Lack of care for end of life.

[pineapplefizz]

Please excuse me as I am still unhappy off with the care we received. I will attempt to make this as short as possible. I might be out of order saying this because I'm still upset..

My step father was diagnosed with an advanced and invasive cancer back in March/April. Because of his age and the fact he had other comorbidities he was put straight onto palliative care (symptom management only).

Fast forward to the middleish/toward the end of August, he woke up one morning with his stomach HUGE. This wasn't normal, we called an ambulance and after some checks turned out he needed to be catheterised as he was urinating but not able to get rid of it all hence why his stomach was blown out.

From that moment we knew 'something' was happening with the cancer. We spoke to the oncologist who suggested we start involving hospice care, district nurses and adult social care.

My sister and myself were relentlessly on the phone trying to get the local hospice team to come out and access him. Eventually the did and they said, no, he didn't need hospice help.

We sorted for a bed to be brought in and put downstairs as he lost the strength to walk. We got a camera set up so I could monitor him through the night so my mother could sleep.

For a few weeks he was okay, he had lost interest in food and was really only picking. He was barely taking fluids either. We called the hospice team again, they came out, accessed and still thought he was 'okay' and didn't need hospice care.

By the middle of September he had lost a significant amount of weight. One night we needed the out of hours district nurses for him and they told us to call back in the morning, however trying to get through I was holding for THREE HOURS!! When I did finally get through they told me to contact the hospice, but they weren't yet involved in his care so the district nurses had to come out and help us. This happened a few times over the last weeks.

He continued to get weaker. 2 weeks ago the hospice finally realised that he was an incredibly sick man and agreed to take over his care. We were always under the impression that end of life care from the hospice was a lot longer than 2 weeks!

Wednesday last week he had been coughing A LOT. There was a lot of secretions in his throat that he hadn't got the strength to cough up properly so he was gurgling, wasn't nice at all. By now we had the 'just in case' meds here. Once again we called the district nurses out of hours as he needed help and we couldn't administer the 'just in case' meds to ease the secretions. I called at 9pm and they turned up at gone midnight. By this time my stepfather was getting quite agitated as he struggled to breathe when the coughing was really bad. They walked in at a moment when he had just stopped coughing and was resting so they refused him meds as they'd not heard what we had been hearing for hours. They told us to give him a lorazepam and 'hopefully' that will sort him out.

Unfortunately he never recovered from that. He became unconscious and sadly passed away at home on Saturday morning at 1.05am.

I found the whole experience of getting help an ordeal and mentally draining. Nothing was ever straight forward, whilst going through the trauma of having a dying parent, dealing with the stress of the lack of help has been exhausting. We call one person, then told to call someone else, then they'd tell us to call back who we initially called. Things that we needed for him to make life easier we had to fight for, constantly explaining how sick he was but then there was the hospice team who thought less than a month before his death that he wasn't that sick.

Maybe I'm in the wrong and this is normal and I'm merely venting as watching a parent take their last breath and die was pretty fucking horrendous especially since I'd been part of his every day care since diagnosis as I moved back in with them to help.

Anyone else had any experience with end of life care, was it similar, better, worse or AITA for expecting better care for my dying parent?

I don't know if this is normal now but this was our experience in 2019.
I mostly took my DH to the A&E when his temperature went up and we suspected the cancer meds compromised his immune system. Later, we made a lot of calls to 111 who sent out nurses, doctors and ambulances to administer pain relief. Usually there was a delay of 1-2 hours. Our local hospice took him in as a day patient a few weeks before he died. That meant he could come and go if he was well enough. When he wasn't well enough to come home, he stayed for about a week and they kept him pain free until the end.
It wasn't his first choice - he wanted to die at home - but it was the best choice for him and our family.
Having said that, it was still mentally draining and stressful. I watched him die. I still have flashbacks about that.
Maybe the care our loved one received could have been better. Maybe people could have been kinder. It doesn't take away from the fact that Cancer is a monster.
Counselling has helped me a lot but it's a process not a solution. I hope you're able to find peace.

I’m sorry you’ve had this experience

I had good help from district nurses, they helped with sorting carers twice a day and Marie curie

dr on call useless

the local hospice didn’t help at all, that has left a sour note, people constantly raising money but no help when needed

I'm so sorry that was your SD's experience @pineapplefizz.

End of life care is desperately difficult to access, which makes life worse for the loved ones as well as the dying. It's shit. I don't know what else to say.

I'm sorry for your loss. Strength and peace to you and your family.

OP Im so sorry, your post is so upsetting.

I came across an account on Instagram of a woman whose 4 year old died from brain cancer and similar to your post I’m in shock about how they were treated. In her case her young son spent his final hours without drugs he really needed.

It it wouldn’t upset you too much can you give feedback to the hospice team or other relevant body? That way there might be lessons learnt.

Unfortunately I had a very similar experience when my mum was diagnosed with cancer. We begged continuously for help and got absolutely f*ck all, my mum endured her last months in agony. I have never felt so let down .

You're not in the wrong, I've been in this situation TWICE (different illnesses so was unprepared for how bad it'd be both times) and we got NO help and I'm an anxiety ridden (and guilt-ridden) mess from it all. And we only had it for a few days, so I can't even imagine how you coped for so long. It's really a travesty the lack of palliative care in this country. How can they expect loved ones to care for people with such complex needs and no support?

To a certain extent I feel like I neglected my dad and grandmother, but we got put in absolutely impossible situations with family members who needed 24/7 care from experienced nurses and that should never have happened. We were literally expected to move them both every 4 hours when my dad was practically paralysed from cancer in his bones and my grandmother was weak from stopping eating and her body shutting down. I don't know how you can expect family to do that. Doctors and nurses had seen both my dad and grandmother at least twice a week but at no point did they say anything about hospice care or that we'd get nurses to help us. They're very hot on getting you hospital beds and commodes etc. but no actual help or support.

Both my nana and my dad had refused to go back into hospital because of bad experiences and this is the only reason I got put in that situation, out of thinking it was the selfless thing to do and that I could handle it because when you love someone that's what you do. I now know the reality of it and that they needed to be in hospital or hospice. They'd both basically been signed off to die at home because of such terrible experiences with the NHS but with zero support (or any advice on how bad it might get) being put in place. It's honestly traumatised me.

So sorry to hear about your SD and the stress of the situation.

Absolutely no blame whatsoever to you or your family as you were not to know, but I would never advise anyone to accept care for a relative who wants to die at home. Unless you can pay for private nurses 24/7 it is awful.

So true about hospice-we always used to support our local hospice and donate and yet when both my grandfather and dad needed hospice care they said they had no room?! I don't know what the criteria is for getting in because friends of my parents did end up being cared for there but it seems there are so few places. Maybe you have to go on a waiting list, which is pretty tough when you're terminal and don't know if you have weeks or months left.

@Reluctantnurse I think that's absolutely the kind of honesty people need. I remember a nurse told my grandmother she'd "never be able to manage him at home" about my grandad when he had lung cancer. It seemed so blunt at the time, and our natural reaction was "of course we'll look after him, we love him!" but now I SO appreciate her saying that, she was right. Being put in that position with that kind of responsibility is SO scary. I never want to have to deal with death again either-it took them 4 hours to come and certify my grandmother deceased and the guy on 111 was less than empathetic.

I’m sorry so many people had a bad experience at end of life. Ours was the opposite. I refused to allow mum to be taken to hospital because I wanted her to have a peaceful death at home with the family. We already had a hospital bed for her and carers coming in. The GP was informed by the ambulance service and immediately alerted the District Nurse team and the palliative care team and he sent a prescription to the local pharmacy for an End of Life package of drugs. We had nothing but love and support from these people - we no longer had to pay for the carers; they, and then subsequently the palliative team, sat with my mother at night so we could get some sleep. If she needed drugs administered the district nurses came very quickly and the GP was with us within minutes to sign the death certificate. I’m sharing this so people can know that it is possible to have support and have a peaceful death at home. We were with my mother when she died and everyone was able to visit and sit with her the day before.

So sorry to read this. Similar experience here. GP was keen for us to have the 'Just in Case' meds at home but when they were needed, none of the nurses/call out medics knew how to use them! Apparently there were no instructions with them. Hospice was also full and not even considered. I don't know why. We actually ended up with mum in hospital and she had brilliant care in there till the end. That was some consolation at least.

Sadly, this was our experience with FIL, the only difference being he was admitted to hospital for the last 36 hours where he was essentially neglected. A friend had a very similar experience.
It was absolutely awful and so far from what we'd been led to understand would happen.
As with many other services, I think a lot of it stems from funding pressures. When the nurses did visit in the 2 weeks FIL was at home and seriously ill before he was admitted, they did their best to be kind, caring and focus on him but they were harried and you could tell they had other things on their mind. It must be a very stressful job and to know you are so limited in what you can do as everyone needs you so desperately can only add to that stress. A PP mentioned donations to the local hospice - the whole fact that hospices primarily rely on fundraising is just extraordinary for such a crucial service. Ours has had to cut back on staff recently as they're just not able to raise as much as they did recently.

The funding for my local hospice has declined dramatically, but the need for its services has increased. Hospices rely on donations to provide a service. People stop donating, so services get cut.

I'm so sorry for your experience OP, it must have been truly awful to feel so alone at such a difficult time. I don't know much about NHS funded palliative care services or district nurses, but from a hospice perspective I can offer a little context behind why they may have felt so unhelpful.
Hospice finding has dropped dramatically over the past few years in real terms. Only around 20/30% of their funding comes from the NHS, the rest is through fundraising activities locally which is also in decline. Many hospices over the past 12 months have had to let large numbers of staff go as they can't afford to run like they did.
Most hospices have less than 20 inpatient beds and very small hospice at home teams (normally only enough for one or 2 teams working at a time). Sadly this means more than 3 out of 5 people requiring hospice care don't have access to it. It's awful that funding is so low and so many people have to do without the care that they deserve at end of life.

Those end of life drugs should always be left with a care plan and a MAR chart. For reference for anyone else always ask!

They are also only dated for a certain period. So need signing off regularly.

make sure an appropriate HCP comes to visit once fortnightly. Then when the time comes it’s an expected death and a lot less difficult to manage with 111.

I’m sorry you had this experience OP. It’s awful xx

We had a similar experience, although we did manage to get a place in a hospice for the final week. As people have said above hospice places are very scarce and where we live spaces are allocated via a decision board.

End of life care and support is terrible and not talked about enough.

That sounds awful OP. Our experience in September/October 2020 couldn't have been more different from yours.

When dad was discharged, the hospital's Rapid Response Team took over. They sorted the delivery of the hospital bed, talked us through what to expect and how the "just in case" meds worked. They visited dad 3 times a day always the same 2 people. They also sorted out the hospice-at-home for us and the transition between the end of the RRT's involvement and the start of the hospice team was so smooth. The hospice team were also amazing and very supportive.

When dad died (6 weeks after diagnosis and 3 days before the November lockdown), the hospice team arranged for all the equipment to be taken away so we wouldn't have to add that on to the list of people to contact.

The help and support we received from both the RRT and the hospice really did help us through a shitty time and it saddens me that not everyone is able to get this help.

@pineapplefizz I'm so sorry you had this experience. My mother was diagnosed with cancer at the end of August 2016. She spent the next 3 weeks in hospital, and then went home. When we brought her home it was with a care plan in place from the Community nurses. We had an initial visit where her care was discussed and the just in case bag provided. For the first week we just had a couple of visits, after that they were daily. We had overnight support from Marie Curie nurses and we had carers provided for washing etc after the first week, although she refused the care and we had to send them away which put all that side of her care onto my sister, who was a nurse. I am still so incredibly grateful to her for taking that on.

The Community nurses were wonderful. They came every day and we knew that we were able to call them, or the doctor on call, if we needed them. Mum only had 3 weeks at home before she died and it was extremely difficult, but we did receive a lot of help.

My MIL also died at home from cancer the year after. There was much less help, but she needed less. We still had support from the Community nursing team (different area) and in her last couple of days when she needed more pain relief we called them and they came out nearly immediately.

In both cases we had equipment supplied to us. Commodes, walkers etc., and in my mother's case a hospital bed.

End of life care in this country is awful. Over the last couple of years I’ve lost both my dad and my nan. Both died in hospital with very little privacy or dignity. We were told my nan had less than 24 hours but she was still with us five days later having had nothing to eat or drink in that time. Not even a drip to keep her hydrated.

By contrast, my elderly dog was out to sleep peacefully at the vet, no pain and no stress, surrounded by everyone who loved him.

I’m sorry for your loss 💐

My experience was awful as well. Some healthcare staff were wonderful but in the final few days when I called for help I really had to push for help. The one time I called overnight because she had been making weird noises they asked questions I simply couldn't answer, never having seen an elderly person die before. And when she died about 24 hours later the doctors and home visit group (who had been seeing her regularly) told me to call an ambulance. I felt utterly let down.

Thank you for all your replies and I am deeply saddened that others have had the same experience.

We were considering for my SD to go into hospice but obviously when we asked there was no room for him, but mum had changed her mind by the time they got back to us and wanted him to stay home.

The hospice called on Friday when he was actively dying (colour changed, mottled skin, clammy, rapid breathing) and said they'd start coming in on Monday. It was all in my opinion too little, too late.

Thank God, he only twice complained about pain and that's 2 occasions we called out the DN, but they again were reluctant to give anything as the pain wasn't showing in his face.

The best thing about this is that we'd been having carers come in twice a day to get him up and to put him to bed and they were absolutely AMAZING. Literally the best carers we could have hoped for, but sadly they weren't medically trained and that is where the issues were.

We thought at the beginning because he was put on palliative care immediately from the oncologist when he was diagnosed that assistance from the hospice would have been easier. 🤷🏻‍♀️

I'm so sorry to read this.

It sounds similar to our experiences when my dad was dying. Especially: We call one person, then told to call someone else, then they'd tell us to call back who we initially called. I mean that just completely sums it up.

We had an assigned palliative care nurse who was useless. After not having any contact with her for more than month when my dad became completely bed bound we asked to go into a hospice out of complete desperation. We were worried about how they would physically transport him there with him being unable to even sit up but we were told 'don't worry, that's for us to sort'. Obviously they sorted nothing and it took 3 hellish days and ineffective attempts with 4 ambulances to get him to the hospice.

We don't have an unusual house or anything, and my dad wasn't a heavy man (he was severely underweight). They were just completely unorganised and all 4 ambulances showed up without the piece of equipment needed to transport someone who was bed bound down stairs.

During those 3 days the ambulance service kept saying to us: you need to get the hospice out here to assess him and confirm he can stay in the hospice until he passes because it will be impossible to get him back in your house.

Hospice point blank refused to come out. They said we needed to get him physically to the hospice for them to confirm whether he was sick / close enough to death to stay there. We persevered with the ambulances and getting him to the hospice because we felt there was no other support being offered and we had no option.

Within 1 day of arriving (after 3 days to get him there), the hospice doctors said they didn't think he would die within 2 weeks so we needed to take him home. Me and my mam were absolutely hysterical.

The hospice then tried to force us to put my dad in a care home for his final weeks because no one wanted the hassle of getting him back into our house. Luckily we managed to fight it and got him home and the hospital bed moved downstairs in our house. He died within days of returning home so the hospice's assessment was incorrect anyway.

It made a horrific situation 100x worse and I'm sad to say if we got another terminal diagnosis in my family one of the first things I would be thinking is how I couldn't go through the liaising with the hospice and end of life services again. I think I could just about handle the grief and the caring but I don't think I could take that. It shouldn't be this way. It's unbelievable in a western country.

I’m sorry to hear about your (and everyone’s) incredibly distressing experience, losing a loved one is hard enough without this extra stress. I don’t wish to appear insensitive to your experience, however, I wanted to share my experience of our local hospice which was completely different.

We managed to get our mum into the local hospice after several hospital admissions, she was only there just over a week but she spent that week being cared for in the most loving and supported way. The nurses were so kind and compassionate to mum and us and she had a dignified and pain free death - something everyone is entitled to. What you describe is just cruel and I’m so sorry that those memories will stay with you.

Wishing you find some peace as you grieve - you did everything you could x

Oh OP I'm so sorry to read this. It sounds awful to go through such a dreadful time like this. I know nothing about end of life care but I'd hope this is far from normal.