End of life rights
Discussion
My partners father, 83, has a number of issues which the NHS have done a great job of treating.
Unfortunately the treatments have opposed each other and they have thrown in the towel, he is now on palliative care waiting to die.
He has expressed a wish to come home, which has been supported by the palliative care team, however they are only offering daytime care.
Looking at his notes he has been receiving 24 hour care in the hospital, I work shifts and can use my holidays to be there for a month or so, partner works days so she cannot help with most nights.
His wife is 73 and doesn't think she can cope with the nights without help.
Help?
Unfortunately the treatments have opposed each other and they have thrown in the towel, he is now on palliative care waiting to die.
He has expressed a wish to come home, which has been supported by the palliative care team, however they are only offering daytime care.
Looking at his notes he has been receiving 24 hour care in the hospital, I work shifts and can use my holidays to be there for a month or so, partner works days so she cannot help with most nights.
His wife is 73 and doesn't think she can cope with the nights without help.
Help?
I have some experience with this,and although it is a very difficult decision I would advise you to have him stay in the palliative care centre ( I assume it is a hospice ).
Death can be unpredictable with needs for full time care. My mother died at home and it was not the peaceful slipping away you see in films.
For what it’s worth I would suggest you do not move him to home.
Death can be unpredictable with needs for full time care. My mother died at home and it was not the peaceful slipping away you see in films.
For what it’s worth I would suggest you do not move him to home.
I went through this a few years back with my Mum. She wanted to die at home with us, but my daughter was very young at the time, and I didn’t think was a positive thing to see her Gran die in front of her eyes. Going against my Mums wishes was 100% the right thing as she had amazing end of life care and passed peacefully with no pain at all.
My advice is do what you think is right.
My advice is do what you think is right.
He is currently in a hospital, they feel, correctly IMHO, they have done all they can and , putting it bluntly, would like the bed freed up for someone they could do more for.
I just don't get why, when he requires 24 hour care in the hospital, it drops to 12 hour care at home.
I'll happily burn all my holiday entitlement, I cannot however find nightime care for him if he survives past 6 weeks.
Shouldn't the NHS provide the same level of care at home as they did in the hospital?
I just don't get why, when he requires 24 hour care in the hospital, it drops to 12 hour care at home.
I'll happily burn all my holiday entitlement, I cannot however find nightime care for him if he survives past 6 weeks.
Shouldn't the NHS provide the same level of care at home as they did in the hospital?
It sounds from what you are saying, rather than choosing to come home, he is refusing care in a hospice or care home.
Have you, his wife and your partner explained your concerns that you won't be able to meet his needs?
Might be worth asking him if he's considered the impact of on others as well as himself. One or two very difficult conversations now might avoid short to medium term unecessary suffering and longer lasting consequences for survivors.
If he has capacity to make decisions in re health and welfare, the hospital will discharge him home even if his decision is unwise.
If he lacks capacity, decisions are covered by the MCA. Patients with capacity have the right to refuse medical treatment but not basic care. The MCA places no duty on family members to provide care for incapacitous loved one, professionals have a duty to consult with family be consulted in about decisions.
The palliative care team are probably best placed to advise about his needs and how they are best met. You mention 6 weeks so it sounds like there a social worker or continuing care nurse involved. 6 weeks is the arbitrary time limit on 'end of life' funding. These additional funds are available to cover end of life care needs - this is usually full nursing care in a suitable home but can pay for home based care. He would not get 1:1 care in a nursing home so this wouldn't fund round the clock attendance at home either. So nursing at home comes with numerous practical difficulties where the family have to fill the gaps between visits. It sounds you are all well aware of what this means. If he survived 6 weeks he would be reassessed and almost certainly qualify for ongoing funding.
Have you, his wife and your partner explained your concerns that you won't be able to meet his needs?
Might be worth asking him if he's considered the impact of on others as well as himself. One or two very difficult conversations now might avoid short to medium term unecessary suffering and longer lasting consequences for survivors.
If he has capacity to make decisions in re health and welfare, the hospital will discharge him home even if his decision is unwise.
If he lacks capacity, decisions are covered by the MCA. Patients with capacity have the right to refuse medical treatment but not basic care. The MCA places no duty on family members to provide care for incapacitous loved one, professionals have a duty to consult with family be consulted in about decisions.
The palliative care team are probably best placed to advise about his needs and how they are best met. You mention 6 weeks so it sounds like there a social worker or continuing care nurse involved. 6 weeks is the arbitrary time limit on 'end of life' funding. These additional funds are available to cover end of life care needs - this is usually full nursing care in a suitable home but can pay for home based care. He would not get 1:1 care in a nursing home so this wouldn't fund round the clock attendance at home either. So nursing at home comes with numerous practical difficulties where the family have to fill the gaps between visits. It sounds you are all well aware of what this means. If he survived 6 weeks he would be reassessed and almost certainly qualify for ongoing funding.
Have you and your wife spoke to your employers? They may offer some compassionate leave or flexible working to allow you to care for your father in law.
If you work for fairly large organisations I would expect that they could make allowances to care for your father in law. To be fair to the large company I work for they generally are quite compassionate and recognise not assisting can cause you huge amounts of stress that could likely see you on long term stress sickness leave anyway.
Have a frank conversation with your employer first and see if they’re willing to be flexible
If you work for fairly large organisations I would expect that they could make allowances to care for your father in law. To be fair to the large company I work for they generally are quite compassionate and recognise not assisting can cause you huge amounts of stress that could likely see you on long term stress sickness leave anyway.
Have a frank conversation with your employer first and see if they’re willing to be flexible
My father died in a hospice, my mum died in hospital (both from cancer)
I wouldn't have wanted them at home as I couldn't provided the round the clock expertise required, and the constant vigilance and access to enough morphine.
I don't want to be the downer here, but having seen both parents at end of life, don't underestimate how much support and drugs they might need.
I wouldn't have wanted them at home as I couldn't provided the round the clock expertise required, and the constant vigilance and access to enough morphine.
I don't want to be the downer here, but having seen both parents at end of life, don't underestimate how much support and drugs they might need.
Have been through this just over a month ago with my Dad who had acute myeloid leukemia.
He was in hospital and had the choice of coming home or going to a hospice for his last few days.
He was 83, and my Mum is 80 so there is no way she had the capability of being his nurse. We had carers coming in three times a day, plus my brother thankfully lives nearby so was on hand too.
If I'm honest there were quite a few negatives. He died in the front room, and the bed he was in wasn't collected for a fortnight and was a constant reminder. Plus it still smells of all the various medications he was on. And both my Mum and brother still 'see' him lying dead in the front room.
However it was what he wanted and he, mercifully, passed away within about a week of coming home and wasn't in pain.
There isn't a nice option sadly IMHO.
He was in hospital and had the choice of coming home or going to a hospice for his last few days.
He was 83, and my Mum is 80 so there is no way she had the capability of being his nurse. We had carers coming in three times a day, plus my brother thankfully lives nearby so was on hand too.
If I'm honest there were quite a few negatives. He died in the front room, and the bed he was in wasn't collected for a fortnight and was a constant reminder. Plus it still smells of all the various medications he was on. And both my Mum and brother still 'see' him lying dead in the front room.
However it was what he wanted and he, mercifully, passed away within about a week of coming home and wasn't in pain.
There isn't a nice option sadly IMHO.
It may be worthwhile discussing your needs with a body like MacMillan to see if they can give guidance / help. There are a lot of people outside of the NHS that can advise and support.
Personally I knew nothing about the support for dying people's needs / wishes until I went to a "Dying Matters" Awareness "meeting".
Personally I knew nothing about the support for dying people's needs / wishes until I went to a "Dying Matters" Awareness "meeting".
carinatauk said:
It may be worthwhile discussing your needs with a body like MacMillan to see if they can give guidance / help. There are a lot of people outside of the NHS that can advise and support.
Personally I knew nothing about the support for dying people's needs / wishes until I went to a "Dying Matters" Awareness "meeting".
I've been using the MacMillan nursing help for me with cancer. I've found them very helpful, honest and straightforward. They've seen it all. They don't direct, but merely gives answers to questions. For me, they've been great. Personally I knew nothing about the support for dying people's needs / wishes until I went to a "Dying Matters" Awareness "meeting".
Another vote for them.
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