Confused about end of life care

[KatyMac]

What exactly is end of life care in a dementia/nursing home?

We were told our elderly uncle with dementia was on end ofnlife care, bed bound refusing food

The GP made some arrangements (minimising meds) and we were told it would be weeks/months but the end was near

His main carer went away and we started getting falls notifications which we pointed out we shouldn't be getting if he was in bed with the rails up

I went in this week to find him dressed in the restaurant in a wheelchair, crying and demanding to be allowed to die

I didn't think they were going to persuade him to get up and try to get him to eat any more

That all sounds a bit confusing, do you have power of attorney for him so you can discuss his care with the carehome and the doctor. Who told you he was eol, bedbound and refusing food. Why are you getting falls notifications, do the xarehome ring you if he's had a fall.

I’ve had people climb over the rails and fall. We usually recommend a high/low bed so it’s ground level and no risk of falling

No the other staff (while his carer had just gone away) hadn't read the notes and were dressing him - when he had the fall

I am POA

I feel like saying that they seem to be back pedalling on eol (GP agreed weeks ago)

Im not wrong- its a bit odd

End of life care can last a while, it doesn't always mean the person is imminently expected to die, it means they are not for any active treatment or hospital unless something like a fracture and that they stop non essential medicines and have drugs prescribed for pain, agitation and sickness. If they are able and want to then they can eat and drink safe foods, if his careplan states he is to be nursed in bed then you can ask to go through his careplan with the manager. He should have a comprehensive careplan stating what care he needs and risk assessments which all the staff looking after him should read including the use of bedrails and a falls risk. Bedrails or cotsides are a form of restraint so need to be risk assessed and have consent signed by poa if he lacks capacity.

I’m an elderly nurse so maybe I can help a little.

it does sound like he’s palliative and maybe not actually close to end of life yet, although people can change suddenly. Regular medications are normally stopped and comfort medications prescribed to use IF needed. I feel like I should say yes a lot of people need them, but some people don’t at all, it all depends on symptoms.

In regards to bed rails, we’re not actually meant to use them if someone is high risk of falls which might sound a bit daft but the rationale is people with cognitive impairment can climb over them which places them at higher risk of injury. As a previous poster said, we tend to use beds that low to the floor so that if they do get up, they’re not falling from a higher height. Potentially his falls might be why they’re getting him up and sitting him out as it probably means there’s more footfall and people closer to assist if he does try nd get up unaided, lap means they can keep a closer eye on him.

It’s also not common to leave patients in bed and not attempt to give them food and drink, it certainly was under the Liverpool pathway which had its problems. We call it eating and drinking for quality of life so we still offer food and drink for comfort purposes. Without liquids and regular mouthcare, the oral cavity starts to deteriorate and cause a great deal of discomfort. Keeping them in bed also increases the risk of confusion, delirium and the risk of pressure damage which can also cause pain especially when someone is approaching the end of their life. People are nursed in bed fully really when their clinical situation deteriorates and they become more sleepy and drowsy. If you have PoA it would probably benefit to have a discussion with his gp to discuss what is expected and also with his care home

Yes ill go in for a chat,

All his meds were stopped apart from the non agitating one and I did agree to being confined to bed - he sits and crys all day, his catheter hurts when he moves and he was refusing to eat although he was OK with drinking

While his main carer was away they told me with great pride they had got him eating breakfast again, that they had persuaded him

I'll go in next week

Do go in, he sounds quite unhappy, his catheter shouldn't hurt if he has proper catheter care, you can ask does he need the catheter for medical reasons. He might still want to eat, it depends on what food is safe, what choice there is, dementia is very cruel and he may change each day. Wishing you all the best.

Thanks

He was only semi conscious a few weeks ago & now while awake is in such distress

I think he has prostate problems wrt the catheter along side diabetes, heart disease, parkinsons & the dementia and most probably undiagnosed autism - the super-clever social challenged type

If he was on lots of different medication for his diabetes, heart, pd and dementia they may well of made him very drowsy and unable to get out of bed, now these have been stopped he might be more alert and awake if that makes sense, he may also have been dehydrated or had an infection. Do make sure he is prescribed pain killers and essential meds like for his parkinsonism. I always find it easier if I write down a list of questions before I speak to the staff or the doctor.

Came here to say this
Bed rails are a risk