Palliative care

[Joluu]

Hi all. Mum's GP has recently suggested involving the palliative care team for her heart failure. She was very upset and declined. It would be really useful to learn about other people's experiences of palliative care so we can understand the potential benefits.

[jeanjeannie50]

Hi Joluu

Palliative care is the care and support given to people with life-limiting conditions like cancer, heart failure and lung disease. It aims to give people the best quality of life possible. It focuses on managing pain and other symptoms over the weeks, months or years someone is living with a life-limiting condition.

If your GP has recommended this, then I think palliative care would be a good idea in order to help keep mum comfortable. The team will also support you and offer advice if needed. My only experience of this is through working in a nursing home, but in an office role not nursing.

Jean

[Chappychap]

When your doctor says "palliative care", it may not mean what you and your mum fear it means.

"Palliative care" isn't the same as "end of life care". In fact in medical terminology almost all heart medicine, from stents to transplants, are technically palliative treatments, in that they tackle symptoms or reduce risk rather than fix the underlying causes.

The key thing to hold onto is that some people have palliative care that can last for many years, decades even.

Maybe you could talk to your mum's GP, explain that she's upset, and find out what palliative care might entail in this particular case, and what benefits it could bring?

Good luck!

[WardijaWardija in reply to Chappychap]

Excellent reply. Terminology can be quite ambiguous in area's such as these. Your words were kind and well placed. I hope it gives the OP and their Mum, some peace of mind and help them through their journey. 🙏🙏

[wilsond in reply to Chappychap]

Well said and very reassuring

[Purpleazalia]

Hi Joluu, I'm sorry to hear that you and your mum are in a place where you need to consider palliative care.

I know of people who have used the holistic services offered, but not had anyone close enough to me to be able to tell you more about how it works.

Here is a link to an NHS page that might be helpful

nhs.uk/conditions/end-of-li...

[Hidden]

Dear Joule

I am under a Palliative care program and as Chappychap has already stated this is not end of life care which is a totally different thing.

It is an old name and I can understand your upset by being offered it, what I can't understand is why it was not explained fully to you and your Mum.

Personally I think the word should now go and maybe called something like " specialist extended care "

It used to be used extensively in Homes and Hospices and is slowly being replaced with "end of life " care, for those that need it.

Phone your GP on Monday and get the answers from the person who has recommended this to your Mum.

I am dying, but not yet, thank you medical services.

[Thanksnhs in reply to Hidden]

Hi and thank you for posting that, I thought palliative care was end of life care, it's nice to find out it's not, char

[mathematics]

Hi sorry to hear about your mum. My dad had strokes, which he managed to get better from but then went on to develop non-Hodgkin's lymphoma, he could not tolerate the chemo and kept on ending up in hospital so decided not to proceed with treatment. He was given 3 months to live but only managed 6 weeks as his cancer was aggressive. He wanted to die at home and the doctors was brilliant and supportive but unfortunately he started deteriorating over the weekend on the Friday the doctor suggested he went into a hospice and my mum said no. As it was a weekend he could not access the support he needed so on the Monday they ended taking him into hospital and he died in hospital on the Tuesday night. We wished we had had time to get more palliative care in place but things had moved so quickly due to his worsening condition. We had gone to the hospice on the Sunday to explain the situation and the nurse on charge had brought us a commode and come over to the house to try and help us cope with my dad she also gave us numbers to ring if need be. However Sunday is not a very good day to get ill. Although your mum might not be too bad at the moment I do not want to sound morbid as she may go on for quite some time with her health condition but to have things in place when things do deteriorate is a good idea. Take care.

[Hidden]

I’m 75 and was diagnosed with Heart Failure last summer. I was referred to the local Heart Failure Team. This is a service staffed by nurses who aim to help patients with the condition . My allocated nurse has helped me by sorting out my medication, ensuring that I’m receiving the right medication and, where necessary changing it. They also offer a range of other services including, psychological support, benefits advice etc. I don’t see it as being ‘end of life care’. Rather, I see it as helping me to learn to live with with HF. My allocated nurse sees me on a regular basis, keeping an eye on my health overall. She can spend more time looking at my condition than my GP can. She’s available on the phone if I have any concerns. A truly wonderful service.

[Dollcollector in reply to Hidden]

Where do you live to get all that support. I am nearly 87 and have had no support at all. In 2015 l had a big stroke which l was lucky to eventually recover from , with help apart from being sent home with an anticoagulant and pill in the pocket. In 2018 l went into heart failure after a few years of a.fib. After being given a pacemaker and different pills, all l get now is a pacemaker check once a year . I don't see a nurse or cardiologist. I don't get any physical or psychological care. I have just been left to get on with it. I am so breathless and fatigued , just to get washed and dressed is exhausting and l dread it every day. I also have slipped discs, cervical spondylitis ,2 hip replacements and a revision. I hip replacement was done wrong and l am in a wheelchair. I live in Wales.

[Hidden in reply to Dollcollector]

Hi Dollcollector. I live in the West Midlands. The HF Team is, I believe funded by the BHF

[Dollcollector in reply to Hidden]

Should have been NO help after stroke.

[HHH2017]

Hi Joluu, I totally appreciate how upsetting hearing these words must have been for you and your mum.

We had the same experience with my mum in law 3 years ago and shes happily still here with us with great support around her.

We thought it meant 'end of life' too which we'd had with my dad but no it has meant ensuring best care & comfort for her without major interventions and she's happily plodding along. Best wishes to you & your mum.

[Lezzers]

My husband has heart failure & he had hospice support last year, he was referred by his HF nurse. A couple of support team from the hospice came to our house to talk to us about what the hospice would be able to help him with, how to manage his condition & live the best possible life with a life limiting condition. The hospice doesn't only support the one with the medical condition but they also support the partners/carers.We then both went to the hospice weekly for a number of weeks & then my husband went on his own for some exercise classes to get him more mobile.

I can only say that we found it a massive help & a great experience knowing that support is there & will be there whenever it's needed. Unfortunately the word 'hospice' carries a fear with it but it's really not end of life care at all

[Joluu]

Thanks everyone for your kind and helpful responses

[Nep05]

My mum was put on palliative care following a stroke and also her very clear DNR instructions from years ago so there was no question of hospital intervention. I was very emotional about it at the time but then soon put at ease by the very apparent skill and knowledge of the palliative care team. 

For someone who wasn’t expected to survive the week she actually went on to make a reasonable recovery and that was 5 years ago. The level of care and down to earth no nonsense but caring advice from the team was invaluable. It really made me think positively about what I would want for me in that situation.

[Beekite]

It is a shock when it’s suggested but we. Have found the advice and support really fab. Dad had HF and dementia. They have been great offering support advice and at times an ear for me and mum. Tell your mum they focus on life quality not quantity and will want to support to to get the most from her good days xx

[Auiron]

My mother was put on palliative care aged 95 whilst in the hospital for the first time - the term 'end of life care' was also used - she died in 2016 aged 97. About 18 months before she died whilst in hospital a doctor discussed do not resuscitate with my brother as well and we agreed. It was never mentioned to her. During her time, one year, in a nursing home do not resuscitate was in her notes and she was never aware of this.

There is a point here as to whether the same could happen to us all and we would have 'do not resuscitate' in our notes and that we were on palliative care/end-of-life care and never know.

[Bagrat]

The difference between palliative care and end of life care has been explained very well. I was a clinical nurse specialist in palliative care for 20 years. We saw people with heart conditions in conjunction with cardiac specialist nurses ( bearing in mind I have been retired 19 years) In those days, we offered support to patient and family/ friends as well as informal carers and other staff involved in care. We liaised with Social Care, GPs and the hospital as well as advising re benefits, blue badges etc. If we couldn't help we found a man who could!! We negotiated the somewhat fragmented system ( even then) and tried to be whatever we were needed to be, to make an uncertain situation less scary.Not sure that helps in the slightest but as the three different teams I worked within were funded by Macmillan we had a big mountain to climb sometimes as GP or Consultant would say " I've asked the Macmillan nurse if she'll have a chat" and this could cause immense anxiety if offered without explanation