DF End of life cancer, getting a bit much

[ThisBlueFish]

Hi,

My dad (60s) sadly has advanced metastatic cancer, we’ve known it was incurable and were given a year in March. We’ve now been given weeks / short months.

He has bone mets among things and back pain which started a week ago, has got severely worse as has mobility. He has had palliative radiotherapy and there is no more active treatment.

He is under the district nurses and community palliative care who are decent but he is very proud and anti hospice (which I think is based on a lack of knowledge). He has hospital bed and all sorts of equipment. We are optimised in the home from this perspective. Finances are no problem.

He is on long and short acting morphine and some other meds. I live 300 miles away and have split my life in two, but my mum is doing the majority of the care and meds management and is getting really overwhelmed and not managing and getting confused (as he’s on a lot) and sadly this means he isn’t always getting what he needs / she isn’t escalating things properly. Even with me staying down here it hasn’t been enough and his mobility is severely declining.

I am a nurse, my mum is a retired nurse. Despite this this is becoming beyond what we can manage, and certainly what my mum can manage. We are all getting a bit burnt out.

The local hospice is excellent and 2 streets away.

We both have PoA.

I need to get this situation more manageable and I truly think a hospice stay is fast becoming the best way to keep him safe, pain and symptoms managed and keep some dignity. His mind is still 99% there but his body is failing. My mum is at her limit and just getting through as she can.

Despite my extensive nursing experience (not locally) I’m just wanting any reassurance or experience in this. I’m planning to speak to the DNs / PC team tomorrow. it’s different when it’s your own family.

I’m concerned this is going to end up being a situation where we regret the hospice not being involved.

Any advice appreciated.

thanks

Both my parents died of cancer and at home. My Dad’s cancer had gone to his bones & he was in so much pain. The tricky thing with hospices is, they don’t always have beds. My Dad wanted to go into the hospice but couldn’t due to no beds. They really could have helped with his pain management.
My Mum wanted to stay at home & it was so much work for myself & siblings, and caused huge family arguments about her care & who was going to sit up at night with her, I don’t think I will ever speak to my sister again as a result. I really think she should have gone into a hospice, but it wasn’t what she wanted

Thanks for your reply. I fully appreciate hospice bed pressures and by no means think he would instantly get one.

My mum and myself are only able to cope with so much. His stance of not wanting the hospice is not an informed decision. But I am clearly going to need to continue to broach this with him. I’m a bit annoyed as I feel these PC teams shouldn’t just be taking it at face value, but I am not of rational mind and do know what pressure everyone is under.

Hopefully the community teams can offer more help.

He is at risk of paralysis from spinal cord compression and if this happens we can’t safely manage this at home, regardless of his wishes.

Thanks again for responding, I appreciate it so much

No experience but wanted to say I hope this goes as well as possible for you all. Sending strength

Hospices can provide support in the home. Why not give them a ring and see what they can offer.

I know from a few friends whose parents reluctantly went into hospices that they were grateful immediately for the care and focus there. If you could get a place, I’d push for that and let your dad know you and your mum are not coping.
I won’t go into details but one friend in particular said the end was traumatic as they couldn’t get on top of the drugs at all, and the visiting hospice team were not immediately available. It might be different for you and your mum given your training but it’s hard to be objective when you’re family too.
Very tricky so just want to send you my love.

I hope everything is going as well as it can and you’ve made some progress regarding the hospice.
My DH’s parents both died of cancer - his dad was in a hospice, which was amazing and a total home from home. By the time his mum decided she was ready to go to a hospice, we were told that it was too late (I’m not sure whether this was to do with availability or policy). She was then home until she felt very unwell (days / a week or so), when she was admitted to hospital. Whilst we would have chosen for her to pass away in a hospice, the hospital was actually ok - she was not in pain and she was in a room on her own, which meant that my husband and the family could spend time with her and be with her with the reassurance that the medical staff were available if needed - for medical reasons or reassurance. Sending you all love and solidarity at this difficult time.

I think you should speak to the hospice and put a plan in place . We nursed our mum at home and she chose to go into a hospice at a certain stage .We wanted to keep mum at home really but to be honest I’m glad she’d insisted on the hospice as we could not manage the pain relief effectively and she suffered (also we had little support as during Covid) your dad will be pain free in the hospice and you can be wife and daughter not medics xx

Hospices often have a Hospice at Home service whereby the person has hospice level care in their own home.
You need to ask the district nurse to complete a fast track application for CHC funding. This is for people who are on end of life care and expected to die in short time period. Once funding is agreed CHC will fund carers at home with night sits if needed to enable your DF to have the care he needs in his own home if he won’t/can’t go into a hospice. This would relieve your DM with caring for your DF.

From my experience and we had a similar situation with my dad he was totally against a hospice but once he was there after a lot of persuasion and a short visit arranged by Marie curie to the hospice so he could see it, once he was there the relief for all of us was immense, Marie curie allowed us as a family to concentrate on him and as a family they surrounded us with love and supported us so that when he did pass it was A good death. See if you can arrange for someone from the hospice to come and have a chat with all of you. Sometimes it’s the unknown that’s scaring people not the actuality, I do hope you get the support that you need. Big hugs

Does he not have carers coming in up to 4 times a day for personal care and giving medication?

So sorry about your dad, as he wants to stay at home, have you thought about privately procuring some extra nursing support to run with the support you have? They could help to manage medication, stay overnight so you and your mum could rest. I suggest this as its what we did for my grandad who wanted to pass at home. It helped to take some pressure of us as a family, but gave him peace from being at home x

Are Marie Curie nurses active in his area? They did some night sits for us when we were in this position

As others have said the hospices can work with you at home.
My grandad was in a hospice with cancer but didn't want to die in one. When it was nearly time he came back home and died that night.
My husband's grandad went in and was practically kicked out for being too well! He came home and immediate family card for him for a few weeks before he died.
Hospice's are great but I suppose they only can do so much. Sorry you are all going through this

So sorry for all your family are going through. Have you contacted the Marie Curie nurses, they are wonderfully

I was going to say the same thing. This is what we had for my Gran, and with my Mum she had care at home until she became so poorly (complex mental health needs as well as copd and bowel cancer) she went into a full time nursing home - as no hospice available.

I’m sorry you’re going through this.

My mum died of cancer at home, we had Hospice at Home care from the local hospice, a Macmillan nurse and a community nurse who came regularly. In the last couple of days we also had a night nurse (who may have been a community nurse too, I can’t remember). I agree with a PP that it took time to increase pain relief as we had to wait for the visiting hospice team. It was my mum’s wish to stay at home but I feel her last hours would have been better if she’d had immediate access to pain management in a hospice.

I’m an ex DN and would never ever choose to die at home. Firstly it’s just too much for the family in many cases. And the care is often disjointed and suboptimal.

Just because he says no to hospice now doesn’t mean he can’t change his mind.

Im a DN and have had people change their mind - we work very closely with palliative team - and they can often get people admitted quite quickly.

Is he in way able to your the hospice? Or can you/mum go and film it?

Also would a blister pack for his meds be a possibility? Take some pressure off your mum? Pharmacy can make them up for them?

My local hospice offered day visits - this was a good way to manage symptoms, socialise to some degree and demystify the hospice. They would only admit patients with a life expectancy of 2 weeks or less though

I feel for you as I've been through this with my Mum and I now have stage 4 cancer myself . Can he not have a syringe driver to save your Mum getting mixed up about his meds . I don't think it would be kind to force him into a hospice if he wants to be at home . He doesn't have much time left so it's not for long . I nursed my Mum at my home , it was hard but I can look back and think that it was the best thing I could have done for her . My sister came and stayed for the last 2 weeks and we took turns sleeping in her room . She was mostly asleep by then . I want to be at home if possible , surrounded by my own things and in my own bed , maybe this is how your Dad feels .

I'm sorry this is happening to your family.

I would ask the hospice staff to talk to him and discuss the pros and cons.

My son died at home (brain tumour that spread to his spinal cord). He died in my bed 17 days after being told his cancer was back and that nothing could be done. I was trained to give him feeds and medicine including morphine through his nasogastric tube and he was also on patches. I had a nursing team at the end of the line that I could call 24 hours a day.

In the last couple of days of his life he was very confused when he was awake and could no longer walk or control his bladder and we had to put him in pull ups (he wasn't aware or he'd have gone mental!).

One morning I woke up and I could hear the "death rattle". The hospice nurse came straight out when I called and agreed he was near his time. She was able to control his pain and reassured us that he wasn't in pain. He was 10 years old.

My mum had lung cancer and was determined she wanted to die at home. Me, my sister and my dad were all taking care of her at home. When she became very ill she had a catheter fitted by the hospice nurses so she wouldn't have to get out of bed so often. One day she suddenly announced that she had changed her mind and wanted to go into hospice! She was admitted the same day. We settled her in and it was agreed that me and my sister would take turns to stay the night with her.

My sister and dad went home around tea time as I was going to stay the first night. The nurses by this time had inserted a very fine needle in her arm for pain relief. At about 10pm that night her breathing changed. I fetched the nurse who said she didn't have long and I asked her to call my dad and sister back. They were only a half hour drive away but didn't make it back in time to be with her when she passed.

So, this is my experience of hospice care. Going from my experience it was much easier to take care of a child on hospice at home than an adult as we were able to lift and carry my boy but not my mum.

I've told my family that if ever I'm in a similar situation that I want to be admitted for hospice care as I don't want them to have the burden.

Also, my mum died in hospice care so was transferred to the funeral home from there. When my boy died at home he was obviously taken to the funeral home from the house. It was gut wrenching to hear them upstairs with my boy zipping him into a body bag and then watching them drive away with him.

My DF after a bad spell went to a hospice initially as respite for my mum while a support plan was put in place for him at home. Seems a strange thing to say but he loved the hospice. He knew being at home put pressure on my Mum and my siblings and I were an hour away so couldn’t support her as much as we would have liked.
He got fantastic care, my mum visited daily, family and friends visited regularly and he got his wee whisky every night.
I like to think he chose to end his days there as dying at home might leave us with sad memories of the house.
The care right up to the end was compassionate and caring.

A syringe driver would unlikely to be considered appropriate in this situation.

A pharmacy could support in having blister packs for regular medication to help to stop family getting confused over what to give and when. Also ask for medications to be rationalised if possible

So sorry to read about the loss of your young son @MuddlingThroughLife

You are doing a brilliant job and I feel for you- I’m 200 miles from a family member with terminal cancer. He’s in a home.
Your dad has capacity so his decision- even a poor one!- is what doctors hospice etc will go with. But hospice isn’t the only option. Carers can visit up to four times a day and can give medication. And many care homes offer palliative care. Having been terrified of care homes I’m now regularly visiting my brother in a wonderful home. I can ring them any time, they are so compassionate and the palliative care is excellent.
Maybe you can persuade your dad to visit one and see for himself?
For guidance I looked at the CQC website - v helpful.