Do you know someone who went on to palliative care/end of life route and it was reversed?

[Missingt]

I’m asking because with a recent loss, it felt like a done deal, even when patient showed positive changes.

I'm so sorry for your loss. Yes, I have known this, but rarely.

I'm so sorry for your loss.

My experience has been the opposite - that health professionals try to prolong life as long as possible, even when that may not be what the patient wants or needs. Obviously individual cases may be different.

But I do think there is a very strong instinct when we are grieving to think of things that could have made a difference, whether that's what we or others could have done differently. And there is often enormous anger as part of grieving, and that often gets focused on the medical staff involved. It is so very hard to accept that our loved ones have gone, so our minds desperately search for explanations, when often it was just their time to go.

But if you want to say more about your worries about what happened, you might get more useful feedback.

I’m sorry you’ve been left feeling that more could have been done, and wasn’t. I haven’t any experience of exactly the same situation with the end of life pathway, but when my elderly Mum was in hospital ‘recovering’ from surgery to a broken hip, I remember vividly, thinking she would die if I didn’t get her out. I really felt like she’d been written off, and I could do a better job at nurturing her back to health myself.

Forgot to say - sometimes people rally just before they die, I believe it's a known phenomenon.

And also may be relevant, when my MIL went onto end of life hospice care, they did say it would be under review and sometimes people did get stronger and have to leave the hospice. So there wasn't any sense that it could only go one way.

MIL went back and forward a bit, but the inevitable trajectory was down. Even if she’d rallied at the end, the state she was coming back to was a horrible existence so it wouldn’t have been a good thing.

Sorry for your loss.

yes, a friend’s father. He was transferred from the hospital to the local hospice but rallied. He is now in a nursing home on oxygen.

@advent,would you mind sharing what happened?

@bishybarnybeeI know anger can be a part of grief, but in my case in this instance, I’m hoping hospital were right. I think EOL was taken too quickly without seeing what recovery after an accident looked like. When positive changes happened a few days into pathway, there was no assessment of what that meant. I think (or am worried) he was dehydrated to death. He was put on EOL pathway for an unsurvivable injury, but then started to communicate, was wanting water, moving body parts he’d been unable to in first few days before put on palliative care.

I have known that to happen but I have worked in an trauma and orthopaedic ward for a long time so I’ve seen many patients be made eol and rally and then get better, and also some that have passed away and completely surprised everyone.

In my own personal experience my mil was very ill post op and the decision was made to go for palliative care one evening. Next morning all had changed and she was no longer for palliative care. That month was a roller coaster of emotions.

my mum was terminally ill with cancer last year, she was admitted to a hospice when end of life looked imminent. The hospice explained on admittance that she may improve initially (as this was their experience), they explained this was due to increased care compared to hospital (meaning therapeutic ) increased pain relief , a more comfortable facility which is there to support end of life. She did improve for about 10 days, they were beginning to make noise about sending her home (respite was max three weeks) when she quickly decline and died about two weeks later.

OP I am very sorry for your loss.

I can come at this from both a professional and personal POV. I have been a Nurse for many years and cannot think of one time we have put a patient on palliative care when there were signs they could survive. I have, a fair few times, called relatives in only for a patient to rally for a while. We cannot know the information that those who treated your relative will have had at hand and the reasons behind their decisions but we always try and sustain life if possible.

Personally I also lost my Dad 3 years ago and have a clinical negligence claim against the NHS trust that 'cared' for him. The best thing I can advise you to do is contact the NHS Trust PALS team and raise all the questions you like. For me it opened an investigation into my Dads death by the patient safety team. It took months for the repost to be finalised and it was then that I read the breaches in his care. You will hopefully get the answers you are looking for from them.

I’ve worked as an HCA on a gastro ward for 4 years and can think of 5 people who ‘survived’ the EOL pathway. All were de compensated ALD and their liver rallied, they perked up a bit and the docs did bloods and resumed active treatment. At least three of them have since passed away on the ward, one lady after having been thought of as EOL three times before she died. However the liver is a very resilient organ hence this being able to happen.

You say they were asking for water, were they not allowed any? Our palliative nurses are very clear, nobody should be nil by mouth as they’re dying, even aspiration wouldn’t make them worse if they’re in the stage of actively dying.

I imagine although they rallied somewhat the treatment would have been uncomfortable and unsurvivably taxing on the body, especially if it was surgery or procedures which seems likely after an accident? I wonder if you can ask for a ‘debrief’ from the medical team, which might make you feel more comfortable

Sorry, I was just posting a quick reaction to your initial post and probably should have waited until I had more understanding of the specific circumstances. That sounds really tough and I get what you are saying about hoping they were right.

I'm not sure how old your loved one was but I can see it's very different when it's an accident rather than someone with a long standing terminal illness or extreme old age. @Sameshitedifferentdaze's suggestion about contacting PALs might be very helpful. Again, so sorry you are having to deal with this.

Sorry @Missingt , like @BishyBarnyBee I was posting quickly on reaction to your initial post. I'm afraid I can't remember any details, but having been a HCP for 20 years, yes very occasionally a patient rallied enough to be taken off the (back in the day) Liverpool care pathway. However, that doesn't mean that they necessarily survived to even leave hospital, it may have just meant they had a bit more time. I don't often get to follow up once patients leave my area.

I will echo PP's points that - dying patients often rally just before death, and

• it's really bloody hard to get medical teams (let alone families) to accept when patients are "dying", and often patients should be in EoL, which is much kinder, than undergo many intrusive and yet inevitably pointless medical procedures.

If it helps at all, dying patients often don't have an appetite and really don't need fluids in the same way.

Hopefully a palliative care specialist will be able to explain this better. PALS may be able to put you in contact with someone.

for you, and I am so sorry for your loss.

Ive seen plenty of patients have do not resuscitate orders rescinded but only a couple rally after being EOL. That's after 25 yrs nursing and like a PP it was with liver disease which can sometimes be managed or even reversed.
The OP said it was an unsurvivable injury though so it's impossible to judge wether that person responding positively actually translated to their actual medical condition improving.
I'm very sorry for your loss, OP. EOL decisions aren't made lightly though....