Hospice at home - expectations

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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?

OP the "being unable to swallow" is something they should be used to.

On reading your update, i'm even more horrified

Sorry to be indelicate but did you consider doing the suppository? I thought the thing about "hospice at home" was that you wouldn't get a nurse to do that and you'd have to do it yourself.

@AcornAutumn she’d been admitted with obstructed bowel a week earlier and had surgery. I wouldn’t have done anything without medical support tbh

My dad was in a hospice right at the end. I wasn't happy with the pain relief issues (or the handover from the hospital, when he had to give the hospice doctor a full medical history for over an hour - on the last day of his life! - because she said it was easier than her reading the notes). But the hospice nurses there were truly wonderful, like angels, and compared to the non existent support we'd had in the community, it was great that someone took over and took responsibility for his care.

However, they hospital palliative care team really pushed hospice at home. I'm not sure if this is a funding issue. I knew I couldn't provide the care dad required, but I had to be forceful to the point of aggressive to make them understand that dad couldn't go home. Hospice at home entailed 2 daily DN visits. Rest of care provided by family 24/7.

Candle "Hospice at home entailed 2 daily DN visits. Rest of care provided by family 24/7."

Yes. It's a complete misnomer designed to fool people, though
I don't think anyone is fooled.

This will be controversial but I would much rather money went to hospice care than a lot of the fancy shit they do.

The treatments dad was given in the last 3 weeks came to £15k that I know of. It was mum's decision to make but they admitted the treatment "working" had a best possible outcome of him being bedridden in a nursing home and taken into hospital for 2 x blood transfusions a week.

I asked if it was likely he would be able to sit up and watch TV, if the treatment worked. They said "it's unlikely but you never know".

I think they should have said "it's time for EOL". But I suppose they saw mum's desperation and wondered if she would sue?

I agree. Dad had stereotactic radiotherapy on his brain two weeks before he died. I don't know the cost of that but it sounded pretty cutting edge.

His bloods were already haywire by then, everything that should be low was high, and vice versa. I think he was already in kidney failure by then. I didn't pick this up (how could I?) but a medical professional should have. I was phoning the GP every day at this point, they even admitted they were out of their depth. I have never felt so helpless in my life.

My mum is in the final stage of dementia. I've had conversations with the GP about appropriate medical treatment should she become ill. Unfortunately the dementia is so severe now that nothing other than comfort will be considered. I have made my peace with this, and I'm glad the GP raised the issue.

As soon as the decision was made that my OH should not be sent to hospital for active treatment, an end-of-life care pack was delivered to the nursing home from the GP surgery - it contained sedation, pain relief, anti-nausea medication etc.

The nurses made decisions as to what he needed at any moment - and consulted me, as I was used to interpreting his needs - so he had a very peaceful death with his every need being dealt with promptly.

It was easier I guess because he was in a nursing home and there were qualified staff to make decisions about what was needed when; and able to administer it. I am so glad we did not let him go into hospital where it would have been busy with people calling out and rushed nurses. As it was, he was peacefully in his own lovely room with me by his side until very near the end (when I had gone to bed - the nursing home gave me a room so I could stay) - and all his family had been in and out throughout the process during the slow process.

During the two weeks he took to die, the nurses from the hospice were also on tap and visited regularly. His consultant came to be with us all one evening near the end and provided lots of information about what to expect, and reassurance that we had made the right decision to let him go in peace.

We were lucky - I cannot fault the care he received and the constant small acts of kindness to us his family.

I am sorry that your experience with your relative fell short of this. I guess this is because he was at home and there was no-one on tap to be responsive to his needs - and indeed your needs. I had spent many months trying to care for my OH at home, and I really do know how hard it is to be out on a limb trying to do your best but not having the skills, or, in my case, the strength. It may of course be that things were complicated by covid.

Reading your post makes me realise that we really were very lucky and that is a comfort to me - but I am so sorry that things did not go so well for your relative.

On the subject of counselling services, I did seek some help after his death, as the weight of responsibility of having to make the decision to not treat was weighing heavily, even though everyone told us it was the right decision. I was lucky to find a good counsellor who has helped me enormously. I have a friend who is a counsellor and I asked her for a recommendation - word of mouth is the best source.

Lots of different stories here but hospices and hospitals work in different ways all around the country. What works for one person won’t be another.

I’ve often gone to see a patient who’s family think they’re in pain and what’s clear is the families pain and distress, very much a part of my treatment plan as the patient’s pain.

Many people talk of death rattles, families find them very hard to hear and distressing but patients are much less bothered. Those who have rallied after these are often never bothered by them.

Tis "very much a part of my treatment plan as the patient’s pain."

What does this mean in practical terms please?

Firstly, I’m very sorry for your loss and the distressing manner in which it occurred, OP.

I’m an ex nurse. I spent a fair few years as a district nurse in a rural area and as such, managed and supported many patients and families through the death/end of life process. All I can say is that it must vary hugely by area as the team I worked within were very in the ball with pre-emptive care planning and provision of syringe drivers and locked palliative ‘just in case’ boxes containing drugs and equipment for patients we knew were going to need them imminently, especially useful in out of hours scenarios (which is always when these things seem to kick off). Drug stocks were closely monitored and managed. Very, very rarely were we caught out and thankfully that meant absolute minimal disruption or unnecessary suffering for our patients/their families. We worked closely with specialist palliative care teams, hospice at home and other MDTs. We were based out of the village surgery and had an excellent relationship with the GP’s, urgent prescribing, referrals and visits were dealt with swiftly. Unfortunately, just after I left, the team was amalgamated into a larger ‘hub’ scenario and moved from the GP practice. I wonder if the patients are still getting the consistency and quality of care they were getting? I sincerely hope so.

My own experience was 4 years ago. Hospice at home worked pretty well, GP's were very good. District nurses were a lifeline. Care at weekends was almost non existent. Both the hospital and the hospice didn't really call the end of days clues very well. I managed to get a place for my Mum in the (very well regarded) hospice the day before she died.

@Mischance your experience was my expectation

@TisTheSeasonToBe The info leaflet describes our local palliative team as looking after relative emotional needs recognising this is as important as those of the dying. I agree as I’m going to relive the experience for a long time.

We have read that the death rattle is only distressing to relatives. I’d sat listening to it for hours going mad, searching the net avidly and reading the same thing... and were therefore surprised when the nurse arrived and said it was distressing our relative. and am horrified that I didn’t fight more to get help earlier. That is one thing playing on my mind a lot.

For those nurses and palliative HCP on the thread can you explain why they wouldn’t give hyoscine when the rattle first started? We asked and were told it wasn’t a problem. 16 hours later I’d nearly gone insane and apparently it was then a problem. We’d not seen anyone in that time and again I wonder if we’d had hyoscine if this would have prevented that.

I'm really sorry for your loss and the ways you were all let down. You weren't expecting too much or being a nuisance. You were asking for things that should have been there.

My parent's death was horrific and traumatic. Not because we were ignorant of the dying process but because their suffering was prolonged needlessly.

Future generations will rightly judge us for the way we force people to die slow barbaric deaths, in pain and distress.

A pp commented on the "need" to delay using syringe drivers as long as possible because they can hasten death - in what way is withholding pain relief from a dying person in an effort to prolong their dying process ethical, unless they have explicitly requested you extend their suffering?

They are already dying, it does not need to be drawn out as long as possible so they can experience the greatest depths of pain and suffering possible to inflict.

Cruel, inhuman decisions like that led to my parent spending the end of their life absolutely distraught and begging to be allowed to die because of the utterly indescribable pain and trauma they were being subjected to.

None of us has recovered from witnessing it. I don't expect that we ever will. You can't recover from witnessing that.

I am so sorry for your loss red it sounds like some poor and late intervention. I work as a HCP in a hospital and regularly care for EOL patients.

I cannot say why the hyoscine was not given, it's often one of the first drugs prescribed as it dries the secretions that patients can no longer clear. My experience is that it does not cause the patient distress but is very upsetting for relatives which is usually the reason we give this.

Myself and my nursing team don't hesitate to give anticipatory meds but, it's often the doctors we find are more reluctant to admit the patient is dying. As an experienced nurse I find I can often predict when patient's are in their last hours - not always but subtle changes are there.

I believe the LCP and Shipman has had a huge impact on reluctance to use drugs. I have cared for many patient's who have had, peaceful deaths. It is a privilege to be with a person at the end of their life and the one thing we can do well is to give the correct drugs. Relatives care is also a vital component of EOL care and I find it really sad that you have been through this.

We have a great palliative care team and links to the hospice, this is not usual care please believe this.

@Isadora2007 well done you. Terminal care is truly rewarding, but the herd all tend to want to do midwifery or anything else but end of life.

Somehow, knowing you have helped and been kind and gentle to someone during their last days on earth really matters. It is sad to see some staff swabbing down an unconscious/semi conscious patient as if he is just a table in a cafe and they are waiters, chatting to one another across him. Hearing and touch may still be sending messages to him, up to the last moment.
From your post, it is obvious you will be ideal, and do a lot of good where it counts so much. Very best wishes for your future.

Rupert "Myself and my nursing team don't hesitate to give anticipatory meds but, it's often the doctors we find are more reluctant to admit the patient is dying"

Yes. When I started asking the docs to do certain things, the nurses were visibly relieved, as frankly they were going through a high level of distress themselves in dealing with him. They were wonderful but frankly they needed to be spared distress too.

One day one of them said to me "oh thank goodness you are here, your father is very upset". Dad was almost unconscious but the poor nurse kept bustling round saying "I've never seen him so upset". He was clearly very finely tuned to know what a patient needed. He was watching tiny muscle twitches and I'm sure he put in a word to help get the syringe driver.

He called dad "uncle". I don't really know why he did that, or if he does ot to other patients, but I think dad might have liked that.

As an ex district nurse of many years this is why I would never ever choose to die at home.
Hospices push community care due to lack of beds. Community staff often lack capacity to deliver as promised due to sheer workload.
Families often overestimate what availability and speed of help is available IMO.

20 "It is sad to see some staff swabbing down an unconscious/semi conscious patient as if he is just a table in a cafe and they are waiters, chatting to one another across him."

I didn't mind this. Maybe I'm weird. I did mind when one such person told me "you mustn't cry in front of him" but that's more because I objected to being told what to do!

It's a common myth that syringe drivers hasten death - they are used to control symptoms and don't make anything happen more quickly. Hospices are unfortunately bound by the number of beds they have and we can't care for everyone. But I think where I work we offer great support to the community teams. I'm sorry for anyone that has had a poor experience of end of life care

For everyone apologising about the EOL poor experiences it’s not your apology that is needed. But thank you.
This thread has made me realise my expectations were not unreasonable but nor am I alone in my experience which really saddens me. The concept of hospice at home is a good one IMO but obviously the experience is variable.

Everyone on this thread who works in palliative care has reassured me that they would have wanted a better experience for us. The nurse who was there at the end apologised for the experience and said it wasn’t what they would have wanted (and other stuff) so I know she did care and knew it hadn’t been managed well.

The thread has helped me understand more but also increased my frustration that EOL is not a priority or funded effectively. I’m interested that @Susiesue61 is saying syringe drivers don’t accelerate death because I was left with the impression that not using one earlier was to avoid that. Am now wondering why it wasn’t used!

@20mum thank you so much.
I am an older student and have already seen stuff going on that horrified me in terms of patient care... what you describe about patients tending to someone’s personal care like they’re cleaning a table? Disgusting. I was lucky to give last offices to a gentleman and we spoke to him respectfully and kindly as we washed and dressed him. If the nurse helping me had been rude or offhand about him I wouldn’t have been able to hold my tongue. So to be so disrespectful when someone isn’t dead is shocking.
Thank you to everyone sharing their experiences here. Inspirational for me.

EOL care is definitely a lottery.

I know “complaining” is probably not something you want to do, but if you think of it as writing a report of your and your loved one’s experiences it will be of value - they will review it and may use it to make sure other people don’t have the same experience as you.