Hospice at home - expectations

[RedFrogsRule]

My close relative has just died. They were referred for hospice at home about 4 weeks before death. Stood down as they rallied. Continued deterioration but we struggled to get the team back in.

I never felt that we really met them properly. The two conversations I had were me questioning whether my relative was close because I felt they were but I wasn’t given this clue from anyone else and begging for some help. Relative had stopped eating 4 weeks previously and stopped drinking three days previously. (Saying this it seems fucking obvious they were dying but the nurses made me feel I was being premature) No meds were possible because they’d stopped eating and we’d requested pain relief and nausea meds. Eventually after what seemed like protracted negotiations over whether district nurse or hospice nurse should do it a syringe driver was put up and they died 12 hours later. I think it was uncomfortable and distressing.

Is this normal?

The death rattle was so loud. Started quietly about 17 hrs before death but after about 9 hrs of solo vigil of loud rattle I was feeling on the verge of a panic attack. (I don’t have panic attacks).

Reading other experiences of this makes me quite sad. I was hoping I was alone.

I have heard of death doulas and will probably investigate this if faced with the same but need a registered nurse to administer drugs.

I suffer from PTSD from watching my parents die at a young age from cancer..it wasnt peaceful, it wasnt a nice death for either of them and it was fucking traumatic. It's awful op and I'm sorry you had to to through that.

@RedFrogsRule

The death rattle was so loud. Started quietly about 17 hrs before death but after about 9 hrs of solo vigil of loud rattle I was feeling on the verge of a panic attack. (I don’t have panic attacks).

Reading other experiences of this makes me quite sad. I was hoping I was alone.

I have heard of death doulas and will probably investigate this if faced with the same but need a registered nurse to administer drugs.

You poor thing.

I got used to the death rattle, just as well as it was about 96 hours, but it probably seemed less loud in a hospital.

A previous poster said about some people not letting go easily and that's also a problem I think and not one medics can solve.

My best frien's aunt hung on for weeks after stopping drinking and she was on the LCP!

Are you comfortable saying which hospice?

@RedFrogsRule I'm finding this really tough to read and it's really bringing things back. You are probably helping yourself more than you realise by even getting these thoughts out and onto "paper". I am so sorry for your loss and how you are feeling xx

Does the NHS not have any financial arrangements with hospice at home? If so, from a governance point of view it’s a little bit odd. The NHS absolves themselves of any responsibility for end of life care because they expect the charity to pick it up for free.

That depends on the local commissioning arrangements. There is no 'NHS' centralised funding for end of life care. There is sometimes limited local funding but not always. There is a accountability for the quality of care but no requirement on anyone to provide hospice at home services. Some hospices are entirely inpatient based, some only offer community services, some have a mixture. Hospices provide a tiny amount of end of life care and the NHS doesn't absolve itself of responsibility - most trusts have an agreement with local hospices and most have specialist palliative care teams.

Unfortunately, many people do not understand what end of life is like and so things that are a normal part of a dying process are seen as poor care. I would still suggest a conversation with the hospice to understand the decision making and why things were done or not done.

@AcornAutumn

Was the book about care in a hospice? Everyone I know has the highest praise for hospice staff. I barely got to say hello to ours but they definitely exuded an air of loveliness.

Hospice at home doesn't really amount to much.

Untrue. Maybe the one you've had experience of. I've worked for two , one was 24/7 and they were both outstanding.

3rd

That's good to know

I wasn't criticising it but I was under the impression they can't do much, not like being in a hospice at all.

@Kittykat93 and @EuroTrashed I really apologise if I’ve made things worse for you. I searched and searched for other experiences like mine and found very few because I think we all have a belief it must not be talked about. I am torn between agreeing with that and thinking not talking about topics allows for problems to go unresolved. It is a really difficult topic and not one I’d like people to consider was inevitable.

@10kstepsaroundthegardenthen no I can’t name them it wouldn’t be fair because there are probably many dedicated caring staff involved and I just met one lacking in any empathy

@CherryRoulade I’ve already spoken with the hospice. Like you I suspect that normal parts of dying can be seen as poor care and I wanted to establish whether it was just my perspective. Sadly it would appear not. Communication was the main failure...had there been good communication, good care may have followed.

.I felt the need to evidence pain and suffering bar was set too high or maybe just they weren’t there to see it.

I think this too. My dad was in visible distress for 6 days at the end. Every time we asked about medication increase we were told they had to review the current level for 24 hours before prescribing more. It was a terrible time. I've tried to block it out.

don't apologise, you're not making it worse. It's almost a relief to hear. My own brother caused merry hell at the time (worrying about his inheritance / harrassing the medical staff etc etc) and a lot of my attention was going towards apologising for his behaviour and minimising the impact of it on my mother. I think it'll take a long time to process all of it, but I know that I really don't want to die of cancer.

@EuroTrashed my mum died of dementia- the main difference appears to be a complete lack of palliative care for that and determination to keep them alive and suffering as long as possible

Frankly it’s all made me decide to take positive action to secure a kind parting

OP "determination to keep them alive and suffering as long as possible sad "

That's my impression of treatment generally.

My uncle had a tiny little heart attack about a year ago now. He was all right after, quite cheery in hospital, then got put on several drugs.

After a year of almost bedridden, falling down when he tried not to be in bed, covered with rash, he got a couple of the doses reduced and that it was it. The drugs would keep him alive, they said.

He's 85 in April. I'm pleased to say he has finally realised this is all bullshit and is slowly scaling back the drugs. The rash is gone. His mobility is back. His joints aren"t swollen. All that for "just in case" drugs.

My mum refused a pacemaker a few years ago, the doctors were stunned.

I'm so sorry to hear of your experiences. My mum died of cancer at home in October 2020 (and I thank all the stars that it was before the pandemic, I can't imagine how it would have worked now).

I'd say yes to the experience of always playing catch-up with level of drugs & pain relief. Not because of blocking by GP but just that mum went downhill very fast. However, overall I'd say the support we got was good.

Over her last fortnight the district nurse visited at least once every day, they organised the syringe driver (maybe came in more than once a day once that was set up?). For the last 10 days roughly I think we also had carers coming in (organised by the GP surgery, I think they're council funded? or maybe NHS - we're in Wales & the social care arrangements are a bit different) initially 2x and then 3x a day who helped turn mum, wash her etc.

The 'hospice at home' service was from our local charity Paul Sartori, and they sent someone to be with mum overnight every night for the final 5 days I think, which meant dad & I could get some sleep.

As I understand it the other parts above (district nurse etc) weren't considered hospice at home, but were GP surgery provided.

Realistically where we are in a very rural area I think unless you don't have any other option people will stay at home, I don't think there's any actual hospice option & even hospital is a long way away.

Should say Paul Sartori also organised bed, commode etc - NHS would have provided but would have taken longer

@RedFrogsRule I work in a hospice and will happily answer any questions you have. We are generally charities but given some funding from the NHS. Where I am, the Gp is responsible for prescribing drugs, the district nurses administer them. We can offer advice via the community Macmillan team and also we do visits as hospice doctors, but we can only advise, not prescribe. I'm sorry it didn't work smoothly for you xx

Susie "also we do visits as hospice doctors, but we can only advise, not prescribe"

Have I understood this correctly - a hospice doctor can't prescribe?

Not in the community, we do in the hospice. We ask the GP for what we suggest, they are normally very helpful 😊

@Susiesue61

Not in the community, we do in the hospice. We ask the GP for what we suggest, they are normally very helpful 😊

Okay, thanks

Does seem like another step in the agony though.

yes - we ended up hiring a private GP who would do house visits & he could prescribe. It was a great luxury and worth every one of the many pounds it cost. She'd known the doc since he was 5 yrs old which made it hugely comforting too.

@EuroTrashed

yes - we ended up hiring a private GP who would do house visits & he could prescribe. It was a great luxury and worth every one of the many pounds it cost. She'd known the doc since he was 5 yrs old which made it hugely comforting too.

This is all very useful info

I thought only a hospice or hospital doc could give EOL meds. Can all GPs do this?

@Sadik that sounds like an amazing service

@Susiesue61 thank you. GP prescribed the just in case drugs and we then depended on DNs or hospice to administer. DNs said ask hospice for advice. So their perception was that hospice staff manage it.
Hospice staff didn’t respond to request for support (a lack of swallowing meant no pain relief was being given and other essential meds.) Feeling a bit helpless and anxious we chased several times. A nice lady who sounded stressed made me feel like I was being unreasonable/needy or a nuisance. I felt apologetic for being a nuisance but also like I was failing my relative for not getting any help. 6 days after calling them someone came and syringe driver was requested. A delay in actually getting it and meanwhile DN under pressure from me gave a dose of pain relief to tide us over. Further dose given when syringe driver arrived to tide us over until it worked. She died a matter of hours later in considerable distress. I felt like we fell between services and one nurse we had contact with was very unhelpful. Does this sound normal?

Not for our area, but they all differ. Where I am, we have an advice line that the district nurses can ring, the community team or hospice staff will answer that. Our hospice at home team do a sitting service but don't give drugs. So we expect the district nurses or GP to ask us for help, not the relatives

Aside of the fact that this is about something very painful it’s also fascinating.

(The professional and organisational boundaries around delivery of care along with unclear governance)

Early in my relative’s illness she needed a medical procedure at home from a nurse. We had a practice nurse attend to assess and give advice. But the district nurse had to come to do the procedure. I’m sure a few nurses are immediately thinking that not every nurse is qualified to do everything...the procedure was a suppository to relieve severe constipation? I was mind boggled at two health care professionals separately attending (both in PPE with the risk of transmission)

When I was pleading with the DN at the end for some medication to be administered she acknowledged “yes this is a regular problem” ....the fact that the hospice (reached on the phone) said ring the GP, the GP (if we ever got in touch) said ring the DN and the DN said ring the hospice. All phone lines continuously engaged....press 1 for, 2 for.....someone will ring you back (sometimes they did). It really was quite an amazing set up.

These sort of things at the time are frustrating but only with writing it down here is it highlighting it