

Basically you can’t just assume someone lacks capacity in all aspects of life. Each decision should be assessed separately.

saraclara · 09/03/2022 08:58

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

That's not actually true. I was there when my husband's oncologist spoke to him about his cancer diagnosis. Having talked about the extent of its spread, the doctor asked my DH how much he wanted to know. My DH said very clearly that he didn't want to know his prognosis in the sense of time or probable outcome. He wanted every bit of treatment available to him, but nothing else.

He only knew that he would die, when every bit of treatment had to be withdrawn, and his consultant mentioned contacting the hospice. That was 18 months later. Not knowing worked for my DH. It meant that he could live life 'normally' without the though if death in his mind constantly.

RobinBlackbird · 09/03/2022 09:06

Honestly. It's difficult.
I've been told I've got cancer and what's more I have a genetic mutation that will make me prone to recurrence/ different cancers.
I think it's the second half of that has totally taken joy and hope from my life.
Having all the information doesn't make for a better quality of life.

Luredbyapomegranate · 09/03/2022 09:08

Very sorry you are going through this OP, and for your client.

It used to be quite common, a few decades ago, not to tell people. We don’t normally do that with adults now, but it’s still normal to let parents decide how much to tell terminally ill children.

You could certainly put your views forward to her care team. However, given she has limited understanding and no dependants it’s perfectly reasonable for them to have decided not to tell her. While you may feel you’d want to know, the view that there is no purpose to telling her because it could cause her needless distress in the time she has left is valid.

I think that you may be displacing your own grief here. Carers can get very close to clients. You may be finding it difficult that you can’t express your grief and sense of loss to her - but it would not be fair on her for you to do this.

Go and see your GP and ask for a referral for grief counselling - or talk to your agency/union if you have one (it may be quicker). Or Google local charities direct.

Get some support so you can continue to care for her as well as you can. Sounds like you are doing a great job.

starfishmummy · 09/03/2022 09:12

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.

HiJenny35 · 09/03/2022 09:22

The big question is what good would it do for her to know, people are told so they can get their finances in place, put care in place for children, do a will etc if there's no need for any of that would it really be beneficial? Just to have a few months of fear and sadness? I know 2 people who have died of short aggressive terminal cancer, both said they would have preferred not to know. They both spent the last few weeks in absolute fear. I appreciate that doctors would legally have to tell me but would I really want to know if there was absolutely no hope, no I don't think I would. Especially with someone who can't fully understand the limitations of the situation. I wouldn't want a child to be told for example, I'm not sure this is that much different.

Rinoachicken · 09/03/2022 09:22

I’ve worked in LD for quite a while.

Mental Capacity is not fixed. It can fluctuate with age, environment even time of day. It is always situation specific.

Legally, the assumption is that someone HAS capacity unless you have good reason to doubt that. In which case you just assess their mental capacity and this must be recorded. This can be a lengthy process as every effort has to me made (and you have to be able to prove) that amity tried everything reasonable to enable the person to understand the situation and communicate their decision (even if their decision is not what you would choose yourself).

This lady may well be perfectly able to make decisions about what she wants for dinner, where she wants to go every day, etc but not have capacity when it comes to complex medical care.

So at some point, when the issue of telling her or not has come up, she has been assessed and it’s been decided she lacks capacity in this area of her life.

It then becomes a best interest decision, which is also a formal legal process. The mental capacity assessment done prior has to accompany this best interest documentation as you can ONLY make best interest decisions where someone has been proved to lack capacity.

Again, the best interest decision with be decision specific. In this case, it will have been ‘should X be told about her terminal diagnosis’.

People involved in her care and her life would have been involved. This includes next of kin, her doctors, sounds like your care manager (who arguably should have asked for your views also if you work closely with her and know her best), anyone with legal guardianship (so her SW). They will have looked at the benefits and downsides of telling her or not, and weighed the decision based on what they felt was in her best interest.

She does have a right to know yes. But that does not necessarily mean she NEEDS to if the consequences of that for her would significantly put weight any benefits.

For many of the people I used to work with, knowing this information would not have been beneficial for them. This is not a neurosurgical person with no LD, hearing devastating news, being able to process it, come to terms with omit and then getting on with making the best of what time they have left. 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? They would have told everyone they met they were going to die. It would have occupied their every waking thought and caused fear and anxiety that just would be unnecessary and cruel because they were not able to process the information in any helpful way. It would have tormented them until their last moments and they would have lived their last months in fear and confusion.

In your situation, I would suggest speaking to your manager and asking to read the best interest decision and capacity assessment so you can get a better understanding of why this decision was made.

If you feel that the capacity assessment was un-sound (for example the lady uses PECS to communicate but PECS weren’t used in the conversation) then you can challenge it and it would have to be re-done. But if it’s all been done properly, with due care, then you will have to accept the decision. But hopefully being able to see how they weighed it up and reached their final decision will help with that.

Do reach out for support for yourself as you continue to support this lady towards the end of her life. It’s wonderful to see your care for this lady, it comes through clearly in your posts. But don’t let your grief and emotions about her prognosis cloud this. It’s about what’s BEST for her, emotionally and physically, what benefits her most.

Rinoachicken · 09/03/2022 09:25

Neurotypical not neurosurgical! (Obv)

hugr · 09/03/2022 09:50

So at some point, when the issue of telling her or not has come up, she has been assessed and it’s been decided she lacks capacity in this area of her life.

As someone who has also worked in LD for a very long time, you have to know that it's hit or miss whether this has been done, and to a good standard.

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..

Rinoachicken · 09/03/2022 10:04

As someone who has also worked in LD for a very long time, you have to know that it's hit or miss whether this has been done, and to a good standard

Which is why I suggested she check the documentation herself Smile

MotherofAutism · 09/03/2022 11:41

A lot of you on here seem to be totally disregarding this person's basic human rights. Yes, there's a lot of things which us as humans, throughout life, would probably rather not know. However we do know/find out/are told because of our human rights.
Having Autism is no reason to disregard her human rights. Also, Autism as we know, is a spectrum. I have a family member with Autism and they are only very mildly affected. However I have a friend with a child who is non-verbal and severely cognitively impaired. Yes, there's an argument for my friend's child being better off not knowing should they (god forbid) ever end up in such a position. However unless certain powers of attorney(?) (or whatever the medical equivalent is) is given to their parent/carer, then they still have a human right to be told, regardless of whether it's believed to be the kindest option or not. Only the person with full autonomy over that body has the right to decide.

If we're going to say that we must ignore these human rights and what is 'kindest', then why isn't voluntary Euthanasia legal in this country? Even if just for severely impaired individuals with a life-limiting/terminal diagnosis?

saraclara · 09/03/2022 12:14

If we're going to say that we must ignore these human rights and what is 'kindest', then why isn't voluntary Euthanasia legal in this country? Even if just for severely impaired individuals with a life-limiting/terminal diagnosis?

Your question is based on a totally false equivalence.

DoingAway · 09/03/2022 12:36

What is concerning about this is that OP appears to be saying that this decision has been made by people who don’t really know this woman but OP who does know her well has not been consulted. If this is the case OP I think you are quite right to question it and hopefully you can speak to the legal guardian and satisfy yourself on what basis this decision has been made. I am sorry you find yourself in this situation.

x2boys · 09/03/2022 12:44

@MotherofAutism

A lot of you on here seem to be totally disregarding this person's basic human rights. Yes, there's a lot of things which us as humans, throughout life, would probably rather not know. However we do know/find out/are told because of our human rights. Having Autism is no reason to disregard her human rights. Also, Autism as we know, is a spectrum. I have a family member with Autism and they are only very mildly affected. However I have a friend with a child who is non-verbal and severely cognitively impaired. Yes, there's an argument for my friend's child being better off not knowing should they (god forbid) ever end up in such a position. However unless certain powers of attorney(?) (or whatever the medical equivalent is) is given to their parent/carer, then they still have a human right to be told, regardless of whether it's believed to be the kindest option or not. Only the person with full autonomy over that body has the right to decide.

If we're going to say that we must ignore these human rights and what is 'kindest', then why isn't voluntary Euthanasia legal in this country? Even if just for severely impaired individuals with a life-limiting/terminal diagnosis?

I don't really understand your comparison Would your friends child have any understanding if they were told they had a terminal illness? My own child has severe non verbal autism He has no concept we have even been in a pandemic for two years ,if God forbid he was terminally ill due to his severe mental impairments ,he would have no concept of what was happening,the kindest thing would to make sure he felt safe and comfortable and out of pain .
Rachie1973 · 09/03/2022 12:51

@RobinBlackbird

Honestly. It's difficult. I've been told I've got cancer and what's more I have a genetic mutation that will make me prone to recurrence/ different cancers. I think it's the second half of that has totally taken joy and hope from my life. Having all the information doesn't make for a better quality of life.
Of all the posts on this thread this one stood out to me.

I’m sorry for the loss of joy. If I could give you a portion of mine I would send it willingly. I hope you have some bright days xxxx

saraclara · 09/03/2022 13:35

Having all the information doesn't make for a better quality of life.

You're right, of course, and I'm sorry that you've had cause to discover that @RobinBlackbird

I used to think honesty mattered above all in these things. Until the day that my MIL, as her dementia got significantly worse, asked at a family get-together, where "that man" was, clearly meaning my late husband, her son. It had been years since he died and since she'd ever mentioned him. Stupidly, I felt I should be honest and said "I'm sorry, but he died".
She broke her heart, and because of the severity of her dementia, it was very difficult to console her. I should just have said "oh he couldn't come today". Absolutely nothing was served by being honest, and all it did was ruin her happy day away from her care home, and really distress her.

Rinoachicken · 09/03/2022 13:37

@MotherofAutism the OP says that this lady also has a LD, which makes the matter much more complex as her ability to understand, profess and make decisions is more likely to be compromised. Not necessarily, (and legally capacity is assumed unless shown to be otherwise) and certainly not for everything, but that’s what we have the MCA for. And hopefully that process has been followed appropriately.

That’s why I suggested the OP requested to see the documentation that should be there to support this best interest decision - as it will set out the reasons and thinking behind the decision, and the assessment of this woman’s capacity around this specific issue.

If that hasn’t been done or not done to high standard then she can and should request it be re-done

Rinoachicken · 09/03/2022 13:45

Forgot to add, you said However unless certain powers of attorney(?) (or whatever the medical equivalent is) is given…

The OP did state that PoA is in place, held by the local authority. Whether that’s for finance only or Health and Welfare we don’t know, but presumably OP does.

Upamountain43 · 09/03/2022 14:14

This is part of my job - being involved in these decisions.

There will be a mental capacity assessment done to establish if she has the capacity to understand and if so the she will be told. If not then a legally established process will follow.

There will be a Best Interests decision made on telling her done with all relevant parties and should include and independent advocate who would represent the individuals views and would have had the time to spend with the individual and approach this matter in all sorts of round about ways to try and establish her typical reactions.

If anyone disagrees they can make a challenge to the Court of Protection.

There is a complete legal framework that should be being followed. These types of situations happen all the time.

ChangeNameagain2 · 09/03/2022 15:13

However unless certain powers of attorney(?) (or whatever the medical equivalent is) is given to their parent/carer, then they still have a human right to be told, regardless of whether it's believed to be the kindest option or not. Only the person with full autonomy over that body has the right to decide. That just simply isn't true. It is far more complex than a right to know or not.

Thornrose · 09/03/2022 15:29

@Rinoachicken I just want to say that your posts are so helpful and written so thoughtfully.

Your description of understanding time and the distress is exactly how I imagine my dd with autism would be if she was given a terminal diagnosis.

Uafasach · 09/03/2022 15:36

The doctor said to my husband that if a direct question was asked by the patient,regarding their prognosis, then that question would be answered honestly. If the patient did not ask ,and many NT people do not want to know, then it would not be discussed. It is not automatic in health care to tell anyone that they are dying

That was what we were told when a family member was terminal. She never asked so the doctor never told her.

Rinoachicken · 09/03/2022 15:49

@Thornrose both my sons are autistic too x

BlackandJello · 09/03/2022 15:50

My brother was born with a life limiting genetic condition similar to downs.

He was unwell throughout his life and had many operations. We thought we were going to lose him at several points but he pulled through.

When his body eventually couldn't cope we made him aware of what was going on and that he wouldn't survive. But only a week or so before he passed did we ever mention death to him as it was something that massively distressed him. When he was moved to a hospice we thought it was appropriate to tell him, he definitely wouldn't have coped with the news before that.

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