Heart failure

[Womaningreen]

hi there
not sure if this is the right place to post

my mother has been told she's in early stages of heart failure and they've done all they can with meds. She doesn't really want a pacemaker but it's not clear what happens if she refuses it. Doctors keep talking about possible stroke etc.

One reason we are confused....this might seem odd but she is old enough to remember times when a pacemaker was unheard of and thought heart failure would mean a relatively peaceful death, even if slow. But if she has to stay home in bed, that's pretty much what she does now anyway because all the meds she was given made her feel awful as well as not working.

I just wonder if anyone had experience or knowledge of this. The doctors are acting as if her refusal is unreasonable, outrageous etc.

she is 81 btw and tbh has been ready to go for a while - many other health issues.

thanks for any thoughts.

My MIL has heart failure however she's in her fifties. The general prognosis seemed to be that after early diagnosis life expectancy would be around 10 years after that. My MIL doesn't have a pacemaker and tries to be as active as she can.

Thanks Arnold

it's been confusing to us as well because we weren't familiar with heart failure as a long term condition. Does your MIL manage pretty well then, it sounds like it?

It seems unfair that someone who is 81 and very frail is being pressured; I've been at the appointments and it really is a relentless "what if you have a stroke, what if you get some sort of attack and have brain damage..."

she's had 2 heart attacks already and we just thought if she had another one, that would be the end, and while I don't think a pacemaker can prevent it, she is okay with it. We are a bit at sea because they are talking about her living for years with a low quality of life. If cardiac issues were the only issues she had that would be one thing.

also her sister, who is no longer with us, had one and she said it didn't make feel any different. (She died of pneumonia so no link).

My DGF had a HF related stroke and later had a pacemaker. It was a very easy procedure and improved his breathlessness.

thanks everyone

thing is, as she has other issues, it won't improve those so she will still spend her life sitting in a chair mostly

we were under the impression that heart failure would mean a fairly peaceful end of life, not that it could go on for ten years anyway. Clearly we don't know much about heart failure; before she was diagnosed we just thought it would be a couple of months of gradually weakening.

but it seems like the only thing the pacemaker can do is prevent a stroke, possibly? It's so confusing.

I have told her I will support whatever choice she makes but the facts are not that clear cut, I guess.

You need to speak to her GP about her own individual prognosis. My MIL had breast cancer and now has COPD as well which contributes to her declining health. It's difficult to know if she has months or years ahead of her. My MIL hasn't had any heart operations as yet as she hasn't been strong enough. Her breast cancer op was the minimal it could be due to her heart.

With my DGF it improved his symptoms for a while but not life expectancy. He still needed medication and although he was more comfortable he was still as you say in a chair most of the day.

Yes, you need to speak to a sensible medical professional rather than someone of the treat-at-all-costs mentality.

I've known two very elderly people die of heart failure in the last year; for both it was a peaceful death after a gradual decline, with the last months spent mostly asleep. One of them lived nearly a year after diagnosis, I'm not sure about the others.

I though pacemakers were for arrhythmias, not heart failure, but can't say I know anything about the subject!

My Mum was diagnosed with heart failure 9 years ago. Originally her heart was only working at 18% of full capacity. She spent months in hospital until this was improved and after leaving hospital her specialist nurse said to expect this to be her last Christmas. She is still with us now aged 73.

Her life is severely effected but she also has COPD and MS so it is impossible to say what the impact of just heart failure would be.

The British Foundation had a useful information pack at the time we were going through it.

My Mum does not have a pace maker and no heart attacks.

thanks again for the replies

@IrenetheQuaint "Yes, you need to speak to a sensible medical professional rather than someone of the treat-at-all-costs mentality."

agree. I don't know how to find this person though. Her GP and cardiologist are just going for "treat at all costs". She saw a cardiologist largely because she never got round to signing a DNR and her last hospital admission called one in.

I'm fully respectful of the fact that medical professionals will want to treat, but they are talking to her as if she is really foolish to say no.

She does have arrythmia, yes, but what happens in daily terms is simply that she has a weak heart, I guess.

She has two other chronic conditions and one will potentially cause blindness. So she is not keen to extend her life.

she has made an appointment with the GP to talk about DNR orders but she told me the receptionist made a big song and dance about it and made her wait for ages and kept telling her they didn't really have any paperwork for that. It's all getting very odd. She was told to make the appointment; she didn't want to take time off a GP list talking about it, we just thought she'd be able to fill in a form.

what she feels is that she is being told to extend her life, potentially by several years, and that those years will feature a lot of unpleasantness, but she also feels no one is listening when she says "no".

Her brother is taking her to the GP appointment that's been made. I suspect it might be taken more seriously with a man in the room.

You can do both. My DGF got his DNR at the same time as his pacemaker.

@SnuggyBuggy

well you can do both, sure.

but what we're unclear about is why the doctors are pushing the pacemaker so much when she doesn't want it.

How do they think a pacemaker will help her heart failure. Have they explained to her what a pacemaker actually does.

I can't comment on your DMs case but with DGF it made a huge difference in his quality of life and was a very minor procedure, he was able to have it while still recovering from the stroke. In his case it was to treat atrial fibrillation rather than the heart failure.

It sounds like you do need to have a proper discussion with the doctor though.

Sounds like she needs to ask the cardiologists exactly what the pacemaker will improve. These are a few thoughts.... (I'm not a cardiologist or a GP though). If she has failure related to a dysrhythmia then her failure symptoms should improve if the rhythm improves. Depending on the type of dysrhythmia a pacemaker may also prevent a sudden collapse (due to a low heart rate). They may also be talking about a resynchronisation device which aims to get the left & right ventricles working together a bit better (in which case the failure symptoms should improve).

Heart failure can cause the peaceful demise you describe or it can cause years of declining health and breathlessness (severe heart failure causes fluid to back up into the lungs and can cause shortness of breath). Stable heart failure though may not be a major problem for years (but they probably wouldn't be suggesting a PPM in that case).

Your Mum clearly has the right to decline treatment, but it sounds a bit like she needs to ask more questions/ find out whether they're trying to improve quality or quantity of life and what's likely to happen if she doesn't have the PPM (beyond an increased risk of stroke). If her doctors are concerned about the risk of a stroke, how does she feel about that (bearing in mind that a big stroke could cause significant disability). Might also be worth exploring how they would manage her symptoms if she didn't have the PPM and what the long term prognosis is for the other medical problems she has.

As a slight aside, you've mentioned about a resuscitation discussion in one of your posts - if she has strong feelings about that it's worth including that in any discussion if it hasn't been already (not because it'll necessarily make a difference to the pacemaker decision, but because if she does have feelings about it it's better to have a formal discussion so everyone knows what to do/expect if there is an emergency).

Hope she manages to make some progress.

HoleyCoMoley

yes, they have explained.

but perhaps I'm explaining myself badly.

she does not want to have a pacemaker fitted. She has been unwell for several years and doesn't feel any different than she did before developing heart failure. So the pacemaker feels like

1. it will not make her feel any better because she has other illnesses

2. her other diseases will only worsen with age

essentially she is trying to tell them that she wants to die in peace without further medical intervention, but they are saying "ah well you could live till 90 anyway and get worse and worse".

but that's the option on table WITH the pacemaker fitted as well!

She is upset that she was a with a friend when she had her last hospital admission - keeps saying "if I'd be on my own, I would have just died".

Sorry, I'm aware this board deals with sensitive topics but I was nervous of saying that bit in my OP in case it upset anyone.

She just wants to be left in peace so I suppose she will eventually just have to refuse, but they are so adamant, we are confused in case

a) the horror stories they tell us about NOT having it are correct

b) why would they be so adamant? sorry, that's kind of the same point twice!

@Walkingthroughawall

" Depending on the type of dysrhythmia a pacemaker may also prevent a sudden collapse (due to a low heart rate). "

sorry, we cross posted. You are spot on. She has now had a sudden collapse twice, had no recollection of it, and told us both times she wished she'd just died. The first time time my dad was there, the second time her friend was round.

so the pacemaker designed to prevent a sudden collapse is what she doesn't want. She would rather have a sudden collapse and go than have many years left with her assorted issues.

Should I get a trigger warning added to this title?

I have been wondering if the doctors are in "safe life at all costs" mode to avoid being sued.

not a criticism of doctors - I think what they do is wonderful. I'm just a bit lost right now.

It's hard to say what her prognosis is, or even what the pacemaker is supposed to be for from the information given.

What is clear is that your DM currently feels she has poor quality of life, wants a DNACPR, is not convinced she wants the pacemaker and also isn't convinced she wants any further interventions.

She also doesn't seem to be getting clear information about the consequences of not getting the pacemaker - if she doesn't get it, and gets worse, then she can have palliative and end of life care, which presumably what she wants and is fully prepared for.

I am wondering if a referral to a palliative medicine physician would be helpful for your DM not that I am biassed, because I am one to try to get things clear about what she is being offered, what she really wants if she thinks her quality of life is poor and possibly enabling her to refuse treatment and plan this - for example what she will and won't accept if she is admitted to hospital.

@AnnaMagnani

" if she doesn't get it, and gets worse, then she can have palliative and end of life care, which presumably what she wants and is fully prepared for."

this! thank you. This is exactly what she has tried to say and effectively told "don't be silly".

I was present for the face of the cardiologist when she said "I've got to die sometime" and I thought he was going to burst into tears.

I didn't know we could get a referral to a palliative care physician. I honestly thought that just happened when you hit the point of "need".

I can see a bit more clearly now, thanks. The real issue is that she has to simply tell them she doesn't want it and we probably do understand what they are saying; it's just their horror at her refusing it has been confusing.

It sounds like she's made up her mind and that should be respected. Hope she's able to have a sensible conversation with her GP (and perhaps plan how to manage things in a way she would want if she does deteriorate again).

To clarify a bit, by 'sudden collapse' I meant falling over/passing out because the heart had suddenly gone too fast or too slow....it doesn't necessarily mean a sudden death (but might mean a broken hip or a head injury in the fall). A pacemaker can't restart a heart that's stopped so if that's something she's worried about she should be reassured (an implanted defibrillator will try to restart a heart, but it doesn't sound like that's what they're talking about...they're different devices). If the collapses are because of a sudden low heart rate then having the PPM may prevent any more similar episodes & the risk of an injury (but of course, if the collapses are not due to her heart rhythm then it probably won't).
Good luck.

The pacemaker is not to prevent a stroke. I think they probably mean a biventricular pacemaker which can (in some cases) help the heart to pump more efficiently thus improving quality of life to some extent (but by no means relieving all the symptoms).
I am a cardiac nurse by trade and while I don't want to advise on specific issues online to patients I've never met and don't know the ins and outs of (because heart failure is a very complex condition and no two patients are the same) I would say that both the British Heart Foundation and the Arrhythmia Alliance have excellent telephone helplines and online information that you and your family would find very helpful. I would suggest giving them a call and looking online at some of their information.
Likewise NICE guidelines can be helpful in understanding treatment options and there are extensive guidelines online on both Heart Failure and Cardiac Resynchronisation Therapy (which is the type of pacemaker I think they are probably referring to).
Biventricar pacemakers (CRT) are very different from the bog standard pacemakers that are usually put in for abnormal heart rhythms.
Hope this helps. Your local hospital may have a heart failure nurse specialist that you can contact who could perhaps talk this through in more detail, it may be worth asking.

People can live a fair time with heart failure. Our local area has specialist cardiovascular nurses who visit people in the community and are very knowledgeable and give great advice on living with it. The British heart foundation also have a leaflet called living with heart failure for people living with to and their relatives and Carers. I found a lot with heart failure patients they'd end up with a lot of odema, particularly in the legs because of the venous return. The left side tends to be more effected as the left side of the heart has the bigger work load. Make sure she keeps legs elevated when sitting as odema is common in heart failure. She may already be on diuretics as a preventative. There's lots of good advice and tips op out there :)

Also, has anyone said she is end of life? I've known some heart failure patients have "just in case" palliative medicine at their home ready to go in case they suddenly deteriorate

I wish I had been there when she said 'I've got to die sometime' - it sounds exactly like the sort of thing my DM would say

Someone was trying to convince her to have a statin on her last appointment because 'if she didn't she might have a heart attack and that could be fatal'. My DM said 'Good'. The nurse looked like she might have the heart attack.

I find some a lot of health care professionals, doctors especially find it hard to accept that you don't want their lovely medicine that they have worked so hard to provide you and have ideas of your own.