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.

They're not there!

It's not about money - you cannot put someone with COPD under general anaesthetic

Also please don’t believe it’s a cost saving exercise so that the NHS can fund boob jobs… which they don’t. I work in the NHS and yep it’s a shit show right now but elderly people are still operated on for emergency surgery and given treatment like anyone else. If it’s in their best interests and medically can help them. Elderly medicine is more complex due to age and more complications/risks plus health conditions that can also cause issues ( like COPD)). Doctors aren’t just going ah no i can’t be arsed let’s save some cash instead.

There is really great post above which sound like it explains what’s happening or similar to your mum.

You cannot put someone with COPD under General Anaesthetic it would kill them instantly 🤦🏼‍♀️ An MP cannot change this, it's medical fact

As I've said, General Anaesthetic to someone with COPD would be instantly fatal. Unless you have medical knowledge, declaring those who do as being 'so wrong' is, well, wrong!!!

My Mum died at home in pain, and was failed by palliative care in the community - hospice staff and district nurses let her pain relief drugs run out and didn’t even turn up to check her/replace them every 24 hours. All the alarms were going off on her pump. They wouldn’t even answer the phone. When we finally got through, we were sobbing and shouting. when nurses finally turned up, they hadn’t even brought her drugs with them. I had to drive across the city to the hospice, and then wait as the drugs weren’t even ready.

There are PPs who have mentioned asking for your DM to come home. I doubt the hospital would consider this in her case, but just wanted to flag that there’s no guarantee pain can be well managed outside a clinical setting. Maybe some people have good, pain-free deaths at home, but this certainly isn’t always the case.

I am so sorry you are in this situation. I had to sit around watching my dad die and it’s awful.

They won’t let her die a painful death though. They’ll give her painkillers and sedation. You’ll get chance to say goodbye.

I know how difficult it is to take in what they’re saying, the words would just go straight out of my head even when I was panicking and trying to take everything in. Write down everything you want to ask them, and write down everything they say back to you. Take someone with you if you can.

for you and your lovely mum.

My grandma was on palliative care - no food or drink and mainly totally unconscious - for 3 weeks. So just to warn you it can take a while. Horrid to have to say but thought it best to be realistic. Agree it’s inhumane. Your poor mum and poor you 💐

I’m so very sorry about your dear mum and for what you’re going through.

As others have said, I would also advise trying to get her moved into a hospice for end of life care if it is an option, as it would be a much calmer and more pleasant environment than a hospital. They can provide end of life care and all the pain relief needed at home too.

If she isn’t able to be moved, it might be a good idea to have a rota of family members so she isn’t left alone at all, to request pain relief if she appears in distress, to provide mouth care etc. If the hospital is anything like the one my dad was in, unless family do this, it’s unlikely to happen.

Unfortunately chronic COPD and general anaesthetic are a very dangerous mix... it would be more like euthanasia to try and anaesthetise and intubate this patient knowing she would be unlikely to survive this before the operation itself has even started.
It's a totally awful situation and I'm so sorry OP that your mum is suffering with this. The palliative care should ensure she remains out of pain, but it may be worth asking her consultant their specific concerns on why attempting operating would be more harmful than leaving it.
Sending best wishes x

I would want them to try and operate

Best wishes to your Mum, and you and your family OP xxx

Dear OP,
I am so sorry that you are in this awful situation. I am a Consultant Vascular surgeon and often look after patients in this situation.
I promise you that this decision will have been made out of compassion and with your mum’s best interests at heart . This is in no shape or form a cost saving measure.
It sounds like the chances of your mother dying in theatre from complications is very high. She would be unable to have a general anaesthetic with bad COPD . You can’t safely give someone on high doses of blood thinners a spinal anaesthetic so the other option would be local anaesthetic which might be impossible if they needed to explore the lower leg arteries or make multiple cuts. It would be very distressing for your mother.

You say at the beginning of your post that she has had no quality of life for 18 months. This will have been take n into account - why put her through a distressing time before her death? Acute limb ischaemia is often an indicator that someone is at the end of their natural life and has multiple other problems .

Restoring the blood supply to a limb is a time critical event. With acute limb ischaemia where you have sudden onset loss of movement and sensation , you have less then 24 hours to operate in order for the nerves to recover and you to be able to have a useful foot to walk on. Perhaps this time has passed.

I always reassure patients that death from an acutely ischaemic limb is a gentle one. The toxins in her leg will cause kidney failure which makes you sleepy and then unconscious . She will have medicines as advised by palliative care to take away any pain, or anxiety . The length of time depends on how much of the leg has died and how unwell she is from other problems ( sometimes a heart attack or infection causing atrial fibrillation caused the blood clot) . The general timeframe is 3-7 days. You will be able to sit with her and she will be kept clean dry and comfortable . There may even be time for her to go home with palliative care nursing. This will be a good death and there will be time for you to chat and for her to know that you love her.
Please ask to speak to the consultant vascular surgeon looking after her . They will be happy to explain all of this in relation to your mum. It is our job to help patients and relatives make difficult decisions. Sometimes as here there is no good options .

The palliative care team will explain to you and your mother what will happen over the coming days and can make sure that things are as ‘good’/ comfortable for you both as possible.

Big unmumsnetty hug xxx

@olympicsrock thats going to be a great comfort to OP when she reads it this morning. Glad you found the thread.

No one can say OP exactly but she won't have long. The medical team will talk you through how that will happen. The palliative care team will keep her comfortable and out of pain , she'll go sleepily, spend as much time as you can with mum whilst she's awake still.

Sorry but It really genuinely isn't a humane way to go on operating table for a leg amputation.
They simply can't give your 80 year old mum Gen anaesthetic due to her chronic COPD and it's a severe operation. The medical team are saying no to it for good reason.

@olympicsrock what a kind, thoughtful and informative post. It's brought tears to my eyes.

Sending love to you and your mum OP

If palliative care is the route you all decide on then I would really recommend you push for a move to a hospice.

Ah cross posted with vascular surgeon
But they said it with more explanation.

It's time to sit with your mum in hospital, hold her hand and talk about your favourite memories. That you're there and you love her.

Get on the phone calling the few v close to your mum to visit that day briefly
And anyone else close, for you to text to do WhatsApp video calls so they can say hello (& bye) for few minutes. Mum will become very sleepy soon.

There seem to be people on this thread who cannot accept that everyone must die at some point, and that point is often not "old age". Medics are not miracle workers.
OP, your mother will not be in pain, they will be able to provide the highest strength drugs. She can drift away peacefully with her family around her.

Sorry not read the whole thread but in al likelihood your mum will be kept pain free and they will slowly with your mums permission give her pain relief and sedatives that will eventually reduce her respirations to a level that will not be enough to keep her lungs/heart going.
That may sound horrible but it is exactly what my df was offered as end of life care earlier this year. I was there when then gave him an additional sedative and watched as his breathing reduce over a short period. He had and we had agreed to this as his COPD was horrific to watch/ experience.
His death was very peaceful and pain free and I wouldn’t have wished for it to be any different.

For my granny (similar but in foot rather than leg) it took a couple of days but was quite peaceful.

I am so sorry to hear this OP. It's so very difficult to come to terms with the idea that there are no options left.

All these people saying that the hospital must operate don't have any idea what that actually means for your DM.

If I was in her shoes I would absolutely not consent to surgery: there's a choice between saying goodbye to you as she's wheeled to theatre to be amongst strangers with a near 100% certainty of death within a few short hours, or of slipping away gradually with family by her side.

My DM died recently, from pancreatic cancer that was blocking her bile duct. She had an infection that wasn't responding to antibiotics and was jaundiced. So although it's different, it's similar. There's infection and toxicity. From diagnosis to death took 2 weeks, and we had time to say our goodbyes.

She died peacefully with me, my brother and my son by her side, as we had been throughout most of those 2 weeks. As she gradually stopped talking and became quite confused we talked to her about shared memories and, as she was religious, about all the people who were waiting for her. It was a privilege to be there to help to deliver her out of this life as she had delivered us into it.

No death is wanted, but death will come to all of us, and a death can be a good one.

A hand hold....xxx

Your lovely mum may not want to die on the table though?
It sounds like she has accepted her end of life is coming to just that.

I'm so sorry. This must be very difficult. My father just died very recently and in very quick circumstances also.

Are they recommending she stays in hospital or goes to a hospice? A hospice is quieter and calmer as someone mentioned up thread. Hospices can also give much greater levels of pain relief. They have highly experienced doctors and nurses on hand who are used to end of life care. If it's an option that's available to you I would seriously go for it.

I'm sad to say I found the palliative care and pain relief team at the hospital very lacking. I'm still quite traumatised by battler everyday to get him proper pain relief. I'm sure it will very from hospital to hospital, but my dad's pain relief wasn't managed well until he got to the hospice. And then he was absolutely NOT in pain in the last few days.