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Original poster

DF end of life hospice trauma

50 replies

Blackisthecolour · 16/02/2022 21:34

My DDad is currently in a hospice for care after having cancer for a long time. He has declined rapidly since he was admitted 2 weeks ago and although he has better and worse days is very often in severe pain (the cancer has spread to his bones), is agitated, has swollen feet and lower legs, facial numbness and increasing periods of agitation and confusion. He is incredibly thin and frail after being a big man (in all senses) for his whole life. He often doesn't know where he is or why and wants to come home. He has incontinence problems so now has a catheter. He is often in so much distress that he literally doesn't know what to do with himself. He doesn't sleep through the night and is very restless, trying to get up to visit the toilet - despite the catheter. He's very emotional and cries constantly.

He has been very clear that he wants to be made more sleepy and comfortable but they have said they can't really do that, despite his agitation and wishes. He's now threatening to stop eating and drinking as it's the only way he can see of ending what undoubtedly feels like an absolute nightmare for him. We all know he's at the end of his life and it honestly does feel like we're prolonging his death at this point, not prolonging his life.

I honestly feel traumatised. He's only 60 and only has me and my DSis in his life to support him.

What do I do? Can I do anything? Has anyone been in a similar situation? I feel like I'm letting him down somehow.

OP posts:

lborgia · 17/02/2022 01:07

I'm sorry I can't continue to read all the posts as I find it a bit difficult, but I saw what you said about the doctor not having seeing such a high threshold...

He's just answered the problem himself! If he appears to have a very high threshold, then he needs more medicine! If he's on a standard amount of Haldol, and is still agitated, then giving him more is not going to be a bad thing. Is he not on a drip for fluids? Sorry if you've already mentioned.

Is it possible to get a case review of some sort?

Oh, and weird question, does your dad/ did your dad have red hair? There are genetic markers that mean some people need far higher doses of medicine for them to work. One of them is found in red heads.

Anyway, feel free to ask why, if he's got such a high threshold, they're not attempting to meet it.

At this stage it's comfort and pain control that is most important.

I'm so sorry, it's such a horrific situation to be in, and makes it even harder to question the clinical care.

Beseen22 · 17/02/2022 01:53

Is his analgesia being reviewed by a palliative care consultant? Seems odd that they haven't tried a different combination of meds or moved to a driver. Does he have any issues with his kidneys? I would be a wee bit concerned about the sporadic episodes of confusion as that could be a sign of opioid toxicity. Alternatively the unsettled nature could be a urine infection and hyperactive delirium, especially with some urinary symptoms and a new catheter. UTIs would potentially still be treated if it alleviated symptoms.

I have had a couple of patients in the past whose pain and agitation could not be managed but they were both very close to the end. I kind of feel like it was similar to the transitional phase of labour where the body knows something is about to happen but can't really cope with the enormity of it. One patient was incredibly unsettled, couldn't get comfortable then wasn't sure what he wanted to eat or drink or what to do with himself and then the very next day was non responsive and died a few days later. The other was not actively dying but was unwell and she just could not settle at all the whole day, up to the toilet then back to bed all day. We gave her a little bit of midazolam which let her get a sleep and she passed the following day.

I'm so sorry you are going through this, it must be so difficult to watch him so uncomfortable. I hope its not long for him now.

Stopsnowing · 17/02/2022 02:03

I know that in a hospital you could complain to PALS. Can you ask the hospice to give you their complaints policy and lodge a complaint? So it gets escalated and you are not fobbed off?

Grimupnoorth · 17/02/2022 02:11

Just adding support to what others have said. Exactly the same happened with my mum. Award winning hospice. Wouldnt change meds or try new combinations to get on top of her pain. If I knew that would have happened Id have slipped her more morphine at home. They even told her the pain was in her head and her final days were spent with her thinking it was all her fault because she was too confused to process what they meant.
Its so hard but also important to realise this is not your fault. Do not blame yourself for any of this.

Chichimcgee · 17/02/2022 02:19

That’s awful, my mum ended up with 3 drivers in hospice and they did everything they could, they were amazing. She wanted to be sleepy and comfortable and she ended up sleeping and not waking up. Dad was the same with carers at home. If they’re going to go, being asleep is the nicest way I think.

LottyD32 · 17/02/2022 07:58

@Blackisthecolour

Thankyou to everyone who responded.

They have said that they can't make him more sleepy because if they do he will be unable to eat or drink and they're unwilling to do that as it could hasten his death.

Should that matter at this point? Our focus is on his quality of life, not quantity. I just can't help but think we're getting this so wrong.

We are. We don't make animals suffer but people have to endure this.

Based on my own experience of watching a relative in a hospice.

LottyD32 · 17/02/2022 07:59

I'm sorry you are going through this op.

Roselilly36 · 17/02/2022 08:02

Handhold OP, it’s such an awful thing to be going through.

GETTINGLIKEMYMOTHER · 17/02/2022 10:47

@Blackisthecolour

Thankyou to everyone who responded.

They have said that they can't make him more sleepy because if they do he will be unable to eat or drink and they're unwilling to do that as it could hasten his death.

Should that matter at this point? Our focus is on his quality of life, not quantity. I just can't help but think we're getting this so wrong.

I’m so sorry you’re going through this, OP - your poor dad. I can’t believe they’ve said that they can’t make him comfortable because not eating and drinking will hasten his death.*

I thought the whole point of a hospice was to keep people comfortable and free from pain?

And what on earth does it matter, if his end is hastened a little, when he’s dying anyway?

Is there some religious factor at play here? (Only God can decree when, etc.).
Honestly, we treat animals so much better!

*I’d understood that people near their end often refuse food and drink anyway, because their organs are starting to shut down, and they can’t process them. This was certainly the case with an aunt of mine, who died about a week after starting to refuse them.

As some dr once put it, ‘They are not dying because they are not eating and drinking. They are not eating and drinking because they are dying.’

thereisonlyoneofme · 17/02/2022 11:26

Well I wish I hadnt read this. Its a situation I will be facing in the not too distant future. I hope the new Bill being prepared will stop this happening in the future .

Original poster

Blackisthecolour · 17/02/2022 11:40

Thanks all, I started today fully expecting him to have had another terrible and unsettled night but for some reason he did manage to sleep last night and as a result feels so much brighter today.

I haven't had chance to speak to a nurse about his medication yet so I don't know what they've given him or if they've adjusted anything but I will take a good night as a win at this stage and he ate his breakfast!!!!

OP posts:

Original poster

Blackisthecolour · 17/02/2022 11:42

I will try and speak to a Dr or nurse today (I think they were doing handover when I called so the nurse I spoke to couldn't update me) and find out what the plan for keeping him comfortable is.

To the PP who asked if he has red hair - no he doesn't. He was an alcoholic for many years though (now 25 years sober) so I'm not sure if he's just exceptionally good at metabolising drugs?

OP posts:

ghostmouse · 17/02/2022 11:55

I went through this with my husband last year in the hospice. He was in awful pain and he was on morphine in the end. They just made him as comfortable as they could and in the end just stopped eating and drinking.

Hugs, it’s a traumatic thing to go through,

wanttomarryamillionaire · 17/02/2022 12:18

We had this with my grandfather, although he was at home. GP prescribed heavy duty pain relief and sedation yet when he was really agitated and we called the hospice out to administer it, they refused saying he didn't need it! They did this at least 3 times until a relative who is a nursing sister took them outside and tore a strip off them. They eventually started administering the meds two days before he died. Why do they do this? It's not like the situation is going to get any better and if anything the meds may slightly hasten the end which is probably a blessed relief to the person suffering.

Hufflespuff · 17/02/2022 12:27

I sadly have too much experience of relatives in hospice care and I can't understand why they are refusing him medication/sedation that would make him comfortable. At this stage the only real goal is to ensure he is calm and pain free. It's understandable that he is disorientated and agitated, they shouldn't allow him to be distressed or in pain.

With all of my relatives there came a point where everything other than pain relief was withdrawn and they were basically in a highly sedated sleep for a few days until their bodies gave up. It was bloody awful to witness but better than seeing them in pain or upset.

You need to speak to a doctor and ask why they are refusing your dad medication that would make him more comfortable. Sending lots of love, 60 is no age. Lost my own dad at 55. Stay strong.

BlanketsBanned · 17/02/2022 12:31

I am surprised this happens in a hospice, I thought they were the experts in symptom and pain control. Maybe he needs different meds, I hope the doctor can make him more comfortable.

Dreamstate · 17/02/2022 18:31

Just so awful, why do we allow this to happen. We really need to start having some hard conversations about whether its worth prolonging life like this.

newbiename · 17/02/2022 18:43

Has he got a syringe driver ? It can have a combination of painkillers and sedation delivered 24 hours.

newbiename · 17/02/2022 18:45

@Blackisthecolour

Thankyou to everyone who responded.

They have said that they can't make him more sleepy because if they do he will be unable to eat or drink and they're unwilling to do that as it could hasten his death.

Should that matter at this point? Our focus is on his quality of life, not quantity. I just can't help but think we're getting this so wrong.

No. People often eat and drink less to nothing at the end of life. How close do they think he is ? This doesn't sound good.

TowandaForever · 17/02/2022 19:17

@lborgia

I'm sorry I can't continue to read all the posts as I find it a bit difficult, but I saw what you said about the doctor not having seeing such a high threshold...

Is it possible to get a case review of some sort?

Anyway, feel free to ask why, if he's got such a high threshold, they're not attempting to meet it.

At this stage it's comfort and pain control that is most important.

I'm so sorry, it's such a horrific situation to be in, and makes it even harder to question the clinical care.

I've never heard of this and I have red hair.

Why does this affect red heads?

TowandaForever · 17/02/2022 19:19

And @Blackisthecolour this sounds totally unacceptable and I hope it gets sorted soon.

lborgia · 18/02/2022 00:30

Hi @TowandaForever - yep, it's something to do with the gene that result in you having red hair also impacting on pain receptors.

I already knew this from a red-headed friend who works in theatres, but also more recently, from working for a pain management specialist.

General article about it

Interestingly, my friend had always found paracetamol etc didn't help her with pain relief, but didn't know there was a scientific explanation until she worked in anaesthesia.

However, I've just now read that since then they did that work, they think they link might be far weaker.. so who knows. Maybe it's a coincidence that she always needs etc anaesthetic at the dentist etc?!

TowandaForever · 19/02/2022 19:40

@lborgia thankyou for the link and info.

I'd heard red heads were 'bleeders' but didn't know about the pain.

Munchies123 · 19/02/2022 20:36

I'm so sorry you and your dad are going through this. I lost my mum last year, cancer had spread to her bones too. She was in pain, agitated and it was almost a relief when she did pass.
I just wanted to say you are most definitely not letting your dad down. The system is. You are with him and fighting his corner. You can do no more. Sending you love and strength

Unescorted · 19/02/2022 20:47

I am so sorry you are going through this. My dad passed away last week - he was also very agitated and in pain. He was only put on a syringe driver on his last day - although this was not his palliative care team's decision.

I have nothing useful to add but am here in solidarity. Take care xxx

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