Dying at home - the practicalities

[Swallowsflight]

My father is very close to kidney failure and he has decided he doesn't want any medical intervention at all. I have explained to him that he needs to speak to a health care professional to get this documented. I will sort this out ASAP. However, he is medical himself and very knowledgeable, so I'm not sure he will change his choice. However, I am just wondering how this will work in practice? Has anyone gone through a family member choosing a similar route? Will he need equipment / medication? At the moment he wants everything to remain as it is, with no changes. Sorry, this is all totally new to me.

He/you need to complete a RESPECT form which needs input from his GP. Paramedics if called, can override this but as long as DF can clearly say it is his choice to stay at home they should comply. This is not the same as a DNR.
My MIL wanted the same. We were provided with a suitable bed via her GP and we paid for home carers who respected her wishes for no external input. She eventually died at home but it was a rollercoaster and against our instincts not to ask for medical intervention to ease her exit.

Your DF is likely to need end of life medication, and will almost certainly need personal care. If he has money he could use a private nursing service to ensure his dignity and pain relief. End of life care at home is somewhat a lottery on the NHS, but his GP should be able to advise.

When my mother had a series of strokes we refused to let her be taken to hospital - we had discussed this and she had signed a DNR form at the surgery. She already had a hospital bed at home and carers four times a day. The GP was informed by the paramedics and he contacted the district nurses. He also prescribe a bag of End of Life medication which I had to collect from the pharmacy. We were also put in touch with the palliative care team who regularly visited and towards the end stayed with her over night so we could get some sleep. We had the district nurses on speed dial so that if she needed any pain relief we could phone them. You need the GP to visit from time to time so they are able to sign the death certificate. For the last few days of her life Social Services paid for the carers. We were very pleased that she did not go to hospital as they would have put her on a drip, done tests and prolonged her death. She died peacefully at home with myself and her grand daughter with her. The day before she died the whole family and her close friend visited and took turns to sit with her. I feel for you and your family but dying at home is the better choice and we felt it was a privilege to sit with my mother in her last days.

My mum died at home , originally we had carers in but my sister chose to give up work and be a full time carer with the help of myself ( retired nurse) and my eldest sister . As it was she died 3 weeks after my sister left her job and was able to be on oral meds and patches right up to the end but she did have a quick decline on one day .

sorry to interupt any ongoing conversations, but thought a respect form was same as a dnr form? my dad is 63 and has kidney failure, he has been on dialysis just over 2 years now because of it. xx

I cared for mil as she died in my home. You can contact your local hospice and they will advise you. They came and fitted a syringe driver to help.

That was pretty much the same experience we went through with our father. My sister and I are both retired nurses, so dealt with the end of life meds ourselves after discussion with dad's GP, who knew us and our family (small village community).

Yes been there. Bed in living room. Comode. Their choice. All just about manageable until last 3 weeks. In hospital when the person is in pain you click a button. Not so at home. You can be 4+ hours waiting for someone to come and up the morphine. It can be scary, upsetting and horrible to see someone in distress like that. In my case by time she had decided dying at home wasn’t the smartest idea, it was too late to move her. Last week longest, hardest of my life. I’ll go into a hospice, nursing home or hospital as leaving loved ones with that trauma isn’t right. Maybe some have good deaths at home, but like home births it can all go very wrong, very quickly and I’m never putting my DC in that position.

If my mum is being obstructive to him getting help to keep him safe (she may have cognitive issues). What will be done? What happens if she refuses to let people in to help. I just don't know how she will react, she's very unpredictable. She's abusive towards me when I try to help him. I don't see how this situation can work. I wish he would agree to a hospice, not even sure it will be offered. I'm at a loss as to how to manage her behaviour.

This. Ex district nurse of many years. Too many fragmented services pulled in several directions. Lots of broken promises of help that can’t always materialise when needed. I would never ever choose to die at home.

My father died at home from prostate cancer. It was absolutely grim.

When he was advised his condition was no longer treatable he was promised help from the NHS and given various options. After discussion with the family dad decided he would go into hospice when my mum could no longer look after him at home. But this isn't what happened.

Following his final hospital stay they failed to complete discharge papers so he was left in limbo with no meds for 10 days until Macmillan intervened to get GP properly notified. I think he had one GP visit and a number of district nurse visits over the next 3 months. But if they knew I was at the house the DN would say "oh your daughter's here, I don't need to come back". So I had to scale visits down or mum wouldn't get proper nursing support. Basically I was seen throughout the whole episode as a carer and not as family, both by my mum and by the NHS. This despite resolutely stating at the outset I would not do a nursing or care role but would help in all other ways.

At some point my mum unilaterally decided that dad wouldn't go to the hospice because covid restrictions would mean she couldn't visit. As far as I know there were no restrictions in place at the time (although covid was still around), I think it was just an excuse she came up with because she couldn't bear to have him leave. Or maybe she feared restrictions may have been put into place once dad was in the hospice. But mum never communicated this decision to anyone and it was only when I insisted she needed to ask for carers that a limited care package was agreed. No care firm was ever available to take it on. Mum eventually found a lovely private carer to help but it was right at the end of dad's life..

Dad did get short daily visits towards the end from the hospice nurses, and Marie Curie nurses would come out at night if needed. But that was it.

Medication was a huge problem. If Marie Curie had used all the morphine overnight a new prescription would have to be collected so it was a mad ring round/dash round pharmacies to get enough meds for the coming 24 hours. Often a 60 mile round trip for me to collect and deliver as mum could not leave dad to pick up locally. Why the NHS can't deliver to people in dad's situation I have no idea.

I would definitely choose a hospice over any of that.

If his kidneys fail completely, death will be quite rapid. It sounds like your DM is going to cause difficulties, but she may be more amenable to professional help - often people treat family worse than others.

It's not uncommon for medical professionals to have an aversion to medical care, unfortunately. I was a nurse and when I went on a maternity tour in my first pregnancy my only question was 'and how soon can I go home after giving birth?.

That's shocking organisation. I'm so sorry you had to go through this.
I used to spend hours sorting care at home as a GP. I once spent 3 hours on Friday 23rd December contacting so many people and making sure everything was in place for a gentleman to die at home. Even took the scripts to the pharmacy (no electronic prescribing in Scotland) but everybody swung into action and he had a very "good "death at home. As medical professionals we only get one chance to get this right. My own husband died at home and his care was good too so I really feel for you.

I’d say his GP is your ally, and the community palliative care team. I’d certainly share your worries about your mum. Is installing a key safe an option?

Thank you for responding, I really appreciate it. I think it's the first time I have ever articulated my thoughts about what happened to dad. I know there are excellent and caring staff in the NHS but we just could not get anyone to "join the dots" for dad and make sure he and mum had the care and assistance they both needed.