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 sleepyā¦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 āunitā that was not ācaringā 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 āsharedā 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 - āHe was already termed as palliative, given there was no further treatment for his cancer.ā āCan you tell me if heās lterally end of life?ā āI canāt tell you how long he has but we can see and tell he canāt have long, whether thatās 2 weeks or not I canāt sayā 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.
- 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 medsā¦by end of 2019 is was v unstableā¦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 fridgeā¦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 englandā¦scotlandās down the road) -
- During what I didnāt 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 itās not an exact science of course, but they recognise end of life symptoms
The district nurses provided oramorph and the injection meds that theyād 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 ā¦there wasnāt more to really help (not because of cancer but holistically looking at his overall health and everyday demeanour (dozy, nodding head)ā¦and significantly decreased quality of life) āsomethingā could happen at any time. For my dad, this is what equated to ācloser/at, end of lifeā
The consultant from Pembridge articulated it the best - when the body is so tired because itās in pain and trying SO hard to recoup but losing the fight against the (cancer) illnesses then of course heās tired all the time becoming frailer
Iām 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 heās not in a hospice?
It was another heart, middle of the night call out in december when I felt most frustrated - dadās 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 Dadās case) aligned with GP, cardiologist nurses
- Whatever happens dial 999
- usually can be stabilised by paramedics at home or in the ambulance BUT
- 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 ācodeā for this pathway of action which I canāt remember nowā¦
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 thatās 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