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.

@AnnaMagnani most doctors and nurses haven't worked directly in producing drugs and medicines - that usually falls to pharmaceutical companies. We do generally have the best interests of our patients at heart though and statins for example don't just prevent heart attack but also debilitating strokes - both of which don't necessarily cause an instant painless death.
I think most of us respect the wish of the patient though - and if someone has made a decision to decline treatment and they have been fully informed of the consequences then I don't think many of us would have a problem with that. We really are not the enemy.

thanks again for all the points

the implanted defibrillator was also mentioned to her, yes.

No one has said she is "end of life" - it seems like that's what they want to prevent, I think? What would palliative care at home mean please? I can move in and rent my flat out, we're in London so pretty sure it would rent easily and my commute wouldn't be much different.

My mother has refused statins as well. Her cholesterol isn't even high, it's just borderline. I guess we didn't realise doctors would be reluctant to hear "no" from an 81 year old so it's all been a lot to process.

thank you all

EllaPaella - I'll take you round a hospital palliative care ward round. It would open your eyes. Daily patients wishes aren't heard or even thought about, or benefits of treatments overstated.

@Womaningreen It's obviously a lot of information that's just been given and quite a lot to take in all in one go. It's also really hard to give a 'timescale' with heart failure. Some people can live a very long time with the condition and it can be quite unpredictable.
I don't think it's a bad decision to decline the defibrillator personally, but a pacemaker wouldn't work in the same way and wouldn't deliver shocks in the event of an arrhythmia that lead to cardiac arrest.
Palliative care at home would usually mean the input of heart failure nurses working alongside a district nursing team to provide care in the home at end of life. Sometimes Macmillan nurses can also get involved if they have the time and resources as do some hospice nurses.
I honestly think you would benefit from speaking to one of the BHF nurses, I really would recommend giving them a call.

@AnnaMagnani fair enough - you are entitled to your opinion and I don't work in palliative care. However please don't tar us all with the same brush - a lot of us have fundamentally good intentions and care a lot.
I am not going to get drawn into any further discussion about this with you I'm afraid. The OP probably doesn't need to hear right now how uncaring health care professionals are. Hopefully her experience will be different.

EllaPaella I don't want to sidetrack OP's thread either. But I do think you are reading my posts the wrong way. The HCPs I meet are really really caring. They just struggle with patients who turn them down or fail to see the bigger picture.

The nurse who wanted my DM to have a statin genuinely cared and thought she was doing her best. She just couldn't see that my DM has a host of other problems and from my DM's perspective, a statin was another problem, not a solution. This a small example, but Op's example of 'but why wouldn't you want a defibrillator' is a bigger one. Maybe because at 81 with chronic illness, you don't want one?

I think there's a problem with the system, really, rather than with individual HCPs. I expect that many of us have seen very ill/elderly people sent down an intrusive treatment pathway without proper presentation/consideration of all the different options - I certainly have.

(I don't want to derail but Atul Gawande has written really well about this, e.g. here: www.newyorker.com/magazine/2010/08/02/letting-go-2 )

@AnnaMagnani "She just couldn't see that my DM has a host of other problems and from my DM's perspective, a statin was another problem, not a solution"

I see that, fully.

I love Atul Gawande!

I don't mind at all people discussing different ways and thoughts btw. But I must re-emphasise, all the med staff have been lovely. They just seem rather upset by the idea of treatment refusal and I do understand and respect that too. So does my mum and we're very appreciative of them all.

just looking over the Gawande article again

this was actually something we wondered about - what's the definition of dying now? how does a doctor decide someone is "end of life".

and what happened to people before they could have pacemakers, or be defibrillated or resuscitated or whatever?

I think my mum's memories of her elders dying are less traumatic than constant hospital stays and interventions and this is another thing that puts her off.

I do see a pp point that a fall could result in an injury, but we are in that space anyway. She very rarely goes for a potter outside because she is very unsteady on her feet anyway.