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?

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

I'm afraid I agree with this. Having been with my mother and my mil during their final days, they lost the capability to converse in any meaningful way well before they passed away. Maybe that's just my experience but that's how I'd perceive the situation.

Doctors should be upfront, but often they aren't. I work in a hospital and have had the conversations hundreds of times with families where the doctor has skirted round the issue.

From what you have said it seems hospital would not be an appropriate place for your relative. I would be asking the GP to refer to social care and the district nurses. You cannot go on providing all this care, your relative needs help and support from healthcare professionals.

It doesn't sound as if your relative is actively dying, but maybe in the last weeks/months of life. I hope you can get some help in soon.

Yes, I think they probably have a couple of weeks or months left to live realistically. If they caught so much as a bug it would be the end because they are that frail. It’s honestly sad. Nobody would leave a dog in that condition but it seems like social services really don’t care and won’t do anything unless absolutely necessary which, as others have said, we would have to step totally back for that to happen but I’m not sure how we could. If we did that they wouldn’t eat and would lay in their own mess. That doesn’t seem like an option.

to be fair to SS, while the patient has capacity and refuses, there is nothing they can do. Its why you need to have that difficult conversation with the actual person who is dying.

Sadly if your relative has capacity then social services can’t do anything - even if they person is making unwise choices. They’re allowed to make them

If your relative is still verbal and demanding and exerting their will, they’re unlikely to be in the final stages of life, OP. As others have said, the only way to get an intervention is to drop the rope, which means social services have to get involved. They’ll be more than happy to leave it to relatives if you all continue providing round the clock support.

When it comes to end of life, IM(bitter)E, it was like getting blood from a stone trying to get any medical professional to explicitly say my mother was dying. Although she wasn’t old, she had dementia, a fall and (whilst hospitalised) a stroke. She had spent weeks in hospital when they suddenly announced we had 48 hours to make alternative arrangements as they needed the bed.

We were told that the physios and speech therapists had ‘done as much as they could’ and that we ‘probably wouldn’t see much further improvement’, amongst other vague statements. When I asked outright what the prognosis was, we just got a lot of head tilts and repetition of what they’d already said, no actual information, so we had no idea how to approach the issue of her ongoing care. We didn’t know if she had weeks, months or years left - it felt like we were blindly trying to divine the meaning in all these vague phrases and no one wanted to actually tell us what was going on. It was quite unbelievable.

In the end DSis and I doorstepped a consultant on her morning rounds, who look at mum’s notes and cheerfully told us ‘you’ll be doing well if she lasts three weeks’, which was a blessed relief, and the first and only indication that we needed to be looking at palliative care. She died seven days later.

Giving nothing but stupid platitudes is outrageous, when you think about it. Medical professionals know when someone is on the way out, so trying to obscure and skirt around the issue is unhelpful in the extreme. Being honest and framing expectations allows the family to use the time properly, to say their goodbyes, make appropriate arrangements, call other close relatives - instead of wasting all their energy trying to decode gnomic fucking pronouncements.

Good luck, OP. I’m so sorry you’re in this horrible situation.

They can't be forced to accept gp help or go to hospital, maybe next time they call or expect help from you and the family you just say no, sorry we can't help anymore but will ring an ambulance,

My in laws are both nearing end of life. When I have spoken to their GP that has been clear.

For example, when I rang because MIL was not eating & drinking and was having difficulty swallowing the doctors response was along the lines of “well these things happen when people are getting to the end”

I am not sure that either MIL or FIL have had that frank discussion with doctors that they will not get better and they are nearing the end.

Getting support is difficult, as long as you can pay you can get a carer, buy equipment etc but getting a needs assessment to make sure the support is appropriate is almost impossible.

Thank for sharing this. Did they not offer any medication or pain relief? It must be scary struggling to swallow. My elderly relative is losing weight (they were thin to begin with) and not eating much.

Doctors usually are very straightforward. Frailty is a diagnosis in itself .
Extremely frail people don’t need to be in hospital . They need an assessment in their usual place of living / home by good GP +- palliative care physician to agree ‘treatment for escalation ceiling’ , do not attempt resuscitation and do not admit to hospital . Usually the most important things are a plan for good nursing care, enough pain relief , access to anticipatory mediación ( opiates , anti sickness , sedation) etc

It would be very normal for the plan to say
no blood tests or investigations
no admissions to hospital
stop medicines which aim to prolong life
don’t admit to hospital
don’t resususcitate

My limited experience of a few frail, elderly people is that they can last an astonishing amount of time, in one case several years. I just couldn’t understand it. Bed bound, mostly sleeping but eating and drinking a little. in one case, she stopped breathing but was resuscitated (not cpr) by nursing home staff but still lived several more years.

I don’t think that it’s possible to know until someone is actively in the stages of dying.

No. MIL is on a variety of tablets for all sorts of things (blood cancer, kidney disease, heart failure) and has difficulty taking the tablets. Only paracetamol for pain relief.

Doctor is not overly concerned that she struggles to take medication and I am guessing it’s because much of it is now essentially pointless although that has not been said explicitly.

It is difficult to tell how MIL feels about things because she is so frail and out of it most of the time. FIL still seems to think they will both “recover”

I am not sure if its still the case but the DNR is important if the person is at home and you think an ambulance might be sent for. I was told that ambulance paramedics can't make that decision and if there is no DNR in place then they are required to attempt it. That was some years ago but I was told by someone who was in community medicine and who I believed.

That is true. There is paperwork that you can fill in which is kept at home and can be given to paramedics.

I also found out that you also need to get this paperwork “activated” should you be admitted to hospital and it will then be in your records across that trust.

I would agree with others that the end may not be as close as you feel it is. Be very careful to look after yourselves as well. My Dad didn’t want carers but ultimately it was too much to manage without and they were in four times a day.

Having regular medical professionals in also enables signs of discomfort to be spotted and action can be taken to keep the patient comfortable. We had end of life medication in the house for a couple of months before it as needed. This was pain relief, a sedative and a drug to dry up secretions from memory.

I saw their medical notes and saw that the doctor had wrote a DNR for them and that’s where I also found out just how frail they were. It was weird that we weren’t told this and just happened to find out by looking at the notes. They wouldn’t survive CPR anyway so it didn’t come as a surprise to anyone except them. They still think they will recover.

I’m sorry for your experience but that is not always the case.

Palliative care teams and district nurses tend to be very good at having difficult but clear conversations and preparing relatives. It’s not an exact science though and a prognosis can be difficult. I had a patient fastracked home with a prognosis of short days - he lasted 4 years yet another was given months but he was gone in 2 days.

What is your relationship with this person, your uncle has poa qnd seems to be respecting their wishes. You wouldn't be told their prognosis or be involved in a dnr decision unless you had poa or the relative gave permission. Social services could carry out a care needs assessment but as they have capacity that is their decision, has anyone sat in with the GP when they visit, have they been offered painkillers but refused them, do they have a district nurse or GP fraility nurse who could visit and see if they can offer any support. Social services could arrange a carers assessment.

They may well know they are approaching the end but are in denial, the doctor has assessed them as frail and there is a dnr in place which should have been discussed with them at the time, if they want to stay at home the GP needs to issue a community dnr or a copy of the original. Being angry and demanding might be their way of having some control, have the family told poa uncle that they can no longer cope.

I agree with this.

I have already commented on DF end of life which was a positive experience.

With Mum it has been harder. She is not safe at home because she can get herself out of her chair. She has had more than 6 falls this year. Two ended up in hospital.

She was told that she was fit to go home. The doctor meant that she was medically fit because they had sorted her erratic blood pressure. OTs wanted her to go home with 4 carer visits a day. I was begging them not to because she was not safe. I found out later that they send people home until they reach crisis point. Once they found that Mum was a self finder and that I had POA we suddenly got a care home place. She has still fallen twice.

I am in the process of trying to get the care home GP to see her and tell her that she is not safe to go home. It is the truth. Just no one has actually told her.

How did I get my message across about not providing more care at home? I said to the other person who had POA that I was unable to continue providing the care.

You have not said how much care the person with POA is taking on - but please do not feel guilty. You are not selfish. You clearly are caring or you would not be asking these questions. So you need to call social workers for an assessment, say that you cannot keep this up. Offer your relative the choice of carers in the home or a respite in a residential setting. Nice homes cost, but some feel like very nice hotels with lots of activity going on.

Please come back for more support/tell us how you are getting on.

They often just can’t handle being upfront. The nurse that found my Dad had died told me he was ‘sleeping’. She just couldn’t actually tell me he had died.

Pressed post before I meant to. I hope you’re ok OP. Perhaps if you can, ask for some more information and some explanations about clinical decisions. Your mum is entitled to an assessment of her needs from adult social care, so do look into this if needs be. PALS is always there if you’re struggling too, and you need some advocacy support (I’m sure they do this and don’t just deal with complaints but if I’m wrong hopefully someone with more knowledge about this will come along to post).

I dont think the relative is op mum, it's the uncles parent i think who also has poa and the relative refuses care.

We split care 50/50 most weeks. There was a point where I was doing a lot more including nights and I said I couldn’t do it, which caused some resentment. As I don’t have POA I haven’t been there for doctors’ appointments, so I don’t know what was agreed. While I’m expected to take on equal care I don’t have equal rights and that’s been made very clear to me.

My elderly relative has quite extreme social anxiety, particularly around people they don’t know. I’m sure that’s playing into some of the decision making and clouded judgement but, again, we are past the point of getting help for that. I have raised the issue of getting social workers and the POA said they enquired and were refused care. No idea if this is true.

But if your relatives have capacity then the GP will not discuss their health with you or anyone else, unless the relatives have requested it. The only other person they could discuss it with is the person who has POA. This is patient confidently.
I think most people who say that doctors are open are people who have POA or whose relatives have given consent.
GPs seem to be more concerned about patient confidentiality than hospital doctors as they are worried about being sued.