Palliative & End of life, definitions and experience

Back References.
From today Oct 26 2023 by @RachelK : https://forum.carersuk.org/t/roll-call-october-2023/123743/565?u=victoria_1806
There are some posts esp. during 2020 Covid times - worth checking using the search window

Resources: End of life planning | Carers UK
Hospice Care Finder | Hospice UK
Maggies (cancer focus but VERY good connections and info) Our story | Maggies
What end of life care involves - NHS
What is palliative care?

Personal experience:
1)This year In London, I had an elderly relative 70+yrs of age, cancer that could be no longer treated declined rapidly. He was already having issues eating, losing weight. tired sleepy…to help the couple I called the person who was triggered to see them by their GP. This team were amazing Pembridge Hospice and Palliative Care :: Central London Community Healthcare NHS Trust
My relatives were scared of him going to a ‘unit’ that was not ‘caring’ after a neigbour shared a bad experience. He wanted to be at home. I was talking, as a relative, directly with Pembridge - part NHS part charity funding
Because I was worried about how fast the husband was declining over the previous 2 weeks, they had a specialist consultant part of their organisation but prob ‘shared’ with a hospital/elsewhere to visit face to face. I listened over speakerphone
Husband dozed in/out. Consultant was extrememly empathetic. could sense the wifes distress about his eating etc.
Post call I then had a debrief with the consultant - ‘He was already termed as palliative, given there was no further treatment for his cancer.’ ‘Can you tell me if he’s lterally end of life?’ ‘I can’t tell you how long he has but we can see and tell he can’t have long, whether that’s 2 weeks or not I can’t say’ for me this means that my relative was very close to the end but that they used a 2 week period as highly-increased monitoring/action
From that consult at home, there was closer contact and frequent checks. Including having strong pain meds available in the home for district nurses to administer if/when it became neccessary, given the cancer-pain and inability to swallow.
I activated family to see him as soon as they could
Less than a month later he passed.

  1. Dad v complicated case with bladder cancer, destabilising congestive heart failure, that had atrial fibrillation plus a subrenal aorti aneurism, rheumatoid arthritis, kidney liver issues because of all the meds…by end of 2019 is was v unstable…paramedics every week towards the end. Dad had a DNR do not resuss yellow form, stored in the fridge = paramedics protocol, as everyone has a fridge…BUT he was considered palliative NOT end of life - perhaps because 2016 he had a resection to remove the cancer, and again in 2017 and then radio-isotope therapy in the bladder 2018/9 - yep he soldiered on and fought for a VERY long time
    what I found out (remember we are far north of england…scotland’s down the road) -
  • During what I didn’t know was the last 2 months of his life - we were connected to the local hospice, that had a unit & beds for stays. The palliative-end of life nurse gave me her cell number and I could call her.
    No one can give you an exact timeframe, because it’s not an exact science of course, but they recognise end of life symptoms

    The district nurses provided oramorph and the injection meds that they’d admiister IF his pain got really bad (we never used this, only a tiny bit of oramorph when he had difficulties sleeping at night because of coughing)
    we organised our own care at home, and were given hospice at home support WHEN THEY COULD give it, & only knew at 3pm on that day (cue fraught organisation, arguments etc etc)

because we were making it clear; & dad was clear enough to say no more operations and medics were agreeing …there wasn’t more to really help (not because of cancer but holistically looking at his overall health and everyday demeanour (dozy, nodding head)…and significantly decreased quality of life) ‘something’ could happen at any time. For my dad, this is what equated to ‘closer/at, end of life’

The consultant from Pembridge articulated it the best - when the body is so tired because it’s in pain and trying SO hard to recoup but losing the fight against the (cancer) illnesses then of course he’s tired all the time becoming frailer
I’m so glad we have a REALLY good GP and the cardiologist was great too.

BUT what happens with EOL actions and care at home if he’s not in a hospice?
It was another heart, middle of the night call out in december when I felt most frustrated - dad’s wish was to pass away at home so argued threatened etc shouted to not go to hospital, we wanted that too, & had a DNR but what exactly was I meant to do at that moment? (CAVEAT - this is specific to my Dad’s case) aligned with GP, cardiologist nurses

  1. Whatever happens dial 999
  2. usually can be stabilised by paramedics at home or in the ambulance BUT
  3. ask the paramedics to call the on-call doctor, and say Dad refuses to go to hospital (no point for him to go to ER or be admitted) is there anything else to do at home to make him comfortable/check. There was a term, like a specific ‘code’ for this pathway of action which I can’t remember now…

Because at our stage Dad to be blunt he would die before/during the callout OR we had the right to refuse him being taken to hospital. I never did CPR but when he had seizures I tried to comfort/make him safe.
2 or 3 calls later he passed at home.

Sorry that’s so long, but hope these 2 personal experiences offer some reference points for discussion with social care or medics.

@bowlingbun @Charlesh47 - any specific legal or medical or social care pathways of action or facts to add

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I’d only add that although there are guidelines nationally, it’s best to check your local area for their “End of Life Care” services. Best to check for your local ICB: they should have details.

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I would urge everyone caring for an elderly person to Google “Signs of Dying” whilst their caree was still well. You will find lots of information written by people from the hospice movement, explaining how the body gradually slows down over many years, and why people should be offered food and drink, but not forced to eat it. People may not want eat as much in later life, because the body can’t process food as well it used to. I just wish I’d discovered all this when the first parent was poorly, not the last one.

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Thank you @Charlesh47 and @bowlingbun
Really good points…
and you both reminded me of this, I actually looked at whether I could do the training :

I’d completely forgotten about it. Just as there is a Doula for birth plans (prob more of a USA term) there are Doulas to support families in the dying process.

There is a telephone number to ask about Doula support: