End of life

[macthecatsmum]

Hi-my darling mother-89, had leg amputated last year, very frail, bed bound is reaching the end of her life. she went into hospital two weeks ago with dehydration, uti, tremors, confusion. was ok for a day, then nausea, refusing food liquids. sent home even though this wasn't sorted, but thats another story. home 2 days and back in. I'm going in for a meeting with her doctor (or A doctor-who know)on monday. I'm unsure what this is going to be about-what is the difference between palliative care and liverpool pathway? I voiced my concerns to the nurse about her literally starving or dying of thirst-which to me sounds awful. She is coming home for 24 hour care.
I am accepting that this is the end, but want it dignified, peaceful and calm. Hs anyone had experience of similar?

So sorry you are going through this. Hope you get some answers from the doctor you speak to.

It is incredibly difficult in older people to identify when someone is dying or if they will recover with treatment. Sometimes, IME even when an infection is treated, a patient doesn't respond. It's also hard when someone is refusing food and fluid to know when it's because they are nearing the end of their life; in which case, giving IV fluids is futile because the body systems are shutting down and can't process food / fluid; or if 's due to illness making someone refuse.

Please don't worry about the liverpool care pathway - used properly, it's jsut about making sure a dying person is comfortable and pain free in the last days of life. If your mum comes home with 24hr care for palliation, then the aim will be comfort and dignity.

When you see the dr, make sure you ask what treatment they are giving your mum - it maybe that with the right treatment, she will improve and start eating / drinking again, an if that is the case, she will be given food and fluid as she wants. But question everything that you feel you need to, acting as your mum's advocate if she is unable to express her wishes.

The Liverpool Pathway is basically putting a different name to palliative care. Used well it's a wonderful thing and can help support a comfortable and dignified and to life. Sadly it's been given a lot of bad press for a few cases where it wasn't used properly.

When people reach the end of their lives they often stop getting the urge to eat or drink, it's a normal part of dying, rather than starving to death the body just stops 'needing' food.

Is your Mum having active treatment (antibiotics, blood tests etc) or just whatever is needed to keep her comfortable? You need to ask the Dr that, and assuming they do decide to go for end of life care ask that she is prescribed the necessary medication to treat any unpleasant symptoms and keep her comfortable. Medication is usually prescribed to be given if needed to treat pain, nausea, agitation and respiratory secretions. The Dr and nurses should answer all of your questions so ask anything and everything you feel you need to.

I'm a care of the elderly nurse and strongly feel that when it appears that someone is nearing the end of their life then any unpleasant treatment should be stopped and the person should simply be allowed to eat and drink whatever they want if they want to, and be given medication only to treat symptoms and keep them comfortable.

You poor thing, this is such a hard time. The LCP is essentially about recognising when a dying body can no longer perform certain functions, and stopping trying to force the body to do them as doing so can cause further suffering. So, withdrawing nutrition when the digestive system shuts down, as continuing to feed (eg tube-feeding) can lead to food sitting in the stomach then eventually being vomited back up and potentially inhaled. Continuing to give IV fluids can also cause suffering, as when the waste systems of the body begin to slow down and stop, this fluid can build up in the body, particularly in the lungs. Drugs are given to dry up secretions (saliva etc) as the body loses the ability to deal with them, and to lessen pain and the agitation that comes with the end of life.

The LCP has been demonised for political reasons by the gutter press, it is designed to lessen suffering and preserve dignity at the end of life, it is not designed in any way to hasten death and, if it's delivered by people who know what they're doing, can bring a great deal of comfort not only to the dying person but also to their loved ones. I've nursed a lot of people on the pathway, and I've instigated starting people on the pathway, and hand on heart if it was me coming to the end, I'd want to be nursed on the LCP.

Feather you explained that much better than me.

I agree that the LCP is what I would want for a loved one of mine in that situation. It can be very hard though to accept that someone you love very much is dying and that you aren't doing everything possible to stop it from happening.

Thank you all so much. This is my first time asking for advice on MN and you have all been fantastic. her carers have long experience of helping people through the process, so I'm happy with that. it just sounded a little...harsh. but reading all your contributions i feel much better. her bowel is massively impacted, so i would imagine if they can shift that she would be more comfortable before the move home. thank you all so much.

Hope your meeting went well and you get good support in the time ahead.xx