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?

I posted this at 5am...hoping a bump today might produce a response.

I've not got direct but sorry to say, probably, from what I've heard

I battled to get dad into a hospice because the hospital docs woukdnt accept he was dying

Before he was admitted to the hospice, I battled to get a syringe driver for tranx and pain meds

My father was a doctor. From my knowledge, some of it is sheer luck who you get and some of it is fear of being sued.

I'm sorry. I know it's awful. The major issue, from my perspective, is the medical profession now refuse to accept mortality. It sounds flippant but that really does seem to be an issue.

Crikey I thought we were unlucky but seems not. Sorry you also had that experience. I am reading a book about palliative care and it’s nothing like our experience.

I feel so let down. Raised expectations and then a fight to be heard and a horrible death. I’ve had nightmares

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.

RedFrog, did they have cancer? My mother was referred to hospice at home after a discharge from hospital following cancer-related surgery. She had been in hospital for about 8 weeks by that stage, and had eaten virtually nothing during that time; she was on sips of fortisip / wet sponge to wash her mouth for a couple of weeks. Her eventual death was both horribly sudden but also excruciatingly drawn out. Essentially, I don't think that hospice staff are always able to tell. We were told that she wouldn't last the night, so we turned off the air mattress thing so she wouldn't have the noise and discomfort of it (she lasted more than a week after that). She had the syringe driver for days. Like you, we had issues with administering meds because she wasn't swallowing; I remember getting a fiendishly expensive private prescription for an anti sickness drug that disolved under the tongue (rather than the NHS formulation that has to be swallowed) - called scores of pharmacies to get it and in the end she didn't manage a dose.
I think what I'm trying to say is that you have to be extremely lucky to get that quiet / painless slipping away in your own bed surrounded by loving family ideal. Some people have a hard time coming into the world, some have a hard time leaving it. Hospice staff aren't magicians but I certainly felt that the district nurse was appallingly blunt / unsympathetic / inappropriate in her approach to nursing and dealing with the family. She ruined things for us, but my mother was still at home as she wanted to be and that was of course far more important than how we got on with someone I'll never see again.

OP how long ago did this happen?

I'm not blaming anyone but the whole experience of dad dying was much more problematic for me than the death.

I am sorry for your loss. But when people said that to me, I was in a weird place because the relief was immense.

That sounds awful, but I am saying it in case it helps you to hear someone else say it.

I must admit, I have a lot of sympathy for the nurses who are simply dealing with human traffic. But I have less sympathy for the doctors, of whom my father was one. I honestly think some of them gave too big an ego to say "this man is dying, but I can't explain why".

I don't need an explanation but dad used to say relatives would demand explanations and threaten to sue if a 90 year old died.

Our attitude to death needs to change but it seems to be getting worse.

Sorry if that was all waffle. Is there anything practical you need, can we sign post you to any advice for what happens next?

Hospice at home teams are incredibly stretched at the moment. Visiting restrictions mean more and more people are choosing to stay at home in their last few weeks - completely their right. It tends to be quite clear when someone is in their last few days of life but the period before- you'd very rarely be able to predict. The team should have kept in better communication with you to try and judge this.

I don't want to sound like I'm excusing them, you absolutely deserved professional support and care. I would consider contacting the teams and letting them know about your experience, how they can ensure people don't fall by the wayside again.

What after care do the hospice offer?

Have you had an after death meeting?

@10kstepsaroundthegardenthen

What after care do the hospice offer?

Have you had an after death meeting?

Is that a thing? I had no idea.

Our neighbour spent a good 10 days on the brink of death, beyond the bit where he had stopped drinking (long after he stopped eating). It was awful for his poor wife, purgatory. Each day I would see her pottering in the front garden just to get some fresh air.

On the other hand, my aunt deteriorated very quickly. We all knew the end was looming, but the event horizon went from weeks to hours in a very short space of time. It’s just not that easy to predict.

@AcornAutumn this book With the End in Mind which is part hospice and part palliative care delivered at home.

The author describes it all as something much more personal. I felt like a nuisance asking for them to come!

@EuroTrashed yes cancer and agree very hard to predict but we had done several weeks of a pattern of decline, no food, drinking, sleeping all the time then cheyne-stoking and rattling for 24 hrs so it came as no surprise to me. I think they could have spent more time in the last 7 days once all fluids stopped. Trying to hold off until the last few hours is cutting it fine.

I have felt it is comparable to childbirth and decided that lower expectations of the compassion and time availability of the staff would have made me better prepared. As it was we were promised a lot but it definitely failed to deliver.

Individual nurses varied in compassion but two stood out for seeming to actually care and one stood out because her behaviour was inexplicably off and uncaring

Death very recent and I have spoken to the manager of the service and been offered a formal complaint process. I’m not after that but I did want to try and understand where my expectations were wrong, if my understanding of what happened was wrong and where they failed. It comes down to one nurse who was really lacking in empathy, failed to give time, assess, communicate and that coloured the rest of my experience.

I’m as certain as I can be that they acknowledge there was a failure. Perhaps they just said it to get rid of me but I felt they explained the stuff outside of their control and accepted the negative feedback as deserved. We also discussed how I’d never wish to be complaining to a hospice. Who would! They are held in high esteem and are charities.

Staffing pressures and inability to accurately assess the time left contributed but I could understand and accept those - although I still think they didn’t give anywhere near enough time to assess what was going on.

I felt like I was watching a slow motion car crash and only I could see what was happening. When I tried to tell them they were not listening or believing me. My car crash happened about 7 days after I predicted. That’s still within their 14 day window of ‘end of life’ that they come in for. I felt aspects of it were very avoidable.

I also think if I’d known they are too busy to do this I’d have made different decisions.

They’ve offered a bereavement counselling service. I’m wary of well meaning and compassionate volunteers making things worse. Great to have empathetic experienced strangers to offload with but if they are a bit jaded and busy they might again fail me leaving me wosre off than if I’d not expected any help.

I’m sorry to hear this. I’m a student nurse and I think I’d like to work in palliative care when I qualify. I agree that the principles seem very positive (for death) and it does indeed have parallels with Birth plans...
what do you think would have made the key differences? Have you documented that and put it in writing to the hospice at home team? I wonder if that would be good for both you and them. I’m sorry I can’t be more helpful- but reading things like this make me feel more determined to qualify and be one of the nurses who makes a positive difference.

It’s hard when it affects you personally.
Most hospices usually offer a fab service but many have had to cut back or suspend their community work at the moment because of lack of funding. Hospices rely on donations and fundraising to maintain services; they are not part of the NHS usually. They haven’t been able to fund raise and have had to put limitations in place.
Add in that they too have suffered staffing crisis due to Coronavirus and the quality and quantity of what they can offer gets reduced.

I would suggest using the complaint process or asking for a call from a clinician to understand decision making and discuss the mismatch of your expectations and their delivery. Those grief counsellors are often well trained and professional volunteers or sometimes even paid. It might help to offload.

@Isadora2007 A key difference would be they’d listened and assessed a pattern of events. Reading the book I linked to earlier, she describes that pattern and although it took 7 days longer than I anticipated, the pattern was there. All the signs ...but I don’t feel I ever got the chance to talk to a nurse long enough or without being shut down. How long does cheyne stoking and death rattle normally last? I do think at this point they should have expected it to be imminent.

@CherryRoulade 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. The charity is absolved because there is no financial contracting of the service.

I’ve decided to accept the grief counselling offer but have low expectations and walk away quickly if it seems more harm than good. I hope it will help

Looking to the future it’s made me really wary of involvement with the hospice service in another bereavement. It really was badly managed and made the actual death much worse. I’d have not used them had I known what was going to happen. What other options are there though? District nursing team. I need someone who is qualified to administer EOL medication. I’d have paid for care if I’d known I needed to.

I am a retired nurse. When my uncle was completely my to the end of his life due to cancer ( he was 90) he told me that he wanted to die at home .
He knew that my daughter and I would care for him so I contacted his GP and the district nurses. His doctor arranged a DNR form and the district nurse arranged a hospital bed with air mattress. When the time came the nurse put him on a syringe driver with all the medication he needed in it and each day asked me what he was like so they could increase / decrease the dosage so that he was kept comfortable. On his last day I had a call from the McMillan nurse to offer their assistance which I declined as it was too little too late in my opinion, and there was nothing they could do . He died comfortably at home with me holding his hand . In my opinion McMillan nurses only give you someone to talk to , it's Marie Currie nurses who give practical help and may have been the assistance you needed.

@Ken1976 it sounds like you gave him a dignified death.

I don’t think we have either of those nurses in our area ...it’s a private hospice. Again the arrangements for managing care of the dying seem very piecemeal and variable based on geography and charity. I can’t imagine a scenario where midwifery was similarly managed with vague financial and governance arrangements. That would be a recipe for disaster.

Unfortunately it's not always the case that drs and nurses get the timing right - and if there's no space at the hospice they can't take them in. My experiences have been very positive of hospice care, hospital end of life and care homes (during covid too) but they don't always get it right. The syringe driver is very much the last days and can hasten the end so cannot be given too soon from my understanding

I would add that covid might have complicated things at the moment, trying to reduce hone visits , staff isolating etc

@movingonup20 I can imagine the responsibility of balancing relief of symptoms vs hastening death. I felt the need to evidence pain and suffering bar was set too high or maybe just they weren’t there to see it.

Vets have a saying better a day too early rather than an hour too late. I appreciate the legalities and ethics with humans are very different however we were days too late for relief of symptoms and support for family.

OP

I think you are very wise to be wary of counselling services.

In terms of options, I don't think we have any because we need the professionals to supply EOL drugs.

Re death rattle - dad's doctors wouldn't even admit he had it! I had patients on his ward saying "I'm sorry about your dad" and I actually said to them "no, I'm sorry - you shouldn't have to see or hear this" and kept drawing the curtains.

They watched respectfully like a funeral procession when he was moved but I bet there was a massive sigh of relief once we were out of earshot.

I am with the vets. An hour early would have been better for everyone.

All I can do is sympathise.

@MiddleAgedLurker

Yes this issue is so fraught. I think EOL decisions are very influenced by the Harold Shipman scandal, and all the debate around the Liverpool care pathway. I think it's swung too much in the opposite direction

Cross post

Yes, it has. From my experience with dad as a doctor, they always do this.

Many relatives complaining about drugged up elders. Now they won't give them the drugs.

National conference saying bipolar under diagnosed. Now they try to attach it to all mental health cases.