Curious - Palliative Care

Positive Experiences

by Penguin - 2024-04-07 19:30:39

My experiences of palliative care are very positive. IMO it is the kindest, most respectful, caring and patient focussed department in medicine. The nurses and doctors who dedicate their careers to alleviating suffering and helping people to accept what we must all face eventually are pretty marvellous. Their care and help with acceptance and working towards a peaceful death is a wonderful gift that too many people don’t get to experience.  I think it’s something to be grateful for should you ever be offered it and certainly not something to fear. 

So do I think that palliative care is negative? Definitely not. Take it with open arms if you are lucky enough to be offered it when you need it.  

I’d be very sorry to hear that you needed it though Angry Sparrow. I hope that’s not what you’re telling us. xx

Palliative Care

by Gemita - 2024-04-08 01:37:19

Angry Sparrow, thank you for this important question, something that many of us may have to face at some point in our lives.   Palliative care isn’t the same as end of life care, since those needing palliative care might need it for much longer periods, perhaps in some cases, beyond one year.  Something people may not want to think about is how they’re going to afford the average cost of palliative care.  It certainly isn’t always free and is very expensive if we have to self fund.

For example, here in the UK, dementia sufferers are not automatically entitled to free care home fees or care costs, although funding may be available through our NHS "continuing healthcare".  For those nearing the end of their life, there is a fast-track service.  However, having a terminal illness or condition won’t automatically qualify you for NHS continuing healthcare funding. The severity of illness and medical care needs will need to be assessed to look at how your health impacts the way you live your life, and how often you need the support of someone else. 

There are times when I feel it would be wonderful for hubby and I to be looked after and I can see there will come a time when we will have to consider this.  At the moment though remaining independent and trying to help ourselves gives us a sense of purpose to carry on for as long as we are able.  I love my own home and am getting help to remain at home for as long as possible, rather than having to face moving into care.  Perhaps like you Angry Sparrow however tough things get, I am not ready to give up just yet and it would feel like giving up.  We have to accept though that we might one day need good Palliative care to improve quality of life and prevent suffering from a complex health condition that we can no longer manage ourselves

World Health Organisation

by Penguin - 2024-04-08 05:16:51

This article presents what the WHO have to say about palliative care.  The second link explains what it is in an easy to read format.

https://www.who.int/news-room/fact-sheets/detail/palliative-care

https://cdn.who.int/media/docs/default-source/integrated-health-services-(ihs)/palliative-care/palliative-care-essential-facts.pdf?sfvrsn=c5fed6dc_1

It doesn't just focus on cancer care. Heart failure and other diseases are included. 

Edited for relevance. 

palliative care

by Tracey_E - 2024-04-08 09:57:29

My grandmother was in palliative care for about 6 months. She did not have cancer. She was 95 and her body was shutting down so we chose to make her comfortable rather than extend things. We got a beautiful bonus. When we took her off all of the meds intended to extend her life, she was lucid again and we for a few more weeks she knew who we were. So, to me, palliative means quality over quantity.

What a bonus Tracey

by Gemita - 2024-04-08 10:26:44

That is lovely Tracey.  We could perhaps never keep a loved one at home and safely take them off all their meds, could we, whereas in a palliative care home with a medical team at hand, this was possible.  It does make me wonder though about the real benefits of some of our meds and how they can adversely affect the elderly.

Palliative care

by AgentX86 - 2024-04-08 11:12:21

"Palliative care" simply means that quality of life is stressed over length of life.  This goes against everything most doctors were taught.  However, if the patient is in so much pain (for instance) it makes no sense to prioritize length of life. Usually the length of life is important because the treatment (our pacemakers) does both.

"Hospice" is for the terminal patient, usually withing days or weeks of death.  The quality of life becomes so bad that the only humane thing to do is keep the patient comfortable until death (some countries allow euthanasia but I won't wander into that nuclear minefield).  So, in hospice (extreme) "palliative care" is used.  Most only hear of palliative in the hospice context, so end up using "palliative care" in place of "hospice" (to sound more important). The two terms are not synonymous, though one is used in the performance of  the other.

good point, Agent

by Tracey_E - 2024-04-09 11:21:08

(and nice to see you! been a while)

I think the instinct with most everyone is to extend life rather than be more concerned about quality. We can, and often should, stop trying to extend things well before hospice is called in but I've found that that can mean pushing and disagreeing with the medical team. So, when palliative care would be a better choice, they still want to run tests and prescribe a lot of meds. I've made it clear to my kids that when my quality of life is gone, don't drag it out.  I'm going to have as much fun for as long as I can, then not fight it.