Doctor told my frail DF (92) that he has just months to live!

There was a big hullabaloo in the press last year or before about a news story in which it was admitted that GPs regularly get it wrong in predicting how long a person had to live, by underestimating the time.

It was one of those odd stories where you might have to read between the lines a bit. After all, so what if they get it wrong? All the better if someone lives longer than expected. It's not like you'd have the funeral booked and then you have to cancel, is it?

Now I personally understand that the elderly in care homes in particular are put on covert end-of-life care, which is really 'ending life' care. That was my experience with my late mother, who had Parkinson's. It appears to be carried out via dehydration.

It goes like this, it seems - if the powers that be (mainly the local NHS CCG) feel that your parent has less than three months to live, and their condition is terminal (like Parkinson's) then they can legally fast-track that person to the morgue. After all, they're not going to be cured, are they?

Now some can argue the toss about that on this board. I don't care. It does seem by telling your Dad this, it's knocked him for six but if you want and can find the link to the news story and post it. In a recent interview the writer Russell T Davis wrote how his partner had a terminal illness but the truth was kept from him and consequently he lived a lot longer than was expected. So not knowing can be better, that said at around 92, I don't know... 'down to a few years, not months but I've been wrong before' might have been the better way to give the news.

Just about everyone who gets into hospital seems to get Covid it seems but I don't know, it seem he should avoid it. But the whole 'this person is on the way out and has less than a few months' thing, well, I'd be wary of it. The whole NHS Fast-track Continuing Care freebie seemed to go down the route too, after my mum was granted that it was impossible to get the care home to give her enough drink and it seemed we went to war over it. We had to visit daily to ensure it happened - because of this she didn't live another three months but another three and a half years.

It it's clear that doctors are getting life expectancy wrong, the implication is that they're not hastening death but actually murdering their patients and I take it that is why the news story was so significant for those in the know.

I think as adults they should be told if they ask. I think it’s unfair to tell partners or relatives but not the person concerned unless again they ask for that to be the case.

My mother died of cancer at the age of 48, 30 years ago. A consultant told her he had done as much as possible and there was nothing more he could do. At the time it was cruel and destroyed her. She didn’t ask to be told that as there is always hope.

So glad he's still with you and feeling positive. He sounds like an amazing chap.

I meant the OP. Replied a bit late in the proceedings because the thought had only just occurred to me.

I don't know if you meant me or the OP MereDint but if you mean me, if the GP had explained that then he would have understood - although not understood why my mother didn't have one too. She didn't put it that way all though.

I didn't know about the gold standards pathway though, no.

One thought has just occurred to me - there's a thing called "gold standards pathway" for people in their last 6 months. Recently our GP has been going through all it's older patients to see if people should be added to the list. One of the criteria is "would I be surprised if this person died in the next 6 months?" I wonder if this is what triggered the comments to your dad? Not being surprised if someone died in the next six months is very different from giving them 6 months to live.

With my Mum it seemed that they took the view that your need for working lungs and heart is pretty immediate so the diuretics would be given to keep them going even if longer term the kidneys were going to fail.
When they go the blood electrolytes get buggered which can cause fatal heart irregularities.
I too was worried about Mum spending her last days struggling to breathe but that didn't happen - her heart just conked out (see above), pretty quick and merciful compared to some deaths I've seen.

I think if they are allowed visitors that makes all the difference in the world. I hope you are able to visit her - or if not currently then soon.

Thanks for the expressions of sympathy - sorry OP I didn't mean to derail your thread.

I really am sorry for your loss
I can't imagine how awful it must have been to lose both parents in these terrible Covid times. My heart goes out to you.
My own mum is dying of cancer and although I have come to terms with losing her I do pray she can hang on a bit longer so that she can have a better death not spoiled by Covid restrictions.
I think that is the cruelest aspect of this whole sorry thing.

Well, all I can say is that it feels different on the other side of the desk.

It's illogical I know but the not being able to visit and that final month on his own in hospitals and nursing homes at the end of his life make me feel like shit and like I let him down.

By the end he didn't understand and thought I wasn't bothering with him. I phoned and tried to explain but am not sure he understood.

It's strange that my mother at 87 who was never called into the GP from one year to the next or given any sort of checks died before him. I feel that although she was very poorly and it was sudden, her death was kinder because she didn't know stuff. She still didn't understand why I didn't visit her (at the end - although she didn't know it was the end). I couldn't because I had Covid by then (because I had been nursing them) so my brother went. We were only allowed one person anyway.

Shit times eh?

I also really don't think arse covering is a major motivation. In the UK it's not a very litigious culture and the NHS indemnifies health professionals so whilst it would be unpleasant to 'get sued' it would not in fact cost the Dr personally as long as they were not negligent. We all have professional insurance as well.
A formal complaint or a GMC intervention is very scary as you could lose your livelihood but if you practice responsibly you should have nothing to fear so generally I don't go around looking over my shoulder I just do what I believe to be right.

It is a fundamental tenant of the medical profession to be honest. The GMC take a very dim view of any kind of dishonesty and it's a common reason for getting struck off. Drs hold very firmly to the principle that we do not lie. I think that's the main motivation not arse covering just a commitment to honesty being the best policy (tactful honesty sure but ultimately honesty)

I do agree that getting called in for a surprise EOL discussion should not happen. I think some very odd things happened during Covid that would not usually. We were all told that people on their 80s had a high chance of dying from Covid, might not get admitted to hospital and were heavily encouraged to do EOL plans with them and I think this was not done as sensitively as it should have been in normal times. At the time it did feel like the least worst option.

However that just really points up, as previous posters have said, how averse we are to talking about dying. There should be more discussion and more EOL plans as a routine not less and then it would not be such a big deal. I think everyone in their 80s should have had some kind of discussion of their wishes including for information so everyone can be clear. We are now told to talk to every patient admitted to hospital about it even if they are in their 20s.

About informing someone of their spouse's death again it is a matter of honesty. What if he asked how she is? It's a pretty awkward situation for staff to be in. They can't lie so perhaps they felt it better it was done in a planned way. I think I would have probably tried to speak to family before doing so but might not have been happy to wait a few days. It doesn't feel great caring for someone on a daily basis and knowing you are keeping such a huge thing from them ( I have tried it). There is always a big fear there will be some miscommunication and they will find out accidentally and that will be worse and they will hate you for lying.

I wouldn't want doctors to be put in the position of lying of course. If patients ask then they have to be told the truth. But to ask someone to come to the surgery at the back end of the day for what they think will be a straightforward physical examination and to open the discussion with "You need to make an end of life plan" does not reflect this -
Drs are taught specific ways to 'break bad news'. Ask what the patient already knows, ask if they want to know more then provide as much info as they want and a chance to follow up.

And this -
If I am asked by family to withhold information from a capacitous patient then I will decline to do so unless the patient themselves has clearly stated that's their wish.
He was never asked if this was his wish so how would the GP ever know?

I also still feel really angry that that they told a sick (dying) old man that his wife had died immediately - this was presumably because he was her next of kin but come on - could it not have waited a day or two, or couldn't it have been left to his son or daughter to do this?

I know it probably doesn't seem like it but I'm not having a go at doctors, but I just feel there is an awful lot of arse covering that goes on, probably because they are worried people might sue them, and this sometimes seems to get in the way of their patients' peace of mind.

Having said that, I feel I must say that I have nothing but respect for the treatment they received in hospital at what I know what a time of great stress for the medical profession.

As you said OP, your DF has his affairs in order but the doctor didn’t know that. What if he hadn’t? What if his close relatives were deciding whether to go ahead with their long-planned visit or postpone until next year when quarantine/lockdown would be lifted? These are not rare hypothetical scenarios, they are completely normal and a patient who is mentally sharp deserves to be able to make decisions with all the information.

I find a lot of people's attitudes on this thread shockingly paternalistic.

What if it was you? Would you want your DH or your child to be told first and then they decide whether to tell you?? Why is it any different for your parents just because they are old?

This is nothing new. It's a long time since I was at medical school but not telling people their diagnoses went out with the ark. People usually know if they are very sick and dying just from how they feel and what they can and can't do. Not having an explanation for how they feel or a chance to discuss how they want that managed is rather cruel. Imagine you felt really ill, worse every day and no-one gave you an explanation or any choices just didn't offer you treatment.

Drs are taught specific ways to 'break bad news'. Ask what the patient already knows, ask if they want to know more then provide as much info as they want and a chance to follow up. It would only be discussed with NOK first if the person lacks capacity otherwise surely they have a right to be the first to know. If I am asked by family to withhold information from a capacitous patient then I will decline to do so unless the patient themselves has clearly stated that's their wish.

Drs would not put a time frame unless pushed to do so because we all know that death is notoriously unpredictable. We can be fairly sure when someone is dying but much less sure how long that would take.

OP should the Dr have lied to your dad about his test results? Just not mentioned it or made up something reassuring? We really can't do that. The Dr had to explain what the results meant and I suspect the next question is 'can anything be done' and if the answer is 'no' (as it would be for renal failure at 92) then questions about prognosis and dying are going to come up. I seriously doubt the GP just called him in and said 'you've got x months' I expect your dad asked and was given honest answers.

iwantmyownicecreamvan I'm so sorry for what you and your parents went through 💐

If he has capacity it’s between the doctor and your father. I can’t imagine any doctor simply saying ‘ oh by the way, you’ve only a few months left’.

It’s an estimate at best - I was advised to return from holiday early eighteen months ago because my mother had days left. She’s still existing in her end of life state, unaware of much at all.

It’s not, I am afraid, your right to disagree.

OP, my dad died at home of multi-organ failure but it was his kidneys that went initially, then his heart. My mum died of cancer not long afterwards and I can absolutely confirm that my dad's death was a vastly better way to go. He was not in great pain or distress. He weakened and slept more and more over his last days, was lucid until the day before he died, and passed very gently in his sleep.

I hope he can take some pleasure in trying to prove them wrong, or in the process have some enjoyable moments with his family.

I’m not convinced that the policy to tell all patients that they are going to die shortly is the right one

How ridiculous. How can you possibly believe that is a policy.

Patients do have the right to know if they want to know. They have the right not to know if they don't want to know. So these conversations should start with asking them how much they'd like to know. In my experience every effort is made not to talk about timelines etc if that's the patient's wish, or not in front of a family member of it's the family member's wish.

However there is a move to recognise people who may benefit from the kind of things Palliative Care services can offer much earlier than they traditionally do - ie catching patients in their last year of life rather than their last illness/recognising their likelihood of dying within the next year even if they don't have an obviously terminal diagnosis. This can improve their quality of life, help keep symptoms under control before they start, provide pre-bereavement services for family members who they are then familiar with for when the bereavement comes, allows GPs to access Specialist help early on, give advice with financing or arranging any care before it reaches crisis point. And if people are well and not in need of these then they can be taken off the books until they are needed, but they are then known to services and less distressing conversations have to happen in the already stressful last weeks/days of life.

These are all available whether the patient wants to know their prognosis or not.

It should all be down to what the individual patient wants to know. And if this does take the wind out of their sails and mean they would like to go sooner rather than later, I think that's a perfectly normal reaction, sad though it can be to see. It's wrong if that was thrust upon them but not an inherently bad thing, even if it saddens the patient, if they wanted to know.

OP, I'm so sorry you and your Dad are in this position. It sounds like he has some specific fears around dying and it may be worth asking if he can be referred to the Palliative Care services so they can advise on this and come up with a plan that prevents as much as possible any of the scenarios he is worried about (such as not being able to breathe etc.) When the time comes he deserves to pass away with comfort, dignity and in surroundings and with the people he has chosen. Wishing you all the best for whatever the future brings with your Dad x

I work in, complex health and palliative care . If it helps;
Your Dad would have been asked if he wanted to know or DDad would have asked and persisted for him to be told
The doctor would not just have blurted it out, he would have talked very gently possible progression and possible timescales on average at that stage of his kidney disease and why the options for further treatment weren't suitable
Consultant is under a duty to disclose health information if client asks, has capacity and if there is no other (documented high risk) reason not to tell him

It's never easy to hear but it gives DDad a chance (once he's taken in the news), to plan, to get his affairs in order, decide how or where he wants to spend that time and for some a sense of peace - end of life planning is so important

If someone doesn't know their disease is at end stage (and that further treatment will be ineffective), they can become increasingly desperate as symptoms progress - you really don't want that for your DDad or yourself. Planning for how to manage symptoms is helpful

It is really hard to know what is right for the individual even if you know them well, people can react out of character but IME for most people it is better to know.

Some doctors will go vague
Some will give clear possible prognosis

Consultants (or any doctors) aren't Gods so they don't know exactly for each person. They have just given possible/ likely prognosis and average timescales.

Whilst I know that some Dr's can be fairly blunt in end of life discussions, these are really important to have. They allow the individual ( and sometimes family) to prepare and get affairs in order.

Whilst our DP are frail they are ( on the whole) still adults with capacity, another family member deciding if and when they should be given this information sits very badly with me.

Like a poster further up I firmly believe we are so distanced from death in our society it makes these conversations far more difficult.

Did he ask? If not then I dont think he should have been told.
Hard to know without knowing more.
Sorry your dad is feeling this way. Could you go with him to the GP next time?

My uncle was told. It was early in lockdown and there was a lot of planning to enable close relatives and friends to visit, thank goodness they all had a chance to say their goodbyes. My uncle made a will and planned his funeral. It felt totally right that he knew what was coming.