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.

'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?'

It is about dying with dignity, not of gangrene. Of course it won't improve her quality of life but it is a quick operation that will then mean her pain would be better managed even if it is still a palliative care situation obviously not curative.

I understand we are talking about a person's loved one and I do not want to be insensitive but thinners are often stopped for an op, it's past that stage anyway and people with copd have blocks all the time. I just hope this patient and her family are getting the best advice.

She wouldn't need an general anaesthetic.

OP - ask why she can't have it removed under Spinal?

'OP - ask why she can't have it removed under Spinal?'

She is on thinners. Thinners are stopped all the time for blocks and surgery though.

Given the complications and her existing quality of life, the medical staff would have weighed up the balance of benefit. It must be heartbreaking for you all but I would prefer a well-managed death than a traumatic surgery with a poor chance of survival. Quality of life for me is more important than attempting to preserve life at any cost.

@debbiedesperado So sorry for your situation. You can perhaps take a little comfort in that your mum seems to be at peace. 💐

No has anyone asked what her mum wants? She might not want the operation or an amputation. OP has said she has a poor quality of life, it should be about quality not quantity of life.

And the thinning effect can also be reversed with other medication.

OP - for your own peace of mind - ask about Spinal and also ask if the blood clot can be removed under local anaesthesia - embolectomy

I am genuinely surprised at all the people suggesting that OP effectively ask doctors to end her mother's life, on the operating table. Do people think "tell them to take the chances with anaestgetic and surgery" is how the medical profession works?

When DHs dad had surgery under a spinal op he had to stop the thinners a week before surgery though.

That is exactly what I would ask ... and what I would want for myself. I'd say what I want to say to my loved ones first. Then say no heroic efforts on the operating table, but a chance to live without a leg or a painfree death.

I'm so sorry, OP. My heart goes out to you both. Good luck advocating for your poor mum, I know it's not easy.

@LookingAtYou As you recognise this is end of life care.
The OP is not being asked to decide, she is being asked to support the decision of a mother able to make up her own mind. You are assuming her doctors have not already considered all the options. You are assuming this has not already been talked through with the mother.

OP even some doctors dont know when to let go. If doctors were able to operate and if your mother survived how long would she have? How many bed sores and infections would she suffer?

Your mother has made her peace, your job is to let her go without making her suffer for her remaining time.

Rubbish.

Many years ago they amputated my grans leg because of a massive clot.
I wish they hadn’t done it she was so mentally stressed afterwards and died within a week.
It was awful. I wish they had just gave her palliative care rather than subjecting her to an amputation. she had went into it knowing that she would be disabled afterwards but it seemed to cause a break her mind. She was so distressed afterwards very muddled in her thinking and died very quickly. It was very distressing for us all.

So sorry. I would want them to try and operate as it seems she will die without why not give it a try? There is a small chance she will pull through. Leaving her like that seems cruel x

From the details you have given they will not operate, her risk of harm (death) is too high therefore it is not ethical and euthanasia is not legal in this country.
Yes the alternative is not pleasant either.
She needs to ask for painkillers when she is in pain, even if she has had them recently, this is the best way to ensure her pain relief is reviewed frequently and she remains comfortable.
People receiving palliative care can live for many months (in some cases years) however from the details you have provided I do not think this will be the case. To answer your question I think your mother will pass away within the week, 2 weeks at the most.
You should all prepare yourself and focus on ensuring she is kept comfortable and pain free. You should also consider, does she wish to die in hospital, at home or in a hospice? This should be prioritised now because any deterioration could prevent transfer to her preferred choice.

I'm so sorry OP. 💐

I'm so sorry.

My experience is limited, but I remember that my mum had excellent hospice care and the nurses were quite experienced in knowing exactly what to expect. They were able to tell us based on my mum's appearance and how she said she was feeling, that they expected she had about a week left, or she was in her last few days etc. The morning she died, they knew she probably had only a few hours left and were able to let us know so all of us could be by her side.

They were also able to tell my mum and us what she would be experiencing in the days to come: how much of her time she would spend sleeping, whether she would dream, whether she would enjoy food, how alert she was likely to be when awake. That helped us understand the little things we could do to make her more comfortable, and to reassure us about whether she would suffer, and how we could tell if she needed more medication.

If you have a good palliative care team, they will be able to answer your questions better than the usual doctors can.

This is not ethical and would lead to the doctors involved being investigated. She would not survive and the doctors will know this from their experience however as they cannot predict absolute certain death they will only say her chance of survival is very low.

Hi OP, we went through something similar with my Father- he was too unwell for a general and they couldn’t use a spinal due to the blood thinners he was on, plus the prognosis that he wouldn’t have recovered to any decent standard of living, so the decision was made to move him to EOL care.

It took about ten days. I won’t lie, it was a distressing time for my Mum and I but I don’t think he was aware of much of it tbh.

It was massively shocking and I am not surprised you feel bamboozled. Just in case you feel any sense of failure- you 100% didn’t let your Mum down by not being able to think of questions in such a shocking moment, and you are clearly a brilliant advocate for her just by coming and asking for advice here.

There are some well meaning posters here without medical knowledge or experience of comparable situations posting stuff that like i say is well meant but I’m not sure how helpful it actually is in your situation. Please read @olympicsrock ’s excellent posts, and know that you’re not alone- those of us who have been through are here holding your hand through the coming days.

Yes but I think the OP's point is that if her mother does need to pass away, then that she should do be allowed a good death- painfree and not riddled with infection.

The blood thinners are for the blood clot in her mothers leg which is dying (turning black) as a result. One week without blood thinners and the whole leg would be dead and amputation would not be an option. In fact, one week without blood thinners and her mum would be dead.

You can have a pain free death while having an infection. They use a syringe driver which has morphine and midazolam.

Quite often they don't operate if the persons circulation is too poor as the stump won't heal and then you'll be back to square one and in an even worse state. They will have taken all of this into consideration.

I do not want to give you false hope but we had this scenario with MIL at a similar age. Consultant said if it was my mum I wouldn't attempt surgery so DH said no surgery. MIL wasn't fit to consent and we mentally started to prepare ourselves. We were stunned when after a few weeks of some super special dressing (on the NHS) the gangrene disappeared and she went on to live another year. I would just ask the question have all treatment options been thoroughly considered before the palliative path is taken.

I think one to two weeks, but they will ensure she is comfortable and not in pain. Morphine will keep her comfortable. I'm so sorry, its one of those awful situations where nothing can be done except make her comfortable. I think when your life is centred around trying to breathe and costantly in and out of hospital with all the nasty interventions needed, you really don't want to continue this life. She is probably more sad that you will be losing her. I think for herself she may want peace now.