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.

She's 80 with a chronic breathing disease and now a life threatening condition. It would be totally pointless to do a full leg amputation on someone who would end up in weeks of pain, her breathing issue would complicate things and would still impact her quality of life. Having seen people with this situation its a cruel and painful thing to do.

Is the palliative care from the hospital?

Can you contact Marie Curie or your nearest hospice for advice?

It is a difficult time and I'm so sorry for both of you

A skilled medic on here {Olympicsrock} explained beautifully for non medics how it works.
She had empathy and grace in her post, doubtless learned by dealing with distressed patients and their advocates.
To many not familiar with the details, death under anaesthetic would seem preferable to lingering for weeks with a dying leg and all that entails.

Can you imagine what an horrific experience that would be for her? And to what end?

Let the OP's mum (who is of sound mind) make her own decisions

Well, it wouldn't be for me!

What horrible things to say.

It's not 'the NHS' who has made the decisions. It's the medical staff with far more knowledge and compassion than people who have no idea of the full situation.

Other 'first world' countries might continue because they'd get paid! Or their medical staff might also put the patient first.

I am so very sorry OP. I would be thinking of where your Mum would like to pass, at home with district nurses? If she would like any kind of blessing. Possibly have her room with low light and candles. I have heard people say they don't want their bedroom feeling like a hospital. Do not be afraid to ask for more medication if you feel she is at all agitated. I hope it is peaceful, such a sad time for you.

For different illness but similar circumstances my mum went through this. She was heavily sedated, kept comfortable and died peacefully 10 days later. It gave her and us time to say goodbye and if they'd operated we wouldn't have had that precious time with her. Spend every minute you can with her, holding her hand, talking to her, telling stories. It's a horrendous time for you all but is a peaceful ending to hopefully a long and happy life

I've done the typical MN thing of not answering your question. I don't think anyone can tell you how long it's going to be unfortunately debbie. I just hope it's peaceful at the end

My adopted dad (a few months younger than your mum) faced a similar situation last year.

He decided to have active care withdrawn and floated away on a palliative care cloud of sedation. He was a retired doctor and was mentally sharp and was very sure in his decision making process. He made all his decisions on the Monday and died on the Wednesday morning.
it was more difficult for us, as a family, than it was for him (it didn’t help that covid restrictions were still in force so we didn’t all get to see him in those final hours).

If your mum wanted to go ahead with the op she could probably insist on it? It would have to come from her and not you though.

If she’s anything like my da, she’s probably feeling quite pragmatic about it all and not nearly as alarmed or upset as the rest of the family.

Whatever happens next, I sincerely wish you and your mum lots of love and peace xx

Anaesthetist here - but really, this isn't about the anaesthetic/operation itself. I completely agree with everything @olympicsrock has said. It might be possible to get this poor lady through an amputation (which while it may be relatively quick, is certainly not a small operation!). But it's not just about dying on the table, it's about what happens next.

Any operation is a major challenge to the body's physiology. You need a lot of strength and energy to recover well from something this big. In an elderly patient with poor physiological reserve, there's a high chance that the wound wouldn't heal, leaving her with a painful, broken down wound needing (also painful) dressing changes. Even super healthy patients need intensive physio and rehab to regain mobility after a challenge like this, for which it sounds like OP's poor mum doesn't have much strength. So it's likely she'd end up bedbound, or at best, hoisted into a chair for some time each day, needing help with every aspect of intimate care, and even more vulnerable than ever to pressure sores, UTIs, chest infections etc, one of which would eventually kill her, most likely after a few more months of suffering. The absolute best she could hope for would be to get back to slightly worse than she was before hospital - and is that a life she would want?

So the op might well not improve her pain, and whatever "chance" it might give her would not be a chance of return to full health. A good death is one of the best things we can do for our patients if the alternatives are not sensible.

From a personal perspective, my own grandma had an ischaemic leg about 20 years ago, in her case likely due to atrial fibrillation - she was 80, didn't have COPD but did have some other health problems. She did have an operation (limb salvage, hers wasn't as badly gone as OP's mum). But she was never the same again - ended up with horrible ulcers on that leg which gave her so much pain she could barely walk, and she weakened almost in front of our eyes over the next few months. She died within a year, but it had been a pretty miserable year.

It sounds like the consultants have made the very best decision for your mum, anything else would be very traumatic and unlikely to give the positive outcome you hope for.

It is natural for everything inside you to not want to "give up" on them, or not want them to stop "fighting" but there comes a time when you need to face reality and the consultants will understand this, they see it often, so ask the questions you need to to make sure your are satisfied there is now no alternative.

Wishing you strength over the next few days.

The difference is that the OPs mum has chronic COPD and the leg will not be being adequately perfused with blood, hence the clot forming in the first place. It also means that thrombolytics(clot busting drugs) can't get to the site to work properly. The medics have assessed she wouldn't survive the surgery so it isn't an option. She will receive palliative care which will keep her pain free.

OP. What a difficult time for you and your family. Wishing you strength to deal with whatever happens.

One of my parents is very unwell now and we may be faced with similar in the near future, so I have very much appreciated the very detailed and informative posts from qualified and experienced HCPs.

I wish posters opening a sensitive thread like this would take the time to read, or at least skim, all the way down before posting. This is complicated and there are many factors to consider. Not all of them are obvious to lay people who are understandably thinking about keeping a loved one with them for as long as possible.

Be kind to yourself op

'So the op might well not improve her pain, and whatever "chance" it might give her would not be a chance of return to full health'

I don't think anyone has suggested it would be a chance of return to full health, rather it would allow her to spend her last few weeks with her family in comfort and dignity with her pain managed more effectively which amputating the gangrenous limb would allow for.

There have been posts from a consultant vascular surgeon and an anaesthetist on this thread. Please read them. The scenario you're describing isn't going to happen and I can't imagine it's anything other than massively distressing to the OP to have people who have no medical knowledge keep repeating this same thing.

My dad died very recently from complications caused by COPD. I'm so glad he was able to die in peace with his family around him and we didn't push him to have treatments which would have been massively traumatic.

@LookingAtYou how would performing an above knee amputation on someone knowing they were highly likely to die in the days or weeks afterwards be letting them die with dignity? The pain from the amputation site would like be just as bad as the necrotic limb, that's if the patient made it through the anaesthetic. The surgical/anaesthetic team clearly feel a spinal block is not suitable for this procedure and as they don't like to perform operations knowing it is going to cause immediate harm to patients, they have advised this is not the way to proceed.
I wouldn't argue with their expertise and the vascular surgical consultant @olympicsrock on this post.

Good post.
So many who haven't read the thread, especially the input of experts.

I think that when you are young and have no experience of death there as an assumption that everyone wants to hold on to every last second.

This lady is mentally capable of making a decision.
I have had two life threatening illnesses and it truly crystallises the mind when you are faced with death. Someone of 80 knows that time is limited, she will be at peace with the prospect and the greatest wish many have is to have some say in how and when.

Sending you love and prayers. Everyone's timeline is different, if you feel confused atall it's always important to ask for an appointment with her doctor to discuss things further and take someone else in with you to take notes. It's vital that you understand what's happening.
Spend this time talking with your mum and telling her how loved she is, you sound like an amazing daughter.
Thinking of you xx

Unfortunately mum died at 11.02 this morning, surrounded by her family, it was very quick but very, very peaceful. She was in no pain. Thank you for all the kind messages.

@debbiedesperado I'm so sorry for your loss take it easy

So sorry but so glad it wasn't long and she had her family there.

Sorry for your loss. I'm glad it was peaceful. We lost FIL to sepsis this summer.