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?

It’s all very well avoiding hospital, but the problem is who is going to look after the person? That’s usually the problem anyway in my experience. Because you have no idea how long it’s going to be.

This is a valid question...but who will care for them in hospital? They'll be miserable, uncomfortable, harassed by nurses doing obs and other patients screaming etc., but no one which actually provide care. No one will ensure they have food to eat or spoon feed them if they need it, no one will take them to the toilet (eventually someone may come, but they better be prepared to sit in their own shit for a few hours), no will make sure they're not too hot/cold, no one will keep them company, no one will make sure they get their meds on time (if at all). Hospitals are not as they should be or as we would like them to be. A care package that supports care at home is better for the individual sick/dying.

In my experience you are very lucky to get an up front doctor. The staff mean well but seem to have a blind spot for patients who they can't cure. As a society we need to get better at talking about death.

Going through something similar with my dm at the moment and I’ve had a mix of very blunt get here now type messages and euphemistic waffle. I don’t do euphemism.

There is no “test” for end of life as such, and if someone was deemed to be at that stage hospital would certainly not be an option.
Your uncle is honouring his father’s wishes by caring for him at home. He’s doing the right thing imo,

i’ve found doctors to be upfront about end of life. It helps put in place home health visitors and/or get on the list for hospice/palliative care, and they want to make sure people get a chance to see their loved ones. Hospital is not place to die though.

End of life care can be given at home. But also people can be surprising and can rally when previously it seemed they would die.
If the direct question isn’t asked - am I dying/is elderly relative dying/how long do they have left etc then often the medics are not clear because they haven’t been asked.
There should be sufficient pain meds though. Is the GP involved in this ?

It’s all very well avoiding hospital, but the problem is who is going to look after the person?

District nurses, carers, occaional GP visit and family.

Packages put in place via adult social services - hospital discharge teams and GP - some paid for for periods of time rest paid for from parents savings.

Family members who got hospice places tended to have things like cancer and obvious outcomes - with older ill people when it was lots of things with unceratin outcomes they were in care homes or died in hospitals bar dad who died at home.

I think it's very difficult . I worked in a care home for 20 years . We had ' creaking gates ' ( no offence intended ) who confounded everybody's expectations , 2 in particular were expected to pass on imminently every day for 10 years ! Others turned their faces to the wall and passed on very quickly . And there were the totally unexpected ones who were fine one day gone the next . I wouldn't have dared to predict even after 20 years of day to day working with the frail elderly and dementia patients .

Because it’s become unmanageable for
the family to look after them. They are scared of being alone as they are so vulnerable, which is fair enough. We’ve suggested live in carers but they have rejected that. I guess I don’t want them to be in pain and I want them to be diagnosed correctly, which a GP can’t do on a home visit.

But it’s not just him though. We are talking all family members getting multiple calls during the night. We are talking about them
demanding around the clock care when people have other commitments. They absolutely refuse to have live in carers. People can’t live on no sleep and caring for someone 24/7.

I fully appreciate how utterly soul destroying and heart breaking the situation is, but the primary question is whether the relative has capacity and where do they want to die? Are they aware they are dying?

if the relative has capacity, they are free to make poor choices. How much the family facilitate that poor choice is a personal matter. Hospital is not the place to be if they don’t want it. It’s likely to exacerbate or cause confusion and agitation and may not be the best place to elevate symptoms. Which is what care of the dying pathway is focused on and can be delivered in the community. I am so sorry you and your family are going through this, but your uncle is right, he’s following his father wishes.

They aren’t aware that they are dying but cry a lot due to pain and feeling unwell. It’s causing more frustration for them as they don’t understand why they are getting worse and not better as the doctor hasn’t told them what’s happening. They refuse to get the tests they need in hospital as I think they are scared that they won’t come out again. However, while this is happening they aren’t getting the meds they need to help them. They do have capacity though, but the whole situation is causing a lot of resentment and it shouldn’t be like that. Even if we had a nurse coming in a few times a week would be helpful. And having access to pain killers for the time that we may need them.

I agree it’s a lot to ask of family, particularly when you don’t know how long for. It hard if the person has capacity - they are entitled to make their own decisions however unwise you think they are. You are however not obliged to provide care. No one is. If they have rejected home carers, It sounds like a residential care home would be the best option to me - if they are self funding this is relatively quick and simple to arrange. If not you are at a social workers mercy.
It sounds like you are well past the point of a ‘diagnoses’ being of much practical use or benefit.

If the relative has capacity and they want to stay at home then they are allowed to.
They also have the right to refuse carers.
They do not have the right to ask people to visit them at all hours or care for them. This needs to be made clear to them. Maybe the relatives should put their phone on silent.
I would like to die at home and it would be great, if when the time comes, everyone could just leave me alone even if this means I die earlier.

Yes - definitely in my experience, they are quite up front with the patient and their family as more family support is undoubtedly going to be needed.

If the family can’t support them though they don’t have to - there is no legal requirement.

If the patient still has capacity then the GP will need to respect their wishes

I think it may depend. The wonderful consultant who told me my dad was (is) dying was gently upfront about it. He has a cancer diagnosis and the consultant answered my questions and was very kind, and has arranged palliative / end of life care for my dad. Perhaps it is different with cancer?

Editing as I just saw your next post. I think that they need a diagnosis and once they are in the end of life care system this has been very good - the district nurse comes twice a week and hospital bed/pressure cushion can be arranged. You need to be in that system though. We are not in the situation of needing carers since my mum (and me) can currently manage what’s required. My dad would never ask though.

3 relatives, we weren’t warned no. Bit of a shock and very upsetting. The first time I was on my own and all the relatives had left to get rest. The staff must have realised but didn’t say a word. They probably know the person can hear and don’t want to mention it though.

Have they ruled out care homes as well?

TBH adult social care - may be next stop and assesment to see if they can cope at home - though they may say they are fine when they are not. Also ask GP about district nurse visits and pain relief.

It is hard - but family may have to put in more boundaries and be very clear what help they can provide or insist on more care coming in.

TBH Mum had huge issues with the carers coming in even when Dad clearly needed them and even when she did admit she couldn't cope without them- they were very varriable in quality as well.

What happened at the last GP visit? Was the full situation explained to the GP re pain and upset?

It's not unusual for a GP to visit a couple of times a week in the case of someone coming towards the end of life, however once it's certain that end of life is near District nurses tend to step in. It's also not linear, I have seen end of life medication supplied and not needed. I think the family need to contact GP again and get some pain relief sorted, then re-asses once pain is under control.

Family no matter the size can perform miracles and be there 24/7 for an unknown amount of time.

In my area the is a hospice and something called 'hospital at home'. Someone needs to ask the GP about other services that can help. Maybe even paying for a carer to visit once or twice a day to lighten the load.

I’m so sorry you and your family are going through this. My lovely mum died a few months ago following a very long period of being bed bound at home. My dad did an amazing job caring for her and they had carers coming in 4 times a day (they were in the fortunate position to be able to pay for this). I know it’s not something my mum would ever have planned but it got to a point where she was so frail that to move her anywhere would have been highly traumatic for her (and us). There were many points over the time she was in bed that she seemed much worse but would then (thankfully) improve again. Sadly on the last occasion that wasn’t the case, we called the paramedics and a wonderful doctor came out who gently said she’s on end of life care but couldn’t give any time frame. The district nurses were contacted and could administer any morphine etc that he’d provided (we had a contact number for them). At this point mum had stopped eating then a couple of weeks later stopped drinking, her gp surgery were shockingly bad and I got a lot of information through ChatGPT (controversial I know!) about what to expect/could she be in pain/how aware was she etc and it really helped me. Personally unless someone has uncontrollable pain in that situation I don’t think hospital is a great place to be (unless there’s something medical than can actually be solved) but it does sound like your relatives need a lot more support at home and input from the district nurse.

Thank you for the advice on Dr Katherine. That is so helpful for my relative. Amazing lady.