End of life pathway please help

[Notmanyleftnow]

My mum was told she had probable metastatic cancer in three places in March she declined further treatment or investigations. She developed neurological choreiform sytmptoms but refused tests suggested by neurologist. She wrote an advanced statement saying she does not want to have investigations or treatment into cancer. Or be in hospital
A week ago she collapsed and is now in hospital. She cannot walk and has lost some speech. She had planned to take her own life, but left it too late.

I told them about the advance directive and that she doesn't want to know what's wrong with her. But now I think did she just mean the cancer and the brain thing? Is there anything else????
They put her on end of life pathway without telling her, I assume because of the advance directive. But what if it's because of what I said??

i visited today and She remembers doing the advance statement but now says I want to know what's wrong with me and what's happened to my speech. She said it three times so I told them and wrote it down. Nurse said doctors will talk to her Monday. I gave her the note stating my mums new wishes and they're putting it in her file.
I am terrified I have fucked all this up and that I should have told them to tell her before this.
I am in torment. The whole situation is killing me. I am now bleeding rectally which is probably from constipation as can't eat properly.
I can only visit every other day as she is an h9ur and a half away and I don't drive because of autism and visual processing issues I have had lifts and spent 500 in taxis. I have asked them to move her nearer to me but it depends on bed availability.
She's stopped drinking because she doesn't like the thickener they put in her coffee. She's not eating because she thinks she has but she hasn't.
I feel so guilty like it's all my fault.
Will they not give her fluids through a drip because it's end of life care? Dying of thirst is supposed to be awful.
Please help me.

Yes OP she is definitely dying. They don't put people onto end of life pathway if they aren't already dying. It's not something that occurs just because a person has a terminal diagnosis. So at this point it really doesn't matter what she dies of, if you see what I mean. If one thing makes it happen faster than something else, the difference is measured in hours or days, not months or years.

Oh thanks good idea

Oh wow oh my God really. So it doesn't mean they are ending her life? It means she is already dying and they can't save her??

I must sound very stupid. But autism means I can't hold onto meanings of abstract jargon.

They aren’t ending her life. That would be illegal. End of life pathway is to help ease the dying process as much as possible.

Thank you. So there really, truly isn't anything I can do or could have done differently to save her.

OP this is hard, especially this time of year. You are doing an amazing job keeping things together and your mum is so lucky to have you. Please be well and try to take care of yourself.

Hi,
In regards to the thickener, could you put it in cold drinks?
I was on it when I lost my swallow and I refused all hot drinks because it's absolutely fucking rank. It's not too bad in fresh juices and freezing cold cordial, disgusting in water. You need to find things that she WILL drink with the thickener.

They will have put her on the end of life pathway as they are expecting her to die. There is no further treatment for her cancer. It doesn't mean it's going to be in the immediate future i.e tomorrow

Oh sweetheart you have, and are, doing your absolute best for your mum. I am 52 and this will be my last Christmas due to cancer. I also have an AD in place and have said I want to die at home. As time goes on however and new symptoms arise I’m now thinking that this might not be the right decision. Your post has made me realise I need to let my DH know I’m feeling this way. Keeping you and your DM in my thoughts.

Definitely. Explain that she is not drinking the thickener and she would rather discuss the risks of not using it and enjoying drinks in the way she chooses

There is a time and a place for thickener believe me but in her situation I would be accepting the risk of not using it

Oh bless you, thank you and Im so sorry. I hope you are able to share everything with your DH and find the best plan for yourself. Sending love. 💐

In that case - I would definitely try and get a variety of different fruit juices and cordials and put the thickener in, how many scoops is she on? I was on 2 and I thing stage 7 food
I am still on a special food but don't have to use thickener but I do definitely recommend trialing it in cold drinks because to be fair in tea and coffee it is absolutely disgusting.
I'm 31 by the way.

Absolutely it can. Please don’t feel anxious and guilty about your mums situation. Your mum is perfectly ok to want to change her mind, often because towards the end people want to know what it going to happen. She would have been determined to be of sound mind when she signed the directive and palliative care doctors and staff will have experience of your mums situation.

End of life pathway is quite straight forward, if you are not sure what will happen ask someone to go through it with you. It may be a good idea to be with your mum when the doctors talk to her so you know what is said.
The staff are very careful what they say and will ask your mum what she understands about her current situation and exactly what info she wants.

I recently lost my sister and we supported her through end of life. It is a different process to “normal” treatment. If your mum is moved to a hospice they usually have a therapist who can help you through the process providing support relevant to the stage your mum is at.
End of life pathway doesn’t mean she is going to die next week, but they will give you a bit of notice if they think she has hours to go.

I found that knowing what was going to happen meant that we approached the end calmly and able to support my sister and each other. Our main aim was for her to pass peacefully and with dignity.

In a hospice environment close relatives can often stay overnight towards the end. They put an extra bed in my sisters room and one of us was with her 24/7 over her last couple of weeks. The day she died we effectively had a sleep over the previous 24hrs. We watched TV, read to her and chatted as if we were sat in her living room. It felt very natural, the staff were on hand to move her and provide pain relief but most of the time they didn’t intrude. I can’t think of a better way to go, surrounded by your loved ones in what felt like a very caring and supportive environment for both the patient and the relatives.

Yes, we don't have euthanasia for humans. It means she's past the point of no return and there's nothing they can do except ease her passing. There's no point in prolonging things, which is why they've withdrawn all treatment including intravenous fluids, especially with her having an advanced directive saying no cancer treatment. They will put in a thing called a "driver" in the last few days. You won't get any sense out of her after that. It's a cocktail of drugs to manage the symptoms of death so she doesn't suffer more than is necessary, but it's not a lethal injection like you'd give to a dog that got run over by a truck to put it out of it's misery.

I am so sorry for what you are going through and how alarming it can be xx

Cancer can absolutely take away your mobility etc even without brain metastasis. It's the body shutting down and our organs failing.
An end of life / palliative pathway is started when someone is terminal, when there is no more effective treatment options.

So, they will look to adjust and prescribe medication to take care of the symptoms you can expect during this time.
Changes in eating, drinking, mobility, bowel movements and passing urine, pain, agitation - all these things are constantly monitored and treated.
Eating and drinking becomes something we don't necessarily need to do at the end of our life - lots of families think it is cruel treatment but as the swallow decreases and the body shuts down we just don't need it. Mouth care can help.

Xx

Some medication came be administered via a syringe driver, a continuous flow of medications to keep patients settled.

I've known patients be able to walk around with drivers as it controls their pain. Sometimes they are put in at the very end for sever symptom control.

No, nothing you could do. When cancer spreads that's it, basically. Game over. She has multiple secondaries. And maybe more they don't know about. Cancer doesn't just grow there causing havoc because its in the way, it isn't benign. Cancer is actively harmful to a person. It causes the areas it's in to stop working properly. If one part/organ isn't working properly, nothing else can function properly either because the body is designed to work all parts together as a whole. Her body is failing her. It happens to us all at the end, whatever the cause. If nobody did anything other than offer her food and water, she'd still die. At least in hospital she can be kept clean of faeces/urine and given strong painkillers etc if she needs it. It's more than you'd be able to do by yourself if she was at home with only you.

You've done your very best but not everyone can die at home if their needs outstrip the support available. Your mum's medical history was already very complex and now she has had a disabling, acute incident so, whatever the reason, I'm not surprised you could no longer manage. Not eating and drinking is a normal part of dying. Your own appetite will be suppressed due to stress and grief at what is happening but make sure you keep your fluid intake up and take something for constipation. I'm going through something similar with my mum so know how difficult this is.

Thank you all for taking the time to explain and reassure me.

@Yoonimum I'm so sorry you are going through similar.

I didn't know how little I knew. About cancer and about death.

I didn't know how little I knew. About cancer and about death.

I'm sorry you had to find out like this 💐.

Death can go all kinds of ways. Someone I knew died ages ago all of a sudden and they didn't know they were ill. That was from a different condition. It was a shock to all who knew them. One of my relatives died in their sleep when really old, they'd been ill for years with a serious lung condition. None of us knows how exactly it's going to go until our time comes.

There's something else to warn you about OP. IDK if it would happen with your mum or if it depends on the person's illness, maybe some people it doesn't happen to. Perhaps if there's any nurses here they can explain better than me. But there's a thing which can happen where the person seems better, not completely back to normal but a lot lot better, quite soon before they die. So if that happens don't think the doctors are wrong and she'll be fine, she won't. Just telling you so it doesn't shock you if it happens.

It’s normal in the UK to not know about death unless you work in that field or have watched a love on die.

People on are only put on the end of life pathway when they’re actively dying. You can ask your mother’s nurse how long she expects her to have left, they’re not always right but often they know. Tell them you have autism first and that they need to clear with you.

Oh. Thank you. I wish they'd explained that, but maybe it would have been obvious to someone who isn't autistic.

Maybe explain to the staff that you are autistic. As a clinician, if I know a patient or advocate is autistic I know that they don’t always understand some of the ways that we explain things and that we have to be much more literal.

recycling is correct about the apparent improvement not long before people go downhill. It can be hours, days or weeks before death. My DSis seemed to make a miraculous recovery a week before she died. We called it the “trifle effect” because after being quite poorly and not eating she sat up, demolished the trifle she had been given for lunch and for a few days seemed much better. So much so that they organised for her to go home so she could die at home. It didn’t last long and the day before she was due to be moved she deteriorated rapidly.

The other thing you need to know about is “terminal agitation”. This refers to the restlessness they experience. In my sisters case she would constantly mess around with her bedding and we would spend hours changing her bedding, her position, her clothing and the position of everything until she was comfortable. She would then settle for a short while before it all started again. It is frustrating for everyone around but just go with it. Don’t be upset if nothing you do is right.

Don’t be afraid to ask for pain relief or something to calm her down. The two drugs used are usually opioid based ( morphine or similar) and sedatives. The drugs don’t speed up the process and are not a form of euthanasia. It is the cancer that will cause her to die and not the drugs. The drugs will just make it more comfortable and less distressing.

Towards the end your mum will go into a deep sleep or be unconscious most of the time. She will react to pain and you can see this in her facial expression. She may appear to be in pain or struggling but if her face is relaxed then it is just her body shutting down.

It is hard to watch and be part of, but being with her and supporting her is your last act of love. Afterwards you will be glad you were there to help her through it.

She will be able to hear you and feel your touch so even if she appears unconscious talk to her, read to her and hold her hand or stroke her arm or maybe her hair.

While she is still conscious tell her the things you want her to know. Help her to tidy up her hair or help her eat. Watch the TV together, tell her the gossip. It is ok to laugh and it is ok to cry.

The last two weeks we spent with my sister helped us tremendously. Your mum may want to talk about her funeral. Have a note book ready to write down her wishes. If she doesn’t want to discuss it, ask her if she has left instructions.

Most of all, don’t be afraid of asking the staff questions. They have been through the process countless times and can explain what is going on. Death should be as normal as birth but it has become very clinical. It doesn’t have to be. I can think of nothing better than being surrounded by your loved ones as you die. Everyone deserves a good death.

I found some staff were more direct than others. Older more experienced doctors tend to be kind but very direct. I also found if you ask specific questions they’re clearer. They’re also trying to work out how much the person asking wants to know.