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.

Agreed-@NorthernLights5 I had a spine op a few years ago and the Carers were great.
Really patient and respectful of dignity . (bed bath &c)
I remember the carer I had - The woman in next bed said how good the Carer was, too.
A good one remembered - Especially when one feels vulnerable!
Thanks for doing a great job 💖

I’m glad to have been able to provide information that is comforting . Some of the posts on here are just going to cause OP more stress and distress.

At the end of the day we try to provide care that is in line with patient wishes. If OP’s mum didn’t have such bad COPD an above knee amputation might have been an option. It is not kind to put someone through the trauma of major surgery and pain of an amputation for them to die shortly afterwards .

If you explain to someone what their quality of life will be like afterward a major amputation many people CHOOSE palliative care, particularly if they have poor health, poor quality of life and a probable short life expectancy .

An above knee amputation in an elderly person with serious medical problems means almost total loss of independence in the most basic ways. I would not choose it for myself or my loved ones.

I hope that the medical team looking after OPs mum and making these decisions will have been able to gently and clearly explain that they can’t save her leg and the reality of what an above knee amputation vs palliative care mean. In many cases such as this one palliative care is the gentler kinder option. PM me if I can help.

Love and strength to OP

We have been through similar with MIL, she had atrial defibrillation and a clot in her bowel. She went into hospital fussing about her handbag and asking for coffee, slipped away five days later. They made her comfortable when it became clear that there was nothing that could done that would serve her best interests. I deeply regret that it was during Covid so only DH could be with her. I couldn't go and see her at all , I never saw her again and poor DH had to do without support there (except for the nurses who were great, but they were understandably very busy).

Worse for DH was he had been through similar with his dad a few months earlier and again, I couldn't be there for him

It is hard accepting that there is nothing that can be done to save the person, and the priority now is ensuring they don't suffer. The staff will be acting in your mum's best interests, it would clearly be wrong to put through an ordeal like surgery that would almost certainly end her life away from the ward, where you would be able to be with her. Thinking of you

OP my mum passed with similar circumstances but different main illness, December just gone. She was 71 also chronic COPD. She has what we thought was UTI symptoms and had a few weeks of antibiotics however the pain got worse and her appetite disappeared and she was sleeping more often that not.
I called a doctor out and she was admitted for kidney infection possibly.... at this point.
She went in at 8pm and i received a call at 3.45M from a surgeon telling me scans showed a perforated bowel and bad Infection. They were going to operate then and there to save her. I then got a call one hour later saving they had spoken to my mum about everything and they didn't think her lungs wound survive surgery and the complications were vast so she and they agreed not to proceed.
I then called her and it was she odd as she was so calm and matter of fact and chatty. I went to see her and the doctors came and told us everything together none would give any timeframe just hints it was imminent. She stayed in hospital had 3/4 good days of being awake chatty and herself, then 1 bad day of being very sick and sleepy, one full day asleep the whole day and not really aware I was there then the next 2 days entirely asleep with no ability to talk etc. she passed peacefully in the 7 day in hospital.
Any advice would be get in all the ti e you can as sepsis can take over quickly as can a burst blood clot ( she has one of those years previously also)
But the hospital (I got mum into macmillan) will make sure she's very comfortable and settled if need so dont worry about pain. Hugs to you x

'If OP’s mum didn’t have such bad COPD an above knee amputation might have been'

You do know that people with copd have hip and knee replacements all the time using spinal blocks rather then GAs? Granted it isn't an amputation but it is far more complex and lengthy surgery. People with copd are not usually written off.

Surgeons need to talk to actual anaesthetists before deciding these things.

@olympicsrock That explains it very clearly- and humanely.
Your patients are fortunate to have someone like you on their corner.

I’m glad that a few MNs who have lost relatives to acute limb ischaemia have been able to share their experiences of it being a peaceful end with their relative being gradually less conscious and pain free over a few days.

The patient is usually in a side room and families are welcomed ( at any time at the end)

After a sudden event like this this is no infection , and if the leg remains dry there is no ‘smell’ just a change in colour and temperature. Any pain can be managed. The leg is under a clean sheet and is not distressing for anyone.

It is not a bad way to go at all.

It already been explained that spinal blocks are not suitable for patients like the OPs mum that have been on high doses of blood thinners.

'An above knee amputation in an elderly person with serious medical problems means almost total loss of independence in the most basic ways. I would not choose it for myself or my loved ones.'

It is a quick operation which as I keep saying done under spinal has no affect on those with copd. It then allows patients to die with their pain under control and with dignity.

I’m sorry OP. We went through something very similar with my dad although the blood clot was elsewhere - the anaesthetist took one look at him and his charts and said no way was he a candidate for anaesthetic. Everyone was very kind saying there was nothing that could be done and dad was 88 and in frail health so we accepted it and did our best to make peace. The doctor said some patients hang on for a few days, but Dad slipped away quietly the first night. The nurses had found him a side room and he was not in any pain. Dying quietly in his sleep was the end he wanted, and apart from not being at home in his own bed, he got that. We found some comfort in that.

But OPs mum can't have a spinal due to the medication she had been on.

My MIL was in this situation. The doctors did give her a time frame of 2-4 weeks before death. Perhaps your DM's doctor could give a likely time frame for her. MIL had a pacemaker, was on blood thinners and other meds but had been living an active life - so perhaps this is why she survived longer than expected, dying after 6 weeks. The hospital offered her a side room and palliative care or the option to contact hospice care but she wanted to die at home.

It seemed really stark to be told you would die of a clot and slowly be poisoned but MIL understood why they wouldn't operate and did have a couple of weeks when she was lucid enough for people to come and say goodbye and seemed remarkably calm about it all before weeks of sleepy dreams and oblivion as things progressed.

Surgeons speak to anaesthetists all the time, we are one team after all. I have done major amputations under spinal anaesthetics and even regional blocks with sedation.
We know what is possible…. We also have perioperatuvr care geriatricians as part of the team who help patients make these decisions with a holistic viewpoint.

My point about not doing a major amputation in someone with severe COPD was not in relation in the technicalities of doing the operation/ anaesthesia but more in relation to her poor quality of life afterwards and life expectancy.

Anyway - OPs mum is an individual. OP should have a conversation with her consultant to explore what the options are .

This post is so kind and informative. It's brought tears to my eyes.
My dad is supposed to have palliative care at home but they don't come. He's in pain and miserable.
He has a DNR now because any attempt to resuscitate him would kill him.

Operating would be cruel, sometimes doing nothing apart from keeping a loved one comfortable is kindest.
I wish my dad was in the same situation

OP I don't want to increase your stress in any way but I've recently been through a very similar experience with my mum who also chose the palliative care pathway.
My understanding of palliative care would be that my mum would be pain free and comfortable, but she was anything but. There are really strict rules about what type of medication can be administered and how/when. My mum did not "officially" lose her swallowing reflex (as there was no speech therapist available to assess her for 6 days) therefore she was not allowed iv meds. However, she repeatedly choked and couldn't swallow the oramorph or paracetamol solution, so she was effectively left without pain relief.😔
It's OK to say "she will be made comfortable" but id ask what exactly that will include and entail.
Thinking of you and sending strength.

'It already been explained that spinal blocks are not suitable for patients like the OPs mum that have been on high doses of blood thinners.'

But we are now talking about end of life care, the patient has gangrene thinners won't make any difference at this stage, they should be stopped for a block.Then sub cut could be given post op.

I have just seen so many times surgeons deciding these things without consulting anaesthetists.

Anyway sorry again op, just for any others reading always push for second and third opinions.

The OP has described her mum as having no quality of life for the last 18 months. To throw in a leg amputation as well is not going to be a good outcome, even in the unlikely event she survives the operation.

I'd want to be there holding her hand. Not have her die on an operating table or in ICU.

Once the opioids start with those already frail it's usually quite quick.

I hope you get chance to tell her all that you want to and to offer comfort when the time comes. So sorry you are facing this but I don't think providing false hope or demanding surgery is what's in her best interests.

To clarify - a limb salvage operation can’t be done under spinal if the patient is on blood thinners ( or if done there is high risk of spinal bleeding and paralysis) .

An amputation can be done and is often done under spinal anaesthetic. The issue is about whether is is kind / right to amputate a limb at a high level in someone who already has poor quality of life. It is a very traumatic event often with significant postoperative pain and complications which include pneumonia .

Why do you think amputating the leg of an 80yo women with no quality of life is the best thing to do? Even if she makes it through surgery she will go back to having no quality of life except now she will be totally immobile. Just because something may be possible (and you don’t have the information to know that she would definitely make it through the operation) doesn’t mean it should be done. A good death is often the kindest outcome.

@FlowerBrooch What a lovely post ( Brought tears to my eyes- esp your Dad meeting his sister.
You are right about the visceral gut punch reaction people have when they are suddenly confronted with big issues like these- OP is worried her mum will suffer unduly with a degrading limb.

Non - medics of course wouldn’t know the risks of anaesthesia.
People generally fear a “Bad” death for either themselves or a loved one.
Olympicsrock, the Vascular consultant surgeon explained it beautifully to those of us who aren’t medics.

First of all sorry about your situation. Secondly, my uncle was in a similar situation (though he was in his late 60s) and he passed away 2 weeks ago after original diagnosis in January 2020. medications and such helped, his situation wasn’t entirely the same, but similar. Hope you’re ok sending hugs xx

It’s time for her to go. I know it’s hard to accept it but she has no quality of life. It’s just her time.

I am so sorry OP. This sounds horrendous for all of you. 💐

OP said her mum has had no quality of life for the last 18 months. 18 months. But you think docs should perform a high risk operation that will likely decrease the quality of life for this 80 year old woman further? Can you explain a bit more so I understand your thinking? This is obviously difficult for OP and family but am not sure how amputation is the best option