End of life care at home any advice or experience ?

[FishersGate]

Mil health has deteriorated to the extent that Dr's have now asked DH and SIL about the next steps. She hasn't been eating for over 4 weeks, her mobility has gone. Dr's and physio have stated her mental health is very poor and she's given up. She has a heart condition however last week Dr's were saying that with nutrition and mobility she could go home. She has cancer but not aggressive and has a stoma following op.

However mentally she keeps stating,she can't do it, she's had enough etc refusing to eat, doesn't want to eat. Won't move in bed or try to move out of bed with assistance. She is being tube fed nutrients and is on oxygen as fluid on her lungs. In part due to lack of mobility. She is now very frail and spends large amounts of time sleeping.

SIL wants her to come home with care. Dr has indicated it could be weeks rather than days.

Obviously DH is struggling as despite MIL being given a shorter lease of life he was hoping she may have made home mobile etc. He is also struggling to accept mil has in part made some decision to 'give up'

Can anyone advise how this has worked for them and their immediate family we have young children too.

I don't think SIL or DH have lasting power of attorney either does this need to be sorted ?

Thank you

Come home to where from where? End of life care at home is very possible but it is demanding and services may be stretched. Have you been referred to the end of life team? I'd say lpa is a moot point at this stage if she still has capacity to make her own decisions but an advance decision might help and a ReSPECT process should be done by her gp or the hospital. So sorry for your dh and family.

My grandfather was cared for at home by a combination of carers/district nurse and my mother.
He only lasted a few days however and was mainly unconscious. He was also 100.
She had LPA.
It was also the very start of covid lockdown so I’m not sure if that affected what happened. They obviously didn’t want him in hospital.
It was a good experience, very peaceful I believe.
I’m not sure my mum could have managed for weeks.

I definitely think you should talk to a palliative care team/hospice, because it does sound like she’s decided she’s ready to go. They are the most amazing, empathetic people who will be able to help you find out what’s available to you and what you need.

Re power of attorney the current turn around time is over 5 months.

Worth speaking with her Occupational therapist on the ward to see what equipment is needed for to go home. She may need a hospital bed which generally can only go downstairs so some moving of furniture might be needed. Also what care does she need? Can she wash/dress and take her self to the toilet. The needs will likely change as time goes on. Also oxygen. How will they be in her home

Is she aware that she is being tube fed? Does she want this to continue?

I think it’s not very uncommon for older people decide it’s time to give up. Both my Grandmothers did this.

👋 Hospice nurse here.
I think it depends where you are but I would ask for a referral to your nearest hospice. They may have community nurses to assist. You will also need equipment so a community occupational therapist referral would be helpful. If in the UK, I would ask about continuing healthcare or Fast track funding to be applied for (it means that 100% of care costs will be met!) she will need some level of care I imagine, especially as she declines. Does she want to continue with tube feeding? If yes, you will need a community dietician and district nurse referral. Hope this helps x

We haven't been referred yet. The conversation with the doctor happened this morning. She is currently on hospital. Her wishes are to come home

She cannot move at all at the moment unaided. Catheter and stoma bag.

Hi yes she is aware. I don't think that conversation has happened yet.

Thank you that's really helpful

You need to talk to palliative care people - hospice often can provide excellent support at home - does she have any kind of advance decision signed? I would look at that sounds like she have capacity at the moment

Hi DH has said that palliative care have been informed today and will be in touch but Dr says obviously nothing happens very fast.

She has requested no life saving measures and understandably believes she is going home to die as per her wishes however I don't think SIL DH are yet in a position with all the facts to fully make the right decision for all involved. I think they are obviously rightly so more interested in fulfilling her wishes but haven't thought much past that

I did this for my father, moving back to the UK for as long as it took. It was horrendous and I’d never do it again. Despite fairly vigorous insistence, I received minimal support from GP (1 home visit)/social services (0 visits)/health service (fast track, i.e. free, but contract workers more interested in filling out their time sheets than in helping dad)/macmillan nurse (1 visit)/marie curie nurse (0 visits). This was over three weeks, just before the pandemic hit. The only person who really helped was the occupational therapist, who got us lots of equipment. I had no knowledge of end of life care, and the end of a beloved parent’s life is absolutely not the time to acquire it without support. I’m glad I did what he wanted, but there are SO many things that with hindsight I could have done better that would have made his remaining time more comfortable. Even now, 3 years later, I am tormented by my failures, and my memories of those 3 awful weeks continue to block out all other memories of him. Not for the faint-hearted.

Please be aware that it can be impossible to find medical help out of hours.
My friend provided end of life care for her brother and when he was in terrible pain one evening they couldn't find any medical help. They were told to give him paracetamol by a locum GP. Sadly he died the next day.
They were promised all kinds of help but sadly it didn't materialise. She is haunted by his final hours and has lost all faith in the medical profession.

I'm very sorry for your loss.

Your post has genuinely affected me, and I wish you well.

Thank you. This is also my concern I have heard similar stories. So sorry for your loss

Same here

Please be aware that it can be impossible to find medical help out of hours.

This.

DF had terminal cancer. The hospice was an hour’s drive away. DM can’t drive, so they agreed on “hospice care at home”. The last day of DF’s life, the catheter came adrift. DM called out a GP to get it back in place. A GP came out, but refused to put it back, saying their own GP would come and do it the next day. I don’t know anything about catheters really, but imagine it was uncomfortable or lacking in dignity on what actually the last day of DF’s life.

DF started drowning in his own secretions, after 7 pm. The nearest doctor on call was 60 miles away, over winding country roads, where if you take a bend in the dark, you can end up in a creek! DM repeatedly called for an ambulance. The nearest hospital was an hour’s drive away. Eventually I believe DF’s liver tumour burst around midnight, and blood gushed out of every orifice until DF died. The ambulance arrived 15 minutes too late. The paramedic understood what had happened, and told DM if she didn’t make a complaint, they would.

I would never take a chance on that happening to my nearest and dearest in a million years! I’d go for a hospice every time!

Thank you all. Mil has now been given days. So we are looking at hospice ideally as a care package etc might not arrive at home etc in time. Or it may happen at home. Just trying to support dh as best as I can, he's very angry and short understandably and trying to manage children etc.

Wishing you well whatever you decide/is available.