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To not want my mum to be put on the medical pathway?

(91 Posts)
ClippedPhoenix Sat 30-Mar-13 18:29:00

My mum is dying. I accept that and she's in hospital. They want to put her on the "pathway" and take everything away. Im in agreement with taking the antibiotics etc. away as of course she won't be cured. Im not in agreement with them taking her fluids away. She is lucid and comfortable. My thoughts are that she will go of course but I've heard that taking fluids away is very painful and maybe its me wanting her to sit up, talk to us then go but I'm so reluctant for them to give her so many drugs (for the pain) that she will be in a coma for her last days. Could someone explain this?

thebitchdoctor Sat 30-Mar-13 18:35:43

In the nicest possible terms YABU. I'm really sorry you're going through this, I lost my mum last year.

The pathway only withdraws fluids once the person is incapable of swallowing fluids, not before. Once she is incapable of swallowing fluids she'd be too far gone for them to do any good and in fact can do her harm. She can choke on the fluid and also the way people die means excess fluids accumulates in the fluids causing the 'death rattle' and its akin to drowning. The pain medications are started at the lowest possible dose that she can be comfortable, they are not there to put her in a coma, it's purely to treat her symptoms and to provide nursing care that will make her last days comfortable (mouth care etc).

The pathway is to allow a dignified death and nothing more. It doesn't hasten death, it doesn't cause death, it's just makes the inevitable outcome much better for the patient and for the family.

Patients have to satisfy certain criteria even to go on it. They wouldn't put a patient on it unless they needed to be

Again, I'm really sorry for what you're going through.

ClippedPhoenix Sat 30-Mar-13 18:39:00

shes not incapable of swallowing fluids she just drinks like a little bird and not enough. Is that reason enough?

MammaTJ Sat 30-Mar-13 18:40:13

thebitchdoctor had put it very well, much better than I can.

I just wanted to reiterate, it is not a hastening of the end, it is a not making it a long and drawn out affair, in my opinion the kindest thing to do when death is inevitable.

Putting it in the form of a 'pathway' just formalises what has really always happened, certainly in my 28 years of care work. In an ideal situation it has always been like this, they have just created a document stating that.

I am sorry you are going through this.

Sirzy Sat 30-Mar-13 18:42:27

I agree with the bitch doctor.

Fluids won't be taken away, they simply won't be forced on her. If she wants to drink she can

SchroSawMargeryDaw Sat 30-Mar-13 18:43:26

Clipped I am so sorry you are going through this. sad

I think the pathway is a kinder end, fluids aren't removed unless the person is incapable of drinking.

Are you saying they are removing fluids anyway? If that's the case then I don't think that is right although I am sure someone more knowledgeable will know.

ClippedPhoenix Sat 30-Mar-13 18:43:40

So theres no sense in giving her fluids intraveneously and she should be able to drink them herself? im just trying to understand this. My sister said that if she was at home then she would die anyway due to not being able to do anyting for herself.

HavingALittleFaithBaby Sat 30-Mar-13 18:43:41

I will try to explain but actually the staff should really explain to to so you understand it...
Firstly I'm sorry to hear you're in this situation.
I'm a nurse in elderly care so I deal with very ill patients a lot. I think the LCP is wonderful personally. If someone is very ill, we as nurses will often recognise that medical treatment isn't working. At this point we will still be giving medications, giving IV fluids, checking blood pressure hourly (the last can be particularly distressing). When the decision is made to put someone on the pathway, we can minimise how much we do: no more Obs, no more painful procedures, just ensuring someone is peaceful and settled. If someone is still alert enough, we will always offer them food and drink but we don't have to push them any more. We will monitor closely for pain and give pain relief if they need it but we don't give so much it puts people into a coma. People tend to gradually slip into unconsciousness as they deteriorate.

IV fluids are usually stopped which seems hard but is often kinder. As someone is dying, their systems shut down. The heart doesn't pump as effectively, the kidneys don't work as well. If you put too much fluid into someone and they can't excrete it, it can pool in the tissues so the person becomes quite swollen (which isn't nice). We can give them sips to drink if they want it and always give mouth care so their mouth feels fresh. The thirst sensation tends to fade anyway as someone gets sleepier.

I would insist on speaking to someone senior about this decision. You need to be comfortable with it but I would encourage you to consider it. Fwiw, my Mum had cancer and I actually asked for her to go on the pathway. She had a very peaceful, pain free, dignified death which is all I would ever hope for for a loved one and anyone I look after. Hope that helps a bit.

iseenodust Sat 30-Mar-13 18:47:42

Sorry to hear you are facing such a difficult and emotional time. If your mum is still lucid you need to talk to her about this. She may have indicated it is something she feels comfortable with or it may be doctors being patriarchal. (DH said to his father's consultant 'do we need to discuss end of life decisions?' when his father was in end stage heart failure and the consultant said 'when the time comes I'll make the right call'.)

If your mum understands and is happy with the pathway approach then I'm sure you'll respect her feelings, hard as that is. If she understands and doesn't want it now or especially in the near future, consider between you whether she should appoint you power of attorney for medical matters asap.

ClippedPhoenix Sat 30-Mar-13 18:50:43

Ok, i understand it now as mum is very sleepy and having bouts of alert and madamishness grin which makes it so hard to take everything away from her.

iseenodust Sat 30-Mar-13 18:50:53

You may want to see if she is fit enough to be moved to the local hospice for her remaining time or you could contact them for information/support for yourself.

WowOoo Sat 30-Mar-13 18:52:21

So sorry to hear you're going through this.

It's a bit of a blur to me but I remember nurses telling me that stopping fluids was one of the last things they do.

Thebitchdoctor above said denying water doesn't hasten death.

They told me that it does, but in the nicest way possible. It was to minimise her suffering rather than prolong her life.

I'm not disagreeing with thebitchdoctor...just saying what they told me.

When my mum was in a coma, I didn't stop holding her hand or talking to her. Even if there was a teeny chance she could hear me I wanted her to know how loved and lovely she was and what a fantastic mum she'd been to her sons and daughters.

Oh, ClippedPhoenix I want to give you a huge hug. X

ClippedPhoenix Sat 30-Mar-13 18:53:24

the hospital has said that shes too weak and they want to keep her. they all know her on the ward and laugh with her.

HavingALittleFaithBaby Sat 30-Mar-13 18:55:06

I think you have to try to change your thinking - the staff aren't taking anything away from her - if she's alert enough she can eat and drink, I'll get my patients whatever they ask for if I can! - it's just accepting the inevitable - life is effectively taking this away from her but it sounds like she's settled and comfortable which is really good.

Do ask the staff if there's any possibility of 'fast track' to get her out of hospital if that's something she'd like. Some people can go home with carers, some to a hospice, some to care homes. It's worth asking.

HavingALittleFaithBaby Sat 30-Mar-13 18:57:41

Ah x-posts. She sounds wonderful and like she has great spirit. Try to focus on spending time with her, laugh with her, talk to her. I always assume people can hear right to the end (my Mum didn't open her eyes but could wiggle her toes so I'm sure she could hear us!).

I know it's not very MNetty but Have a huge <hug> thanks

ClippedPhoenix Sat 30-Mar-13 18:59:41

Ive just rung her and shes telling me how much she loves me and how much she loves her grandson. shes telling me that she had some soup today and feeling grand grin

ClippedPhoenix Sat 30-Mar-13 19:01:27

im up there tomorrow as too emotional today and other sisters are covering.

YellowDinosaur Sat 30-Mar-13 19:01:53

What thebitchdoctor and havingalittlefaithbaby said (i'm a hospital doc too)

I was also going to say that if your Mum is lucid the doctors may have discussed this with her.

It is a common misconception (thanks daily mail) that the lcp drugs people to death. This couldn't be further from the truth. Before it many people died in distress, being forced to have unpleasant interventions (such as putting in needles to give intravenous fluids, regular blood tests, and being disturbed for hourly observations) while not having the symptoms associated with dying well managed. The lcp is a tool to alleviate all that. As has already been said most dying patients don't become distress without fluids which is hard to imagine as being thirsty is pretty unpleasant. However if it is making them distressed the pathway accounts for this too and fluids can be given in less invasive ways.

So sorry to hear you and your family are going through this and I send you lots of support and best wishes for a peaceful end for your Mum. I honestly think the lcp is the best way to achieve this xxx

ClippedPhoenix Sat 30-Mar-13 19:09:40

mum is on patches for the pain at the moment and just spoke to my sister, she didn't have a bowl of soup, just a spoonful, bloody fibber that she is!

ClippedPhoenix Sat 30-Mar-13 19:18:21

mum even told me yesterday that she quite fancied one of the doctors! I have a message from her on my phone that i dont want to listen to. I don't want her to die, i want her to live forever.

b4bunnies Sat 30-Mar-13 19:20:45

more hugs for you.

my mum was on the pathway but when the government changed the rules the hospital had to take her off.

its a difficult time. many hugs indeed.

coughingbean Sat 30-Mar-13 19:25:18

thanks and hugs for you

BumpingFuglies Sat 30-Mar-13 19:25:48

Phoenix I'm so very sorry. The LCP is very carefully thought out to minimise distress or discomfort. Of course you don't want her to die, love. It's so hard. Listen to the message and save it - you'll be glad you did.

Get lots of information, or get someone with you who will. How lovely that she is still joking with you.

MN is here for you - make use of us.

ClippedPhoenix Sat 30-Mar-13 19:38:57

I want my mum to get up and say what on earth is all this fuss about.

She keeps saying how tired she is, in the next breath she tells us that shes going to make the effort to get better.

I want a damn miracle, but you never know

ClippedPhoenix Sat 30-Mar-13 19:40:15

how dare she, she could at least make me a cup of tea grin

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