Dying with dignity

[NotMyWay]

Currently sat by an elderly loved one's bedside watching them die. Two days of thrashing around and begging me to kill them. Doctors are doing what they can but it's horrific. We don't treat animals like this so why are there not better options for end of life care?

I don't agree with assisted dying.

I do agree there are lots of pain killers and other drugs to help with pain and agitation.

I'm not sure why you have to be there to hold your relative down? If you agree with assisted dying just say your goodbyes and walk away? Time will do the rest.

I think if the nurses had to deal with it alone you would find that a Dr would materialise a lot quicker to administer the required drugs.

OP, I am so sorry you and your relative are going through this. Please lose your shit with the nurses and insist on a doctor coming to administer the necessary drugs. Your relative should not be suffering.

You might need to tell the nursing staff you will be contacting your MP about this issue and, if you can bear to, take photos and videos as evidence. Let them know you will do this.

I hope the end is very soon and peaceful.

If you agree with assisted dying just say your goodbyes and walk away? Time will do the rest.

The whole point is keeping them in this way is heartless, walking away would be just as heartless no?

Bit if a daft post IMO

This sounds so barbaric. I really feel for you and hope you can get someone in authority to do the right thing for your relative.

My DF is 93 and was recently told by his doctor that he has just months to live. He is terrified - not of death itself, but of dying in this way. I really hope he doesn't have to suffer in the end. The thought of it sends my stress levels sky high.

Wishing you success in finding someone to deal with some compassion

Last night I told the nurse and junior doctor (not even from the palliative team) that there had been a failure in their duty of care towards my relative and that their decision to move to end of life was predicated on the basis that they would be kept comfortable. I truly do not believe that they would make the same decision knowing it would be a slow and painful death with inadequate medication.

Further drugs were given around 1am and it was a much calmer night.

Nurses frosty and show no compassion. Left me with only a hard plastic chair to sit on all night, head resting variously on the sink and paper towel dispenser. Was snapped at for looking longingly through the door of the relatives room / patient lounge (closed due to Covid) whilst contemplating whether I could move a proper chair to relatives room.

🤬🤬🤬🤬 is what I want to type.
I am so so cross on your behalf. What a bunch of tissues with zero compassion. They shouldn’t be in the profession.
I’m so sorry. Do keep complaining and write a complaint to everyone and anyone from the local MP, through to PALs.
Glad to hear a small something was done. But really they can’t even provide you with a comfortable chair and a pillow??

I really hope lots of people read this thread and see this is the reality of what people are dealing with.

I’m so sad for you that you and your relative are going through this.

The last couple of days of my mums battle with bowel cancer her bowel burst and she essentially lay there in unbearable pain. She was on oral morphine and had pain patches but obviously they weren’t touching the pain by that stage. The hospice rang the GP to try and get a syringe driver sorted for her but by the time they had issued one, someone had to collect the drugs from the pharmacy which took hours due to being controlled drugs etc etc and it essentially took a whole day to somehow get it sorted out - I begged them to do this at 10am in the morning and by 10pm that night she still hadn’t been set up on it. She was barely with us by then - mouth hanging open, eyes open but not able to communicate and I still have nightmares about the fact she spent her last day like that and I couldn’t do anything about it. We didn’t have the best relationship but I wouldn’t wish that on anyone.

Sometimes I wish I had just encouraged her to drink the bottle of oramorph she had stashed in her bag from when she’d been at home. It would surely have been a better end.

Too much bureaucracy and red tape and too little compassion.

Hi OP, just here to send you love. This is a shocking thread.

Hi OP, I've been there and I'm so sorry. I feel very strongly that we don't get death right in this country. It is barbaric and inhumane. I think however difficult it is, kick up a fuss. It's not just poor nursing, it's criminal in my mind to let people suffer like this. If you make a nuisance of yourself you might get better care. I am very strongly pro-euthanasia because of this issue - it should be possible to have compassionate assisted dying and have really strict rules in place to protect vulnerable people.

I am disgusted that your loved one and yourself are in this horrific situation.
I am a vet nurse and my profession do our best to show compassion and kindness at end of life .
Literally animals are treated better .
When the time comes i would raise hell at the people who have failed you both , the words they hear from you may stop them treating others the same in the future.
I hope your loved one is soon at peace.

I hear you. I wish I could help you.

Lovely nursing team today. Really concerned and doing their best. But no doctors around to review. On call doctors dealing with emergencies and no palliative care doctors on site this weekend. Said I would be making a formal complaint when the management offices reopen tomorrow and there was miraculously a review 10 minutes later.

Relatives has been much calmer the past 3 hours but 4 FUCKING DAYS!!!!!

There is an extra nurse coming in to provide one-to-one overnight tonight.

I am so sad for you and your relative. This is an utter disgrace on the staff and the hospital and NHS. Sadly it does not seen to be a one off. It looks like you will have to speak strongly to the staff to get any help for the relative. Some folk are brought up to be polite and others take advantage of that!
Thinking of you and your relative

Such a shocking thread. I am so sorry that you and your relative are going through this OP. When this is over, I do hope that you have the strength to complain still, OP, for the sake of all of those patients who will follow.

This thread needs to stay in active convos, and for others to see and learn from it. (I always remember going to a talk by a colleague of Dame Cicily Saunders, who founded the hospice movement, and who stressed in that talk, that no-one should ever need to die in pain. How can things have gone so wrong?)

Harold Shipman has a lot to answer for, if it is true that morphine has been so tightly limited, since his dreadful career.

Sending best wishes for you at this dreadful time.

I'm so sorry for what you and your dear relative have been through, OP.
Sadly, as you have found, it's only when you kick up a fuss that you get any real form of care in some situations.
I hope your loved one is now peaceful, and that you can get some form of rest.

I'm sorry to hear this. We went through the same situation with my dad. Such distress. It hurts to think about it. He was eventually moved to a hospice, they reacted quicker but still not quick enough. Every doctor took a full history, them wanted to wait 24 hours to increase pain meds. He was on a syringe driver (which I assumed meant you had as much as you wanted), but no. I wished I had taken his prescription morphine in with my to knock him out. We also made a complaint.

I'm so sorry. It's barbaric.

Really sorry that you and your relative are in this cruel barbaric situation. I hope it will soon end.

I'm so sorry OP it's an awful thing to see. My grandmother hung on after several strokes for 10 years until she looked like a mummified twig in the bed and just hung on and on. I honestly thought she would never die.
I was a nurse for 25 years I've already made arrangements for my own end and it will be quick. I have no intention of hanging on until the bitter end.
I think it's so wrong and made so much worse if the person concerned is scared of death, but I have seen many lovely and peaceful ends too.

I’m so sorry OP, this is an eye opening thread. I had no idea as my granny and FIL were lucky enough to die peacefully at home with District nurses doing medication. I hope the night passes ok.

I’m so glad you are being heard op. Fingers crossed for a peaceful night

I'm so sorry, and so angry for you. I don't think people realise that this is what dying looking s like? I'm utterly traumatised watching my mum die and had a similar experience. I've never really been bothered about assisted dying, but now I really am for it. There is no dignity for the terminally ill, palliative care is so shit.

I sometimes wonder about modern medicine for the very seriously ill. It seems to prolong sickness rather than prolonging life. In my experience it's just extending the shitty bits at the end when everyone's miserable. My dad had a whole host of serious conditions at the end. MND, COPD, Diabetes, Dementia. His last 3 years were just awful. I remember he had a respiratory crisis due to infection around 5 years ago & had to be resuscitated. His quality of life was still fairly ok at the time. I often wonder would everyone have been happier if he had died back then, himself included. Instead, he had 3 years of awful sickness and indignity, and my mum, my siblings & myself probably have some form of PTSD.

All the best to you OP & hope your relative gets peace.

I’m horrified there were no palliative care doctors available at the weekend at all at a hospital (I assume you’re in hospital) with end of life care patients! They can’t just say ‘oh we’re not going to offer appropriate end of life care this weekend, if you could just hang on until Monday for your sedatives and pain relief?’. What was in place, and why was it so inadequate? I am so sorry, and I know you have other things to worry about at the moment, but please do complain to the hospital (and to your local healthwatch and to the Clinical Commissioning Group for the area your relative lives in).

I sometimes wonder about modern medicine for the very seriously ill. It seems to prolong sickness rather than prolonging life

Exactly. We can be kept alive but with zero quality of life. Plus the fact that Dr Shipman has made it hard for doctors to provide very high doses of opiates.
I wonder if one should keep a secret store of morphine for such a situation - but then I’ve no idea where to go about getting hold of such a thing and presumably one might not be in a state to retrieve it from its secret hiding place.