Prolonging Death

[luggy]

Hi Everyone.

I've posted on here a few times regarding my mum's very advanced dementia, which has resulted in her eating very little. I'm struggling with the ethics of the care home winding prescribed Oral Nutritional Supplements into mum, when it seems to me that her body is wanting to close down.

Mum is in such a pitiful state, being distressed for most of her waking hours. She has no sense of time, place, self and no longer recognises me. Behaviour logs show that she spends most of the day shrieking and crying. She's resistive to personal care due to fear. She has been bed bound for 2 years - she has not left her bed or her room for all of that time because she becomes combative when hoisted. Consequently, she is socially isolated. She has disturbing hallucinations. She has contractures. Pain relief doesn't seem to help with the distress. The quality of her life is less than zero.

Mum would never acknowledge that she had dementia, and so she would never express her wishes. There is no living will in place. I have LPOA for Health & Welfare. I have questioned the ethics of administering mum with ONS with the care home manager, but the stock reply is that mum is not EOL yet and that ONS are necessary to prevent malnutrition. Surely, if someone at mum's stage of dementia (she's had it for 18 years) is declining food, we should not be prolonging the natural process of dying by giving them ONS? The longer mum lives, the longer she will suffer, which is surely not in her best interests.

I had a very similar situation with my dad, last year when he was admitted to hospital. Following a conversation with the Consultant, it was agreed that it was in dad's best interests to allow him to slip away, with the support of anticipatory drugs. Prior to that, we had the same scenario and outcome in hospital with my MIL. Care homes seem to have a different approach with this issue, it seems.

I do not condone, nor am I suggesting, that food and drink is withheld. That is unethical, despicable and probably a criminal offence.

It is difficult to find any information on this subject - most of it relates to tube feeding.

My next step is to speak with mum's GP. I'd be grateful if anyone has any experience they'd be willing to share regarding this issue, or if anyone can offer me any thoughts or suggestions. Thank you.

 

[Bunpoots]

I don’t have anything constructive to say @luggy but I do agree with you that it seems kinder to let your mum slip away. Hopefully her doctor will be more helpful with suggestions of how to let your mum exit this life with as little distress as possible.

 

[Palerider]

Hi Everyone.

I've posted on here a few times regarding my mum's very advanced dementia, which has resulted in her eating very little. I'm struggling with the ethics of the care home winding prescribed Oral Nutritional Supplements into mum, when it seems to me that her body is wanting to close down.

Mum is in such a pitiful state, being distressed for most of her waking hours. She has no sense of time, place, self and no longer recognises me. Behaviour logs show that she spends most of the day shrieking and crying. She's resistive to personal care due to fear. She has been bed bound for 2 years - she has not left her bed or her room for all of that time because she becomes combative when hoisted. Consequently, she is socially isolated. She has disturbing hallucinations. She has contractures. Pain relief doesn't seem to help with the distress. The quality of her life is less than zero.

Mum would never acknowledge that she had dementia, and so she would never express her wishes. There is no living will in place. I have LPOA for Health & Welfare. I have questioned the ethics of administering mum with ONS with the care home manager, but the stock reply is that mum is not EOL yet and that ONS are necessary to prevent malnutrition. Surely, if someone at mum's stage of dementia (she's had it for 18 years) is declining food, we should not be prolonging the natural process of dying by giving them ONS? The longer mum lives, the longer she will suffer, which is surely not in her best interests.

I had a very similar situation with my dad, last year when he was admitted to hospital. Following a conversation with the Consultant, it was agreed that it was in dad's best interests to allow him to slip away, with the support of anticipatory drugs. Prior to that, we had the same scenario and outcome in hospital with my MIL. Care homes seem to have a different approach with this issue, it seems.

I do not condone, nor am I suggesting, that food and drink is withheld. That is unethical, despicable and probably a criminal offence.

It is difficult to find any information on this subject - most of it relates to tube feeding.

My next step is to speak with mum's GP. I'd be grateful if anyone has any experience they'd be willing to share regarding this issue, or if anyone can offer me any thoughts or suggestions. Thank you.

I am sure your thoughts are genuinely about the right care.

Tube feeding in end stage dementia was stopped a long time ago as it has no benefit at all, it is like trying to control something that we can't control as the brain loses its hunger centre due to the disease. The only way of really dealing with feeding is to give something and see. Dementia by its natural course effects the part of the brain that tells us we need to eat but it also means that no amount of prompting etc will change that. It is also means this might not be end of life just yet but it is a warning sign. If your mum is taking fluids then she can go on like this for some time and she may even improve or she may not.

All you can do is try and see and wait unfortunately. No one knows when actual end of life will be at best its a guestimation. The flip side is that dementia is so unpredictable some people will pass unexpectedly and others will demise slowly, but there is no way of knowing when.

 

[nitram]

Many CCG/ICB publish guidance on the use of ONS
this is a typical example.

 

[luggy]

Many CCG/ICB publish guidance on the use of ONS
this is a typical example.

Thank you. I will have a read of this.

 

[Palerider]

@nitram the link you posted can't be accessed directly

 

[luggy]

I am sure your thoughts are genuinely about the right care.

Tube feeding in end stage dementia was stopped a long time ago as it has no benefit at all, it is like trying to control something that we can't control as the brain loses its hunger centre due to the disease. The only way of really dealing with feeding is to give something and see. Dementia by its natural course effects the part of the brain that tells us we need to eat but it also means that no amount of prompting etc will change that. It is also means this might not be end of life just yet but it is a warning sign. If your mum is taking fluids then she can go on like this for some time and she may even improve or she may not.

All you can do is try and see and wait unfortunately. No one knows when actual end of life will be at best its a guestimation. The flip side is that dementia is so unpredictable some people will pass unexpectedly and others will demise slowly, but there is no way of knowing when.

Thank you for replying. I have found lots of information on the unsuitability of tube feeding for those with dementia, and have some experience with this method of nutrition/fluid/medication route with my father who suffered a massive stroke and could not swallow.

Mum's appetite has been dwindling for years, and she has been eating virtually nothing for almost a year, so it is unlikely that she will improve. Mum's dignity has been taken from her by the dementia, and it will never return. She deserves better than this, and it's my duty as her daughter and LPOA to raise these issues in her best interests, so yes, my thoughts are genuinely about the right care.

 

[Palerider]

Thank you for replying. I have found lots of information on the unsuitability of tube feeding for those with dementia, and have some experience with this method of nutrition/fluid/medication route with my father who suffered a massive stroke and could not swallow.

Mum's appetite has been dwindling for years, and she has been eating virtually nothing for almost a year, so it is unlikely that she will improve. Mum's dignity has been taken from her by the dementia, and it will never return. She deserves better than this, and it's my duty as her daughter and LPOA to raise these issues in her best interests, so yes, my thoughts are genuinely about the right care.

I am in the same boat with my mum who is now advanced Alzheimer's -its not an easy path to have to walk but someone has to be there for them right up until the end. Wishing you well @luggy

 

[nitram]

@nitram the link you posted can't be accessed directly

It's a pdf

https://www.kirkleesccg.nhs.uk/wp-content/uploads/2022/03/Oral-Nutritional-Supplements-ONS-prescribing-guidance.pdf

Is it being downloaded and not opened?

 

[Neveradullday!]

It's a pdf

https://www.kirkleesccg.nhs.uk/wp-content/uploads/2022/03/Oral-Nutritional-Supplements-ONS-prescribing-guidance.pdf

Is it being downloaded and not opened?

It works perfectly on my phone

 

[nitram]

It works perfectly on my phone

Depending on OS and settings it may just go into download folder and require manual opening.

 

[Neveradullday!]

Depending on OS and settings it may just go into download folder and require manual opening.

It goes into my download folder, but still opens automatically before my very eyes, too.

 

[nitram]

It goes into my download folder, but still opens automatically before my very eyes, too.

I have mine set to just open and not clutter up the download folder, I can save it somewhere if I want to.

 

[Neveradullday!]

Excellent idea.

 

[Palerider]

Its OK the link is working now guys

 

[Rugby kate]

We held a really firm line on supplements. Mum had been incredibly clear during her life that she didn't want to be artificially prolonged, didn't want flu jabs, supplements, etc. So I've had the talk with countless medical and care professionals, that she was crystal clear on her desired choices, unafraid of death, and now she has been robbed of her voice by dementia, we are speaking her words for her and making her wishes known. I've had this put on every file she's got, and all the family know it and will pile in if needed. It drives me mad that every time she gets a cough I have to step in and stop them giving her antibiotics. I mean, she's bedbound, nonverbal, and has no quality of life. Breaks my heart, and I feel your pain and frustration.

 

[luggy]

We held a really firm line on supplements. Mum had been incredibly clear during her life that she didn't want to be artificially prolonged, didn't want flu jabs, supplements, etc. So I've had the talk with countless medical and care professionals, that she was crystal clear on her desired choices, unafraid of death, and now she has been robbed of her voice by dementia, we are speaking her words for her and making her wishes known. I've had this put on every file she's got, and all the family know it and will pile in if needed. It drives me mad that every time she gets a cough I have to step in and stop them giving her antibiotics. I mean, she's bedbound, nonverbal, and has no quality of life. Breaks my heart, and I feel your pain and frustration.

Hi Rugby kate. Thank you for your empathy and support. It helps to read that someone is on my wavelength. I generally get stone walled by the medical and care professionals when I raise this subject with them.

I spoke to mum's GP yesterday, who explained that withdrawing ONS is not considered to be good practice as it results in someone dying from malnutrition. He went on to say that generally ONS tend to be withdrawn when someone is only days, possibly a week or 2, from dying.

Unfortunately, mum never indicated her wishes when she still had capacity. Illness, death, dementia were taboo subjects with both of my parents.

So, the heartbreak, pain, suffering and frustration continues. Sending my love to you, your family and your mum x

 

[luggy]

I don’t have anything constructive to say @luggy but I do agree with you that it seems kinder to let your mum slip away. Hopefully her doctor will be more helpful with suggestions of how to let your mum exit this life with as little distress as possible.

Thank you for replying Bunpoots. It seems unlikely that what we both hope for will be allowed to happen. I appreciate your support.

 

[sdmhred]

Oh I’m sorry to read this for you both. Am I being a little cynical that this is a result of the threat of litigation. The GP wouldn’t want to be accused of neglect - rather than letting nature take its course.

Thankyou for sharing these difficult issues. It is helpful to have had time to think rather than be taken by surprise as and when they arise here.

 

[luggy]

Oh I’m sorry to read this for you both. Am I being a little cynical that this is a result of the threat of litigation. The GP wouldn’t want to be accused of neglect - rather than letting nature take its course.

Thankyou for sharing these difficult issues. It is helpful to have had time to think rather than be taken by surprise as and when they arise here.

Thank you sdmhred. I'm sure there is something in what you have suggested.