Active treatment or palliative...

[JackMcD]

My mum (80), who has Alzheimer’s and Vascular dementia, has just been admitted to hospital with heart block, from the nursing home. She is on CCU and they say she needs a permanent pacemaker.

Although she requires residential care, she is actually normally more happy/content than she has been most of her life. Even at the moment she is still chirpy and joking - but without any idea where she is or what is going on.

While a pacemaker could get her back to the content space of the home; vascular dementia means there could be a sudden further deterioration at any point. Longer term prognosis we know.

I feel awful even thinking this - but passing away from heart block while she is content seems much more pleasant than the potential future scenario. Even the pacemaker procedure itself will be stressful and requires being immobile, wired up, and monitored for several days.

Am I heartless thinking like this? WIll the consultant think I am a murderer if I try to discuss this or don't give consent?

 

[Grannie G]

Hello @JackMcD

Is this your decision to make?

I don`t know enough about pacemakers to know whether or not the surgery needs a general or local anaesthetic . I know a general can have a marked detrimental effect on people with dementia whereas a local isn`t as risky.

If your mother has a fair chance of recovery from surgery with a few years ahead of happy/contented life, ask yourself if you are thinking of her or something which might be less painful for yourself.

My husband was asked to have a barium Xray when he had problems swallowing. For this, he would have needed to swallow a dyed drink and not pass urine for a couple of hours. It would also have meant a journey to hospital in a wheelchair taxi, which was a nightmare the one and only time we tried it when he fely dizzy and disorientated and very frightened.
If he had had a growth he would not have withstood the treatment so it was decided, with his doctor, not to go ahread. He did not have a growth and lived happily eating soft food.

Your mother`s consultant will not think you are a murderer and I suggest you have a good chat with them to ease your mind.

 

[JackMcD]

THanks - useful challenges, helped me think through.

Yes it is my decision. She doesn’t have capacity and there are no other family or friends. Am I thinking of myself? Perhaps a little - but my mother was always a healthy outdoor type. While she is content staring into space she has lost all mobility and memory, her next deterioration may well be the one that changes her personality, makes her double incontinent or bed bound. But yes - there is also a chance of her having several more contented years, or at least months. The unpredictability makes this all so difficult... Wil talk to cardiologist consultant later. Thanks again,

B

 

[Duggies-girl]

@JackMcD My dad had a pacemaker fitted in 2012 I went with him and it was a simple procedure and it didn't take long. I think we were there for a few hours and we were given a cup of tea and a sandwich afterwards.

It was a local anaesthetic and dad was awake the whole time. I don't think it was an unpleasant experience for dad because there was a small team with him and they chatted to him all the time.

Dad had one of the old types which you could see under the skin but I think they are a lot smaller now.

 

[canary]

My mum had a stroke while she was in her care home. I spoke to her consultant at the hospital where she had been taken and he said that the usual procedure was to do scans and insert stents where necessary. I wasnt too happy about this, so I asked lots of questions and said finally that perhaps it would be better if mum didnt have this. I was so worried that he would think me a dreadful daughter, but instead he was relieved and said that actually he agreed with me.

Please talk all the pros and cons over with the doctor. If you do decide not to go for it, that is OK

 

[Louise7]

Even the pacemaker procedure itself will be stressful and requires being immobile, wired up, and monitored for several days.

@JackMcD to add to what @Duggies-girl has posted my mum had a pacemaker fitted 18 months ago due to bradycardia/arrythmia/AV block. After discussing the situation with cardio the surgeon recommended the new lead-less type of pacemaker. It is inserted through an artery and goes into the heart with nothing visible in the chest area. A local anaesthetic was used and mum had an overnight stay but there were no wires, no need to keep her arm immobile for weeks and it just requires an annual checkup. Mum was younger than your mum and family took time to consider the pros and cons but it has improved her quality of life and she seems much brighter in herself now that the symptoms have gone. It is however a personal choice and the surgeon certainly won't think less of you if you decide that the procedure isn't right for your mum. Take your time to think things through and you'll reach the right decision.

 

[Bunpoots]

@JackMcD my dad had made his wishes clear to me when he realised he had dementia and he hoped he’d die before it got severe so turned down the chance of a pacemaker when it was offered to him, he was about 86 at the time.

The issue came up again when dad was ninety with severe dementia (although by this time he thought he was perfectly healthy) and I had to explain what dad’s wishes were. The consultant agreed it was best not to go ahead.

Do you know what your mum would’ve wanted?

 

[JackMcD]

Thanks all, really helpful range of responses. While the admitting Drs were probably on autopilot looking at the heart block, consultant was brilliant and saw bigger picture, prognosis etc. He was also worried about my mum being so small and frail - higher risk of complications etc. We agreed best plan for her is straight back to the care home with no intervention. As said above though - I do realise this is an individual decision and will be different for everyone. I need to agree a plan with care home to prevent further pointless admissions - with hindsight this admission could have been avoided completely.
On the specifics of pacemaker mentioned above - I can only presume different types / degrees of heartblock have different pacemaker needs hence difference.

 

[lemonbalm]

That sounds like a good decision @JackMcD. I'm sure having the consultant agreeing with you is a tremendous relief.

 

[Jaded'n'faded]

Thanks all, really helpful range of responses. While the admitting Drs were probably on autopilot looking at the heart block, consultant was brilliant and saw bigger picture, prognosis etc. He was also worried about my mum being so small and frail - higher risk of complications etc. We agreed best plan for her is straight back to the care home with no intervention. As said above though - I do realise this is an individual decision and will be different for everyone. I need to agree a plan with care home to prevent further pointless admissions - with hindsight this admission could have been avoided completely.
On the specifics of pacemaker mentioned above - I can only presume different types / degrees of heartblock have different pacemaker needs hence difference.

You can set this up with your mum's GP. Speak to him/her about it and you can prevent any further hospital admissions and have it on her records that the care home is her chosen place of death.

All sounds a bit grim but I did this with my mum and it was a relief she wasn't carted off to hospital every time she had a fall.

 

[Banjomansmate]

After his third time in hospital after a fall, the first resulting in broken femur and rapid deterioration of LBD, I spoke with the A&E Dr. and she agreed that in accordance with the wishes of his Advance Directive The Banjoman shouldn’t be sent to Hospital again unless he sustained a major injury. The Care Home manager agreed with this and the GP phoned me to discuss exactly what should happen. A couple of weeks later he deteriorated rapidly and was cared for until he died peacefully at the Home.