Pace Maker for 88 year old with demetia? - British Heart Fou...

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Pace Maker for 88 year old with demetia?

Captain-Scarlet profile image

Hello new here so if this topic has been covered apologies. My 88 year old father has been in a care home with dementia for a year taking a cocktail of various drugs. Previous heart attack 2017. He now is in a hospital with a heart blockage and heart failure. We have been informed in a round about way, via Care Home and not direct to us, thats another issue, that they want to fit a pace maker. Mental capacity is 3/10 so clearly cannot make his own decisions. Our dilema is whether to agree to the pacemaker, and potential issues with this, or let nature take its course. Has anyone had something similar as its a tough decision and interested in both positive and negative replies. Thanks.

UPDATE, IT HAS NOW BEEN DECIDED NOT TO FIT A PACEMAKER DUE TO THE PATIENT INTERFERING WITH THE DEVICE. HIS MEDS WILL BE CHANGED INSTEAD. THANKS FOR ALL THE RESPONSES, VERY USEFUL.

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51 Replies
10gingercats profile image
10gingercats

I have no experience of this...I am 86 with no dementia.But if the hospital suggest a pacemaker how have they come to this decision and why in your fathers case? There has to be some reasoning behind the medical decision to want to go ahead with this.I would want to know what it is if this was my relative. Who took the decision to suggest this for your father?You need some discussion about this with the surgeon/cariologists involved.

Captain-Scarlet profile image
Captain-Scarlet in reply to 10gingercats

Thanks

Chinkoflight profile image
Chinkoflight

Hi, what a challenging question. I think your first responder makes some valid points which I share.I was in hospital CCU for 6+ weeks earlier this year and was amazed to see a pacemaker fitted to a 90yr old and many fitted to 80+yr olds.

I'm sure there must be some guidelines about quality of life years added to make the assessment for cost effectiveness. I don't see why dementia per se should be part of that assessment, that I guess maybe part of the right to life/end life debate. I won't comment t on that.

But I could see why an assessment might be made on the QALY assessment. The pacemaker may be the difference between coping and thus preventing lots of admissions to ED and CCU which are stressful in the best of times and moreso I guess with dementia in the mix.

So if the Drs think it's worth doing I would go with that.

Captain-Scarlet profile image
Captain-Scarlet in reply to Chinkoflight

Thanks

Happyrosie profile image
Happyrosie

in a way this is a moral decision. When I had a (completely different) moral decision to make I took it to my priest, (CofE). Just talking to him, and him saying “aha, yes, no” etc brought me to a decision - he made no,effort to push me one way or another.

Captain-Scarlet profile image
Captain-Scarlet in reply to Happyrosie

Thanks

IndieDot profile image
IndieDot

In her 80s my mum had heart failure, aortic stenosis and atrial fibrillation, she also had osteoarthritis. Despite all these things she had a pretty good life on a daily basis. Her GP did have the discussion with her about the possibility of a pacemaker but mum decided herself that she didn't want to go through any surgery that could potentially affect her health further. We all know there are no guarantees with any surgery especially the older you become. As a family we all agreed with her. In mum's words she was "ticking over nicely thankyou" and everything seemed well controlled with medication. She went on to live well for another 12 years without a pacemaker. Slightly different situation to your own I know but the similarity is retaining a quality of life when very elderly. I have to say if I had been in a situation where mum had dementia I would have made the same decision she did, and not put her at risk of further health issues. Wishing you well.

Captain-Scarlet profile image
Captain-Scarlet in reply to IndieDot

Thank you for your insight

MichaelJH profile image
MichaelJHHeart Star

Hello! I formed opinions on this when I spent nearly a year in a care home after 13 weeks in hospital following the loss of my lower left leg. The important thing is to distinguish between pacemakers and ICDs (Implantable Cardioverter Defibrillator). For a person with dementia a pacemaker (once implanted) will improve the quality of their life avoiding periods of with either a very low heart rate or a very high one. These periods cause concern and worry even to those who understand what is going on, and are much more distressing to a confused person. An ICD delivers shocks (which can be very painful) and IMHO cruel particularly where someone is confused and already near end of life.

Captain-Scarlet profile image
Captain-Scarlet in reply to MichaelJH

Thanks for your insight.

Alison_L profile image
Alison_L

When my 94 yo mum had to go into a nursing home last year, the first thing we had to do was fill in a form which was effectively a quality of life/intervention-or-not request. I can’t remember the name of it. But as mum was clearly not coming home again, this form would have prevented a pacemaker being considered.

Scotsman53 profile image
Scotsman53 in reply to Alison_L

DNR - do not resuscitate. My mother had one too, and I agree that it would probably have meant no pacemaker. When she died, after the initial shock, my main reaction was relief that her suffering was over, her last few years were far from happy. However, some people with dementia do really seem happy...

Captain-Scarlet profile image
Captain-Scarlet in reply to Scotsman53

Thanks, yes we have a DNR in place, it doesn't prevent pre-emptive intervention unfortunately

Scotsman53 profile image
Scotsman53 in reply to Captain-Scarlet

Yes maybe I should have guessed that. However I'd hope the medics would understand if you questioned the pacemaker proposal on the same basis. Maybe talking to the management of the care home first, asking their advice, would be the best way forward.

Alison_L profile image
Alison_L in reply to Scotsman53

No, not a DNR. Or at least not just a DNR. It's called a ReSPECT form, and should cover pacemakers as well.

Scotsman53 profile image
Scotsman53 in reply to Alison_L

Thanks, I hadn't heard of that, but having looked it up, it also seems to be about emergency care, so not really relevant here.

mozart27 profile image
mozart27 in reply to Scotsman53

Alison_L mentions the Respect form. At the beginning of the pandemic and a few months from my 70th birthday, I made an Advance Decision, essentially refusing invasive treatment and resuscitation if I were to be unable to make and communicate decisions myself. When my brother subsequently became terminally ill, I was told that ambulance crews and emergency departments would not necessarily feel bound by an Advance Decision so I made a Respect document with my GP, which reflected the Advance Decision. My wife and children know my wishes and I feel I have done as much as I can do to document them. I would encourage other people to do the same.

Captain-Scarlet profile image
Captain-Scarlet in reply to Alison_L

Thanks, yes thats all been done, however hippocratic oath means it still maybe done unfortunately.

Alison_L profile image
Alison_L in reply to Captain-Scarlet

ReSPECT form. Different from a DNA.

Captain-Scarlet profile image
Captain-Scarlet in reply to Alison_L

Thanks, we have that done as well.

Billyjean123 profile image
Billyjean123

Hiya! This is difficult. We were faced with a similar dilemma with my mother in law but she didn't take many tablets and no cardiac history. But l beleive they made a 'best interest' decision as the family didn't have power of attorney over medical matters. The other factor I beleive was the fact that she was still mobile with a zimmer frame which meant that if she didn't have it done there was an increased risk of falling. Anyway they completed the procedure and she's still here singing away to herself all day! 😊

Captain-Scarlet profile image
Captain-Scarlet in reply to Billyjean123

Thanks dad still has full mobility but dementia is well advanced. We have POA

Qualipop profile image
Qualipop in reply to Captain-Scarlet

If you have POA then he suggestion about he pacemaker shoudl have come to you direct not via the care home and the final decision is yours. You are entitled to refuse surgery on his behalf. Only you can make that decision after talking to the doctor. I think you shoudl demand a meeting and have all your questions written down. How it wold affect his quality of life, he risks, whether he's fit to have it done, It has to be more about his quality of life than just extending it.

Captain-Scarlet profile image
Captain-Scarlet in reply to Qualipop

Absolutely, 3 hours waiting to see consultant this morning, no show. We'll get there.

sandandkev profile image
sandandkev

Hello for starters as he has dementia and unable to make this huge decision by himself the doctors should be discussing this with his next of kin? Has he done a respect form at all,whoever is next of kin to him has the rights to discuss the best options,it depends on what quality of life he has now

Captain-Scarlet profile image
Captain-Scarlet in reply to sandandkev

Thanks, yes thats all in place. We have POA inplace as well.

sandandkev profile image
sandandkev in reply to Captain-Scarlet

In that case the doctors should be talking to you not through the care home

Captain-Scarlet profile image
Captain-Scarlet in reply to sandandkev

Yes, thats another issue to address we have no idea how that happened.

L8Again profile image
L8Again

My wife was admitted to an ACU last year. In the next bed was a gentleman in his mid to late 80s with a heartbeat of c.30bps. Any medical intervention, such as taking a BP measurement distressed him greatly, as he clearly did not understand what was going on.

He was taken down to the Lab to have a pacemaker fitted ahead of my wife, and he returned to the ward a couple of hours later without the procedure having been carried out. The cardiologist explained to the family that the procedure under a local required the full cooperation of the patient which was not forthcoming: the gentleman would not lie still. The only option going forward was a general anaesthetic. My wife was discharged before any decision was made. It cannot have been an easy decision for the family.

Captain-Scarlet profile image
Captain-Scarlet in reply to L8Again

Thanks, its not an easy one to say the least.

Maxwall47 profile image
Maxwall47

Hi good morning captain I would like say if was your father and had dementia I wouldn't want to have a pacemaker put in I'm sure he doesn't want to live like he is I'm sure wouldn't want one only you will know how the poor man is feeling sorry to be blunt

Captain-Scarlet profile image
Captain-Scarlet in reply to Maxwall47

Thanks, I have my decision, its building a case hence I am on here.

Ennasti profile image
Ennasti

Hi, I once faced a similar scenario but it wasn’t cardiac related. My father had a stroke which left him totally incapacitated. He was unable to utter more than one or two words, couldn’t move his body at all except for a wriggle in one hand and one foot, and was bedridden wearing nappies and eating only soft foods.

Approximately 6 months before he died I noticed he didn’t look well and had lost weight. I spoke to his doctor who said he suspected cancer and we could put him through a heap of invasive tests and find out if it was treatable, or we could let it take him.

By this point he’d been living in a full time care home for 4 years. He was only 64 when he went in. He stopped speaking completely after the second year and we weren’t sure if he recognised speech any longer as he didn’t respond. He just looked at you.

We decided to let whatever it was take him. He died 6.5 months later.

Captain-Scarlet profile image
Captain-Scarlet in reply to Ennasti

Thanks for your insight.

Noodlesalad profile image
Noodlesalad

It's a big decision and must weigh heavy on you.In 2019 my mum was diagnosed with colorectal cancer which could have been fixed with surgery , she also had Alzheimer's dementia and I was taking care of her at home.

Mum's surgeon was very clear it was a slow growing cancer and to put it bluntly the Alzheimer's would probably take mum before the cancer. I consulted with my sister who was also diagnosed at the same time as mum with colon cancer and she lives in America. I finally decided with everything else my lovely mum had going on I didn't want to put her through surgery when all the experts were saying the same thing a slow growing cancer. I don't regret this decision and I know mum would not at 85 have coped with such surgery it was awful just listening to get confusion over the diagnosis.

Mum died in 2021 and it was the Alzheimer's that took her and I still miss her every day she was a huge part of my life.

Nobody can tell you what to do but I based my decision on much research and advice and most importantly how much it would impact my already frail mum.

Take care hope you find the answers you are looking for.

valeriep profile image
valeriep in reply to Noodlesalad

We had a similar experience in our family, when my great-aunt was diagnosed with colorectal cancer at the age of 92. However, she did not have Alzheimer's and was as bright as a button. She had had heart trouble for years and the doctors told my uncle and aunt that they would treat her symptoms, but not operate, as the walls of her heart were 'paper-thin', and the cancer was so slow-growing, it was more likely that heart disease would end her life before cancer. As it turned out, they were right. A few days later, while they were still stabilising her in hospital, she had her breakfast, announced she would have a little nap and never woke up. Not a bad way to go! Her family elected not to tell her she had cancer, just that it was a stomach complaint that the doctors were sorting out, and I questioned that decision at the time, but in retrospect, I feel they were right, as she died optimistic and unafraid of the future. These kind of decisions are heartrending, but in the end, I think only those who are closest to the patient can judge what is in their best interest.

Digger0 profile image
Digger0

The doctors will not decide on a pacemaker unless they think it is needed. I'd talk to the ward sister and ask why and what etc. Why are the hospital discussing this with the care home and not with you? Are they down as next of kin? A friend (admittedly not 88) has just had one done under sedation - not a full GA and was fine. Good luck.

Captain-Scarlet profile image
Captain-Scarlet

Thanks, hence my research here as well as other sources.

AAW2024 profile image
AAW2024

My dad was a similar age when he had a pacemaker fitted... No dementia. But he only lived another 6 months .... It's maybe a big trauma to go through at that age.

Captain-Scarlet profile image
Captain-Scarlet in reply to AAW2024

Thanks

Pollyanna23 profile image
Pollyanna23

Think it’s a hard decision for you to make. I suppose maybe ask your self what do you think your father would want at the age he is now. I know it’s not easy I’ve lost both my parents both in different circumstances but we done everything to keep them here for as long as we could. The y did not have dementia so it’s a completely different situation for you. My thoughts are with you and I’m sure what ever you decide will be the right choice for you and your dad.❤️

Captain-Scarlet profile image
Captain-Scarlet in reply to Pollyanna23

Thanks

Captain-Scarlet profile image
Captain-Scarlet in reply to Pollyanna23

Thanks

Maxwall47 profile image
Maxwall47

I had a friend who had a pacemaker fitted couple years later he dieing from old age so they said he told me at is bed side he wished he never had the pacemaker fitted because that the only thing that keeping me alive it was so sad to see him like that he never had dementia

Captain-Scarlet profile image
Captain-Scarlet in reply to Maxwall47

Thanks

Bunkular profile image
Bunkular

There is one particular form of dementia (there are many types) is vascular dementia which is the 2nd most common form. If your mom has this form then a pace maker would limit the progression of dementia, so there's that to consider. If it's Alzheimer's then a pacemaker wouldn't make a difference.

nilmonisikdar40 profile image
nilmonisikdar40

Thanks for asking this interesting question. I had a pacemaker fitted in February 2000 for complete heart block. It has certainly improved the quality of life. I understand the issue of dementia in case of your dad. The pacemaker can do no harm but if at all can improve his quality of life. I am G.P. myself and the only problem which the carer must note that patient can fiddle with pacemaker box and disrupt it's function.

Captain-Scarlet profile image
Captain-Scarlet in reply to nilmonisikdar40

Thanks, yes we have now agreed not to have one fitted as the consultant was worried about this very issue.

FraserB profile image
FraserB

I was once in the same situation as you but it was my mother. She was on a list for a care home because of her mental capacity and the same medical conditions as your father. I was her caregiver and as family we decided not to go with the pacemaker for her. It was the best decision I ever made even though at the time it was difficult with my emotions running high. Being a tough decision it weighed heavily because we love them dearly, but that was 8 years ago and I can tell you now I have never regretted that decision.

A year ago I had to see a cardiologist about my own health and I quickly told him about my mother and our decision not to go with the pacemaker. He did not hesitate to say that, as time went on, it would have eventually prolonged her suffering based on her mental and physical capacity.

Captain-Scarlet profile image
Captain-Scarlet in reply to FraserB

Thanks, that was where I was coming from all along.

Digger0 profile image
Digger0

Thanks for the update. Probably a wise decision.

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