Are doctors always upfront when an elderly relative is nearing end of life

[KellyK2026]

In a situation now where my elderly relative is dying. Not that we’ve been told this my doctors but it is as clear as day. They are struggling to breathe, have become immobile, can’t really see or hear, are in pain etc. They are extremely frail. The doctors keep saying that it just takes time to get better. They aren’t getting better but while they are being told that it takes time to get better they aren’t getting the professional help they need. They really need an end of life package and to make them comfortable. Is it normal for doctors to not be upfront? I just feel like it’s made things worse because, while they aren’t being upfront, we cant get the care in place. Anyone else experienced something similar?

Your relative will be entitled to care, but they will have to pay for it.
You shouldn't have to provide round the clock care as a family, your relative needs carers.
People can live with heart failure for a long time, it can be up and down with symptoms. The British Heart Foundation website is a great source of information.

You can get advice from the BHF, they have an information phone number.
Heart failure can go on for years.
https://www.bhf.org.uk/informationsupport/conditions/heart-failure

What your relative will be entitled to is Attendance Allowance which can go towards many aspects of care. In your position (after thinking hard about my relative’s care) I would suggest applying for this allowance asap because it is back dated to when you apply. The form is long but take your time and fill it in. I would then discuss with family members the amount of care you are realistically able to provide. If necessary look for a respite placement in a care home and reassess.

Your relative may get upset but you all have to stand together and say that you are not being selfish, you just need a break. By making the placement “respite” you have the option to bring her home. She might like it in a private room with carers on call and 3 tasty meals a day.

You need to look after you too.

In my experience,no they are not. When my mum was days from dying,15 years ago and in a coma due to kidney failure,the doctors never said anything about it being only a matter of days before she died. On the contrary,a couple of them gave us the impression that she would recover!

Thank you. I’ll check it the site and hopefully learn more.

the Gp doesn't decide who gets care and who doesn't and people don't have to be at the end of life to get care. Did he mean "end of life (palliative) care?

Heart Failure is a bit of a non-diagnosis.

my father has heart failure but is on various medication and has been for many years.
my FIL has heart failure and again is on many meds and has been for about 4 years since he was given that diagnosis.
my MIL was recently diagnosed with heart failure to add to the long list of things she has.

If your relative has been given a terminal diagnosis then they will be eligible for attendance allowance (age uk can help you apply) which will help to pay for some care.

Upfront in a way (with hindsight) I found quite amusing. Talking about a dnr for my dad - "because it's not like it's portrayed in the films, we'll break all his ribs if we try and resuscitate him".

Not entitled to care paid for by the NHS as the relative isn’t in the last days/short weeks of life is likely what the GP meant. Anyone who wants care can have it - it’s just deciding who pays

In all fairness it’s not an exact science. Doctors can’t give accurate timelines

My DF had been suffering from a chronic illness for decades and had increasingly regular infections (common with that illness). He spent several weeks in hospital before being home to 'recover'. In the final few weeks of his life he became increasingly frail (despite blood tests showing that the infection had cleared), showed very little interest in eating (unusual for him), slept a lot and generally lost interest in everything. I have no particular experience of these sorts of things but a quick google was enough to make me suspect he was just coming to the end of his life. He had carers several times a day and had home visits from his GP. The GP and the hospital doctors all talked about plans for his recovery and were sending him for more tests etc. I suspect that because he didn't actually have a terminal diagnosis and people do recover from the infection he had, no one wanted to broach the subject. I did wonder if perhaps in these situations they wait for family to ask, but that's very difficult to do when everyone else is acting like it's just another small illness to overcome and he'll be fine in a few months.
The only people who indicated it might just be his time were the paramedics who came in his final hours and asked before they treated him whether he should be resuscitated (mum and brother insisted everything possible should be done to keep him alive, but that's another thread).

Thank you for sharing your experience. My elderly relative does seem to think they are going to get better in another few months, so it’s making it very hard to put carers in place as I think they don’t think they will require help over the long-term. Although to anyone else looking in it’s very clear that this is going to be a deterioration not a recovery. But I guess a lot of elderly people think they are going to recover at some point, especially if they aren’t being told otherwise by a health professional.

Could you suggest to your relative that they just get carers in or go into an home until they get better? Many people always think they are going to get better. My mother thought she was just going into the nursing home until she could walk again but never has.
A lot of what you are prepared to do depends on your feelings and closeness to this relative. I don’t think many people would take being told that they were selfish but if they have always been kind to you before their illness then that is a different story.
Have you thought about developing a fake medical condition yourself to excuse yourself to your relative and uncle? This would give you a break and force the carer issue.

I’m not sure they would accept that either.

My uncle and elderly relative get really quite nasty if I can’t do what they ask. Even if I’ve had other commitments I’ve been told that this relative should come first. To be honest I’m not being treated fairly at all. If I stand my ground my elderly relative starts crying and saying I’m making them even more unwell. It’s not the nicest dynamic and my uncle only really contacts me to ask me to do even more.

But they couldn’t come first if you invented a contagious disease or a broken leg. OP, I think you are being bullied by both your relative and uncle. Is there a reason you don’t want to stand your ground?

No one should feel bullied into caring for a relative. Ideally there would be a care needs assessment, community heart failure team, therapists, all of who could arrange an assessment, adaptations and equipment to make life a bit easier for everyone plus a financial assessment and claiming attendance and carers allowance,

Then its up to you to take your life back. Sorry but it is. As a retired professional involved in community care, it was one of the things I constantly said to relatives which is not to take on more than they can do easily and not to be coerced or guilted (I never used the word bullied but I wanted to) into doing more. Genuinely (and I looked after my Mum too) its not up to what "they" whoever they are, to acccept, but about what you are able to do easily. I say "do easily" because I am assuming that it wil be a longish haul and that at times there may be crises where you will want to do more.
Honestly seriously, this isn't a medical issue, its a family dynamic issue and only you can deal with your aspect of it.
I know this sounds harsh but its said from experience and out of concern for your life. If you always do what you've always done and all that.

While the person has capacity, they can refuse all that stuff and it sounds like the elderly uncle who has the POA is not pushing for the actual person to agree to it because he is finding it easier to guilt the OP. Sorry to say this but if the OP doesn't deal with it herself, no one else can help her.

Your uncle is doing things correctly. If you have POA you have to always make decisions based on what the person would do/requested before they were too ill to make decisions.
Perhaps your grandparent told his son that he wanted to die at home not in a hospital.
If you don't feel you can provide care anymore or if yo then you have to stand up for yourself and say no more. Your uncle needs to step up too. It sounds as though you are being bullied .

totally correct. However that doesn't give the POA holder the right to coerce others.

They might not be entitled to ‘end of life care’ (e.g. support from a palliative care team via the NHS) but they will be entitled to care via Adult Social Care at their local Council. If they are as unwell as you’ve described here, it’s highly likely they’ve got what’s known as eligible care needs under the Care Act 2014. Yes, they may have to pay for some/all of it, depending on their circumstances, but it can be put in place.

You may want to approach the Council directly to request a ‘Care Act assessment’ as it doesn’t sound like the GP is communicating well/clearly here, unless things are being lost in translation via other relatives - EDITED TO ADD - it sounds like this might be the case based on your more recent posts. They certainly won’t have been ‘declined care’ via all possible avenues - it doesn’t work like that.

Wishing you well x

It probably got lost in my long post. I can pass on the advice of my late mums social worker when I just couldn’t cope any more. You can stop or at least cut down. By the time I got this advice, my mum was in a care home but she kept asking to come home and, as she had capacity, she really could have insisted. I don’t think I would have been able to abandon her (I was her only one) but the gist is none of us are compelled to care if we’re unable to (or don’t want to). Caring for my mum was awful so you have my sympathy.

I think you as a family are behind the curve a bit now, and the Caring Group need to have an honest conversation among each other about what is required and what each can volunteer for.

If the elderly person is with it enough to be throwing “you are so selfish” around, then frankly, they can have some clear communication too.

DH has 7% heart failure. I don’t think it’s going to kill him in the near future. He’s got two stents, and some of his other coronary arteries were 60% blocked, when they put the second stent in. I don’t know, but suspect one of them getting 100% blocked is more to worry about? Statins are not controlling his cholesterol.

The consultant was up front with me, when it came to MIL dying. He told me her kidney function was very low, but she was too frail for dialysis and she couldn’t stay in hospital on a drip forever. She was refusing to take the antibiotics, so she wanted to die. The choice was whether she died in hospital or at home? I guess he spoke to me, because I was the relative at the hospital at the time. I told him, I was not a blood relative and it wasn’t up to me. It was for DH and his sister to decide. Anyway she died 36 hours later, before they could make a decision.