end of life medication

Mike's Mrs

Registered User
Jan 18, 2015
5
0
Hi All,
I read a lot on TP about end of life medications. What exactly are these? My mum is approaching end of life, we think, and lots of different meds have been mentioned but we're not entirely sure what they're all for... She currently has pain patches plus diazepam as well as her standard meds. We are concerned that she is in quite a bit of pain so may push for the morphine patch dosage to be increased. She's not eating or drinking much - certainly not enough to keep her going, we have been told. We are aware that increasing the meds could impact on her ability to eat and her appetite but we are looking at the bigger picture, which is her comfort and quality of life.
Any advice/info greatly appreciated.
MM
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
I know one medication for end of life is to dry fluids which collect in the lungs. It has a very complex name which I can`t remember. Another med may be Morphine if there is pain.
 

stanleypj

Registered User
Dec 8, 2011
10,712
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North West
Yes, thanks nitram. I have seen 'just in case' mentioned many times and never seen a clear explanation like this.

I think the suggestion that the term ‘Allow Natural Death’ (AND) may be used instead of ‘DNAR’' is interesting. It would still be necessary to have an agreed and clear explanation of what it would actually mean in practice.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
I think the suggestion that the term ‘Allow Natural Death’ (AND) may be used instead of ‘DNAR’' is interesting. It would still be necessary to have an agreed and clear explanation of what it would actually mean in practice.

I hope this wouldn`t include withholding pain relief which could possibly accelerate death.
 

nitram

Registered User
Apr 6, 2011
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Bury
I think the use of AND is more common in the US.

A DNAR only comes into force when the person has died.

An AND encompasses the last stages of EOL, it allows for palliative care which basically means throw a pall (cover) over the disease and withdraw all medication being taken to alleviate the disease.

Drugs are them introduced to control pain, assist breathing, prevent agitation, prevent nausea, as required.
 

Mike's Mrs

Registered User
Jan 18, 2015
5
0
end of like medication - thank you

Thank you all for your replies. They're very helpful. In particular the link re Just In Case meds.
Mum is on morphine patches, rectal diazepam, lorazepam and a myriad of other more "basic" day to day drugs at present. There has been talk of increasing the dose of the morphine patches to ease her discomfort. She's surviving on a few mouthfuls of food and sips of her drinks at the moment. As a family we have always agreed that mums comfort comes first. We have agreed with the NH that they can increase dosages of the drugs as they see fit - if this eventually results in mum being too sleepy to manage to eat/swallow then so be it. We just do not want her to be in any pain. The term "end of life" has been used frequently over the last couple of weeks and we have noticed a subtle change in the NH staff towards us. Almost as if they are gently preparing us for the worst. They are wonderful though. So caring with mum.
Thanks again. Sending love and support to all who need it.
MM x
 

nitram

Registered User
Apr 6, 2011
30,081
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Bury
The anticipatory drugs used in a syringe driver are all intermiscible are are administered subcutaneously, new mixtures can be made if conditions change.

This slow, continuous, administration is better than injections.

If one drug does not seem to be having the desired effect a 'breakthrough' dose can be injected and a new syringe containing a modified mix can be started.
 

Buffymama

Registered User
Jun 17, 2016
4
0
Can anyone offer some advice?

My mother is 89 and has been suffering from vascular dementia for over 10 years. She is in a care home as a residential client. She is still able to walk, sit in a chair and read her paper (or at least turn the pages ) however her speech is poor although she is very capable of communicating her likes, dislikes and any pain she is in and she is on thickened liquids and puréed food due to a weakened swallow now. No meds whatsoever.
Last Wednesday she was admitted to hospital with aspiration pneamonia late at night caused, we think, by vomiting in her sleep.
Since then she has been treated with antibiotics, oxygen and fluids but the hospital have made her nil by mouth due to the risk of further aspiration. It is now 8 days since she has eaten or had a drink. Mum has responded well to the treatment for pneamonia and is bright and communicating well but she is desperate for drink and food. We have been battling for days now to get the doctors to provide a solution to her nutritional needs. They won't feed her and we are only allowed to provide liquids 'at risk'. She will not tolerate a nasogastric tube as she pulls anything out, that she can reach...canulas have to go in her feet and her tolerance of oxygen masks is limited although she does understand when told she needs to leave these alone if she wants to get better.
we have been told today that there is nothing the hospital can do other than make her comfortable and pain free as she is now in end of life care.
How can this be the case for a woman who wants to eat and drink to the point where she is trying to eat the mouth sponges used to clean her mouth and is constantly asking for water. The doctors only ever see her when she is a sleep and see is constantly referred to as unresponsive and bedridden when in fact she is awake, upright and communicating with us for 6 hours plus every day and still reading her paper. The agency nurse caring for her today was horrified by the doctors conclusion and purposely wrote in her notes that mum was cooperative, responsive and able to follow instructions today.
We asked that she be considered for peg feeding but have been told she doesn't meet the criteria. I am under no illusion that the dementia will kill her eventually but how can can I live knowing my mother has effectively starved to death despite her alertness and constant want for food and drink. I am terrified her fluids will be withdrawn tomorrow and I am powerless to stop this. If mum is still fighting to stay alive how can this be acceptable?
So sorry for this diatribe but I'm at my wits end. We are now videoing her to prove she still has a way to go before she is ready to give up.
Is there an advocate or independent person who might review Mums case as it seems her family have little say in this decision and everyday without nutrition means she gets closer to a premature death?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Hello Buffymama

The doctors only ever see her when she is a sleep and see is constantly referred to as unresponsive and bedridden when in fact she is awake, upright and communicating with us for 6 hours plus every day and still reading her paper. The agency nurse caring for her today was horrified by the doctors conclusion and purposely wrote in her notes that mum was cooperative, responsive and able to follow instructions today.

Is there a possibility someone could take photos or a video of your mother in this state.
 

stanleypj

Registered User
Dec 8, 2011
10,712
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North West
This must be almost unbearable Buffymama. I hope you follow Grannie G's suggestion. You could also ask the agency nurse if she would put her observations in writing.

I was wondering if you have Lasting Power of Attorney (Health and Welfare) for your mum? I suppose you have the option of feeding her thickened and nutritious fluids at your own risk whilst you try to get your case across?
 

Buffymama

Registered User
Jun 17, 2016
4
0
It is so hard to deal with. My sister and I would fully respect Mum's decision to refuse food but watching Mum be deprived of adequate nutrition simply because has lost the physical ability to swallow safely is utterly heartbreaking. She still has a quality of life and laughs and smiles when we share family photos and videos with her and she is so desperate to eat and drink. When I suggested we explore the options for assisted feeding the doctor looked at me as if I had suggested I hang her out in the street to die.
I have seen some disturbing things going on with other patients since Mum was admitted. Whilst sitting with her late one night a lady in the same ward was crying out that she was cold and wanted more blankets, when then nurse came back on the ward I mentioned this to her and she just said to me that the lady had dementia?? I was cold that night and had borrowed a hospital blanket but it seemed that she was just a nuisance.
We are videoing Mum now at every opportunity and have got agreement that we can feed her at risk but this small amount she can deal with physically will not sustain life for long. Hospital staff won't feed her so she has nothing when we aren't there so we are taking it in turns to be with her but this is unsustainable as I will need to go back to work soon and my sister lives over 100 miles away.
Today she is up and reading magazines and eating and drinking small amounts without coughing.
We have power of attorney but we are told that the doctors decisions cannot be overridden regardless of our wishes.
We have no intention of prolonging mums life unnecessarily but we cannot deprive her of something she is asking for whilst she is still bright and alert. This seems totally inhuman and doesn't show respect or offer dignity in my view.
 

stanleypj

Registered User
Dec 8, 2011
10,712
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North West
Your attitude seems wholly reasonable to me.

You are not the first person to report on TP that medics appear to ignore your wishes despite the POA. I hope that you can somehow convince them that they are wrong.
 

Buffymama

Registered User
Jun 17, 2016
4
0
Thank you. It is so nice to have somewhere to share my feelings as there is no compassion or understanding from the doctors responsible for mum. They make me feel like I am being cruel and dillusional.
 

nitram

Registered User
Apr 6, 2011
30,081
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Bury
The H&W essentially puts you in the position of acting for the person in what you consider to be the person's best interests.

You say they will allow you to to feed her liquids at risk, are they also doing this, or are they totally handing over the responsibility to you?

There is obviously a higher risk of giving her small amounts of pureed food, are they prepared to allow you to formally take this risk if you say you are acting in accordance with what you consider would be her wishes?

You could ask for a 'best interests' meeting.
 

Dragonfly2014

Registered User
Jul 5, 2014
15
0
Buffymama, it sounds to me as though they are applying the now illegal 'Liverpool Pathway' (Google if you've not come across it).

I agree with others who have suggested taking videos. I realise this may sound OTT, but in your situation I'd consider approaching a solicitor and getting them to write a threatening letter.

It's no longer legal to starve/dehydrate people to death in this way.

Try to stay strong x