Please or to access all these features

Elderly parents

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

149 replies

KellyK2026 · 13/09/2026 11:13

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?

OP posts:
Ilovemyfam · 13/09/2026 21:11

TBH I think that you can go with your relative to Doctor's appointment as long as the patient is happy about that. To find out more about social worker decision you could tell your uncle that you have more information so you would like another meeting. If your relative has capacity then POA for health would not be enacted anyway. It sounds as if they are misleading you. This may be knowingly or not.

You say that you and uncle are 50/50 in terms of care. Then you should be 50/50 in terms of decision making. You may not want to, but I for one would not blame you if you said that you want to help advocate for the relative to get more care or you are walking away. Sometimes it takes that sort of crisis to make a change. It might end up with your relative getting better care and more pain relief. You may upset them but you are doing it because you care.

HeartyViper · 13/09/2026 21:24

In my experience, when DM was (hindsight) obviously end of life, the doctors were very upfront, we were trying to hold onto any hope (young, tragic out of the blue cancer diagnosis, and my sweet DM was gone 14 months later) but the doctors were blunt.
They’d tried to send DM home but we couldn’t meet her needs (complex spinal mets, brain mets etc etc) and we were lucky to get a bed at a hospice as per DMs wishes on her Respect form.
Frankly, the hospital was the most horrid place for her to be - and I would have loathed for her to pass away there. Every thing was a fight, and I don’t blame the individual nurses but they were understaffed and overworked and the care as a result was very poor.
The hospice was a peaceful end with utmost dignity, care and compassion.

However, I would insist on palliative care team getting involved. They can then set off other things in motion - funding for help, pain relief, just in case medications including ones for terminal agitation, or anxiety.

Sending you best wishes, it is ever so hard and draining.

Ilovemyfam · 13/09/2026 21:26

You are right in saying that being frail is not a reason to be in hospital. My father did need to be in hospital to try and sort out his swollen limbs, but that is where he contracted Covid - I suspect from the consultant. He died a few weeks later.

It does not change the fact that this relative does not seem to be receiving the right care at the moment.

MissMoneyFairy · 13/09/2026 22:28

If your relative has capacity then your uncle poa cannot make medical decisions so someone is not being straight here. I thought many family members were involved in caring or is it just you and your uncle. Has anyone asked your relative if they would like to speak to a nurse or doctor about getting some painkillers and some equipment that will make them comfortable. I wouldn't push for a hospital, there's nothing stopping any of you contacting the gp with your concerns.

godmum56 · 13/09/2026 22:50

MissMoneyFairy · 13/09/2026 22:28

If your relative has capacity then your uncle poa cannot make medical decisions so someone is not being straight here. I thought many family members were involved in caring or is it just you and your uncle. Has anyone asked your relative if they would like to speak to a nurse or doctor about getting some painkillers and some equipment that will make them comfortable. I wouldn't push for a hospital, there's nothing stopping any of you contacting the gp with your concerns.

GP won't discuss it with anyone except the patient unless the patient doesn't have capacity or has given permission. they can (IIRC) discuss to a certain degree without a health POA if capacity is lost before a POA was enacted and its thought beneficial to the situation to do so.
@KellyK2026 if you are being expected to give care with no input into decision making or control over what you do, I'd be having a good old foot stamp over this and a very clear "conversation" with the POA holder.
I have RTFT but its not staying clear in my mind. I thought the ill person had refused assessment and external care, but now its beginning to sound as though the POA holder is not being completely honest. It also sounds as though the OP doesn't really understand what the options and facts are. Hopefully she will come back and tell us.

Blushingm · 14/09/2026 06:02

KellyK2026 · 13/09/2026 20:41

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.

Edited

They may have been ‘refused care’ for many reasons. Unless at the very end of life l, care is usually classed as a social need - eg continence care, meal prep etc. if relative has money then they’d be expected to pay for it. Also if they haven’t consented to a care assessment and have capacity then again they would be ‘refused care’ as they’ve not consented.

katgab · 14/09/2026 06:41

I was struggling with caring for my mum and ended up speaking to her social worker. Her advice was that I could refuse all care. By then, mum was in a care home but kept saying she should go home, believing she had been doing all manner of things that she hadn’t done (I’d done) for years and was perfectly well. I don’t think I’d have been able do that for a whole variety of reasons but maybe, though it wouldn’t be well received, you could. I mean, for a start, I’d be saying no to the overnights. Resentment or not, this will make you ill.

My mum had capacity to the end but her gp did communicate with me, as did the care home. However, even the palliative care nurse couldn’t give me a rough indication how long end of life would last. Mum was very frail and had all kinds of medical problems but she seemed to just go on and on, living to the age of 95. There were times when I thought she would outlive us all. In the end, she made the decision not to go to hospital for treatment for anaemia which might have given her a few more weeks/months. Whether she understood that would be the end I don’t know but she was completely fed up of being in and out of hospital (she had been for 2 or 3 years by then) and believed they did nothing for her there (this wasn’t quite true) so there was no point. They’re not comfortable places, the staff were extremely busy and the care in her care home was a lot better. In her own home, it wasn’t but that was partly down to her and her stubborn refusal to accept help or even think she needed it, resulting in me picking up the pieces until the situation was hopeless. Got to say, even a couple of days before she died (and she was dying by then) she was able to have a go at me for not complying with her wishes (which were unsafe). They were the last words she was ever able to say to me.

I do feel for you. It’s a very difficult time. Sending you best wishes whilst things are so difficult.

AprilMizzel · 14/09/2026 10:16

Sometimes it takes that sort of crisis to make a change. It might end up with your relative getting better care and more pain relief. You may upset them but you are doing it because you care.

MIL was helping a nieghbour who had a stroke - stoke patient husband was doing most things it had started as a short term measure but kept on for nearly a year. She stopped with covid - though it was already taking a toll on her - it was taking a huge toll of the DH very much in denial that wife would get completely better. Her stopping really uspet neigbours but was catalyst to accepting help family and HCP had been trying to get them to take.

What happens if you are taken ill or have to go away?

While I’m expected to take on equal care I don’t have equal rights and that’s been made very clear to me.

Then take the hard decision and say no more often - I can't continue do this as it's badly affecting my health.

My parents damaged their health with my DGP demands they put boundareis in far too late but they did reach that point and then care situation eventually had to be re-thought.

MysterOfwomanY · 14/09/2026 10:19

IME hospital doctors can be very twitchy about being upfront with relatives that their loved one is dying. I have had to come in and (as a PP said) doorstop a doctor to be able to have a frank conversation, more than once. And another time had to endure a tortuous session where the doctor tiptoed up to mentioning DNR for a relative who was VERY OBVIOUSLY DYING and the family all knew.

GPs I can't speak about.

To an extent though, I wonder if the question about remaining lifespan is a distraction somewhat?

Symptom management sounds like the goal here - dying imminently or not, nobody likes pain. (And some drugs work for pain relief and as mild antidepressants yay).

MissMoneyFairy · 14/09/2026 11:48

If the medics have said relative (?grandparent) has capacity then they must have been assessed so health poa is not appropriate

HoppityBun · 14/09/2026 11:49

MissMoneyFairy · 14/09/2026 11:48

If the medics have said relative (?grandparent) has capacity then they must have been assessed so health poa is not appropriate

I’m not sure that’s right. They can only say that the relative does not have capacity after an assessment. But they won’t do an assessment unless there’s some doubt. My limited experience is that they will not do an assessment if, from speaking to the person, they don’t think there’s an issue. This can be frustrating, but it does take their time to do a formal assessment..

MissMoneyFairy · 14/09/2026 12:05

You can still be assessed for capacity, the GP or whoever does it decides yes they have capacity so can make their own decisions or no they don't so health poa can start acting in their best interests. Op states relative has capacity so someone has made that decision. The elderly relative may of said they want uncle to make decisions, go to doctors appointments etc but legally health poa only starts when there is lack of capacity. I'd ask for a family meeting with relative, uncle, main carers to ask relative what they would like to do, would they be happy to see GP about painkillers, at the moment no one has "legal rights" so either no one understands poa or it's all mixed messages.

DecoratingDiva · 14/09/2026 19:56

KellyK2026 · 13/09/2026 20:41

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.

Edited

Medical POA is not required for you to be involved in medical appointments, it just requires the consent of the person. You can attend any medical appointment with them if they want you to, doctors may ask who you are & why you are there (they usually don’t if the person is elderly & frail) but are unlikely to ask you to leave if the person wants you there.

Similarly you can ring social services and ask for an assessment without a POA.

I have found many adult social care services will happily talk to me rather than MIL and I have nothing formal or official in place. I have spoken with her GP and spoken for her in medical appointments as she will always tell them all is well (when it is not!)

Dont let uncle take control of everything

Lzz · 15/09/2026 18:38

As a nurse, I can sadly say that no. They are definitely not upfront about it. They often skirt around the issue and people can end up having horrible end of life if they don’t have people (nurses and family usually) fighting for them. You can use ‘Martha’s rule’ if they are in hospital. Say you do not think deterioration is being recognised and symptoms not being addressed. Also ask for a referral to palliative care. Good luck and I’m sorry you’re going through this.

godmum56 · 15/09/2026 19:12

MysterOfwomanY · 14/09/2026 10:19

IME hospital doctors can be very twitchy about being upfront with relatives that their loved one is dying. I have had to come in and (as a PP said) doorstop a doctor to be able to have a frank conversation, more than once. And another time had to endure a tortuous session where the doctor tiptoed up to mentioning DNR for a relative who was VERY OBVIOUSLY DYING and the family all knew.

GPs I can't speak about.

To an extent though, I wonder if the question about remaining lifespan is a distraction somewhat?

Symptom management sounds like the goal here - dying imminently or not, nobody likes pain. (And some drugs work for pain relief and as mild antidepressants yay).

i agree with the distraction thing. I think its (comparatively) easy to move from treatment to palliation but honestly from personal and professional experience, while its sometime possible to see clear symptoms that will inform that someone hasn't got long, its often not. I know that hospitals have largely stopped calling relatives in "if you want to see your relative" because people either get called several times or they arrive too late which is very painful.
I also kind of think, in the OP's case, that the problem does not lie with the doctor if the person is refusing care from anybody but family. I mean if what the OP is indicating is that she would put up with the current situation if it was only going to last for eg another 2 weeks, then she is not going to get that information. in the whole of my career I have never seen a patient agree to care where they had previously refused, because they had been told they were dying. So who does the OP want the doctor to have this conversation with?
Kindly I wonder of the OP knows what the problem is....that she is not coping with the care she is being expected to do....but is a bit confused as to what the solution would be.

Blushingm · 15/09/2026 22:01

Lzz · 15/09/2026 18:38

As a nurse, I can sadly say that no. They are definitely not upfront about it. They often skirt around the issue and people can end up having horrible end of life if they don’t have people (nurses and family usually) fighting for them. You can use ‘Martha’s rule’ if they are in hospital. Say you do not think deterioration is being recognised and symptoms not being addressed. Also ask for a referral to palliative care. Good luck and I’m sorry you’re going through this.

As a nurse I disagree - the GPs and hospice/allistic doctors are very upfront and honest about people reaching end of life

MissMoneyFairy · 15/09/2026 22:37

Blushingm · 15/09/2026 22:01

As a nurse I disagree - the GPs and hospice/allistic doctors are very upfront and honest about people reaching end of life

I agree. The problem here is not the doctors, its the uncle and the relative who clearly don't understand the role or responsibility of health poa.

AppropriateAdult · 15/09/2026 23:15

FunPreventionOfficer · 13/09/2026 11:38

It’s amazing how medical professionals that deal with death on a daily basis can’t be upfront with families when their relative is dying.
My MIL was dying and a consultant asked us if we’d heard of anorexia as an explanation for why she wasn’t eating.
Google Dr Kathryn Mannix, she has put a lot of useful end of life information out there that you might find helpful.

I know this is incidental at this stage, but ‘anorexia’ is the medical term for loss of appetite, something that happens to most people towards the end of life. It’s completely different from the eating disorder ‘anorexia nervosa’.

Fondmemories · 15/09/2026 23:17

MakeItRain · 13/09/2026 11:47

When my dad was dying of cancer I found the doctors were quite vague about how long he had left. The nurses however were much clearer and more accurate. This was in a hospice though so the outcome was known. I'll always be grateful to those nurses who spelled it out and enabled me to prepare and say goodbye. In hindsight I think they just spent so much more time with the patients they were more experienced in seeing little signs. I know the doctors worked their socks off so I have no criticism of them either. I just think they seemed a lot more wary of giving any information that might not be accurate.

My father died on a hospice and I got very frustrated that the doctors wouldn't be clear about the timeline. He died when I was on my way up on the train. If they had been clearer I would have come earlier.

FunPreventionOfficer · 16/09/2026 08:01

AppropriateAdult · 15/09/2026 23:15

I know this is incidental at this stage, but ‘anorexia’ is the medical term for loss of appetite, something that happens to most people towards the end of life. It’s completely different from the eating disorder ‘anorexia nervosa’.

I appreciate your comment, thank you.

KellyK2026 · 16/09/2026 14:40

MissMoneyFairy · 15/09/2026 22:37

I agree. The problem here is not the doctors, its the uncle and the relative who clearly don't understand the role or responsibility of health poa.

The poster didn’t say that and I’m honestly finding a lot of your comments to be extremely unhelpful. Which is why I haven’t responded.

OP posts:
KellyK2026 · 16/09/2026 14:45

godmum56 · 15/09/2026 19:12

i agree with the distraction thing. I think its (comparatively) easy to move from treatment to palliation but honestly from personal and professional experience, while its sometime possible to see clear symptoms that will inform that someone hasn't got long, its often not. I know that hospitals have largely stopped calling relatives in "if you want to see your relative" because people either get called several times or they arrive too late which is very painful.
I also kind of think, in the OP's case, that the problem does not lie with the doctor if the person is refusing care from anybody but family. I mean if what the OP is indicating is that she would put up with the current situation if it was only going to last for eg another 2 weeks, then she is not going to get that information. in the whole of my career I have never seen a patient agree to care where they had previously refused, because they had been told they were dying. So who does the OP want the doctor to have this conversation with?
Kindly I wonder of the OP knows what the problem is....that she is not coping with the care she is being expected to do....but is a bit confused as to what the solution would be.

We got the diagnosis today - heart failure. I think we kind of knew that. The doctor didn’t tell my elderly relative but told us. When asked how long they had left he couldn’t say. I had a look online and it says the prognosis for someone their age and with that diagnosis is between 6 months - 2 years. Now they have been having symptoms for almost a year, so I’d say they are a year into it. Doctors couldn’t give any meds or anything but they do need round the clock care, which has fallen to family. It’s a worry to be left in charge with no end of life meds knowing that she might die soon or not. And let’s face it, with a stretched NHS and ambulance service, they aren’t going to rush out for an elderly dying person if someone else requires help (understandably). It’s all a bit of a mess.

OP posts:
KellyK2026 · 16/09/2026 14:49

Lzz · 15/09/2026 18:38

As a nurse, I can sadly say that no. They are definitely not upfront about it. They often skirt around the issue and people can end up having horrible end of life if they don’t have people (nurses and family usually) fighting for them. You can use ‘Martha’s rule’ if they are in hospital. Say you do not think deterioration is being recognised and symptoms not being addressed. Also ask for a referral to palliative care. Good luck and I’m sorry you’re going through this.

That’s what I’m worried about. We got the diagnosis today - heart failure. The doctor couldn’t tell us how long but I had a look online and apparently for someone their age the prognosis is 6 months to 2 years. They’ve already been having symptoms for almost a year I’d say, so they are probably well into it. They definitely need round the clock care and are deteriorating quickly but we’ve been left with no end of life meds or anything because they can’t give a definite date (which I wasn’t expecting, but still). It’s a worrying situation to be in.

OP posts:
godmum56 · 16/09/2026 15:24

KellyK2026 · 16/09/2026 14:49

That’s what I’m worried about. We got the diagnosis today - heart failure. The doctor couldn’t tell us how long but I had a look online and apparently for someone their age the prognosis is 6 months to 2 years. They’ve already been having symptoms for almost a year I’d say, so they are probably well into it. They definitely need round the clock care and are deteriorating quickly but we’ve been left with no end of life meds or anything because they can’t give a definite date (which I wasn’t expecting, but still). It’s a worrying situation to be in.

Did you speak to the Gp yourself? because as I and others have said, the answer to "care has fallen to family" is "I can't do it" Kindly, did you google "heart failure (which is itself a catchall diagnosis) or "end stage heart failure?" Did he actually say "heart failure" or is that what someone else has told you? because the actual diagnosis would be likely to be "congestive cardiac failure" which basically means that the heart is wearing out. There are no end of life meds for this because nothing helps in the end stages.

KellyK2026 · 16/09/2026 15:41

godmum56 · 16/09/2026 15:24

Did you speak to the Gp yourself? because as I and others have said, the answer to "care has fallen to family" is "I can't do it" Kindly, did you google "heart failure (which is itself a catchall diagnosis) or "end stage heart failure?" Did he actually say "heart failure" or is that what someone else has told you? because the actual diagnosis would be likely to be "congestive cardiac failure" which basically means that the heart is wearing out. There are no end of life meds for this because nothing helps in the end stages.

I did and he said heart failure. I thought we might be given pain medication or something for them. Heart failure is not something I’m familiar with so I don’t know what to expect with it. Whether the heart just gives out suddenly or it just stays a gradual decline. Apparently we aren’t entitled to care as they aren’t considered and of life, which baffles me.

OP posts: