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Voluntarily stopping eating eating and drinking - mentions suicide


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#1 Twinmum+2

Posted 09 July 2019 - 06:24 PM

I've just read an interesting book on the above subject - the author's husband had Alzheimer's and in the absence of assisted dying legislation in their American state decided on the above path.

The way it was handled involved medical assistance purely for pain relief and discomfort alleviation and from this viewpoint was very similar to palliation of terminally ill clients.  He basically palliated himself.  

There was some discussion of legal ramifications and whether or not people have the right to this approach, how it differs from conventional suicide and whether or not a doctor involved in prescribing pain relief would be liable under physician assisted dying laws.  

The timing is also of concern particularly in neurodegenerative cases because the person needs to still be mentally competent in order to be able to refuse food and fluids.  

Here's a link in case anyone is interested:

https://www.amazon.c...,aps,386&sr=1-1

For those people who are awaiting the passing of voluntary assisted dying legislation is this a viable alternative?

EFS

Edited by Twinmum+2, 09 July 2019 - 06:25 PM.


#2 nom_de_plume

Posted 09 July 2019 - 06:35 PM

This is how my Dad chose to die. I wouldn’t recommend it. It was horrific for all involved, and frankly a relief when he finally died.

He wouldn’t have been a candidate for voluntary assisted dying in Victoria.

#3 Coffeegirl

Posted 09 July 2019 - 06:53 PM

Having just watching my FIL slowly die over 6 days, I agree it is an horrific way to go.   The family were traumatised, and still have not recovered.

He had dementia, then had a massive heart attack.  Before he was too far gone with his dementia he had signed a DNR (do not resuscitate).    After his heart attack it was decided that no more attempts to keep him alive would be made.     So other than morphein for the pain and having his lips moistened, he was given no food or drink until he passed away.    

It was a very long week for the family, and I would not want anyone else to have to ever watch that

#4 Ruf~Feral~es

Posted 09 July 2019 - 06:54 PM

Without reading the book, I have some questions:

If he was mentally capable of deciding not to eat, and sticking to it, in spite of his Alzheimer's diagnosis, then how can they say he was not?  

Also - Alheimers is ultimately a terminal illness.  At what stage is it OK to force feed a terminally ill patient against their will?

Or - if any elderly person chooses not to eat and drink, at what stage should they be force-fed, if any?  People have the ultimate autonomy to choose which medical treatment they will allow or disallow.  Tube feeding and intravenous fluids would be medical intervention.

It's all very difficult - however to my mind, if someone has the capacity to consistently refuse food and water despite their hunger or thirst, then they have the capacity to choose.

In my previous experience working with elderly, including those with dementia and Alzheimers,  if food was on offer and the person was hungry, they would eat it- unless the reason went deeper.  The capacity to stick to that decision for the awful length of time it would take is showing a clear choice.  Just as someone who would consistently remove a feeding tube or IV.    In a 17 year old teenager with an eating disorder I may feel differently, but at the end of a life?  What a shame that that is the length that some people have to go to.

Actually, it's not 'a shame'.  Its a disgrace.

#5 kadoodle

Posted 09 July 2019 - 07:09 PM

This is how my grandmother went. No Alzheimer’s, but 90yo, lots of things failing and didn’t want to go on any longer. She may have cracked on for another ten years (her mother and aunts all made it 100) , but she didn’t want to.

#6 red_squirrel

Posted 09 July 2019 - 07:10 PM

If you sign a DNR then end up in hospital you will receive palliative care and pass away peacefully and without pain.

The person isn’t conscious or distressed and all the relatives get a chance to say goodbye. Provided they aren’t in pain I don’t see a problem with it. I have been through this many times.

Often morphine doses are self administering so swifter actions can be taken.

ETA. Palliative care teams do an amazing job.

Edited by red_squirrel, 09 July 2019 - 08:41 PM.


#7 Twinmum+2

Posted 09 July 2019 - 08:24 PM

Thanks for your replies.  My impression after reading this was that his death was no different to any other palliated death which does involve mostly just morphine and other pain relieving or sedating drugs.  And it's very often traumatic for the family - hopefully not so much for the person.  Not if they are receiving appropriate medication in the right amounts.

There were a couple of times where he requested a drink but then after he was reminded of his decision he chose not to have it.  His wife said that she wouldn't have denied him fluids if he had requested them and after reminding decided he had changed his mind.  There were people who accused her of forcing him into this decision of course, and she did admit that she told him she could no longer look after him at home and that he would have to go into care.  It was after that when he made the final decision, so in a way she did I guess.

I don't think it is actually legal to force feed a patient with dementia.  I might be wrong and I'm happy to be corrected but from my experiences in healthcare so far if a patient with dementia refuses food then they are not forced to eat.  While some families might request tube feeding this is strongly discouraged as once you start tube feeding then the ceasing of it involves a deliberate decision to end life.

#8 22Fruitmincepies

Posted 09 July 2019 - 08:29 PM

View Postred_squirrel, on 09 July 2019 - 07:10 PM, said:

If you sign a DNR then end up in hospital you will receive palliative care and pass away peacefully and without pain.

The person isn’t conscious or distressed and all the relatives get a chance to say goodbye. Provided they aren’t in pain I don’t see a problem with it. I have been through this many times.

Often morphine doses are self administering so swifter actions can be taken.

My grandmother died in hospital refusing any care other than painkillers, it was a drawn out week long horror. It was traumatic for all the family, she kept hanging on when she wanted to be gone. I hope there will be a better way.

#9 born.a.girl

Posted 09 July 2019 - 08:30 PM

I was of the understanding that dehydration 'felt different' as you were dying.  That was what I read in the information on palliative care which was part of a segment for qualified nurses specialising in the area, so not just a panacea for families.

Your thirst response definitely decreases with age as it is, and I can imagine as you are dying, functions like that deteriorate also.

#10 Lucrezia Borgia

Posted 09 July 2019 - 08:35 PM

View Post22Fruitmincepies, on 09 July 2019 - 08:29 PM, said:



My grandmother died in hospital refusing any care other than painkillers, it was a drawn out week long horror. It was traumatic for all the family, she kept hanging on when she wanted to be gone. I hope there will be a better way.

same with my mum - she ended up in palliative care with chronic liver failure ...no food, no drink, no intervention - just morphine to alleviate the pain....a morphine dose for the pain, another morphine dose for break through pain...more morphine.....it was horrific, drawn out, cruel, undignified. the morphine euthanased her, i’m sure of it....eventually. i hold no grudges against the nurses - i wish they had done it sooner.

Edited by Lucrezia Borgia, 09 July 2019 - 08:37 PM.


#11 Twinmum+2

Posted 09 July 2019 - 08:45 PM

View PostLucrezia Borgia, on 09 July 2019 - 08:35 PM, said:

same with my mum - she ended up in palliative care with chronic liver failure ...no food, no drink, no intervention - just morphine to alleviate the pain....a morphine dose for the pain, another morphine dose for break through pain...more morphine.....it was horrific, drawn out, cruel, undignified. the morphine euthanased her, i’m sure of it....eventually. i hold no grudges against the nurses - i wish they had done it sooner.

This is the main issue in palliative care.  Did anyone discuss this with you?  The "double effect" of morphine is that in giving enough of it to relieve pain it will eventually cause death.  But the intent is not to cause death, it is to relieve suffering.

I'm so sorry for everyone who has been through the pain of losing a loved one in this way.  It is indeed traumatic.

#12 MarciaB

Posted 09 July 2019 - 08:46 PM

View Postred_squirrel, on 09 July 2019 - 07:10 PM, said:

If you sign a DNR then end up in hospital you will receive palliative care and pass away peacefully and without pain.

The person isn’t conscious or distressed and all the relatives get a chance to say goodbye. Provided they aren’t in pain I don’t see a problem with it. I have been through this many times.

Often morphine doses are self administering so swifter actions can be taken.

ETA. Palliative care teams do an amazing job.

I went through this with my Dad at his end of life heart failure.  Honestly he seemed very peaceful to me compared to a few days prior when he was struggling to breathe. I agree the palliative care team was amazing.  Despite being devastated by his passing, the end of life care could not be described as horrific. The nurses in particular were amazing, so compassionate.

Edited to add I am so sorry that others did have different experiences to end of life care, that must have been very upsetting.

Edited by MarciaB, 09 July 2019 - 08:55 PM.


#13 Lucrezia Borgia

Posted 09 July 2019 - 08:50 PM

View PostTwinmum+2, on 09 July 2019 - 08:45 PM, said:



This is the main issue in palliative care.  Did anyone discuss this with you?  The "double effect" of morphine is that in giving enough of it to relieve pain it will eventually cause death.  But the intent is not to cause death, it is to relieve suffering.

I'm so sorry for everyone who has been through the pain of losing a loved one in this way.  It is indeed traumatic.

no one discussed it with us (my sister and i) specifically - we just didn’t want mum to suffer anymore than she was. to be honest i thought there may have been a bit of an unspoken agreement - “the first rule of palliative morphine is we don’t talk about palliative morphine”. like i wrote, i don’t blame the nurses - I’d give anything to have mum back, but not in the state she was. she was in a wretched state- and it was never going to improve.

#14 Twinmum+2

Posted 09 July 2019 - 09:01 PM

View PostLucrezia Borgia, on 09 July 2019 - 08:50 PM, said:

no one discussed it with us (my sister and i) specifically - we just didn’t want mum to suffer anymore than she was. to be honest i thought there may have been a bit of an unspoken agreement - “the first rule of palliative morphine is we don’t talk about palliative morphine”. like i wrote, i don’t blame the nurses - I’d give anything to have mum back, but not in the state she was. she was in a wretched state- and it was never going to improve.

The nurses can only give whatever medication has been prescribed by the doctor so they aren't actually making the decisions.  And I think it's awful that no one discusses this with the family in a hospital setting.  In a hospice there is usually a lot more education and communication with the family which is one of the reasons most people describe hospice care as so much better.

#15 Lucrezia Borgia

Posted 09 July 2019 - 09:05 PM

yes sorry....i meant the palliative care team - not the just the nurses.

this was at Sacred Heart in Darlinghurst - she was at St Vincent’s prior.


#16 Cerridwen

Posted 09 July 2019 - 09:22 PM

i have so, so much to say on this topic and there is so much misinformation in this thread that I don't know where to start.

Totally exhausted though from a late shift last night, followed by an early this morning, where I arrive at work this morning to see a terminally ill woman had been sent to hospital in the middle of the night, instead of remaining in our nursing home due to a lack of recognition of the dying process and the expectation from family and other staff that we should 'do something."  You know, like multiple, futile interventions be performed. Last night we were doing something. We were providing comfort and care and keeping the pain at bay. Yes she is now going to live longer, perhaps another week or so BUT she is an old woman with terminal cancer. With brain, liver, lung and bone mets. It is her time, so let her go peacefully, in her bed, in her own time.

View PostTwinmum+2, on 09 July 2019 - 08:45 PM, said:

This is the main issue in palliative care.  Did anyone discuss this with you?  The "double effect" of morphine is that in giving enough of it to relieve pain it will eventually cause death.  But the intent is not to cause death, it is to relieve suffering.

I'm so sorry for everyone who has been through the pain of losing a loved one in this way.  It is indeed traumatic.

My bold and so very untrue. This is sooooo not the main issue at all, Also the reason why so many people have a terrible death. This belief of death by morphine. Enough of it will alleviate pain. It won't make death come sooner.

I also apologise if I upset anyone but this thread is timely and I am a bit angry and emotional. I have tried to be careful about what I say.

#17 Lucrezia Borgia

Posted 09 July 2019 - 09:30 PM

sorry...i don’t want to come across as if i am claiming any particular expertise in the area, and i don’t want to spread misinformation - i’m essentially just recounting my experience, having gone through it with mum. there is no way i would asked them to stop the morphine, i didn’t want her to be in pain ....i didn’t ask anyone about whether it might hasten her death - i didn’t want them to stop giving it to her so i guess i didn’t see the point in asking that question? and like i said i thought there may have been a bit of an unspoken agreement (again, this was just my feeling - i could be completely off base) - we all knew where she was headed. her last 6 weeks were awful - the last two were unbearable.


#18 Cerridwen

Posted 09 July 2019 - 09:41 PM

View PostLucrezia Borgia, on 09 July 2019 - 09:30 PM, said:

sorry...i don’t want to come across as if i am claiming any particular expertise in the area, and i don’t want to spread misinformation - i’m essentially just recounting my experience, having gone through it with mum. there is no way i would asked them to stop the morphine, i didn’t want her to be in pain ....i didn’t ask anyone about whether it might hasten her death - i didn’t want them to stop giving it to her so i guess i didn’t see the point in asking that question? and like i said i thought there may have been a bit of an unspoken agreement (again, this was just my feeling - i could be completely off base) - we all knew where she was headed. her last 6 weeks were awful - the last two were unbearable.

I am so very sorry to hear that your mum's last days were so awful. We, as a society, as families, as health professionals, as communities, really need to do better at palliative and end of life care.

My poor mother spent 8 months dying because doctors in ICU though interventions like feeding tubes and tracheostomies were a great idea. They pulled her away from deaths door at the time but she then had to suffer for another 8 months before she was finally able to have some peace. I wish a few more doses of morphine could have made it happen quicker.

#19 TrixieBelden

Posted 09 July 2019 - 09:42 PM

I have palliated many people.

Nobody is starved, nobody is not given food or drink. A dying person can eat or drink whatever they want. Part of the natural dying process is to withdraw from things like seeking sustenance.  It is in fact one of the signs that someone is dying.

It is also absolutely untrue that morphine is given in doses that will cause a respiratory arrest.  Many many people believe this and families often comment to me ‘we know what you’re doing’ etc. They really believe they’re in on ‘the secret’. In fact their relatives are receiving doses of morphine and other drugs that relieve pain and other distressing symptoms that are nowhere near the kind of massive doses that would cause death.  Their relatives die because they are dying. That’s why they are palliated. They’re dying.  

Many people repeating a myth does not make it true; unfortunately it does make it harder to introduce patients to palliative care services because of widespread misinformation.

If your relative is in hospital, is palliated and has uncontrolled distressing symptoms this is a medical emergency and should be escalated to the responsible doctor. You can request a medical review at any time.

#20 Cerridwen

Posted 09 July 2019 - 09:44 PM

For anyone that is interested:

THE DOUBLE EFFECT OF PAIN MEDICATION: SEPARATING MYTH FROM REALITY

https://hospicecare....h-from-reality/

Edited by Cerridwen, 09 July 2019 - 09:46 PM.


#21 Lucrezia Borgia

Posted 09 July 2019 - 09:50 PM

View PostCerridwen, on 09 July 2019 - 09:41 PM, said:



I am so very sorry to hear that your mum's last days were so awful. We, as a society, as families, as health professionals, as communities, really need to do better at palliative and end of life care.

My poor mother spent 8 months dying because doctors in ICU though interventions like feeding tubes and tracheostomies were a great idea. They pulled her away from deaths door at the time but she then had to suffer for another 8 months before she was finally able to have some peace. I wish a few more doses of morphine could have made it happen quicker.

i’m sorry for your mother. it’s awful to watch, you feel so helpless.

i agree - we probably could do better, although i must admit, i can’t conceive what a “good death” might be? i think I still struggle to come to terms with it, which is probably why i’m not expressing myself well - i actually have no issue with her palliative care team - i think they gave her excellent care. her dr at the hospice is actually quite an outspoken commentator on end of life care - i don’t think EB rules allow me to name him, but i’ve seen him interviewed a few times. i think he is very good at what he does, i was just a lost cause for him, because i wanted him to tell me she would get better, and of course, he couldn’t tell me that. i kind of felt like i was sleepwalking through the whole ordeal.


#22 lucky 2

Posted 09 July 2019 - 09:55 PM

View PostCerridwen, on 09 July 2019 - 09:22 PM, said:

i have so, so much to say on this topic and there is so much misinformation in this thread that I don't know where to start.

Totally exhausted though from a late shift last night, followed by an early this morning, where I arrive at work this morning to see a terminally ill woman had been sent to hospital in the middle of the night, instead of remaining in our nursing home due to a lack of recognition of the dying process and the expectation from family and other staff that we should 'do something."  You know, like multiple, futile interventions be performed. Last night we were doing something. We were providing comfort and care and keeping the pain at bay. Yes she is now going to live longer, perhaps another week or so BUT she is an old woman with terminal cancer. With brain, liver, lung and bone mets. It is her time, so let her go peacefully, in her bed, in her own time.



My bold and so very untrue. This is sooooo not the main issue at all, Also the reason why so many people have a terrible death. This belief of death by morphine. Enough of it will alleviate pain. It won't make death come sooner.

I also apologise if I upset anyone but this thread is timely and I am a bit angry and emotional. I have tried to be careful about what I say.
I appreciated your post.
What you have written is timely for me as I worry about my dad having palliative care in his aged care facility because I know the majority of his care will be provided by personal carers who have very limited training. There will only be the one nurse in his area.
Yes, he would probably prefer to stay but I desperately want him to be cared for by experienced palliative care nurses, I worry he will suffer more if he stays.
If aged care was reliable and high quality I wouldn't worry.
Dying people should be cared for by registered nurses, not personal carers.

Eta, I have undertaken palliative care training and worked in that area but not for 25yrs, I'm sure much has changed

Also, my condolences to all who have lost loved ones x

#23 a letter to Elise.

Posted 09 July 2019 - 10:15 PM

A timely post for me. Today is the anniversary of my mothers death.  She died 3 months after the day she was diagnosed with cancer. Within 3 weeks of diagnosis, she was unable to eat or speak, so was given a peg in her stomach for sustenance. Such a monumental waste of time, and after the third time it leaked acid onto her skin, she requested it be taken out and not replaced. So essentially, she starved to death.

It was a long and hideous death. She cried constantly from the pain and begged for us to kill her until she finally, thankfully,  became unconscious for the last week.

Any one who questions the right of an individual to choose a dignified, and less excruciating death must have zero empathy.



#24 SkeptiHandsOnMum

Posted 09 July 2019 - 10:20 PM

View PostTrixieBelden, on 09 July 2019 - 09:42 PM, said:

I have palliated many people.

Nobody is starved, nobody is not given food or drink. A dying person can eat or drink whatever they want. Part of the natural dying process is to withdraw from things like seeking sustenance.  It is in fact one of the signs that someone is dying.

It is also absolutely untrue that morphine is given in doses that will cause a respiratory arrest.  Many many people believe this and families often comment to me ‘we know what you’re doing’ etc. They really believe they’re in on ‘the secret’. In fact their relatives are receiving doses of morphine and other drugs that relieve pain and other distressing symptoms that are nowhere near the kind of massive doses that would cause death.  Their relatives die because they are dying. That’s why they are palliated. They’re dying.  

Many people repeating a myth does not make it true; unfortunately it does make it harder to introduce patients to palliative care services because of widespread misinformation.

If your relative is in hospital, is palliated and has uncontrolled distressing symptoms this is a medical emergency and should be escalated to the responsible doctor. You can request a medical review at any time.
I have recently worked in palliative care. Not nearly to the extent of others here. But TrixieBelden's words are so very much the truth.

If we were allowed to give people an assisted death, it would not be via morphine. Morphine does not hasten death - increasing its dose to deal with increasing pain and existential discomfort just happen to occur around the time of death - the increase in symptoms are related to the dying process, the morphine is not related to the death.

Signs that death is nearing include more time asleep than awake, and a lack of appetite amongst other things. These are signs of the disease process, not signs of the treatment.

We should all be afforded a good death. So much of that is about having people around us who are informed as to what is happening to us and how to be as supportive of that as possible (i.e. good palliative medical care, and informed support people/family/friends).

#25 22Fruitmincepies

Posted 09 July 2019 - 10:22 PM

When I say my grandmother’s death was horrible, it was purely the length of time it took. She did not appear to be in any pain, but she wasn’t gaining anything by being unconscious in hospital for a week, and it was distressing for us. I wish she could have died much sooner. My other grandmother, she got pneumonia, refused treatment, and died within 24 hours of getting sick (she was in her 90s).




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