I'm a palliative care nurse

[alwaysgotyou]

I'm a specialist palliative care nurse with over 15 years experience in hospice inpatient units and in the community, working for charities and within the NHS.
Ask me anything.
NC for this, but been on MN since 2011.

Do a lot of patients ‘see’ deceased loved ones before they pass? My great gran was ‘seeing’ her husband in the hours before she passed.

Do you what the prognosis is for a infected fungating tumour stage 3? Can these infections be fought off?

Is pain truly manageable in the later stages? I think everyone's worst fear is dying in pain and yet we see so many anecdotes about patients whose pain can't be managed and they die agonisingly.

Considering most of us are heading towards this sort of outcome (we all die! and not all of a kind heart attack in our sleep) wouldn't it be nice to know that even if we are terminally ill, we won't have to suffer towards the end.

Lots of people hallucinate at end of life, but is particularly more common with certain types of cancer/disease spread.

I'm afraid I am not a consultant or in any way able to provide prognostic indications really, especially based on such limited information, but I do wish you well and encourage you to seek help and advice from your local hospice and also tissue viability nurses for help with dressings etc.

Yes, in all but the most extreme cases I believe it is. I also believe in the saying "if you can't take the pain away from the patient, take the patient away from the pain." When I first came into palliative care, the consultant I worked with would ask patients what they wanted at end of life and if their wish was to be more sleepy, then they would prescribe medications to make it so, but things have changed a fair bit since then as time as gone on. Pain is not just a physical entity but can stem from all parts of the persons' being and they may need support from all avenues to ease that pain.

What are your views on euthanasia?

My grandad had weeks in pain, barely conscious and all of us just waiting for him to pass. This was after years of dementia. It was awful.

It's not me, incurable friend. Half don't don't want to know really. I guess if this infection clears up there's nothing to stop reinfection. Feels very bleak.

My own personal views are that I am pro assisted dying as long as it is done with very strict protocols adherence. I believe that palliative care and assisted dying should go together, not be an either/or choice.
I hope that makes sense.

Thanks for posting and for doing what you do

Thank you for the work you do. My mum died of cancer last year and wanted to die at home. We could not have done it without the lovely palliative nurses

Do you believe that when someone is in their final moment they can still hear and understand those around them?

My sister had a horrific death because I was unable to get hospice involved. Hospital discharged us with high expectations set of palliative care by the hospice. Hospice failed to respond. GP (when we finally got through) sent us to district nurses....who referred us to hospice who had several layers of care (community/hospice at home/inpatient) and all of them passed us around. It was soul destroying and I'm still angry. This took weeks.

With hours to go I finally got hospice nurse to attend who said she didn't seem in that much pain to them (she was having a sleepy patch) so they woke her up and rolled her quite roughly to see if she was conscious and experiencing pain. Well that was it....awake, in pain until she died. They started to find the drugs and paperwork which seemed to take forever and finally administered them as she died. What can I do to forgive and forget

How do you help people accept death is near.. when they may be fighting it/ terrified?

I have a relative who often seems to be near the end and then rallies. What are the real signs of being near the end, we have been told both rapid breathing and then also slow breathing are signs? I don't think there are any real common signs, it's very emotionally wearing being called to her bedside for days and then there's a rallying. It feels so selfish to say that, but it is very emotionally draining 😞

Thank you for the work you do. I took a lot of comfort from a book called With the End in Mind by a palliative care doctor that I would recommend to others.

My question - my father died last year and in the last few hours had what I understand is called terminal agitation where he was very distressed and trying to get up frequently. It was quite upsetting. Is this quite common and could it have been prevented?

My mum was given Midazolam in a syringe driver - she never woke up again. Did it put her into some kind of coma? Was she still aware of everything or not? I had no idea that would happen to her.

Do you think we try to keep people alive too long? Just extending pain and suffering in the very elderly instead of letting people die of 'treatable' illnesses like flu?

I do indeed believe that people can hear right until the end.

I am so so very sorry for your experience.
I would write a letter to the hospice director and complain about the experience you have had.
I would also ask for counselling from the hospice to help you.
Sending you so much love 😍😍

It takes time, patience and experience.
Sometimes you can never prepare someone unfortunately. No matter how hard you try.

If can be hard to predict, not everyone's disease trajectory or end of life journey is the same and some people (especially if they have been stubborn in life!) can take longer to die than others, it doesn't sound at all selfish to say that it's an emotionally draining time because that's exactly what it is, a total rollercoaster when you've prepared yourself for the death and it doesn't come. You're doing great, just remember that. X

Hello! Kathryn Mannix is a real hero of mine and does fantastic work, her other book is called Listen and is also brilliant.
Terminal agitation can be very common with some conditions yes, it cannot always be prevented all successfully treated, we can try a range of things and different medications but do not always manage to get on top of it unfortunately, it depends on what the route cause is x

Midazolam is a sedative, it would be unusual to just have midazolam in. Driver, what else did she have in there? Something to help with her pain perhaps? And I would say it would have made her sleepy, but i would think and hope that if it was done in a hospice in would have been done at the appropriate time and level so that it would have been done to alleviate her symptoms so although it may have seem as though as it was the drugs that made her "not wake up" it was more likely just the nature of her disease progression, the drugs were just there to keep her more comfortable x

My mum was in hospice care for cancer.
They treated her like their own relative.
She had a 'good death'. Cared for, pain free. With those around her who loved her.
I could never repay what they did.

I'm not sure that's a palliative medicine question really, in my personal opinion, we must give people informed choice and autonomy over their lives. People have a right to refuse abx for a chest infection dor example, even if they know refusing them may mean the infection overwhelms them.