To wonder if there is confirmation bias when a patient is put on palliative care

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I get that putting a patient on end of life is not a light medical decision. However, recent events make me wonder if a patient showed positive signs of change after being put on palliative care, it’s called rallying/a reflex, yet those same changes a day or two before being diagnosed as end of life would be deemed as signs the body isn’t shutting down.

Do you mean end of life care? You can be on palliative care for years.

My wonderful MIL was put on end of life care. As part of that process all her medication was withdrawn. Within 24 hours she was a different person. It wasn't some miracle recovery where she was dancing round the room! She was old, frail and blind but she certainly wasn't dying. Her medication was adjusted, she went home and lived another 7 months of her normal until she sadly passed. She had joy during that time.

Wow. That's quite amazing really. And sad I guess that had she not have shown those symptoms as quickly that could have been end game.

@RuthWyes, EOL under palliative care team.

Do you mean end of life care? Palliative care is very different.

My mother was extremely frail and unwell, and then she had a small stroke. She was put on end of life care. But after a few days she rallied, and lived another two years (unfortunately for her, as she was very unwell and there was no pleasure left in her life). By the time she actually died, the end of life pack was out of date and the care home had to request a new one.

You will always get stories of people rallying, surviving for months etc but as someone who spent 15 years plus as a palliative care nurse (hospices and NHS hospital), end of life care pathways are so helpful when used correctly.

Problem is nurses/doctors are not always sufficiently knowledgeable about palliative care and sometimes make poor decisions. This could be someone being identified wrongly as being at the end of their life or, for example, incorrect prescribing of end of life medications, a lot of which is “off licence” owing to myths around some of the medications (addiction to opioids etc).

I’ve seen some people have extremely upsetting and drawn out deaths because of failures to accept a person was dying and I wouldn’t wish it on my worst enemy. A good death is the final act of care you can give to a person and there are no second chances.

Every situation is unique.

My DM would no doubt have chosen to stay alive hooked up to a drip nil by mouth with a colostomy bag and 2 kidney drains waiting for cancer to slowly take over her body —if by some miracle she could have had that choice. She was literally scared to death about dying.

The rallying was very brief before she was put on EOL but it didn’t change the fact her body was ruined beyond any possibility of survival, her suddenly conversing after days of continuous sleep was a cruel red herring not a sign of recovery. A few days later when she was put on EOL it still took 7 days connected to a driver being pumped with every sedative and pain relief drug we were legally able to give her before she passed.

I'm sorry but not sure what you're getting at???

How would it have been end game. End of life carr isn't killing patients off?

So if she was going to rally she would have done?

If not she would have passed away.

@ladybugheartthat’s lovely. What were the changes that prompted a reversal of EOL pathway?

That is not the case.

It is only because they had decided to withdraw all treatment that all her medications were stopped. If they had not stopped them she would have died. I don't recall the complexities of it but it was the combination of medications and some incorrectly prescribed medications that were killing her. She would never rallied if they had continued medicating her.

I think you're confusing the point i made.

Unless i misunderstood the point the poster i replied to was making.

You've said she would have passed away if she hadn't been put onto the end of life care pathway.

I assumed the poster i was replying to was saying she would have died if she hadn't come off the end of life pathway as quickly as she did.

Point I was making was that end of life pathway doesn't hasten death. They aren't giving medications to hasten their death.

Which your reply agrees with as you're saying she only survived because she was put on the pathway.

I think some of this can be a wish to delay grief too. My SIL simply could not see MIL as she was close to the end, it was like a form of denial. We were all looking at the same person and where she saw recovery potential the rest of the medical team and family members saw that MIL was at the end.

She, as one of the POAs, delayed palliative and EOL care for as long as she could because she was not able to see the situation as it was.

It was incredibly confusing speaking to SIL because whatever she was seeing at that time it was not what other people were seeing.

It is an incredibly hard time losing a parent and it is very understandable why someone might was to delay that understanding.

People are odd about death. On the one hand you get people actively campaigning for euthanasia and saying ‘you’d not leave a dog to suffer like this’ about elderly relatives with dementia. On the other hand people are in an outcry about EOL pathways and the possibility someone clearly very unwell might live a few weeks or months less than they otherwise would have done. I am never sure if there are two wholly opposed camps or if people change their minds when it’s someone close to them.

Death is very hard to predict accurately. That’s a known fact. Palliative care docs talk about ‘days to weeks’ or ‘weeks to short months’ or ‘months to a year’ but noone can really say more accurately than that until death is very close.

However what we are better at knowing is when someone is in a terminal decline in their last 1-2 years. For myself if at any point in that terminal decline I was placed on an EOL pathway erroneously or not I’d be happy to die. Because at that point noone is making a miraculous recovery to a great quality of life. More likely they might limp on frail, confused, in pain in and out of hospital. I don’t want that and very few people say they would for themselves but then they get the hump with Drs for going to EoL care.

My own view is that it is cruel to keep dragging a person in a terminal decline into hospital for IV antibiotics and fluids etc. Yes that particular episode might be treated but another one will be along in short order. I’m sorry but death is a cruel and very sad part of life.

I once worked on a ward specifically for people with very advanced dementia; unable to communicate or recognise their families, requiring all care, doubly incontinent and many immobile, frequently falling or needing feeding. They were cared for very well and with dignity by the staff but we could all see that it was no state to exist in. Most of the families could see that too and did not object to DNAR and not for escalation decisions. Some however continued to insist on their family member in that state being for resus and wanted IVs, oxygen etc etc. I never could understand that. We did what was medically in the persons best interests.

My lovely lovely mum who I adored died young of cancer. How I wish she could have had more good years to see her grandkids grow up but the last year of her life when the drugs stopped working was very hard and by then she was ready to go and if anyone had called it a bit early for EOL in that year then neither she nor her family would have resisted because her quality of life by then was not worthwhile being bedbound and in constant pain with other distressing symptoms like constant nausea. Although I would have (and still would) give anything for some more time with her this was outweighed by my desire not to see her suffer.

I’m struggling because it seems the same criteria that influenced the decision to put someone on comfort care following an incident weren’t re-assessed when those values changed. I was told there was a large range of what recovery could look like and there may be a decline before it improved. When the decline happened, he was put on comfort care. When significant improvements happened, he was kept on comfort care. I agreed to EOL pathway, syringe driver and withdrawal of fluids - we were told death was imminent. A couple of days later there were significant improvements which I believe if seen a few days earlier, before agreeing to EOL would have been seen as really positive. At the inquest there were no medical records, just a witness statement saying that scans showed it was always unsurvivable. The same scans that were used to justify active management and have conversations on what his new life might look like. When I asked about the inconsistencies and the logic, I was told to take it up with the hospital as though I was complaining about something really trivial and irrelevant. It is haunting.

So your struggle is that he might not have died at that time if he was not put on the EOL pathway?

Is this your father who fell and had a severe head injury and died? (I might be wrong I haven’t advanced searched or anything). If so then I guess the sudden nature of the deterioration would make it very hard to come to terms with. Maybe you can ask the hospital for some kind of debrief like they do with maternity cases? You would probably need to go via PALS.

I obviously don’t know the whole circumstances but if he had survived it seems as though it might have been to a very poor quality of life in an nursing home and you/ he might also have regretted that. I don’t think it can be helpful to you to ruminate over the details like this.

I would recommend bereavement counselling and/ or a discussion with PALS making it clear that what you want is to understand the decision making.

Yeah, it's not euthanasia. They don't literally kill the person off.

You are acting as if the end of life pathway is somehow leading to the end of life rather than simply recognising they've reached that point. IIRC it mainly seems to be not limiting the pain medications.

The occasional misdiagnosis anecdote even proves that rather than refutes it, there's no evidence that anyone on end of life care would have survived if they'd been treated differently. There will be a lot of people grateful it's in place.

I'm sorry of this has come from the rollercoaster of watching someone at the end of their life, there can be devastating moments of false hope when the stars align but the disappointment doesn't mean there is someone else to blame.

It’s a rollercoaster EOL, but not my first rodeo unfortunately. I’m questioning this one specifically, because unless you think all doctors are infallible, unless you are 100% certain that all guidance was followed, unless you are 100% that if the thing they say they’re placing a prognosis on that has t changed justifies active pathways AND palliative pathways but is not worth reconsidering when there are huge changes, there’s room for cock ups of the life and death variety. It’s not about looking for someone to blame - I would much prefer to feel a high level of confidence in the decisions made. It’s because every time I scratch a surface a million stinks come out.

Then you need to complain to PALS and/ or make a SAR for the notes. There is never 100% certainty in anything, no Dr would claim to be infallible especially not in life and death matters. I hope you can come to terms with it and find some peace over it.

Thank you. I’m still waiting for medical notes. I’m desperately hoping there’s something not raised yet that I can hang my hat on as a reason it was right decision, rather than the image I have of him thirsty and more cognisant than he’d been in there. I had a couple of questions. The little bits I’ve seen since then are discarding neurological decisions and seeing no meds available for seizures. It is awful. It is then saying patient x doesn’t meet criteria for x, y and z so we think it is now terminal even though terminal at that stage contravenes guidelines….and when patient x met criteria retrospectively saying terminal. Same scans.

I dont know if this is relevant. The below is writing in factual terms. I hope you can find some peace.

Dying isnt always predictable. There can be recognisable signs but they dont always occur.

When DFIL had a major stroke he was, after scans, put on an EOL pathway. This included withdrawal of fluids.

We were warned that it was possible that as he became dehydrated his brain would shrink and that he might for a short time seem as though he was recovering a little bit. The reality was that his brain was too damaged for survival.

My DM with advanced vascular dementia is now on palliative care. All her normal medicines for treating her chronic heart disease and kidney failure have been stopped. Again we were warned there might be a short 'honeymoon' period as those medications had side effects which would stop.

DM is not yet at the stage of active dying but I am hoping that isnt too far off. The person we now have isnt DM. She is bedbound, doubly incontinent, isnt really aware of visitors even less who they are. She will sometimes speak but these are just meaningless fragments of sentences.

During the dying process there are periods of lucidity that can confuse us. One minute they are unconscious and seemingly at the end of life, a few hours later they are sitting up having a conversation. A few hours later they pass away.

It can be distressing for family because you’ve often had the difficult conversation, accepted that nothing more can be done and agreed to a plan.

I think that you have to ask yourself whether it would have been kind to ask the staff to step in and reverse those decisions. Would the extra hours, days or week been quality of life or just quantity.

I think that when everything that can be done has been done and maybe the dying person has understood and reconciled that they haven’t much time is left they can relax and stop trying. Maybe not expending valuable energy on hanging on gives them a brief period of time when that energy is rerouted into just living rather than surviving. The pain experienced by the dying is exhausting, once they start administering the good stuff they are no longer fighting to deal with the pain, can relax and enjoy a bit of a comeback.

We saw this with my DSis, she fought hard against her cancer but it was like she had been given permission to give up. She then enjoyed a few days of sort of normality before the cancer overwhelmed her. We had been through the same with my DM 30yrs before hand. The difference was the approach to EOL. It was pre Harold Shipman so good pain relief ( morphine pump) was started much earlier so she was much more comfortable and wasn’t consumed by poorly controlled pain. She gently faded away over 4-5 days. With my Dsis they were not able to start the morphine pump until about 24hrs before she died which meant that she often had to wait for oral meds to kick in and when they gave sub cutaneous morphine ( or equivalent) there was often a delay due to drug protocols or the staff dealing with another patient.

I would say that modern EOL is more distressing for all involved. I am a big supporter of assisted dying because I really don’t want my DS to go through what we did. It isn’t euthanasia but the option to speed up the inevitable. Unless you have experienced EOL currently with a patient who has end stage cancer then you will not understand. If I can push a button when I’ve had enough and can no longer manage the pain I would do.

If the criteria were for neurosurgery then I have very rarely seen any elderly person with a brain bleed have surgery. It’s not just about scans but also about the persons overall fitness, other conditions, meds they might be on etc. In any case it is often not very successful and still leaves the person very disabled with a poor quality of life. I think the latter point is the most important. Would he have wanted to survive to a life of dependency in a care home? Or with major memory/ personality change? I worry that just getting the notes will not improve things for you and that you need more of an interpretation of the decision making. I think you’ll need to make a complaint via PALS to get that. Then a different Dr in the relevant specialty will do the investigation and they will write to you with the reasoning. You might even be able to ask for a meeting.