Are we mad to think the family could provide end of life care to my dying father

[UbercornsGoggles]

Dad has terminal cancer, diagnosed only a fortnight ago. He's deteriorating rapidly in hospital and wants to go home to die.

Everything is set up for him at home but due, I assume, to Coronavirus the hospital haven't been able to put district nurse support in place, and this is for the foreseeable future.

We have been told that he has to leave the hospital, he may get a hospice bed but this is unlikely. Only option seems to be to bring him home and care for him as best we can from home. We'd have access to the rapid response district nurse provision, but this is already stretched.

Really don't know what to do - if we refuse to have him at home we are likely to be stopped from visiting soon so he will die alone, but in the care of health professionals. If we bring him home there are 3 of us who could provide care but none of us are medically trained. We think he has maybe a month to live.

Any advice? Please be blunt if you have experience (professional or personal) and you think bringing him home would be a bad idea.

Hi, hospital palliative care nurse here.

I can’t say what provision there will be in the community, especially in the coming weeks, but I would say take him home. Just a few things the hospital should ensure he has before discharge (incidentally, has he been seen by the hospital palliative care team? They will help to co-ordinate this).

• if needed, a hospital bed and air mattress. You won’t need to turn him regularly if he has this either.

• if he can still swallow, oral pain relief that you can give as and when needed.

• ‘anticipatory’ injectable medications for common symptoms at the end of life. These are pretty standard, and although he might not need them now, they are there ‘just in case’. You will not be able to administer these, so if he is uncomfortable and can’t take oral medication, you will need to call the district nurse or community palliative care nurse to give it.

• depending on his symptoms, he may have a syringe driver giving continuous pain relief and / or other symptom control medications. He may not need this now, but if things change once he is home the community team will arrange this.

• I’m not sure what personal care will be available - this is usually provided by external care agencies (washing / dressing etc), but it is worth asking if a care package can be arranged. In our area this is still possible, particularly as hospital beds are needing to be ‘cleared’ quickly.

Feel free to DM me with any questions. Self isolating with a 2 year old at the moment though so apologies if I don’t reply straight away!

I wouldn't do it at the moment unless you are really confident you can cope. I'm a community nurse, we are all being recalled to the hospital so services are being cut. GP services are limited. There will be very little support available. I second enduring the syringe driver will be available.

Having experienced the death of a close relative from cancer in a hospice I would say it all hinges on whether you will be able to access enough pain relief when you need it. If no one is available to come and sort his pain relief driver your father could really suffer. Even with nursing support it's tough.
This is an awful choice for you OP

I was in a similar position (minus Coronavirus) a couple of years ago. We had a choice of hospital or home. We opted for hospital care. I have regretted it ever since. The hospital was totally over-stretched and my DM spent her last too days anxious and neglected. If I could do it again, I would totally bring her home.

To the PP who said he would die alone in a hospice- you are very incorrect!

My hospice is still allowing visitors just limiting the number.
They are loving, calm and wonderful places where people matter all the way to their death.
We don't just leave people in a room to die alone!

OP before discharge
Ensure that you have
A hospital bed with pressure care mattress
Hoist
Referral to your local hospice.

Have a look at your local hospices website, they will be keeping it as up to date as possible with how they are managing their services at this time.
They will also have lots of information on how to care for relatives at home, what dying looks like in practical terms etc
If your local can't help have a look at St Christopher's Hospice site. They are the mothership for all things hospice.

All the best and sorry for your family

I think op you may be under the wrong impression about how much community support is actually available under usual circumstances.
We have nursed 4 family members at home.
Tbh one got more support because carers were also used, but the others it was literally family only, except twice weekly Pop in review of medication, which had to be signed off by gp so wasn't a great deal of support or use tbh. The signicxant point was when the drivers were finally put in. But again once that happened there really was minimal input beyond the carer element for the one member.

The stark choice of death alone, quite possibly with a very understaffed ward, where he could God forbid even catch something else versus perhaps a logistically more challenging at home scenario I know which I'd prefer for my loved one.

Your husband is a father and guess what he will manage.

Your sister is a grown up and she too will manage.

Your mum even with mobility issues will too manage.

But most importantly, your dad will be relieved to be home, surrounded by his loved ones. He won't care about whether things are perfect. Give him that. He deserves that and so do you all, rather than the potential guilt of the alternative.

Fwiw we were given a 6 month diagnosis for 2 of the members, one lasted 2 months and the other 2.5

If it helps at all UbercornsGoggles, my DD is a carer in a home for dementia patients amongst others.

She has sat with a dying man, held his hand, talked as he wanted and needed. She says all the staff are like that. They all care and will take the time needed.

I've thought about you and your family today. @DPotter summed it up - there is no right decision. For me one of the most important things were that precious memories were made. It's hard but its not all doom and gloom. These moments made up for everything else that was hard.

I am so sorry you have been put in this position OP, how utterly heartbreaking for you and your family.
I am in a similar position as my mum has just started on palliative care in hospital due to a catastrophic bleed on the brain 5 weeks ago. We have been told the process should be fairly quick but if it does go on she may need to leave the hospital, I honestly cannot imagine what we will do. We have already been told that a funeral will be close family only and no wake allowed :(

Lots of very good advice here. In your circumstances I would absolutely push for home care. Take care of yourself.

We paid a friend who used to be a carer to help and that was a godsend. In these current times I would look at the possibility of hiring a nurse to administer pain relief. I don't even know if that's possible but I would look into it.

I’d say bring him home if that is what he wants , I’m an ex nurse but my sisters who had no nursing / caring background were just as involved as me ( if not more ) when we nursed our mum last year .

We nursed my DF and DMIL at home. Tbh I would only do it if you are guaranteed access to morphine. The lifting, moving, changing, etc, are manageable. There are probably some videos you could watch on YouTube if none of you have manual handling experience.
But, pain relief is essential and even when services aren't stretched there can occasionally be delays. I wouldn't want anyone to die at home without adequate pain relief. Ask the hospital how the local team would guarantee medication support if they're running a reduced service.
I'm so sorry you're going through this Your DF knows that you love him and that you'll make the best decision in less than ideal circumstances.

Death is not peaceful unless on morphine.

That really isn’t a very helpful thing to say. It may have been so in your case but as a nurse I have seen many peaceful deaths where opiates weren’t involved. OP, I kept my dad at home to die but had lots of support, especially from Marie Curie and the community nursing team. I also paid for carers. Would that be an option for you as it’s pretty expensive?

Umm, you sound wonderful and doing the best in the worst circumstances. I did care for my dying mum at her end and I would second the need for pain relief but almost everything else can be sorted with help and prep, but I found it difficult with my little girl who was then five. There were two other adults in the house, my brother and SiL, but my brother was helping with mum when it was my turn to rest and my lovely SIL was doing the Caring for us and her two children (little older) and I just couldn’t cope with DD as well and a lovely friend took her for a couple of days until DP could join us. I would say it is a full time job for two adults, probably three, with no other cares at all. Whatever you decide you will have done your best. I am so glad I could take care of my amazing mum but I can never repay or thank my friend enough who enabled me to do it. Xx

Hello OP. So sorry to hear about your dad. My reply echos much of the comments above. I cared for my mum with my dad's help at home with terminal cancer. She was on a syringe driver and had daily visits from the district nurses to change the medication in the driver. The biggest worry about caring for your loved one at home is controlling pain relief. As long as you are being supported with this then everything else can be done without nursing help. I don't regret a single minute I spent caring for my mum and would do it again in a heartbeat. Xx

Bring him home. My family cared for my dad in his final days at home.

Sorry for your sad news OP. I have personal, non medical experience. Bring him home. Practical things which help are disposable mouth sponges which are used to put moisture in the mouth. Disposable bed sheet pads which absorb and shield the skin in the same way nappies do. But pain relief is the most important. Oral morphine now and then meds in a syringe driver.
💐

I am a District nurse and have been advised that we do only essential visits and end of life care is definitely included . Essential care is classed as patients requiring medication/ care without which they would become very ill or experience pain . I would approach the GP/ hospital again and ask questions . Good luck xx

Hi everyone, thank you for your supportive and helpful posts.

Dad was lucky to get the last bed in the local hospice at the end of last week. I visited on Sunday and the hospice is lovely and the staff just wonderful. Dad is happy to be there, and understands why we chose that option rather than caring for him at home. For the family it's a huge relief as we were very nervous about how much district/Marie curie nurse support would be available as Coronavirus becomes more widespread. If we had been confident about availability of support for advice and pain relief we would have felt differently (especially after hearing so many people here say they cared for their loved ones at home), but we now know he will get appropriate care from professional trained staff when he needs it.

The hard thing now is that we won't be able to visit with the current travel restrictions. Mum may be allowed to go. We don't know how long he will last, and I'm now trying to come to terms with the fact that my visit last Sunday may be the last time I see him. It's very hard, but there are and will be many more people saying goodbye to loved ones over the next few months. Tough times for many.

I'm glad he got the hospice bed OP. Their staff will take excellent care of him. FWIW I was about to post that, in contrast to quite a few other posters, this might be something you just can't do by yourselves under the circumstances. It's really hard but at least you got to see him on Sunday and see him settled.

I’m so glad you found him a good place with wonderful people to care for him. You’ve done the right thing. Wishing you and your family strength, and peace.

Very sorry about your dad.

I'm so sorry OP, I made the critical error of not reading the full thread.

Best wishes to you.