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?

My father passed away in hospital. This was not really what he wanted, but he was already in hospital because they were trying to sort out why his legs were swollen. It would have been too distressing to have him taken home. Those potholes on the route to hospital were just too much!

What I found odd was that the consultant mooted the possibility of kidney dialysis - Dad was 94 and his Respect form had stipulated that he did not want new procedures. I confidently refused on his behalf, but still, that seemed to me that he was not appreciating that Dad was at the end of his life. Also one of the last meaningful things he said was “I want a banana, I just want a bloody banana”. The doctor was unhappy when I went to the shop and got one. Bananas contain something that was already high in his blood tests.

The nurses were so kind to all of us. They clearly knew what was happening. We stayed with Dad for a good few hours daily. We had tea and biscuits on tap. Mum could not manage longer stints. They were not able to call us in for his last moments. Staff were very upset. I think very highly of them.

It is completely understandable that the family no longer feel they can care for your relative. But from the way you describe his frailty, hospital is not the answer. He would not withstand tests or treatment (and doesn’t want them). He needs to be kept more comfortable and have better pain control, and that can be done at home by professional carers and visits from the GP. I realise he is refusing carers, but that would be what I'd be aiming for, rather than hospital.

My mother was 'end of life' for about two years. She was in a care home so had professional care to keep her comfortable, and visits from GP or nurse to deal with pain relief as needed. It was agreed that she would not go into hospital.

I’m very sorry to hear about your mum and I hope you are doing well under the circumstances.

I’m not sure about how much money they have in the bank but they have a lovely large house, and some family members thought that they might be able use the house to pay for carers. They are absolutely unwilling to do this as they didn’t like the sound of strangers being in their home.

We are scared to leave them on their own as they can’t get out of bed and spend a lot of the time in tears and frustrated (often saying mean things out of frustration such as calling people selfish for not staying overnight). It’s an awful situation as it’s almost too far gone now to do anything.

Have you asked the GP for a hospice referral? I’ve had mixed experiences with hospice services, not a criticism as they just don’t always have the capacity, but the hospice at home service was of huge support when my dad was dying.

Hospice staff are also the experts in pain meds and being able to keep patients clean and comfortable.

Contact the adult social care team and ask for an urgent care needs assesment.

Age UK Advice Line: Call 0800 678 1602 (free, open daily from 8 am to 7 pm) for guidance on arranging care.

Independent Age: Call 0800 319 6789 for free advice on older people's welfare and care options.

Contact GP and ask for home visits and district nurse care.

It's not uncommon for older peopel not to want carers in their house - I know my Mum was take aside by nurses on wards and frimly told not to say no to any care. Sometime hearing it from proffesionals does make it clearer to people.

It is very hard and sadly very common situation- but there are routes to get additional help. Plus even when HCP were very clear and blunt my parents did not want to hear it and did not take it on board.

You need the gp to refer to the district nursing team and the community palliative care team. Hospital is not the place for this person.
once those community teams get involved they will assess to see what’s going on with your relative.
you can request this from the gp.
no one should be left in pain unless all pain options have been explored.
it might be that carers are best placed to help. Maybe a care home of their care needs are very high.
good luck op, a very stressful situation for everyone.

Yes its common.
You need to fight for her. You need to get pain management installed. Everything is downplayed in order to cut costs/ man power. Hang out with her in her room, take a picnic. Make it plain you're staying till she gets help or is transferred to hospice. These poor souls don't need much but regular , hygiene, turning and PAIN RELIEF. Dying don't get showered with extra attention, so need advocate, like YOU.!!

In my experience each medical person assumed someone else had told us the prognosis and timeframe. There wasn’t much joined up thinking.

No-one is usually too ill to go to hospital.
Unless they have a POA in place for Health and Welfare and have made a choice not to go to hospital then that's their right if they have capacity.
But firstly you would need to check that and check who is appointed as the Attorney.
Secondly you can always get a second opinion and request a home visit from the surgery that they are registered with.
Thirdly you might have to insist repeatedly,my own experience with GP practices is that they can be hard work and obstructive..get past that and your on the way to getting an assessment for your relative.
Some of this will depend if you are NoK ? If not you will need to include whoever this is.
Good luck.

This might be another reason why the hospital wouldn’t admit dad was dying

Maybe they didn’t have the resources to supply at home

Anyway, he was already in the hospital so he was using up quite a lot of resources

It’s a puzzle to me

I was there all day because they do allow you to be there all day if the patient can’t feed themselves. At least they did in 2018.

Then you end up feeding other people! I know the hospital isn’t ideal, but quite often the home situation isn’t either. At least with him in the hospital I had resources and back up to some extent.

I wouldn’t have wanted him to come home, but I think mum might have thought it was manageable.

He got into the hospice in the end, but it was a real battle.

I've just gone through two end of life situations and both times we were told they had x amount of time left but they both had terminal cancer.

I think if it's multiple things going on, they won't be able to give a time frame. I've seen people with multiple things going on and lived for a lengthy time and it's rubbish as there is no clear time scale and you just have to watch them in pain.

What i will say is that once they stop eating, that's when they won't have long left. I know this doesn't help in the here and now but it means you can prepare for the end.

Hospital also won't be the best place for them and there are no tests to determine how long they have left.

I'm sorry you're going through a tough time

Doctors don't often know the prognosis. My nan went a lot quicker than any health professional expected. I knew she was dying but no one else seemed to, maybe family just have that instinct. On the other hand, my grandad was put on end of life care twice then taken back off.
I'm a social worker and was talking to a GP about it as she put someone on end of life framework but I'd worked with people who seemed much worse and were not put on end of life, she said that it is very difficult to give a prognosis and it's not uncommon for people to go on for years after being determined as end of life or for people to die before anyone suspects end of life.

they shouldn’t be in pain. that needs addressed.

pain relief can be delivered at home. in my relative’s case, by a syringe driver that delivers measured doses at regular intervals.

nobody wants carers (ie “strangers”) in their house, especially the elderly who have not worked for some considerable time, who forget that nowadays everyone works, even the women, and dont realise how unreasonable their care expectations of these people actually are.

adult social work or district nurses need phoned urgently. there will be things that can be done. maybe the offer if a hospice for respite for a few days to get the pain under control before coming back home. macmillan nurses are great if he needs cancer care.

its such an awful, sad and stressful time. 😞

It sounds like a really difficult situation ☹️. I think the stress of caring for someone who is very frail is a lot to cope with and having carers coming in definitely changed things for us. They were absolutely amazing and at the end some were very upset as they could see mum didn’t have long left 😢. Had my mum and dad discussed carers as an option a few years ago I know it’s not something either of them would have wanted but they were honestly lovely to have around in a very sad situation (& I miss seeing them all now!)
If you can get the district nurse to come in you may be able to get some advice there? And from your elderly relatives point of view it must be a very scary time as they probably feel they have very little control over what’s happening to them which must be a horrible place to be in ☹️.
I hope you manage to get something in place to support both your relatives and those who are caring for them. X

That’s the thing though, if I camped out in their room that’s exactly what they want. They want round the clock care but only a few family members to deliver it. They absolutely refuse to go to the hospital and it’s a battle to even get them to see the GP. Any talk of outside help gets met with ‘you don’t care about me’, ‘you’re selfish’, etc. They’ve lived a very insular life and are positively terrified of other people coming in. Objectively you can see that they desperately need help as they are scared to be alone, but they absolutely refuse to go to the hospital. I really think if a GP told them that they absolutely needed to go and arranged it then we might get the ball rolling in terms of sorting out the right care.

OP, you really do need to speak up and keep telling them that you can’t and won’t stay.

I’m sorry you’re in this situation. One observation is that if your elderly relative still has the strength and resolve to refuse outside help or call you names (‘selfish’ etc), it’s possible they are not as frail as you might think. In my experience, when the end is near, the person often sleeps for much of the day, stops eating and basically ‘gives up’ as their body shuts down. Having said that, your relative could still be in a sort of terminal decline but not ‘actively dying’ as such.

Talk to the GP and see if they can be referred to the equivalent of a community matron or frailty team. Their job is to keep frail and chronically ill people out of hospital unless it’s absolutely necessary. They can prescribe medication, take bloods and basically help you to better understand what’s going on and what to expect. When talking to the GP, don’t be afraid to say ‘we can’t continue as we are’ and ‘we need help’.

Also, consider speaking to Adult Social Services and getting some advice there. It’s tricky because your relative has capacity but they might be willing to come out and talk to your relative.

Tbh there is no one coming to help you op… if you want to force the help then you have to stop the care and for your relative, so that they become seriously ill and then call an ambulance. Social services won’t get involved until there is no choice and will absolutely let you exhaust yourself with no fucks given.

Meanwhile the person with POA could be holding out as they want the inheritance and for those not in the will, all the care giving will be ignored at that point .

you decide how much time you can give, stick to it and let others decide what they can do… it’s all you can do

Ask the doctor about end of life care.

Are they still mentally competent? because if they are and no matter how cruel it sounds, you need to have a discussion with them about what you as a family can and can't do and what the choices actually are. I have been there as a carer to my Mum and many times as a professional. There is no diagnosis of being at the end of life. Clinicians will be able to see when a treatment no longer works and that includes pain relief but people sometimes choose not to take it an increased dose because of the side effects. Believe me, hospital is no place to die in. An option might be a hospice if they would accept it.

Is the relative with POA helping with the care?

A GP won't tell them they need to go to hospital. As has been said if they are able to be rude and demanding, that says to me that they are not dying yet.

They honestly can’t breathe properly or open a cupboard door as they don’t have the strength. They can’t get themselves in and out of bed and are losing weight and sleeping a lot. They’ve just always been very demanding.

My mother has been in that condition for 2 years. She is in a home.

@KellyK2026 the issue here maybe not the GP or the POA but the unwell person themselves.
I would suggest you raise a safeguarding concert with the GP and between family members arrange a home visit/assessment.
Unfortunately if the unwell person won’t allow entry etc then a crisis will need to happen before anything changes. Particularly if the unwell person is self funding. I have seen this in my own family.
But you are free to raise a safeguarding concern.