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?

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.

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.

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.

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.

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.

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.

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.

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).

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..

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.

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