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.

I went through similar with my mum, gangrene set in very quickly after one morning her toe looked red. She did have an amputation but, I’m not going to lie op, before that she was in a great deal of pain, despite being on oramorph. One thing I will recommend, is making sure that loved ones visit whilst she is still alert, once the iv morphine kicked in for mum she was pretty unresponsive. We had at home palliative care from Macmillan (who were amazing) but my heart goes out to you, it’s a cruel and unhappy way to lose someone. And talk to her, gather up photos, bring her lovely things. And look after yourself. ❤️

What a stupid post @LuckyLil

@NorthernLights5

"I'm so sorry for what you're going though.

I have a lot of experience with end of life care and I thought I'd write a few things that may make your mum more comfortable. Although I'm just a carer so feel free to ignore!

The palliative medications will make sure she isn't agitated or in pain. Enquire about a mouth care kit including a soft silicone brush to keep her mouth clean and moist. Pineapple juice is really good for this. Ice lollies may be comforting too if her mouth becomes dry and she is unable to drink.

Vaseline or similar is also helpful to keep lips from going dry. Ask her in advance if there is any music or even tv programs she would like to listen to. "

I have a friend who has just been through palliative care with his wife. This info would have really helped him as the thirst and dry mouth issues he found really traumatizing. I think this is really useful to know so I'm going to keep your advice somewhere. It's the sort of thing you have no idea about until you experience it and then you have no idea what you can do without experience. Hope it helps others too.

This.

It's hard enough already trying to constantly make the right decisions with and for an older parent, often with multiple medical conditions,

No experience of this but I’m very sorry to hear of this awful situation

I would be pressing for a meeting with a palliative care doc asap and getting all my questions written down in advance.

Awful news OP. My DM died over a weekend unexpectedly even though she had stage 4 cancer.
My only advice is don’t waste time. Talk to her, bring her music she likes(headphones if necessary) nice scents and massage her hands with lovely cream. Read to her if she likes that. Is she religious at all? If so arrange a visit from priest or equivalent. I wish you all the best at this very difficult time. 💐

It doesn't seem right to just let her lie there with a black leg and let sepsis set in.

It is not right at all. Thirty years ago they would have operated. This is a consequence of statistics and targets. They don’t want your mum to potentially be an operative fatality and look bad on them. It’s horrible and sad when an amputation is the best chance of an improvement in quality of life.

It actually worries me some people are so selfish towards their relatives as evidenced by some of the posters here . The patient deserves a good death and to die with dignity. Dying on an operating table surrounded by strangers, bright lights and machines attached is not a good death. Your lovely mum will have pain relief and sedation she will be in bed surrounded by family. Medics cannot save everyone we will all die at some point.

I am so sorry.
My thoughts on this.
Is there a palliative care consultant at the hospital? If so do your very best to get them to see you and your mum.

My mum was admitted to hospital in 2020 after a prolonged period of awful deteriorating health. Like your mum she was fully lucid. She was actually at this point asking them to stop treating her and help her on her way.
At one point she asked for the nurse in charge and said she wanted to stop treatment. As luck would have it the palliative consultant was on the ward. He spoke to mum at length and then to us.
Essentially he said that all doctors struggle with the concept of not attempting to treat. he was satisfied that mum was in sound mind and her wishes were clear.
he moved her to a private room, stopped all drugs apart from morphine and she slowly drifted off 12 hours later.

No doctor would consent to operate if there was 100% chance of the patient dying on the table.

I’m so sorry . It’s a major life event and I feel for you. Both my parents died recently and in each case I was bamboozled by staff being unable to proffer a time frame re how long they had left. I think it’s a totally understandable need to pin dirk a time frame to try and make sense of what’s happening but in my experience the staff simply don’t know . Be kind to yourself and ask for help and support . All the very best

@olympicsrock thank you so much for your post. We are going through a similar thing with an Ischemic foot and I have been terrified the death would be painful and traumatic, despite all the palliative drugs.

Can't thank you enough for your comforting insight.

Just reposting @olympicsrock 's post so OP has more chance of seeing it.

Sending loads of love to you and your mum and family OP ❤️

They can’t perform an operation they know will kill someone.it’s unethical.
But the drugs she will now be given to make sure she’s not in pain will end her life. It could be days rather than weeks so please say everything you want to now, while she’s still lucid and here.

If she’s put on a syringe driver she will be gone very quickly. My DM who was much younger her but with cancer was dead 4 days after being on the driver. She died peacefully, unaware of of anything in the last day or so.

I have recently spent a lot of time visiting someone on a ward with lots of similar patients.

The most notably happy and calm patient was the lady on palliative care in the corner. She had two broken legs and it was explained to her family (as you can hear everything) that even if they operated on one, she could not weight bear on the other and basically infection and sepsis would set in anyway and it would be a longer and more painful death. She was on morphine, seemed happy and calm, was asked if she wanted to go home and said no she was happy in hospital, was listening to the radio, eating her hospital dinners and slept the vast majority of the time.

The other women on the ward, without exception, cried. Never when their families were visiting though. They had exceptionally ulcerated legs, breaks, bed sores, weeping wounds and most were 80-90 years old and the thought of not being able to walk about and live normally was heartbreaking to them. I spent a lot of time with one lady and she cried most of every day, just tears running down her face as she had a wound infection that had lasted 6 months and was extremely painful, in both legs.

I realised then why the lady on palliative care was feeling ok, she was on morphine (as were all the others) but more importantly she was clearly at peace with her death. Imagine having an amputation- I wouldn't want that at my age. Now imagine doing that age 80, having had poor quality of life already, with all the attendant problems of infections, inability to move, having to be toileted by others always (a lot of the ladies cried over their weeing/pooing which others had to clear up even though the carers were lovely about it, I guess it's the feeling of humiliation), the psychological loss of a limb, the threat of bed sores (as you can't move and have thinner skin). It's not the same prospect as a 30 year old with good healing properties having an amputation where there's a realistic prospect of a happy healthy mobile life ahead.

I think when you get old, or even when you are young and in terrible pain and discomfort, you realise there are things worse than death. Hugs to you OP, I would be led by your mum on this if you can, she is calm in the face of it, even though for you it must feel just so terrible. More hugs.

This is a very different scenario and I understand your frustration as I know someone given similar choices. Whether in the private or public sector, one would advocate for surgery under these circumstances. Please read the lovely and knowledgeable post from @olympicsrock

I agree that @olympicsrock 's post is brilliant at explaining why these choices are made as they are- even if the OP's mum didn't have COPD, someone with poor quality of life may well choose not to have an amputation anyway if the prospect of painful prolonged suffering were ahead.

I'm so sorry this happening for you all. My only experience of palliative care comes from when my dad was in his last week or so with cancer. From our first visit to him on that ward we felt like we were in a different place. The ward sister said that they didn't want anyone to be in pain. They were focussed on making dad's last days as comfortable and peaceful as possible. While he was in a four bay ward we had to stick to visiting times but I was told to call any time, day or night, to see how he was.

A few days before he died he moved to a side room and we were told to come and go as we pleased. The care given to our whole family was all we could have asked for.

Don't be afraid to ask questions. Or to get someone else to ask them if you are too upset. Your mum is clearly very loved and it sounds like you have a wonderful family to support you.

What is happening to your mum sounds very much like what happened to my cousin, almost word for word. Surgery was mentioned but he wouldn’t survive the operation. He was taken into a side ward where received palliative care, he died peacefully and in no pain a few days later. Sometimes the kindest thing is to do nothing. He died with his family next to him, if he’d had the surgery he wouldn’t have had that.

I disagree with you. The team will have considered how poorly she is and won’t put her through all that trauma if a poor outcome is expected.

My grandma was admitted with a similar story. She had palliative care in hospital and was sleepy and peaceful when we visited. She died a week after being admitted and we were so glad that she only received palliative care.

How terribly sad. My thoughts are with you. We had a relative start palliative care and they said it could be anytime up to a year qualified for this type of care, however the nurse when asked also gave a view that it would be weeks not months in our case. This turned out to be very accurate, 3.5 weeks. Around the last week it became clear that everything was slowing down, sleeping most of the time, on morphine by this time round the clock and we were told it probably would be within days and this was when everyone visited to say their goodbyes. I’d encourage you to talk to the palliative nurses, very difficult as it is. If they have a view they will tell you but also they will be clear that it’s impossible to be totally accurate.

@debbiedesperado im really sorry for the position you are in but there’s nothing peaceful about dying on the operating table. All you’d be asking here is essentially for medical staff to immediately execute her. We need to do what is in the best interests of the patient all round and a traumatic and invasive procedure is not it. If nothing more can be done then the kindest thing is to provide pain medication and sedatives and let her slip away when she is ready. I know that’s hard to hear, but it is.

To proceed with operating would also be taking up a trained team of specialists, and a theatre, and an ICU bed when there is no chance of recovery - it also wouldn’t be fair to other patients in need of those services who could tolerate surgery. I know other patients aren’t your priority but that’s the choice that staff are making.

Our overall mandate is that the patient comes first, and we must do no harm. This means that in an impossible choice between doing something that would definitely kill your mother and letting her die when her body is ready, we must always choose the latter, and make that as comfortable for her as possible.

I'm so sorry OP.

Many people are suggesting that dying in theatre would be a better option than leaving her. Can you really wave your mum off for an operation knowing that you are almost certainly not going to see her again?

Add to that the very knowledgeable post from olympicsrock above.

If your mum survives the operation the pain following an amputation will be off the scale compared with the pain she is in now.

Accept the sad truth and make the most of the time you have left with your mum.

I'm so sorry OP. I'm an NHS critical care podiatrist and I have many patients in this situation having end of life care. There is nothing they can do except amputate and that is a risk that your mum has to decide for herself whether to take but sadly is not likely to survive. But it sounds like she can't have a GA. You are looking at end of life care now. Maybe it is time to ask about hospice care to relieve the symptoms.
I'm so sorry it is such a stressful time for you.

So sorry you are going through this OP, the not knowing ‘when’ is just awful. She will be given drugs for the pain and eventually she will probably be on such a high dose or morphine she will hardly be awake. It does seem cruel but she won’t be in pain.

I'm so sorry op .

Surely even with copd she could have a spinal block for an amputation rather than a GA. Ask the consultant to please liaise with an anaesthetist asap. She could have sedation too it would mean she would be asleep not unconscious.

No one should die of gangrene please ask them to reconsider.