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Original poster

My mum wants to die and hospital are keeping her alive

38 replies

roberta3 · 12/02/2007 11:59

My mum is 85 and suffering from renal failure. She has decided to refuse any treatment and wants to die. We were keeping her comfortable in sheltered housing and she was slowly fading away. She has a very strong faith and feels she will be reunited with my dad soon.

All was well until last week when she had a fall. She was admitted ot hospital and has cracked her pelvis. I wanted to bring her out but felt we could not cope with the pain management, turning, etc, etc. More importantly SHE had got past the stage whether she cared whether she was at home or hospital so I felt okay that she was there.

However, the hospital staff have had her on a drip till she's bloated, are trying to feed her and have given her such strong drugs she has periods of total confusion thinking any male visitor is the gardener,etc.

What should I do? Will private nurses nurse her at home (the nursing homes around here are awful). Can we get the hospital just to keep her comfortable and not give her any agressive treatment. Please give me some advice and thanks for your patience in reading such a long message!

OP posts:

Tommy · 12/02/2007 12:04

so sorry to hear this roberta - don't really have any advice I'm afraid - just didn't want you to think you'd been ignored.
I don't know anything about this sort of situation but surely if you talk to the consultatnt or whoever's in charge, you should be able to get some answers?
Good luck

Twiglett · 12/02/2007 12:05

what have hospital said .. I assume you've talked to them and put your case .. that would be the first step

does your mother have a DNR / Living Will?

Does she have lucid phases when she can do either?

PollyLogos · 12/02/2007 12:10

Very sorry to read what your and your mum are having to go through Roberta. I don't really know what happens in this case. I too would suggest talking to the consultant.

Not sure if they will do no active treatment, although I think they write not to be resusitated on the notes in certain circumstances

Original poster

roberta3 · 12/02/2007 12:11

Talking to her hospital doctor this afternoon. Can't believe the difference in the care from her GP who totally respected her wishes and that of the hospital who appear to be treating her as a tick list of symptoms which must all be addressed individually.

Spoke to her GP this morning and because they've documented her wish to die that should carry a bit of 'weight' with the other medical staff.

Feel sick at the thought of going to an appointment in 2 hours time where I've fighting for my mum to DIE. I know it's what she wants but it all feels wrong. So much for dying with dignity...

OP posts:

mateychops · 12/02/2007 12:20

Hi Roberta, I'm so sorry to hear what you are going through. Following a heart attack, my Gran suffered renal failure and spent the next 6 months on the renal ward. After a number of call-outs, she woke up one Friday and said that she wasn't going to have the dialysis today. The doctor who was on advised her that she would be very ill over the weekend, if she wanted to delay to Monday. She said to him that she'd been apart from her husband long enough. So, while the hospital did not help her die officially, the doctor on that day knew exactly what her intentions were. She died on Valentines Day 12 years ago, and a more appropriate day you couldn't get for such a great woman.

I'm so sorry that you're Mum isn't getting the same level of dignity that my Gran was awarded, and can only suggest you book an appointment to meet with the Doctor in charge of your Mum's case. You can outline what her intentions were, and ask that they try to respect that as much as possible. I think sometimes medical staff are frightened of legal action by family.

Sorry, really long post back to you.

Twiglett · 12/02/2007 12:21

I'm so sorry for you Roberta .. it must be terrible

I think its all tied into the hypocratic oath and the concept of preserving life at all costs . .. I really think we should address the concept of death and dying with dignity

I know this is a terribly difficult time for you but you are definitely doing the right thing .. you are fighting for your mother's right to make her own choices ..

Original poster

roberta3 · 12/02/2007 12:32

Mateychops you just made me cry - not too difficult at the moment! I would love my mum to die on Valentines Day because it was also my dad's birthday on Feb 14th. Can't think of a better time for them to reunite.

We have got a no resuccitation (sp?) order written into her notes but actually letting her slowly die seems to be treated totally differently.

I'd love her to want to live to see my DS's grow up a little bit more but I totally respect that this is no longer enough to keep her here.

She was telling us up until her fall last week, that she'd had a lovely life, a lovely husband, lovely children and lovely grandchildren so what more could she ask for? I'd just like her to have the chance for the 'best' death possible.

OP posts:

noddyholder · 12/02/2007 12:40

I really feel for her i have had renal failure twice and it is pure hell to go through the treatment if you know you aren't going to have a transplant.TBH that is what kept me going and I don't know how anyone would survive it otherwise Much love to you and her for a peaceful end of her choice xx

Donbean · 12/02/2007 12:44

Ok, so you now have an appointment with the consultant, thats good.
Write down what you want to say to them. Just to promt you as you may get upset and lose your thread.

There are families who feel that this is the best route for thier loved ones out there and who do this every day.
It is not new to the Doctors.
They must facilitate the best route for thier patients and this may mean supporting them towards the best most comfortable and dignified death that they can.
That is not euthanasia, but will follow discussion between yourselves and the Doctor.
This decision will not be down to you and this is for the very reason that you have to live with the guilt which is just not fair as you are acting out of love.
If your mum is just not able to get well then they will agree with you and will discuss the future care with you.
Dont be scared, you are incredibly brave.
It is the right thing to do so have courage.

cedar12 · 12/02/2007 12:44

I am so sorry that you and your family are going through this. I am a nurse and often get so frustrated about situtation like this some drs seem to think they have to been seen to do everything possible even when some people just want to be kept comfortable.
I hope you get to talk to her consultant this afternoon, if not push for this. Your Gp sound great so try and keep him envolved as much as possible.
You sound like a wonderful daughter
helping your mother get the care she deserves.

DrunkenSailor · 12/02/2007 12:46

This reply has been deleted

Message withdrawn

mateychops · 12/02/2007 12:50

Good luck with your appointment, thinking of you.

(and I was crying too)

Kittypickle · 12/02/2007 13:05

roberta, I can't be of any help but just wanted to say that I am thinking of you. We have got a horrendous situation going on with my MIL in a Spanish hospital at this very moment, my DH is out there until goodness knows when. I do hope that the staff are receptive to what you say and I think you are doing the right thing saying this.

Original poster

roberta3 · 12/02/2007 13:23

Friend has just picked up youngest DS so I'm off to the hospital now. Will let you know what happens.

Thanks for all your support. Have a list of questions prepared so hopefully I won't turn into a quivering wreck and will fight her corner.

OP posts:

DarrellRivers · 12/02/2007 13:31

Good luck Roberta, for what it's worth I think the hopsital/consultant will listen to you and it will be listened too, most are not into prolonging life against all the odds, and they will want to make her as comfortable as they can.
This will be a joint decision between you all and little things, like not being on medication which can make her confused makes all the difference.
All the best, everyone should be able to die with dignity, calm and painfree and surrounded by those they love

Crazydazy · 12/02/2007 13:32

Just wanted to say what lovely pieces of advice people have given on this thread. Must be such a horrible decision to have to make and my heart goes out to your poor mum.

I hope she gets the peace she deserves.

prufrock · 12/02/2007 13:33

My FIL died recently - eventually of renal failure caused by various cancers. He had been treated agressively whilst living at home for the cancers, but once his kidneys failed he was moved to Trinity hospice in London who were so wonderful (I'm welling up now thinking of how well they treated him and his wife and my husband.) If at all possible I would ask to gte her moved to a hospice. Not only will they not try to cure her, but they will be far better than the hospital at providing palliative care and the neceesary emotional support for your Mum and you.

marthamoo · 12/02/2007 13:49

Like prufrock I have nothing but admiration for the hospice system. My Mum's best friend was allowed to die peacefully, with minimal intervention and with such dignity in a hospice last year.

Is that a possibility for your Mum, Roberta? I'm afraid I don't know exactly how it works or what the criteria are for going into a hospice - my Mum's friend had been at home but her dh and ds could no longer cope; she was only in the hospice for a few weeks so it was very near the end.

So awful for you to be going through this - take comfort in the fact that you are fighting for what your Mum wants and what is best for her. I hope you can find a way to let her go peacefully and with dignity.

Original poster

roberta3 · 12/02/2007 22:59

Well we met the consultant and he was initially very defensive trying to justify why they'd given her so much treatment. We said we understood why they'd done it but we wanted him to appreciate that my mum had insisted she didn't want any treatment but wanted to die peacefully without medical intervention.

Initially he said that he needed to hear that from her rather than us. As she was so confused now, he couldn't be sure it was her wish not to receive treatment and had we got her to sign a piece of paper stating this when she was of 'sound mind'. Unfortunately we hadn't (I didn't actually think such a 'living will' had any force and was currently becoming legislation). Anyway he eventually agreed that as she had discussed her wishes with the GP a few months ago as long as the GP had documented the conversation(s) he was willing to withdraw treatment and keep her as comfortable as possible.

So the drip is now out, the drugs are at the bare minimum and we're on the next stage of the roller coaster.

Thanks so much for confirming that fighting for my mum's dignity and for her wishes to be fulfilled was the right thing to do.

OP posts:

DarrellRivers · 12/02/2007 23:03

Oh Roberta, that must have been a hard discussion but well done, it sounds like your mum would be very proud of you today.Good luck with everything, big hug and remember to look after yourself as well.

PollyLogos · 13/02/2007 06:04

I'm sure it must have been hard for you Roberta, but even so you are following your mum's wishes. I sincerely hope that my children will treat my decisions when i am old with the same love and respect that you have showed.

I will be thinking of you and you mum in the coming months.

Flower3554 · 13/02/2007 06:22

Can I just add that this thread made me sit down with my 2 grown up DD's last night and discuss what my wishes would be in this situation. I would never have thought of it otherwise. Thank you.

I intend today to put my wishes in writing so that my children hopefully will not have to go through what you have so bravely born.

I know your Mum would be proud of you, big hugs to you.

Catbabymummy · 13/02/2007 07:08

My sympathies with you, it is very hard to see your parent have to suffer unnecessary.
A elderly relative of my husband committed suicide in hosiptal, he was very ill, getting worse and was looking forward to a gradual slow decay, and had recently lost his wife. He wanted a death with dignity which our current medical system denies to all except the worst terminal cases (before which they have suffered months of agony).
Best wishes to you and your family, and I pray your dm's pain is relieved. Remember your loved ones never really leave you as long as you remember their love for you.

mateychops · 13/02/2007 14:09

Roberta, you're such a tough cookie, well done. Your mum would be very, very proud of you.

noddyholder · 13/02/2007 15:25

Good for you.Hard as it is you have made the most loving decision Dialysis is a life saver in certain situations but is certainly not a way of life that could be sustained for long without extreme discomfort and unhappiness.Well done for being so pro active in her care there are many old people who would love to have someone like you beside them at this time xxx

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