End of life / hospice care experience / advice

[WhoSaidWhat123]

Hi,

Does anyone have any experience of a close relative who received end of life care / hospice care?

Backstory - my Grandad was found to have a tumour in his throat. Unable to operate so he was given 2 weeks of daily radiotherapy to try and make him a bit more comfortable.

Anyway, my Mum has fought with his GP for pain medication, they gave him co-codamol
tablets (even though she told them he couldn’t swallow much). Then they prescribed soluble co-codamol.
My Mum has fought them for nutritional supplements as he isn’t eating and there’s been some issues there by the GP practice.

He has been collapsing and is basically skin and bones now, when my Mum asked for a GP appointment they told her to bring him in, she explained he isn’t well at all. I think a GP
is now scheduled to go there tomorrow or Wednesday.

What I am confused about is, I thought when someone is at the end of life stage, shouldn’t there be a care plan in place? Aren’t community nursers going around to see such patients and providing medication and advice etc. so that the person is able to die at home with dignity? Since the hospitals are also overstretched, you would think if someone is happy to go at home, then the support is there so they don’t suffer?! And I mean support as in the appropriate medication and advice?

Any help or info would be appreciated? Just so I have some knowledge before I try and help my Mum with sorting things out for my Grandad.

A little update- my Grandad was in a lot of pain very late last night so my Mum called 111. When the GP called back he asked what palliative care arrangements he had, my Mum said none. The GP was a little surprised and apologised and said he would email the practice for them to arrange palliative care and a syringe driver etc. My Grandad was settled after a Tamazepam (which he has had prescribed for several years) so my Mum said she didn’t need a visit off a GP or nurse over night.

We will still call the practice this morning to make sure they will get on it asap as he has been in pain again since 5am.

Gp and community palliative care team should both be able to help and refer to district nurses as needed.
He should have a conversation about what his wishes are, where he wants to be cared for and if CPR is not appropriate/ not what he would want (sounds as though this is likely the case) he should have a DNACPR form completed.
He should also be prescribed injectable drugs for common end of life symptoms so that these can be in the house if and when needed.
Also appropriate painkillers now whether that’s liquid morphine / patches / regular tablets if he can manage them.
Sending you all love and best wishes for the time ahead.

Should also be able to have a fast track referral for carers at home if needed. Specialist pall care team can do this or if there’s a social prescriber at your GP surgery ask them too. Marie Curie can often provide night sitters too. A DS1500 form will help him access the right benefits quickly.

oops sorry think it might be an SR1 form now that’s replaced DS1500. But still, should be able to access help on fast track rules

I hope things have moved on... your poor Grandpa. I hope you told them about the pain at night/early hours.

My dad died at home from Parkinsons related causes...he had carers and a good GP but things were still patchy. However when he was assigned to the palliative care team, they were just outstanding.
I hope your grandad gets the same x

If the GP doesn't refer, you can ring the District nurses to request urgent referral to palliative care team. Also the health board CHC / long term care team to request assessment for fast track CHC- often the palliative care nurses don't know much about this, although they should.

As pp said, worth also contacting the local hospice, in our area the palliative care team is sometimes overwhelmed/ not taking referrals and the hospice have their own community r
Team.

Finally, if you are still not getting anywhere- and and e if it deteriorates. And either McMillan or Maggie's if you have it, for advice and advocacy. adult social services do not have responsibility here but may help. I am an adult care social worker and also in Wales btw - the NHS here is terrible atm.

This is spectacularly shit - I’m so sorry. Nothing to add, but definitely check the GP is putting the palliative care referral through urgently. My mum had hospice care at home and while it wasn’t perfect, at least we knew she was getting the right painkillers etc.

Latest:

Practice GP called then yesterday at 11am telling them he would be there at 1-3pm. Said that Oramorph had been prescribed since the 1st, My mum told them that was the first she knew about that, GP said “oh did no one tell you”.

GP brought the Oramporph with him at 1.30pm. Asked what time does the District Nurses call round, “what district nurses” she said. He arranged them to come asap with a syringe driver. GP apologised and said they should and could have done better (I recall the same happening to my other Grandad in 2018 them apologising before he passed away!).

Grandad passed away at 7pm last night. My Mum only just told me which is a bit upsetting but I’m sure she’s been very upset. Especially the dare I say it, neglect, by GP practice.

Thank you all for your advice.

Sorry for your loss and for it being such a needlessly stressful experience 💐
Well done to you and your mum for fighting for him, your care shines through.

Sorry to hear about your grandad. Such a shame that his last days were made so stressful by a useless GP. When you feel ready, I'd put in a formal complaint to the GP practice and someone higher up.

Thank you. And that is definitely something we’re going to pursue. Once my Mum is ready I’ll go through all the call logs to the GP, all emails she’s been sending, and we‘ll ask for his medical records. This GP practice needs to finally learn and change their ways before it happens again.

Like I told my Mum, no one needs to suffer these days, there’s medication to make even the strongest of people comfortable. Unfortunately my Grandad suffered, but hopefully this will be a lesson learned to the practice.

This is not just on the GP. His oncology team should have ensured that he was linked up with the palliative care team.

May he rest in peace.

I am so sorry.

I would also agree this is an Oncology issue- while Palliative radiotherapy is tough it is supposed to buy you longer better quality time.

He either was not appropriate to have it or he didn't have appropriate follow up and support arranged.

So sorry for your loss OP. Thinking of you x

So sorry for your loss

Sorry for your loss, but it is good that he is out of pain.

He was seriously failed by all the services that exist and the failure of the right people to make referrals.

If you feel strong enough, there is a lot to be said for pursuing this, as it may in the long run benefit others. Pressing for proper protocols to be in place will be an asset to all.

So sorry to hear this. Assuming that the diagnosis was made during an admission, at the point of being discharged (or at the point when the oncologists decided no more curative treatment), the hospital should have involved the palliative care team - it is them that was negligent not to do that, the GP yes could have checked, but has to be able to assume that the hospital team vaguely do their job......

My mum died a decade ago. I fought so hard to represent her. POA, application for CHC. Turned down until it was too late. When a palliative nurse finally arrived she was so angry about the failure of care I burst into tears. She hugged me and assured me it wasn't my fault. It was all too late.

Then she set up a syringe driver and mum was pain free for the first time in weeks/months. She did warn me that it was a strong cocktail of drugs and mum would never regain consciousness. Of course she died soon after but at least she was at peace and family did not have to experience distress that cannot be soothed. If we are honest end of life 'care' is assisted dying when life becomes unbearable. I just wish we had assisted dying in the same way before continued living became unbearable for the patient.

I was going to complain but sunk into grief and trauma so never did.

So sorry for your loss.

His death has been referred to the coroner’s office without any complaint off of us. Which is good news, but so sad at the same time to know that he was definitely failed. It has been a catalogue of failings apparently. He should have been having hospice care and better pain relief weeks ago.

He died only 30 minutes after being on a syringe drives so just goes to show how “far gone” he was. Slightly angry at myself for not pushing sooner, but whenever I said to
him that he should be on Oramorph, he said he could handle the pain or that he wasn’t in any pain. Very sad indeed.

So sorry for your loss. Shame it took so long for some decent pain relief to be implemented.
May he rest in peace xxx

I'm sorry for your loss.