Telling patient they are terminal

[BeatriceLacey]

My 91 dad is near the end of his life. A district nurse called this evening and said that they will provide care to my dad but they need to tell him the truth about his condition and get him to sign some papers to say he understands. My mum and me don't want them to do this. We don't think my dad wants to know. We think this will just really upset him and hasten the end. My mum managed to stop the district nurse saying anything this evening but she said she's coming back tomorrow. I don't know what to do. My mum expects me to call her back with a solution. Any advice?

Does your dad have full capacity? has he ever expressed any views on what should happen when he reaches the end? Why do you think he doesn't want to know? Does he know he's ill?

The nurse can't not tell him on your day so, but she should definitely check with him about whether or not he would want to know.

I usually say something like "Hello Mr Jones, you understand you're here today for a diagnosis and to find out what that might mean. some people tell me they want to know all the ins and outs of everything, and others say they'd rather not hear anything about it, and leave the decisions to me. Which sort of person would you say you are?" That way if he doesn't want to know he doesn't have to but the nurse has done what she needs to.

Maybe suggest something like that?

I'm not sure full capacity: sometimes he's lucid, sometimes he's very confused. He knows he's 91, he doesn't always know he can't get out of bed any more. He told me tonight that he doesn't feel 91. He knows he has cancer, he doesn't expect it to kill him. (It won't, more general decline/old age)

I suppose it's just a gut feeling, and how he reacted when I tried to sort out his will (failed to do that). He doesn't want to go. I don't want him to.

Firstly, sorry for your news💐.

You would need to prove that it’ll cause real harm to your dad if he is saddled with this news.
(Are his affairs in order? they normally insist they be told for this reason/ so they can prepare). Would your dad tell the nurse he doesn’t wish to know his prognosis? Does he have capacity?

Sorry you are having to deal with this but a few points
1 has your dad been deemed as having capacity
2 has he had a RESPECT form completed at any time that should have his wishes for how his end of life care is given. Something his GP surgery should be aware of
3 if he wishes he can tell the DN that he wants all discussions to be with you or your mum (or both) and he doesn’t want to be involved
Never an easy discussion for anyone involved
Hope this helps a little

How would you feel if the truth was denied you?

When my dad was end of life my (lovely) stepmum didn't want him to know. Consultant disagreed. She came in to his room and asked him if he knew why she was here. He simply said, to tell me the truth, I'my dying.

We didn't tell my dad. He didn't have capacity, and very often forgot things we'd told him the day before. It seemed cruel to tell him something we'd have to keep repeating every other day.

Instead we bought him his favourite beers, dug out some lovely old photo albums, and sat watching only fools and horses with him for the last few weeks. He seemed happy. We didn't feel there was much more we could do.

He hated talking about feelings, so we just did what we thought he'd want. I drank a lot of minging stout that month 😂

I don't know why they have to tell him.
Unless it is so that they cannot be prosecuted for not doing CPR or something. Seems a bit cruel.

Thanks for all the replies. Yes, there is a RESPECT form already completed.

Sympathies. My DF was ready to die, although the way that the doctor phrased it was just about stopping treatment rather than spelling it out. He wasn't able to talk much by then though and my DM didn't believe that he was okay with stopping, so I had to actually say to him "you know if they stop treatment you'll die?" He didn't have to sign anything at that stage, though he possibly had before around DNR. Can you clarify exactly what the issue is?

If you don't get an answer on here, Age UK were really helpful with me when I had a legal question - or is there a charity for his condition?

And sorry about your dad

He already agreed to DNR some time ago. When someone is so old and confused it just seems cruel to me.

So now I'm wondering if we could tell the nurse there already is a RESPECT form and a DNR so to some extent my dad has already had the conversation. Wondering if we could suggest she asks if he wants to talk about end of life care and doesn't unless she gets a definite and clear yes?

It’s not a case of capacity or not. Capacity is decision and situation specific. People must be supported to enable them to make their own decisions whenever possible with reasonable adjustments.
it is not for you or your mother to decide whether he is allowed information about himself. Even with LPA it only means you can be involved in decisions that he cannot make and isn’t a Carte Blanche to make all decisions for him.

If he lacks capacity around this, it has to be a best interest decision. Your views about what he wants will be considered but it’s not your call. Hard though that may feel.

The best interest is very rarely to withhold information someone has an absolute right to. They have to tell him because he is their patient and that relationship requires trust and honesty. Duplicity and dishonesty doesn’t serve anyone well usually. Even if done with best intentions.

This is a really good approach and I'm sure is what the DN will be taking.

It is not up to you or your mum to make that decision for him. It also might be helpful to him to know that he can let go.

My dad died very recently. I'm so sorry, it's very hard.

My mum died at the beginning of June in 2017. 2 weeks after her funeral he ended up in hospital with a suspected chest infection. Turned out he had terminal cancer which had never been known about. The consultant and doctor suggested there would be no real benefit to him knowing his prognosis. I think he knew towards the end, and perhaps had a conversation when I wasn't there, but I agree he was still heartbroken from losing his wife, and the news on top wouldn't have done much to help his already low mental health.

If he has a ReSPECT form it should be on his records that the team providing care already has access to. You can’t expect a healthcare professional to lie to their patient because you don’t feel comfortable with the truth. It’s his truth not yours.

I wouldn't expect a healthcare professional to lie to their patient but surely if he wanted to know he'd ask 'am I going to die now'. He's 91 he won't expect to live forever.

Struggling to think what on earth he needs to sign.

He already has a DNACPR - which he knows about.
He already has a RESPECT form.
He has fluctuating capacity.

Oh, thinking about it, it is probably a consent form for Continuing Care Fast-track. Are they talking about a care package?

The DN is making a meal of this, I usually just ask that you agree to having the carers and I'm done. No need to go in to all the stuff about you being near the end of your life, which frankly most people are more than aware of.

If he doesn't have capacity he doesn't have to sign at all anyway.

Thanks for all the replies.

When my dad was dying my uncle felt that he should be told and I felt he shouldn't. We talked to the consultant together and he said that if we felt that dad's "affairs" - relationships etc rather than money - were in order then there was nothing to be gained from telling him. He wasn't lucid but did make some odd comments that we understood were him saying he was near the end. He knew he was loved, he knew his dog and his wife (always in that order!) were cared for and he had a deep religious faith and was pain free so nothing needed to be "sorted" in his mind/heart if that makes sense.

When my father had cancer he had to ask the Macmillan nurses to stop contacting him as their talk of death and dying was so distressing to him. In fact he is still alive seven years later. He is in his late eighties and I don't believe he will want to know when the time comes.

However we are a family that avoids all discussion around emotions so we are probably not very typical. Everyone is different.