Dad's death was unexpected and traumatic.

[temo]

Hello.
My dad recently passed away from Lung cancer, a diagnosis that he only received just under 4 weeks before his death.
I feel let down by the NHS, the non-existing palliative care, and others who were meant to support my dad and his family.
In some ways, I believe there is a failing with my dad’s care and in due course I will be retrieving his medical records to investigate this.
For now, I am having to navigate my unexpected grief and unexpected trauma. I was with my dad for his last 24hrs and it was a harrowing experience. There was no peace in his death, and I was often left pleading with the nurses on duty to help him.
It was so bad that the last words he ever managed to speak to me will forever haunt me…
“Gun.”
“Shoot.”
“I want to die.”
“This is torture.”
Following these words, he proceeded to attempt hitting himself in the chest with what little energy he had left in a bid to trigger a heart attack.
Unfortunately, that didn’t work and it took a few more agonising hours for him to eventually die.
I feel so alone and angry in this grief. Talking about this with family is out of the question as I’d prefer not to upset them with such details, but what do I do?
How do I move on and live with this for the rest of my life?

So sorry for your loss and what you went through.

I have experienced something like this (not as unexpected) and 10 years on although the memories still come back I have learned to focus on this: the end was a tiny portion of a mainly happy life. So I try and think of the huge amount of other memories.

I am so sorry for your loss and the awful treatment your Dad and you received. Definitely follow it up, no one should be left to suffer like that! Xxx

Both my parents died from cancer, neither death was ‘easy’. Even with drugs and care it can be massively distressing to witness and the idea that people pass peacefully in their sleep is quite rare I think. Honestly think now that heart attack is the way to go. Took me a long time to process what I went through but counselling definitely helped.

So sorry you witnessed this. I had a very similar experience with both my Gran and Mum, both dying of bowel cancer after being diagnosed only 6 weeks prior to passing. Both didn’t receive the care they should have- Gran was at home with me with nurses and carers and Mum was in a hospice. Huge gaps in getting the painkillers and services they needed. People just don’t understand how awful it can be. It’s made me want to save enough to go to Switzerland- there’s no way I want to go like that. Totally inhumane.

Me too

So very sorry that you have lost your Dad and have also been left with such a distressing situation to cope with. You would be totally justified to raise a formal complaint at some point in the future.

I hope I can word this sensitively: your lovely Dad wouldn’t want you to be left agonising over his final moments. You were there by his side and he would have known you were doing all that you could for him.

So sorry for your recent loss. Do speak to PALS at the hospital. They're a bit of a toothless tiger IMO but if you don't say anything nothing will change for the next patient.

I've been with both DPs and Dgdad when they died. DM died at home with the support of palliative care team and GP, and our family nursing her. TBH DMs death at home was the scariest (because none of us are nurses and felt out of our depth) but it was also the calmest. A syringe driver with pain relief and antianxiety meds was organised by the GP, and we could rally round and support each other and DM through it. I'm happy we could enable DM to die relatively pain free in her own home which is what she wanted. Getting the GP to organise the syringe driver was key.

It would have been helpful to have a Macmillan nurse in the last day or so (we sat in shifts to care for her) but they only had 1 overnight nurse covering 3 counties locally and I suppose they focus on patients at home without family support.

Try not to feel guilty. That was a short time between diagnosis and death, which leaves no time at all to negotiate and advocate for your Dad whilst coming to terms with what is happening.
Someone said to me when my Mum was dying, it's hard to see it now as you're all so consumed by the present but in time you will come to remember your Mum across her whole life and that this part is only a small proportion of that.
What you have experienced will stay with you - I'm glad you have been able to talk with someone about that. You might feel the need to do so again if you want to keep these details from other people. It's kind of you to spare them but make sure you get the support you need from somewhere.

Why didn't they sedate him! I'm so sorry for your loss, it's shit isn't it 💔 I lost my mum and sister to lung cancer. They were both sedated at end when it got too much, it's inhumane to leave them suffering. We do better for animals.

So so sorry to read what you have been though. I lost my dad to cancer too and it was heartbreaking, traumatic and we all felt helpless. I felt angry for a very long time. Angry at my dad too if I’m honest. Thinking of you, sorry nothing profound to add but I promise it does get easier in time x x

Each death is different and respiratory/ lung cancer can be distressing. Some symptoms can't be avoided such as loud breathing noises and changes in breathing patterns, or symptoms specific to the cancer such as breathlessness and can be helped somewhat by medication such as midazolam or palliative oxygen but sometimes in a quick deterioration symptoms can be less well controlled or just difficult to control.

I'm so sorry to read what happened to you.

Have no direct experience or advice but sending you a hug and a

I sometimes wonder if in cases like this the police should be involved to investigate. this is abh imo.

sorry for your loss

Horrible. Horrible. Horrible. OP, you have all of my loving sympathy.

The first year after my dad's (and also brother's) deaths, I could only identify them through the harrowing experience of their deaths. I could no longer see their actual lives... that long and loving road we had travelled over decades and memories had been snuffed out by the acute trauma of their deaths.
I could no longer see them, as they were in life.
After a while, I would force myself to sit with the good memories. I'd recall good times and after a while, I started really living with those good memories, those years that had defined their lives and who they were and always will be. And I found myself back in a happier world with them in it.
It doesn't take away the suffering or the trauma, but time and the exercise of remembering the good things can soften those sharp edges you will always bump up against. But it does take time.
Counselling, breathing exercises, grief, crying, all of the things we need to do in order to recover are essential to you now.

My brother's death was particularly harrowing. I watched the film Nomadland after he died and for me, it really is a film about grief and loss and moving through life after a loved one's death. The end scene shows Frances McDormand walking through the front door of her abandoned house, the home she'd built with her (at this point) deceased husband and then exiting the back door, out into the great wide open, the great unknown and yet, it was always there, just outside her back door, this familiar 'great unknown' that is pulling her into her new world, one without her husband in it. Beautiful. Heartbreaking. And healing. It was, for me, very symbolic of how we move through grief and move forward, while always remembering our lost ones.
May you remember the good times. And may those good times you've shared with your beloved dad hold you as you recover from the trauma of his death, OP.
His love is eternal and it will see you through. It will carry you.

The process of dying results in many different symptoms not all of which are completely controllable. We involve palliative if there are specific symptoms that need different medication for eg intractable vomiting, seizures. The end of life care pathway is there for all other symptom control. Sometimes symptoms occur before any required dosages or syringe drivers have been altered to manage that but overall a death should be with pain and agitation minimised, unfortunately not always possible but with nursing staff assessing symptom control on the EOL care pathway this should be achieved.
OP was your dad on the end of life care pathway?

We went through almost exactly this with my lovely father in law. It was a very short period of weeks between diagnosis and death. In the months before he’d been issued numerous prescriptions for antibiotics for a chest infection without anyone seeing him or examining him. Lung cancer seems to be a very aggressive way to die. I found the whole process and the change in him very quickly shocking. He was very accepting of the whole thing and didn’t seem to want/ need pain relief. He did become very agitated at the end and needed medication. Nonetheless the whole thing was harrowing. My husband particularly really struggles with it. I’m so sorry for your loss.

Another one who feels let down by the care given to my parent at the end of life. I am so sorry for your loss. I have got to the point where I feel that, if they can't provide adequate care, at least allow assisted dying. You are not alone and I am thinking of you.

It's not very long ago that there was such public outcry at the end of care pathway it had to be defended on ethical compassionate and clinical grounds and the name Liverpool care pathway was discontinued or mainly relabelled due to pressures from the press.Similarly if family members oppose DNR decisions and want to to continue active Rx longer than is appropriate it can result in increased suffering for the patient as decisions can be delayed in some cases while further discussions take place. Only when the end of life care pathway is in place does care and comfort rather than any treatment become the only priory .

but that's the thing - the care provided was not adwquate to alleviate even some of the pain and discomfort.

I think it makes sense that death is often not peaceful, as the body does just peacefully give up, it fights. The thing that doesn't make sense is that, in this day and age, people are allowed to suffer anything but a peaceful death! Why wasn't he given sedatives? Or something else to calm his struggling body? I mean surely, a dose of heroin, so a person can die in a drug induced ecstasy, would be far preferable?

OP was he on end of life care pathway as with that all end of life meds are prescribed?

Read my post.
On end of life care pathway are prescribed:
Morphine
Midazolam
Hyoscine
Cyclizine

The funny thing is I'm not sure dad was on the end of life pathway. That is a question that I'll be looking for answers when retrieving medical records/contacting PALS.

I do know that he had a driver, but it seemed to do very little. We had to constantly ask for the dose to be increased and this often wasn't done.

From my experience, it seemed as though no one really knew what was going on. In his last 24hrs it went from a doctor offering him a procedure to remove some fluid from his lungs to make breathing easier, to then being told hours later by a nurse that this would no longer be happening without much of an explanation, and then he was given paracetamol!

This caused much upset, confusion and frustration for us all, and my husband chased after the nurse wanting answers as to why that decision had been made. It was only then that we were told they believed he only had 24-36hrs to live.

In his last hours, and after having to listen to my dad ask for a gun, I really understood why people are pro assisted dying. If there was something I could have done to make death come quicker, and less painful for him, I would have.

There can still be horrendous delays and difficulties getting medications etc on end of life pathways.

My Mum was in a nursing home set up to care for people at end of life - we are in Norfolk UK, there aren’t enough hospice spaces, she had terminal bowel cancer, she was expected to die imminently. On the morning of the day she died her bowel perforated, she became - I want to say unconscious but I’m not sure it was that, mouth open, rattling away, making angry and tormented grunts (which was different to when it happened to my Gran, I’m sure my Mum had some awareness). She had oral morphine but it wasn’t enough. They had to get a doctor out to prescribe a syringe driver. The nurses then had to source this from a pharmacy. Then get enough staff to allow someone to go and collect this and then someone to administer this - a qualified nurse. She did not get the syringe driver until 10.30pm that night. She died at 11.30pm. She spent the entire day from 7/8am in pain, tormented and contorted in pain. If she was a dog or a horse they would have put her down and I wish they would have. People assume the systems work; they do not work. Not always.

Yes. My experience was that palliative care is a specific discipline and staff are not available 24/7.

My experience was also that palliative care staff were linked to local hospices (even in a large city hospital) and these are funded by donations. I’m not sure what happens if there isn’t a local hospice organisation.