Inoperable bowel obstruction-along with other complications. Help!!!

[DaysLikeTheseWeLearnToLiveAgain]

Following on from a previous thread. My poor FIL now has his latest stay in hospital this time with a bowel obstruction. Due to his other health conditions

See previous post:- How long does he have? Kidney failure and Perforated Gallbladder www.mumsnet.com/Talk/general_health/4919652-how-long-does-he-have-kidney-failure-and-perforated-gallbladder

He has been told that he needs an op but he will not survive it. So unless his bowel clears this is the end of the road.

Now here lies the frustration he hasn't eaten anything since Tuesday (nearly a week ago). He's has a NG tube to help relieve the pressure on his bowel and is only allowed fluids. He's been given antibiotics and is very sleepy but no one is telling us how ‘the end’ is going to look cos there is a small chance this might clear.

We’ve had conflicting info as one consultant has said that he has had the DNR chat and wants us to be aware but there has been no chat yet about palliative care cos of the small chance it might go and another consultant today saying he might get home in a few days. The man is bed bound! maybe he means home to die but it wasn’t clear. Obviously we just want him comfortable and not in pain but we thought there would be talk of hospice.

This has been a long road lupus diagnosis, pulmonary embolisms (he’s currently off his warfarin) immune system deficiency, stage 4 kidney disease (might be in stage 5 now with all that’s been going on) a perforated gall bladder and now this.

Basically my long question is has anyone else gone through similar? Has a family member/ friend had a bowel obstruction that can’t be operated on? And if so what happened?

I know everyone is different and I hope we will get some answers soon (DH at the hospital again now) but the poor man just wants to go in peace.

If it comes to it one of us will go to the hospital and sit with him all day till the consultant comes round cos so far we haven’t been able to speak for them for an update.

Any similar situations and experiences appreciated. Sorry this was long.

Not the same backstory, but my mother had cancer and went in to a hospice after a sharp decline. We were told she had obstructions in her bowel. She died about 4 days later. They said there was a small chance it could clear and if it didn't it was the end. Then the next day they started to talk more about keeping her comfortable etc.

Thank you @headcheffer I think it's only a matter of time that they will do the same in this instance.

I hope for his sake it's soon. He desperately doesn't want to die in hospital and I hope we can sort that for him.

It's day 6 of being in hospital and nearly 7 since he last ate and we thought we might of heard more about palliative care by now.

Appreciate your reply and sorry for your loss.

Ask for the hospital palliative care team to see him ASAP.

It sounds as if the hospital aren't communicating with you clearly and FIL would like to go home for end of life care.

I have seen people go home with bowel obstruction for end of life care and it resolve but they are generally very unwell anyway and so life is limited - it sounds as if FIL would rather be at home in any circumstances.

It's unlikely the surgeons know how to facilitate him going home in these circumstances and he will need a lot of support from the community specialist palliative care team at home - so the sooner you see the hospital based team the better.

My Mum had a bowel obstruction that was declared inoperable early in a February. The obstruction was cancer and the operation inserted a stoma, but nothing more. The cancer had also spread to her liver. She never regained much appetite.

There was a possibility of palliative chemo but by the time it was offered she was too weak.

She died after a very fast downhill turn at the end of May. No one, including her medics, expected this timeframe although it was known to be terminal.

There are a lot of things here that were personal to her struggle and so this is unlikely to be of any indication of your relatives prognosis.

I'm sorry you are going though this xx

Dad had cancer that caused his obstruction. After a day on nil by mouth they told us it wasn't going to clear and put him on a syringe driver. He basically just faded away over the course of a week. We did have the palliative team come to see him and to oversee pain meds etc.

I agree, please ask for a referral to the hospital palliative care team…you may get more support/advice than you are getting at the moment. It sounds like they are still treating him actively so they may not agree it’s needed but sometimes the palliative care team are better at sorting out complex situations where prognosis is difficult.

That you all so much. This is all really helpful.

I'm so sorry to hear this. How is your FIL now? I hope you managed to get the palliative care team to see him

@LeakyPipes thank you. Today is d day as far as we are concerned. I'm going to go after work if we haven't heard from the doc and insist that we speak to the palliative care team. I've already got the contact details for them too and am probably going to ring them on my way to work for advice and a heads up on his situation.

It's absolutely heartbreaking effectively watching him starve to death.

I feel for them all so much. We watched DH mum go through so much this time 6 years ago dying from MND, it's a lot. I'm glad we have each other and Mumsnet for the helpful guidance. It's just so weird to be in the this limbo land.

We will get there though. We are thankful that he isn't in too much pain at least. Just want him in a more comfortable, dignified place for what looks like the end.

@LeakyPipes ooh and he is still very sleepy but quite with it really. It's incredible what he has gone through and is still here. Doctors have said he is a medical anomaly 🤷‍♀️

Update:-

I don’t know where to start. We are so tired, angry and sad.

It’s now 3 and half weeks since my FIL has been admitted.

They have tried everything non surgically and now last Thursday said that they have no option but to do bowel surgery and he is unlikely to survive but if they don’t do it he will die a very painful death.

We were told to say our goodbyes and that surgery would be Tuesday this week. This got cancelled due to an infection. He was then told it would be yesterday but again got cancelled cos this time he has a chest infection.

We asked the palliative team to get involved for advice and they informed us after speaking to one of his 4 doctors that we are not at that point yet.

Now, we’ve been told that even if he survived the surgery he doesn’t have long because of his kidneys and dialysis isn’t an option cos his kidneys will just give out. He hasn’t eaten or is now not drinking and is completely out of it. They have inserted a PICC line but that’s it. We’re at a compete loss.

To add to this one doctor keeps contradicting the anaesthesiologist and saying he could get home!! In what world is this poor man ever getting home. He keeps clinging onto this and is expecting a miracle.

I guess it boils down to the fact that they just don’t know 100% anything!

We’ve now been told the operation won’t be until after Christmas maybe Wednesday but we’re aren’t holding our breath that a) he makes it to Wed and b) it happens at all.

Now, i want to point out that he isn’t in too much pain so I guess that’s something it could be so much worse. He is completely done in and wants it over.

He has lost 2 stone and is so weak. It’s an awful situation and horrific to watch him effectively starve to death in front of us.

I don’t think there is anything anyone can say really I’m just venting and hoping my mood changes soon for my DC sake. Just can’t stop crying. I feel for him so much. This is no way to die.

FFS, the surgeons need to get the palliative team back now!

I manage a lot of people dying from bowel obstruction and while it isn't nice, it is not 'a very painful death'.

And given that he is in bowel obstruction now and not in a huge amount of pain, it is very unlikely his death will be different.

I am so sorry he and your family are going through this, this level of surgical idiocy used to be common but I haven't seen it for a while.

Oh my goodness the poor man. No surgery! Let him pass peacefully

@AnnaMagnani totally agree. We had a call from the palliative care team and it was so uncomfortable we were almost made to feel like we were jumping the gun massively.

We're so angry one doc saying you might get home, you might get dialysis and the anaesthesiologist saying it's completely off the table.

Now my FIL clings to any hope and is consenting to the surgery in a very misguided attempt to get home. We've tried talking to him but he is having none of it. His choice and we respect that but we know he is making the decision based on a stupid thought that he might get home!

He is under no illusion that he is probably going to die so it is informed I guess.

This waiting for something to happen is utterly excruciating.

So sorry to hear this.

I’d caution against the idea of “at home” being necessarily peaceful, though. My FIL (in his 90s) was sent home from A&E with an acutely obstructed bowel, not due to cancer, and no palliative care in place. He experienced copious faecal vomiting, to his great distress and that of my MIL, and died of aspiration pneumonia.

I do hope your FIL’s team can arrange a suitable plan of care so that the time your FIL has left is as peaceful as possible. Best wishes to you all.

Thank you @HeartofHerts. Yes at home is definitely off the table (the doctor who keeps saying this is insane) the only way that will happen is if he has a miraculous recovery from surgery and goes home to die from kidney failure effectively as long as he is able.

Much more likely is a sad but peaceful passing in hospital (which is exactly what he didn't want) instead of this euthanasia via surgery approach!

Ideally we would hope that he could go to a hospice now but we don't think they have the medical facilities to support what he needs. His NG tube is still in place (they have tried removing it bit he just aspirates (so yes he would die the same way as your GF), he is completely bed bound and has a catheter. We could be wrong though.

My poor DH has been through so much with his DM dying of MND a few years ago and dare I say this but this is almost worse in some ways.

This too shall pass as they say I just hope it will be done as humanly as possible but I fear no one will be swayed especially my FIL and we have to respect that as hard as that might be.

Sorry @HeartofHerts your FIL I mean.

This is just awful, and such a representative picture of all that is broken in our healthcare.
This elderly man with complex life limiting medical conditions develops a life ending condition and instead of a swift decision to allow this to be nature taking it's course and moving him to a hospice to be cared for with dignity and compassion.....no....he's been in an acute hospital bed for 3+ weeks, with conflicting information/ ideas and a family who are no doubt by now exhausted too.

It beggars belief...and I fail to see how palliative care team can say your not at that point yet when he is being sent for surgery everyone knows will kill him.

OP...if you have the energy start shouting loudly...speak to PALS...email the medical director and CEO of the hospital. Call your MP...

Ask for a meeting with his named consultant, the one who holds clinical responsibility for your FIL.

It is true if your FIL has been deemed to have mental capacity he can consent to an operation even if it is unwise. But what his consultant ( important..not a junior on the team ) MUST have done is ensure your FIL has and understands ALL the risks...the stats of dying or surviving, what might happen as a consequence of operation..eg will be in itu, nursing home, etc.
This discussion should be clearly documented in his notes and the consultant MUST have explained the other options...eg do nothing , do nothing with palliative care, etc.
Saying " you'll die a painful death" is not giving the patient the information they need to make informed consent.

Look at the General Medical Council standards around consent and ask his doctors how the think they have followed it.

And lastly while as yet Martha's Law is not in place, you can ask for a second opinion...

Thank you @Theredjellybean yes we are completely broken. We were saying the same shows you how broken the system is.

The fact that he will (if he makes it to wed) have had to wait nearly two weeks for the op after they decided to it knowing he might die is a complete head f**k for all. Yes some of it was due to scheduling, infections etc but now cos of strikes and Christmas!

They are very adamant that they have had informed consent and said they will go through everything again before the surgery but we don't know exactly when they will do that so we can be there too (we will ask to be notified so we can be there but that hasn't happened in the past)

Thank you for your reply(s) everyone it is really truly appreciated.

A hospice would absolutely be able to manage this level of care, it's what they specialize in.

The issue is that the surgeons think they have informed consent for an operation that is not survivable, based on incorrect information given to your FIL 'you will die a painful death'.

Even though it is the weekend there will be a duty executive around, I think your only option is to kick up such a fuss that you insist that you speak to them.

@DaysLikeTheseWeLearnToLiveAgain i'm so sorry to hear this, sadly the palliative care team will have been led by what the surgical team are sayin . It's always been difficult for certain types of Dr to not want to think that death in itself is not a bad thing and that everything must be tried no matter how pointless when actually many of us know that a good death achieved in a way that allows for the person to say their goodbyes and pass without pain and fear is kinder. Unfortunately if their conversations with your FIL are leading him in the direction of surgery then its very difficult for family to do anything than support. Some people will always take every chance at survival they can, it's a very human trait. Sending big hugs to you all.

I am so sorry op, this is awful

I've had several severe bowel obstructions and don't have any of the complications your poor fil has, but thought I'd ask if they've tried giving him IV buscopan?

It's saved me from surgery each time. By slowing the bowel down, it gives it a chance to rest - when it obstructs it can go into overtime trying to clear it. It may not clear the obstruction in his case, but it might help with the pain and discomfort.

I don't think its always something doctors think to give as I had to ask for it the last couple of times, but it made a massive difference to the pain I was in.

I feel so much for you all x

@AnnaMagnani

We thought it would be too but have had mixed responses. When my MIL was in one for MND they seemed capable. I will look into it more.

We agree the information 'you will die a painful death' doesn't seem to be the case with him at all.

DH has just been to see FIL to go through things again and he has said that he doesn't want to wait and wants the op even if he could have a more respectful death 🤷‍♀️

I have a feeling we will loose this battle as FIL adamant. This is so bloody hard.

@wudubelieveit

Yes the palliative care team have definitely been (understandably) by what the surgical team are saying.

You are so right re your comments "that death in itself is not a bad thing and that a good death achieved in a way that allows for the person to say their goodbyes and pass without pain and fear is kinder".

Its a process and takes time but this way is so not the way we would of wanted it for him

As hard as this is we are coming to realise that FIL has gone from 'I'm done' to 'let's go for it and see what happens!'

No matter what we say if there is a slim chance of getting through this even if he can't go home afterwards he is determined to do it now and we will have to respect it.

I suppose I shouldn't be surprised he is a very determined man.

@StBrides

Thank you so much.

Yes they have tried it 3 times now with no joy. They believe the bowel might be bent or twisted (as well as food blocked) and his other organs are pushing up against the bowel. Hence why it hasn't worked and plus he can't tolerate the liquid and just brings it back up.