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Pacemaker and end of life.

BobD profile image
BobDVolunteer
50 Replies

Some discussion a couple of days ago re pacemakers/ICDs and what happens when you die or are fatally injured/dying etc. Morbid I know but a valid question.

My pal Hugh who is a GP popped in to see me yesterday in his lovely White MGA complete with golden lab on the passenger seat .(seat belts not required pre 60s) After several cups of coffee I asked him the exact question. His answer is that all paramedics and ambulance crews carry a magnetic device to switch off the pacemaker or ICD in such circumstances.

Simples as the meerkat said.

Bob

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BobD
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cmscott profile image
cmscott

Bob, why is it necessary or preferred to have the pacemaker switched off when one dies. Interesting tho. Thanks

Clay

BobD profile image
BobDVolunteer in reply to cmscott

Otherwise your heart won't stop and if you have an ICD it could be dangerous for those treating you.

cmscott profile image
cmscott in reply to BobD

Thanks Bob, I did not know.

Clay

pottypete1 profile image
pottypete1

Bob

Thank you for posting this information it is very interesting.

However, I believe the main thread of cassie46 's post was the concern at end of a long life (cassie's Dad was over 90), when the pacemaker is keeping a patient alive when the patient has had enough of life and maybe in pain.

The fear being that the pacemaker might prolong someone's life when in normal circumstances they would die naturally.

Pete

BobD profile image
BobDVolunteer in reply to pottypete1

True but this was a side issue to the main thread.

In those circumstances the usual protocols continue in that if turning it off terminates life then this could be an offence under current legislation and lead to prosecution just as would be the case if excess drugs were administered. Quite different to somebody who may be brain dead but who's heart is still beating artificially.

It really is a difficult area and one we hope never to have to face.

pottypete1 profile image
pottypete1 in reply to BobD

How right you are Bob.

That situation doesn't bear thinking about in reality.

My view is that we fortunately cannot predict the future and should make a decision on a pacemaker in regards to improving QOL if and when the choice is presented.

The matter of end of life decisions is a big subject upon which there are very strong views by some.

I totally understand how thought provoking the added dimension of the effect of also having a pacemaker in such difficult circumstances would be.

Night Night over and out.

Pete

Well we live and learn I have such a device and never considered this question. Will start voicing to my family my request re this

in reply to

Ps as a district nursing sister I never thought about this either. Had one of my end of life care patients had a pacemaker what would we have done/ advised

in reply to

Apparently techs can come out from hospital if care in community. Just make relatives aware of wishes and options

GrannySmithgs5 profile image
GrannySmithgs5 in reply to

Same employment as you Frills , can also say the problem had never come up in conversation and had never occurred to me .x

GrannySmithgs5 profile image
GrannySmithgs5 in reply to GrannySmithgs5

Having posted the above and then mulled the problem over for a while , it suddenly occurred to me that my husband has a pacemaker fitted for complete heart block . Fitted when his heart beat went down to 19 a minute . The device doesn't allow his heart beat to slow further than 70 . At end of life that would be a real problem , something we as a family need to clarify . Am really shocked by my own ignorance .

Jean x

in reply to GrannySmithgs5

Well we know now ha ha x

in reply to GrannySmithgs5

I raised it on a DN forum lots knew what to do which was good x

GrannySmithgs5 profile image
GrannySmithgs5 in reply to

Thats reassuring Frills !

cassie46 profile image
cassie46

Hi it's Cassie - the one who brought the subject up. My Dad was 94 and had given up on life. He was a very proud and independant man, so when he lost a lot of his mobility and had to have so much help with everday things he just lost the will to live. There was no real health problems except of course frailty and old age. He had a pacemaker fitted about 9 years ago because he had a low heart rate and had had a few TIA's.

When he went into decline obviously all his organs started to fail but we are fairly sure that if he had had the pacemaker swithched off he would have slipped away more quickly. Over three weeks before he died we were told to he would probably not survive the night (he was in a care home and had end of life care) but it did not happen. Those following weeks and days were very distressing to watch, he was never really with us but his body and mind had bouts of fighting back which distressed him greatly. Frills - we did ask the end of care team about switching off the pacemaker but we were told no. At no time when he had the pacemaker fitted was any of this mentioned. Perhaps it should be part of the info they give you before or after having a pacemaker fitted?

As I may be having a pace and ablate it will be one of the questions that I will ask, my wish would be that if I ever got to that stage I would like it to be switched off. I have discussed with my family and they are happy with this.

Cassie

opal11uk profile image
opal11uk in reply to cassie46

Sorry for your loss Cassie, it must have been a rough time for you and your Family.

pottypete1 profile image
pottypete1 in reply to cassie46

Dear Cassie

Thank you so much for raising this subject in the first place particularly as you had such a distressing experience with your dear Dad. I must have been very stressful for you.

There have been numerous news reports about euthanasia and the surrounding controversy in recent years and I have a sneaky suspicion that turning off a patient's pacemaker would currently fall the wrong side of this law.

My EP was telling me a few months ago that I am on the slippery slope toward pace and ablate as I have heart block and very bad conductivity between my atrium and my in addition to my rhythm problems.

For me I was already reluctant to accept the option of a pacemaker due to my very sensitive immune system and the severe allergic skin reactions I have had due to electrodes and sticky pads in the past.

I was assured reaction to a pacemaker implant was not an issue as allergic reactions to the titanium was not recorded. However with the wonders of the Internet I managed to find some cases worldwide.

Now, with the subject of end of life care you have raised I am even more reluctant but if my QOL deteriorates I shall have to ask even more questions if I am told that a pacemaker is inevitable.

After all it has to be an individuals decision and permission has to be given before a pacemaker is installed.

Pete

seasider18 profile image
seasider18 in reply to pottypete1

The pacemaker can be inserted within a pigskin pouch for patients with an allergy to the metal.

pottypete1 profile image
pottypete1 in reply to seasider18

That sounds interesting

Oink oink!

Seriously it is another question to ask if I ever get to that decision making situation.

Pete

seasider18 profile image
seasider18 in reply to pottypete1

I tend to suffer from nickel allergy and wish that I had know this prior to my pacemaker being fitted. I have a vague irritating itch on my chest now.

I'm already Oink,Oink from my replaced aortic valve. Do patients with religious objections to pigs all insist on mechanical valves and a lifetime on Warfarin?

opal11uk profile image
opal11uk in reply to seasider18

yep thats my allergy, not to all metals but to nickel

seasider18 profile image
seasider18 in reply to opal11uk

I wear my watch in my top pocket. I hope its tiny battery does not affect my pacemaker :-)

Paper65 profile image
Paper65 in reply to seasider18

Or vegans.....I couldn't have a pigskin pouch in me .....I didn't even realise they did that....

seasider18 profile image
seasider18 in reply to Paper65

I used to buy a product in gelatine capsules from a herbalist in Edinburgh. One day I asked her if her vegetarian and vegan customers bought them. Her face fell. A month or so later she had a sign in the window to the effect that none of their capsules were made from animal products.

seasider18 profile image
seasider18 in reply to Paper65

Is paper a vegetable product ?

Paper65 profile image
Paper65 in reply to seasider18

Not one I can think of? ......but definitely not an animal product :-)

Paper65 profile image
Paper65 in reply to seasider18

Potentially !!

:-)

BobD profile image
BobDVolunteer in reply to seasider18

If it is made from wood pulp yes.

pottypete1 profile image
pottypete1 in reply to seasider18

I would have to then be tested for allergic reaction to pigskin.

My wife has just said she would hope it was not "cracklin'"

Pete

seasider18 profile image
seasider18 in reply to pottypete1

Just about to have my Sunday Bacon and eggs.

opal11uk profile image
opal11uk in reply to seasider18

I have a metal allergy and my Pacemaker is made out of Titanium if I remember rightly

cassie46 profile image
cassie46 in reply to pottypete1

Thanks fo your reply Pete - It also reminds me that I am allergic to most metals, can only ware gold or platinum jewelley - donn't know about titanium. Another question to ask. Also I seem to be one of those people that have a lot of static - go shopping and I react to trolleys, freezer door handles , sides of food cabinets - even touching people sometimes- perhaps I should mention that lol!!!

Cassie

Mazza23 profile image
Mazza23

This is a very good subject and one I had never thought about. But it is a question to add to the list thank you for bringing it up at one stage was told I may need pacemaker defib so good to know

opal11uk profile image
opal11uk

Well heartwarming to know they don't stop on their own hehehe, I wonder if they re-use them if they are fine used, I'll make sure I look after mine.

opal11uk profile image
opal11uk in reply to opal11uk

sorry didn't mean to be frivolous, I realise it is a serious matter and have just read Cassie 46's post.

seasider18 profile image
seasider18 in reply to opal11uk

They have to be removed by the undertaker before cremation to avoid them exploding.

jossikins profile image
jossikins

Thank you all for this information. I, too, sport a pacemaker (to deal with persistent AF). I had never considered what might happen at the end of life. Hopefully, that is still well in the distance, but I feel richer through having been armed with this information.

Junoesque profile image
Junoesque

I too have a pacemaker and did not know this. Thank you for the information. I knew nothing about what happens when we die. We should certainly be given this information when the pacemaker is inserted. So we can be prepared when and if the occasion arises.

sann profile image
sann in reply to Junoesque

I had a pacemaker fitted years ago and no one told me about the end of life procedure and what would happen have learnt it from here, now has me worrying.

Sann

in reply to sann

Hi what is it you are worrying about?

seasider18 profile image
seasider18

Extract from full article:

dailymail.co.uk/health/arti...

The picture is slightly different with other heart devices such as Implantable cardioverter defibrillators (ICDs) which are used to correct an abnormal heart rhythm rather than helping the heart beat steadily.

These devices, implanted in around 9,000 people in the UK every year, kick in when an abnormal heart rhythm occurs which can cause sudden cardiac arrest (where the heart stops beating).

Implanted under the collarbone as a pacemaker is, they work by firing a small electric shock into the heart to kick-start it (some pacemakers have this function too).

This might happen once every few months or not even for years.

However, this can be both painful and traumatic, especially at the end of life, and can lead to a prolonged and distressing death by continuing to give electric shocks.

In one particularly upsetting case reported in a US medical journal, a man suffered 33 shocks as he lay dying in his wife’s arms — the ICD ‘got so hot that it burned through his skin’, his wife later reported.

‘Dying patients often have multi-organ failure which can cause metabolic and chemical changes that may trigger arrhythmias, faulty heart beats and in turn activate the ICD,’ explains Dr James Beattie, a consultant cardiologist at the Heart of England NHS Foundation Trust, Birmingham.

‘If the device goes off when the patient is conscious, the shock is like a blow to the chest, causing discomfort and distress. It may also fire repeatedly.

‘This may result in a distressing death for the patient and distress for the families.’

Yet despite this suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research published in the Annals of Internal Medicine.

Furthermore, a 2011 survey by the National Council for Palliative Care suggested that only 40 per cent of UK hospices have access to the technology to deactivate the device urgently, potentially risking an undignified and painful death in hundreds of patients should they suddenly deteriorate.

Switching off the device involves holding a magnet over it, temporarily closing a magnetic switch incorporated in it.

To turn it off permanently the device has to then be reprogrammed remotely using a ‘wand’ attached to a computer.

Medical professionals and families face a number of dilemmas when deciding whether to turn off an ICD.

One is the difficulty in accurately predicting when the patient is reaching the end of their life.

‘Determining this isn’t always clear, especially with a condition such as heart failure when patients may have survived crises over many years,’ explains Professor Johnson.

‘This can be complicated further if the patient is suffering from dementia and unable to make decisions about their care.’

There is also an understandable reluctance by patients and their families to take away anything that can prolong life.

‘Patients and their families frequently think of the device as entirely beneficial,’ says Professor Johnson.

BobD profile image
BobDVolunteer in reply to seasider18

A couple of years ago there was a helicopter rescue program on TV (RAF ASR ) where a yachts man in the channel with an ICD which was faulty and shocking him every minute. This posed serious problems for the winch-man who had to hook up the patient between shocks or get knocked about himself I think. Not a pleasant thought and I do know from meeting people with ICDs that they fear them going off more than anything.

seasider18 profile image
seasider18 in reply to BobD

I'd not realised that the shock would get to someone in contact with the wearer.

What happens if it goes off when sleeping next to your other half or in an intimate moment?

BobD profile image
BobDVolunteer in reply to seasider18

I think it is more the spontaneous jerking of the body during the shock. I am not going to even think about intimate moments although--------

Offcut profile image
Offcut

Great post and the responses are as interesting to read as well. I keep being told I am in line for a pacemaker then they cancel but still say it is an option? As a multi condition person it is most likely my lungs will fail first so might not be an issue?

Be Well

in reply to Offcut

Don't know but I'm going to have frank discussions with my family and docs whilst in reasonable condition . My pacemaker is giving me life when it's incompatible I'd like it to be switched off same for any fruitless treatment

in reply to

Oh a happy note 11 days to skiathos 😎😎😎

cassie46 profile image
cassie46

Just a aside to this - my Dad became agitated one night (he was not really consious) just flaying around and he fell out of bed. We were not there, in the morning when we came in the care home had put the sides of his bed up to stop this. Paliative nurses came in and told us to take them down. It was by civil european rights unacceptable, it was restricting the patients movements. As he was not consious of what he was doing how silly. But had to have the bed sides down and put a mattress on teh floor in case it happened again.

Cassie

cmscott profile image
cmscott in reply to cassie46

Hi cassie46, this is Clay. I am 91 years. I have a pacemaker. Diagnosed with A Fib in 2014. Fortunately I am in good health but presently suffer with ongoing dizzy/drunk feelings but after many heart and head tests and medicine changes we have not been able to find a cause for this problem.

The reason for this post is this discussion that we are having having here on HU. I feel that my situation is very relevant to that of your dad and I am very interested in what others have to say and learn what to expect as I get even older. I am sorry for the rough time you had with your father and hope that you are feeling better about the matter as time moves on. I live in the USA.

Clay

pottypete1 profile image
pottypete1 in reply to cassie46

Morning Cassie

I find this very upsetting!

My mum died 21 years ago.

During the last 3 years of her life they told us 3 times that she would not last the night. Each time she was up and walking about with her zimmer frame a few days later.

She did not have a pacemaker but your story has brought back memories.

At one stage she was in hospital I cannot remember why.

She was so thin and frail her wedding ring just disappeared one day they told us it must have fallen off. It was never found.

Then one night she fell out of bed hitting her head. This accident resulted in injuries that required 83 stitches in the paper thin skin on her head. It took over a year to heal.

Pete

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