First up tough times for you.

Personal view is let the battery fail if that's a viable option, but tough decision when emotional turmoil involved 

Sorry. Difficult. 

We tried to get this right by fiddling about but then we arrived at a realisation that we were using sophistry to muddy the waters and avoid making a hard decision. We then agreed we needed to write down in very simple terms what we meant by our Do Not Resuscitate and Do Not Hospitalise notices and have an answer for each obvious scenario, with counterparts (when TO hospitalise etc).

I know that's different to your precise circumstances and the OP but it goes to the point that doctors are not going to tell you what to do. If you want to do something bold and kind that could result in death rather than cautious and advised which could result in grim surgery and lengthy illness, maybe death, maybe not, and general inquity... then you need to make that clear.  They are, as you say, not being clear. They can't be. They are dangling it obliquely and you need to take that and make it less oblique, less dangled, or exclude it expressly as a thing. 

Shorter point: decision time. The sooner you grasp this nettle the better for all. That's what it's about m8y

and bon courage

If the consultant thinks it's viable, go with their opinion.  Up until very recently, they would not have made the offer due to your fathers advanced age and failing health.

My own fathers dementia was very distressing to the family but even more so to him, they put him on anti depressants.  

Often with dementia they have periods when they seem very lucid, perhaps ask him his thoughts if that chance arises?  We did that with Dad and his response was "let me go".

You havent mentioned if anaesthesia is needed but if it is that might be the issue.

my dementia stepmum has needed cataract surgery for over two years but still not scheduled as big concerns over anaesthesia even for the 20 mins required for surgery to one eye (cannot use local anaesthetic in dementia patients).

basically she is not a good candidate for GA. Def not for this type of elective surgery

if she needed life saving surgery…well probs she wouldnt get it, if they are faffing around for 2 years over a 20 min procedure she wont be getting anything longer.

Really sorry to hear that Prodders.
Does your Dad get any pleasure at all out of life? If so, I would go for the procedure.

If he’s at the stage where he is existing rather than living, I’d be inclined to let nature take its course.
I’d be worried that any decision to operate was in others’ interest rather than his as I (and the rest of the family) wouldn’t want to lose him.
 

Did he ever express any opinion while fully (mentally) fit?

I know at that stage I would welcome a quick release rather than prolonging the suffering but he’s not me.

All best wishes for the family and hope you get through the decision without too much heartache.

Difficult. But does he enjoy life?  Just because a procedure exists doesn’t mean it’s the best thing to do. Sorry you have to make this decision. 

Nobody tells you about these godawful situations and shitty decisions you will have to take when you're bouncing around the world as a youngster. 

This really is, though, a decision only you can make at the time with the information available to you. 

Does your father still recognise you and your mother? Because if so I would probably be asking the medical team if we could both hold one of his hands while the procedure is carried out, so the you can reassure him. 

I can't really improve on that, sorry.

Re-reading the OP

I would follow the Cons advice and cross the bridge when you get to it in a few months. Anything might happen before then, unfortunately, I am sorry

Yes, they do. Fair comment from Eddie. But you also have to grapple with the fact that in dementia even the lucid moments seem often to be another person's voice or an unrecognisable version of them. This can cause doubt. My mum's lucid moments were extremely strident. Uncharacteristically so, to a point where I wasn't sure she was a good decision guider even when apparently clear. 

Is he competent enough to discuss it as a hypothetical question (with details added, say medication not pacemaker batteries), for instance "I have this friend, and his mother...etc, what do you think?".

It sounds like your Father is at a stage where he no longer has a quality of life that he is able to derive self-aware meaning and joy from, i.e. he is no longer the decison maker in his life, he is a passive passenger in other people's lives.  You and your Mother know him very well, what do you think he would want in those circumstances? 

Leaving that aside, it sounds to me that in his current state his death or life is not a matter which has any real consequence to him (both subjectively from his point of view, but also objectively).  In those circumstances the important question becomes what are the consequences for those to whom it does matter - what cost in happy years remaining will your mother and you pay for keeping him alive, and conversely what will you pay in guilt in taking the step of allowing him to die for want of treatment?  What is the value of having him around for longer to you and/or your mother?

I think these are highly subjective things to consider, and you should not be afraid to be deeply selfish - if overall it suits your happiness to keep him alive as little more than a automoton, then overall this is probably the right outcome - it is no longer him that really matters, its you and your mother, and how you feel one way or another.

There is obviously no answer free from the pain of guilt and regret. But to abdicate responsibility and do nothing is I think a failure of character and a last resort.  I hope I am brave if my time comes with a loved one, I hope I am never tested.

Good luck, and I wish you courage!     

Re. the above, is there a Quality Adjusted Life Year-type calculation you can do?

In the absence of a POA, how is consent managed here anyway? Presumably on a life saving/best interests/prior expression of wishes basis?

FWIW the decisions we have had to make in re Dad, Mum and also MIL have taught me that there is a bit of a breakdown between a doctor's world of what can be done/might have downside risk etc and what we all should decide to do for our loved ones.  I have made decisions to bugger on with this and that in the face of advice and with hope that all will be well, when in fact I should have decided more boldly not to do that. In fact what one needs to do is ready oneself for somebody's death, then give them as little intervention, surgery, suffering as possible.

Quick example - Dad had a brain tumour. We knew he had a brain tumour and that it would kill him quickly. Nobody knew for sure what it was until they did a biopsy. We could have let him decline and die gently, but we opted for a biopsy so we were sure we knew what we were up against. That surgery and the complications which followed left him really unwell and made the last few weeks more miserable than necessary.  We all wish we had been brave and agreed just to let him slide off the side of the ship, as it were. 

@ Muttley, my Dad undoubtedly had cancer in the end, my sister had EPOA and decided not to investigate and let him go like he asked, the doctors agreed.

Thank you all so very much for debating this. All very good input and thought provoking: Rof at its best.

Responses to some of the questions raised.

It's a local anaesthetic.

We do have powers of attorney sorted.

He has no quality of life to speak of and his fading faculties all reduce what there is. He has frequently said 'what's the point of being here?' which distresses my mother immensely.

He hates being an invalid. He was a tough, proud man. I'm thankful that he cannot possibly remember me having to pull his trousers up last week at the side of the loo, when he couldn't manage to do so for himself.

Declining the treatment feels like only a step or two removed from taking him to Dignitas.

I preface the following by saying that I thankfully haven't had to deal with anything like this yet:

Unless he was very severely demented or otherwise sick to the point of taking no pleasure or meaning from life, I'd have the battery replaced.  If you stay by his side won't that mitigate any distress on the day and won't it be forgotten about in 5 minutes anyway?

I would think differently if he had made it known prior to the dementia that he would not want medical intervention in his present condition.

It’s very different from Dignitas Prodders old son (although tbf I have absolutely nothing against Dignitas when it is needed).

You are not making an active decision to end his life, you are preventing an intrusive, likely painful and distressing medical procedure from taking place unnecessarily the consequences of which are likely to shorten his life but it is nature, not you, that will decide when he goes.

If the position were reversed, what would you want him to do?

If he is not getting anything out of his existence, that will not improve or change with the procedure in fact it is likely to get worse.

I don’t envy you at all this choice but I know what I would do from what you’ve said. Sending you supportive (and manly) hugs.

He is entirely reliant on the pacemaker Jim.

I canvassed this today - clear answer from the consultant. Failed battery will almost certainly and quite swiftly lead to a heart attack which will likely kill him, but in the absence of any other illness intervening (and apparently dementia is an onset for other serious conditions, eg pneumonia) he could apparently live for another year or so.

I dont feel the need to prolong his life, but it feels more like electively shortening it and that is the pinch point.

Sorry PS - I took the OP to mean that he would struggle on for a bit but it would give out at some point. I can see now how you feel and you have all my sympathy. You didn’t answer though when I asked what would you want if the positions were reversed?

On this I would say "no" if it were me. My mum has terminal cancer and early stage dementia so can't quite relate to this, but I think it is too close to euthanasia and without express direction from the relative I wouldn't be able to go through with it. 

I agree with Muttley in terms of "game" all outcomes. Then when the time comes to implement the decision your heart (no pun intended) will tell you whether that one is the right choice or not.

Anyway, it's a shitty decision to have to make so try not to judge yourself in trying to do what's right for your dad whatever the outcome. 

For me it would be a sort of risk weighted decision. What is the risk if he goes soon rather than in 12 to 18 months he misses something that would add to the sum total of good and happiness in his life and/or those he loves. Conversely what is the risk if he lives longer something happens that really adds to to the sum total of pain and unhappiness. 
 

Nobody can see the future of course but will generally have a decent idea of the risks on both sides. 

Sorry, a heavy decision to make. Did I understand right that going through with the procedure is only likely to gain him an extra year or so? Bear in mind that a sudden heart attack is probably about as good as it gets as a way to go. It sounds as though he doesn't have much quality of life. I'd question the consultant about how long he's likely to need to be in hospital, and what the risks are of infection etc. Also, if he has dementia, is his understanding good enough to have the procedure with local anaesthetic? What you don't want is for him to end up needing a stay in hospital and then for his condition to worsen to the point that he can't go home again. Hospitals can be frightening places for the elderly and confused, and can accelerate the dementia.

I’d probably take him for the procedure, on balance.  Just.

But either route is completely valid.

Tough situation. Was going to share anecdotes about my own (deceased) dad and my father in law (still with us, but with Alzheimer’s), but got unexpectedly emotional just starting to type.

Instead, will say that if I were in the situation of having advanced dementia, no quality of life, and was heavily impacting lives of all around me, I don’t think I would want my battery replaced. It may well be very different when you are actually staring at your own death, but from the perspective of a healthy 40-something whose dad died quickly from cancer and whose father in law is fading away slowly with Alzheimer’s, that would be my choice.

I'm neither a sage nor a doctor but one thing struck me about this. You've written:

"Failed battery will almost certainly and quite swiftly lead to a heart attack which will likely kill him"

Is the heart attack going to be a quick and painless way of going? You say "likely" kill him. How quickly? Is there a risk he could struggle on in pain?

It doesn't seem clear from the way you've worded this that it's a guaranteed "good" death in the way that a visit to Dignitas might be.

Clove has posted "a sudden heart attack is probably about as good as it gets as a way to go" and may know what they're talking about here (I don't). As I understand it, heart attacks in the normal sense are survived by most people - I don't know if you mean some other type of cardiac failure brought about by the battery failing.

I think clove means a good way to go compared to months/years living as a meat shell of the person you were together with the not inconsequential collateral damage to family and friends 

very difficult decision- if dad still getting some pleasure out of life then I’d say go for the battery replacement if mum agrees and you’re happy she’s compos. even so it’s finely balanced and there’s no “right” answer. is there a level headed family friend you could talk to? very useful in these circa to have someone sensible who knows everyone involved to work through the scenarios with. 
good luck 

Have you ever discussed this stuff with him? I've already told my kids I have no interest in my life being prolonged at all costs.

Have you just never talked about this like most British people?

I think it just often turns out to be not clear cut

”prolonged at all costs” 

maybe the elderly father isn’t entirely lost in dementia and, say, wants to see his favourite apple tree blossom one more time or see a grandchild graduate/marry

devil’s in the detail

I would check the facts on battery failing.

As far as I can see, that will cause milder symptoms before heart attack - dizziness, fainting, breathlessness etc.

Then although the heart attack may kill him outright, it may not.

But I really could be swayed either way with this. The above sounds bearable compared with current circumstances. 

Good luck to you and your parents. Whatever choice you make, even if it goes wrong, you'll never know it wasn't the least worst option.

If your mum has a strong view I think it's her call. Mine had, in a similar set of circumstances. That was a surprise but seemed right to honour it. I'd try to preserve you relationship with her and have no regrets on that front.

At his age you have to be careful around invasive procedures… having been through something similar with my Dad I don’t think the Dr was dangling the option. If they don’t think the patient has a realistic chance of surviving the procedure they won’t do it. So the Dr may think it is viable now, but as your Dad is a man in his mid 90s he’s just reserving judgement that this could change quickly. 

prodders m7, my suggestion is u do ur best (and i don’t pretend it’s easy) not 2 put pressure on urself by thinking u have a decision 2 make

the decision may v well b made 4 u, or it may never come 2 pass

if it transpires u do have 2 make the decision then i appreci6 u will necessarily want 2 have the deb7 in ur mind and with ur family ahead of time, but the closer u can get 2 actually being asked the q b4 u spend energy and emotion worrying about it, the easier the coming weeks will b imo.

and if u never have 2 make the decision then so be it

My 2 cents 

Keep them alive as long as possible

My old man died young 

Keep them alive 

If only so they recognise you 

Once they are gone 

They are gone 

Again very many thanks to all who have contributed: plenty to think about.

Sorry about your predicament, Prodigal. 

My suggestion is to wait a couple of months to see how he is then, but in the meantime chat to your mum (and any siblings) and "give yourselves permission" to decline the battery replacement should that seem the best thing to do when the time comes. 

You’ve probably already done this, but if not then dig out the healthcare PoA and read carefully again what your father says on it. This comsideration is different from a DNAR, but I seem to remember my stepmum’s document is a bit more specific - yes to some forms of treatment and no to others - treatment, not ressucitation.

Another good point Minkie, thank you.

I had a call from dad's doctor this morning which provided an opportunity to further discuss the scenario, and like several above, he was keen to point out that a couple of months is a long time in the context of a very old frail man.

That does seem to be the take home.

Having to confront the issue head on for the first time yesterday provoked the inevitable flow chart of possibilities, and the thinking about decisions much sooner than the decisions need to be made.

Christ this stuff is tough.

This is a really, really tricky one.  If I were making the decision for myself I would absolutely not want the op.  I have seen close relatives existing (not living) with dementia and I do not want that for myself for any longer than absolutely necessary.  But could I make that decision for someone else?  In particular, a loved parent?  I don't think I could.  I would probably say to go ahead with the op.  But hope that he deteriorated so that it was not viable to do so in the months before it was scheduled.  The cowards way out, but it's where I end up.

Wow its a big one, you have my absolute sympathy

On a practical note I had a PM fitted 4 years ago under a local, it sounds worse than the reality, so whilst a very alien environment it may not be to bad, it takes about an hour. The recovery is quite short though just uncomfortable for a  few days  as its just a big patch on the wound and sleeping is difficult

I think what I am trying to say is the operation is not such a big deal. 

I would suggest go for it.

Maybe ask yourself what would your Dad say.

Good luck, there are no right or wrong answers.

The other point of view is that the pacemaker has already provided your father many additional years of life, during which time his overall health and mental condition have declined to a point that he is unhappy and wants out. 

There is a huge legal and ethical difference between taking active steps to end the life of a person (Dignitas) and the withdrawal of care that keeps them alive, or the provision of invasive treatments that further prolong life. 

Your father has already enjoyed bonus years .. which as per your comments he openly states he is not enjoying. 

Heart failure is a relatively quick and painless way to go out and is infinitely preferable to interminably waiting around as a shell of yourself and being entirely dependent on others to do the most basic and intimate of tasks for you. 

In my view it would be unethical and immoral to replace the battery. 

Let him go. 

.

Sorry to hear. 
 

I’d wait and see how he is when the battery needs replacing. IME sometimes frail elderly people deteriorate rapidly (for example after a fall or another medical episode) and your choice may either be made for you or be very obvious. 
 

If he remains as he is, how much enjoyment is he getting from life? Can he do anything he likes to do? A quiet death from a failing pacemaker sounds eminently preferable to a lingering one from dementia. 

ah, Prod, this is tough. Had I been given the months of relatively calm time in which to make the decision (as you have been), I probably would have made a different decision. Decisions made in the middle of a medical emergency are emotional, panicked ones. I bought my mother a few extra months of surgery, intensive care, pain and a stoma bag with its attendant indignities. The alternative was pain and death without surgery. IT was a no-win decision, but on balance the months of extra pain and telling us she'd be better off dead were not worth the surgery. 

Even with a local anaesthetic, if your dad is left sitting and recovering for a day or two, the speed at which muscles waste at that stage is astonishing, and once they're unable to stand, it all becomes immeasurably more complicated and your existing care package is unlikely to be adequate (lifting requires two people with different training) and then you're looking at admission while the care package is put in place. 

With hearts it's different because the failure of the battery may not lead to a definitive outcome. Your father also has limited capacity to enjoy any additional time he gets (my mum at least had several visits from grandchildren, and to go home and die there which she very much wanted).  Hospital is a lousy place to be - which option is less likely to land him there?

Good luck to youx

(I see I've contradicted myself in the course of that post - I still can't make up my mind on this one)

Personally no choice and I'd simply not replace the battery.  There are so many risks attached to even minor surgery at that age including the possibility that he finishes his days totally drugged up in intensive care with an infection.  I'd also possibly be a bit tardy calling the ambulance when the heart attack comes to reduce the chances of them managing to resuscitate him.

You asked have I had similar experiences, yes I have with both parents three years apart.

Do I have any pearls of wisdom, sadly not. I can only refer you back to some of the advice above about clear thinking / agreement about what instructions mean.

You have my very good wishes in what I know is a very perplexing situation.

That advice from Escaped, particularly the middle para about muscle depletion and decline in care status, is good.

The elderly seldom descend in a straight line to death. They tend to have a health graph that looks more like the share price of a failing institution gradually declining in a series of plunges and minor rallies. Big hospitalisation event, significant impact, sudden drop (mobility, positivity), a strange rally, settle into a new temporary state which is weaker, more vulnerable, less activity, a fall or infection, more hospital, weakness increases, discharged but with higher care needs, settle in new state, event, decline, event, decline... the thin gold thread of life seems so hard to break and they still battle on, but like a package made of skin, bones and resistance.  Eventually something takes over. But it can be a long, long journey even when you might think a failing battery will switch someone off.

Never forget how incredibly maltreated people can be yet still live on (POWs, hostages, concentration camp victims to name but a few examples).  I think your premis is quite binary whereas life tends not to be.  

Interesting isn't it how RoF of the early noughties was all about where are the drinks, who's going to which festival, and now we are talking about aged P care.

Further thanks to all who have provided thoughts since my last post here.

Tremendously helpful when I don't have a real life network with whom I feel at ease discussing this, and one of the most valuable sources I have been able to muster in terms of thinking how I approach this; and then how I steer my mother, and highly neurotic sister who will be contemplating keeping dad alive at all costs. We have a family get together tomorrow to discuss it

I have adopted at least protem, the mindset that I park the decision until it is much nearer the time, and the hospital have now advised a late December appointment as the precursor.

I have a feeling that events may well overtake the decision making. Dad is now very weak indeed albeit the tough old boot that he is means he will hang on as his fighter instinct dictates.

In my heart of hearts I think if he gets to the end of the year, I knew the right decision for us is probably to decline the procedure, but I sort of needed the approval of my thinking from a quorum of sages, and in the thread above they have spoken. Not a single post that doesn't contain something worthy.

Noticeable in passing is the exhaustion I am experiencing as my I suspect my sub conscious does the heavy lifting in terms of absorbing what my conscious prefers now to put to one side.

Again, thank you ROF.