PLEASE DO NOT REPLY TO THE OP'S QUESTIONS-We will leave this thread up to allow posters to offer their condolences if they wish

[debbiedesperado]

My mum is 80 and has chronic COPD. She has had no quality of life for the past 18 months and has been in and out of hospital frequently. Yesterday she was in a lot of pain in her leg, it was totally paper white when I looked and she couldn't move her toes or feel her leg. Up to a and e we went.

She has a blood clot in her leg. They said for a healthy person they would operate straight away however she wouldn't survive the operation. They put her on morphine, antibiotics and a drug to try and dissolve the clot.

The doctor and surgeon this morning said that nothing is working and at this stage they would want to amputate the leg but she won't survive the surgery so basically there is nothing they can do.

My mum knows what is going on and is quite calm about it although she is still in some pain and hasn't eaten. Palliative care is starting tomorrow.

I feel really overwhelmed and numb, her leg is turning black. What can I expect from here? It seems they are just waiting for sepsis to set in and this sounds like an extremely painful death.

What should I expect from here? Does anyone know a timeline that I can expect deterioration? I am trying to prepare myself but also thinking surely there must be SOMETHING they can do? It doesn't seem right to just let her lie there with a black leg and let sepsis set in.

Sorry for this op.
my mum has copd and is 84. I think each case is different as mum had breast cancer three years ago, about your mums age, and had three general anaesthetics for the three operations including mastectomy. She isn’t as bouncy as before and they were worried but they did loads of tests before the ops before they went ahead. She’s ok now but her copd is usually well controlled. Every case is different.
it’s understandable you didn’t ask everything so I suggest writing it all down and taking your questions in. Cover every option. Sending you hugs x

Oh op, I'm so sorry, you must be in such a fog of emotion and shock.

My mum had moderate COPD and they discovered lung cancer tumours. Her lung capacity was only 50% and they wouldn't operate due to the risk to her recovery. If your mum's COPD is severe her lung capacity will be much lower, so it does make awful sense that the risks are intensified to a point that they won't even consider it.

Severe COPD is life-limiting - you say her live has been limited for 18 months, it's likely to have been decreasing in quality much longer, and she possibly has other health stuff going on too. If she's fully understanding of the situation, perhaps there is some deep feeling of relief that her struggles - every waking breath - are coming to an end.

As pp said, once the situation with her leg triggers off the chain of sepsis, her death is likely to follow quickly.

Please use the time she is coherent to make sure her wishes are made clear, and heard.

In the meantime, please keep eating, have a drink, take time off work. Sleep will overtake you eventually. Unmumsnetty hugs xxx

OP, it all sounds horrendous and that there really isn't any good outcome. However, surely if your mother is still able to make choices she should be given options and allowed to take whichever she chooses. She may decide she doesn't.t want to risk surgery and the consequences if she does survive of living with one leg when she is already very unwell are too much. Even she survives surgery she may not be able to heal well if her health is poor and succumb to infection anyway.

To be blunt they won’t get as far as operating. She would die as soon as they tried the anaesthetic.

My mother didn’t have COPD but did have heart disease. After she broke her hip aged 83 they did operate but she didn’t survive the operation. Her heart gave out and she never regained consciousness. I believe she died peacefully, but we weren’t there and never got a chance to say a proper goodbye, which still saddens me.
She had been a nurse so was in fact clear about the risk involved (as were we) and of course it was a very different situation. But it sounds as though the doctors are doing the right thing in this case.

Posters glibly stating they would want surgery to be attempted have no clue.

They should read the posts from those who know what they are taking about and who also have empathy.

I just think, they say she will die on the operating table, but she will die if they just leave her and in a lot more pain. So couldn't they just try to operate? If she goes then she goes peacefully. Not operating and leaving her seems cruel.

I'm sorry you're going through this OP. However, I agree with PP that if they go into an operation knowing she wouldn't survive, they are effectively talking about euthanasia. I cannot imagine a surgeon wanting to go into an operation on an elderly person knowing that their actions would in all probability kill the patient.

As awful as it is, sometimes we have to accept death. I think modern western cultures can be very bad at this. Spend time with your mother. Make the most of being with her and being able to say goodbye. As horrible as it is to hear this, dying on the operating table is actually a rather brutal way to go. I think it is better for her to go in her own time, with pain relief and sedatives.

What the NHS can do for her now is increase her pain relief to an extent that will control the pain but shorten her life. I have been through this with my then partner's father, although his problem was different. He had a gentle death surrounded by a loving family. It sounds as those your mother is still capable of taking her own decisions and this is also what she has chosen, her doctors will not over-ride that even if family disagree. My now husband's father was not able to make his own decision so the family had to agree - it was the right choice. Since then I have seen other deaths where an animal would have been euthanised but people suffer.

Accept your mother's decision. It is cruel to deprive someone of a gentle death to meet your own needs. Ask if hospice care is possible. It's a tough time for the family but in years to come you will realise this is what you would want yourself.

I'm so sorry to hear of this difficult situation you are in. I know this is a difficult and emotive time for you OP but please read the advice of @olympicsrock and other medical professionals on this thread and try not let other whip you up into a frenzy. It's not a decision that will have been taken lightly.

We were told on my mum's birthday this year that there was nothing more they could do for her, she was in end stage liver failure. They stopped all meds, fluids and food. The Palliative care team came and installed a syringe driver to control any pain. She was settled and peaceful for 13 days before she quietly slipped away. It's heartbreaking and devastating but it was the right choice, she couldn't be cured. She was 66.

Will be thinking of you in this difficult time. Keep posting, you'll get lots of support here.

It wouldn't be right to operate in these circumstances OP, palliative care means they can focus on managing the pain which is the most important thing right now.

Thinking of you and your mum

So sorry you are going through this and of course you will do anything to save her.
mot sounds like an arterial clot which kills everything beneath it instantly it doesn’t get blood supply. Most people think of venous clots which you have blood thinning injections and you’re all good usually.
people who have suffered a slow decline often at the end relais something quick in days happening. My Grandfather had a heart attack and that was what he wanted as he was just getting to the stage with his COPD that he was going to be bed kind within the week and he hates that.
But nothing will stop you wanting to do anything

maybe record her talking or ask her if there are any bits of jewellery she wants to tell you the story behind etc. Palliative care will help and only sedate her if she wishes it and she’s in distress and pain.

Not sure if any other medics have come along and explained it a bit better than the doctors but basically, your mothers lungs would not manage GA or intubation. A major part of intubation is whether the patient would manage extubation (removing the tube). If she's been in and out for hospital for months then her lung capacity can't be very good. It sounds like she has a blood clot in a major artery which is blocking off circulation below the level of the clot - this can only be removed surgery but sometimes they try intravenous blood thinners (depends on the size and location and carries risks). If her leg is turning black it means the tissues are dead or dying (necrosis) and yes by this point amputation is the treatment but it is major surgery and from working on vascular surgery wards, younger patients with far less comorbidities have taken months and months to recover. It's not just the immediate post op recovery, it's the long term functioning and mood disorders etc. I think (based on the information you have provided) that they have chosen the least harmful option for her. First, we do no harm. I hope the palliative team see her quickly- they are so good at what they do and will help to ensure she is as comfortable as possible. They will also offer support to you and your family. I hope you are okay and that your mother is not suffering.

Echoing what's been said about a hospice, if you can OP, it's a much bettwr environment for you as well as your mum, they are amazing

It does sound like they are going by chances of survival and because they know she will die anyway they just can't justify the resources surgery would use up for someone they know won't survive anyway, as cruel as that sounds. There really isn't a timeline with these things though. A bit like terminal illness some people get 18 months from diagnosis and others get 48 hours. The timing of death is notoriously difficult to predict in these situations.

Really sorry to hear this, but I am sure that in this case the doctors do know best.

Someone who has breathing difficulties is going to have huge problems with an anaesthetic and that is probably why they feel she's not survive.

GA is a risk for anyone but for someone like your Mum with existing lung issues, it would be very risky indeed.

When elderly people need ops, they try to avoid a GA and use spinal block etc but this is unlikely to work for your Mum.

Also, they probably think her leg wouldn't heel afterwards, and she'd be immobile with risk of infections.

I'm sorry.
Talk to the doctors and discuss it with them. They ought to give you all the info you need so you feel assured this is the best decision.

Bless you. I lost my stepdad to copd after a failed op.usually pneumonia begins or sepsis with this sort of thing.
he ended up deciding himself to go- they gave him increased morphine so he didn’t suffer and he went after 4 hours. We all sat with him and reassured him he was brave and he would see his mum again. It was heartbreaking but we remained positive and he was amazing. I hope your mum doesn’t suffer and passes peacefully xx

I'm so sorry you're going through this.

My experience has been that the palliative care team know what to expect. Ask them the direct question and ask them to be blunt. Their answer is likely to be more accurate than any of the consultants.

To put it into context OP, the avoid GAs if someone has a bad cold. The machines during a GA take over a person's breathing for them. If they have lung issues, they are at risk of not being able to breathe again, independently, after the op.

I hope this is ok to post and is just my honestly opinion - I would push for them to go ahead with the amputation- fully accepting she may pass away under anaesthetic because it would be a kinder way to go than as you say from sepsis. If she does get through the op then she may recover ?

I wish people would read @olympicsrock post before posting

You should read the posts of people who know what they are talking about before posting this kind of thing. The OP's mother wouldn't survive the anaesthetic. She will be getting shedloads of pain relief and won't feel the pain of the sepsis.

First off, I'm so sorry for you and your mum, heartbreaking time.
Secondly, you could ask what their plans are regarding palliative care, ie; end of life care. They can make your mum comfortable and she can even be at home with a nurse visiting.

If anyone is looking for a book to help make sense of the palliative care journey, I thoroughly recommend “With the end in mind” by Dr Mannix. It’s a remarkably uplifting book although very emotional too.
As posters have said up thread our Western cultures don’t pass down this knowledge, and it is immensely comforting to hear the stories of people like Dr Mannix who make “dying well” their life’s work.

And your advice to the family of the person who could have been saved but didn't get surgery because the team were pushed to operate on someone they knew wouldn't survive? Sorry about that but there was a patient we knew wouldn't survive who was prioritised? How many surgical teams do you think each hospital has on short notice in emergencies? Please think about what you are saying.

I am so sorry about your Mum.

My mum died last year. My experience was that the ward care was exceptional but that the hospice was even better. They are experts on pain control and are not as hesitant about using strong drugs when needed. Also The atmosphere is more peaceful.

So perhap try and get her into a hospice if that is feasible.