how does hospital discharge requiring care plan work?

[falstaff1980]

Firstly thanks so much for all the advice I've got here so far, I don't know what I'd do without it.

My dad (82) has been eating and drinking less and less for months (just saying he has zero appetite and can't manage any of the food, drinks, and meal replacement shakes we put in front of him), is down to about 57Kg (he's 6ft 1), things came to a head last Friday when he got dehydration and was admitted to hospital. The doctor in A&E asked me why I'd brought him in and I explained about the dehydration, but also said I don't want him to leave hospital until he's got either a diagnosis, or an admission that they don't know what he has (call it 'old age'). They will be doing some CT scans and an echocardiogram this week (he's had these planned as outpatient appointments, but had kept cancelling because he didn't feel up to going to hospital).

The doctor at A&E was very understanding and encouraging, and said he wouldn't leave until then, and also until a care plan was in place for home care, and that they would make the referrals.

In the worst case that they are unable to diagnose anything treatable, is it likely they will refer my dad for home hospice care? As I understand it, this requires a terminal diagnosis, but if they can't diagnose anything can they still refer him to this (since it's evident he's slowly starving and he's not going to start eating enough or accept being force fed)?

This is extremely harrowing for me and my family, watching a loved one slowly starve. I thought most elderly people died of a heart attack or stroke, not of starvation or dehydration - I feel it's mine and my mothers fault for not pushing him harder to eat and drink more these past months, we just brought him all the things he's always liked, and the easy to swallow fortisip drinks, nagged him a bit to try and finish, but accepted and took them away when he said he didn't want more.

I don’t think they will discharge him to a hospice. Before he is discharged you need an assessment by the occupational therapist. DM could not be discharged till a hospital bed had been delivered (along with other equipment) and her living accommodation assessed. It sounds as if he will need a care plan too. So you will be hearing from social security. Do you claim attendance allowance? In the last week of DMs life (we refused to have her taken back to hospital) carers were paid for by social services; we were visited/ had phone number of district nurse team in case pain relief was needed , and we were supported by palliative nurses from local hospice. All arranged by GP who also popped in. The nurses even sat with DM overnight so we could get some sleep. Rather unsettlingly, and I mention this because it is better to be forewarned, the GP prescribed an ‘End of Life’ package of drugs. The pharmacist who knew DM was crying when she handed it over. Fortunately we didn’t need any of it. I am very sorry to hear about your father and I hope this information helps. Best wishes to you and your family.

In my experience nothing will happen until you hear the magic phrase "medically fit for discharge". You'd think that there would be some preparation in advance but no. There will be a multi disciplinary assessment before discharge which includes someone from the hospital social work team and the occupational therapy team. I would never have believed that all on the day mum came from hospital they'd fit a keysafe, visit for assessing the location for a fall alarm and have the home care team call. My phone never stopped ringing all day.

I know this is a worrying time for you but instead of running back and forward to the hospital, try to take some time this week for yourself. He's fine where he is, when he comes home you will be back to the worry and being on call for crises. Strange as it might seem, this is a chance for you to recharge your batteries for the next stage.

my dad went like this. he also had dementia. he totally went off all the foods but liked foods he liked in childhood like ice cream and jelly etc.

Feel your pain OP.

This is extremely harrowing for me and my family, watching a loved one slowly starve. I thought most elderly people died of a heart attack or stroke, not of starvation or dehydration It’s not that way around, OP. Your dad, sadly, is nearing the end of his life (may be months or years) and that is reducing his appetite. It’s a symptom not the root cause.

40 years ago Dad and I spent months nagging Mum to drink protein shakes that she hated. In retrospect, I wish we hadn’t. I wished we’d taken your approach instead. You have nothing to blame yourselves for.

We had a similar situation with my dad - over the course of a few months he went from walking 10 miles a day to dozing as much as possible and eating nothing but soft sweet foods. He went to the GP because he was losing a lot of weight in a very short time. There were lots of tests but everything was inconclusive.

My experience with my disabled DM after major surgery was very different from @Knotaknitter. I asked if mum was able to take herself to the toilet. She said she was and the discharge nurse said if that was all that mattered she was free to go. She couldn't get on or off the toilet - wanted me to take her and refused pretty much to engage with the care package. I can't talk about the horror of being at home in those first days/weeks without feeling sick but we had to buy our own key safe and had no aids or support until the OT visited a few days after her discharge. So be aware that best practice isn't always followed.

Thank you everyone, this has given me a lot of comfort to know so many others have trod this path before. I went to see my dad just now and he's in relatively good spirits considering. I'm waiting for the doctor who saw him before I got there to call with an update. In case the doctor is fearful of giving bad news I'll tell them upfront that I'm already expecting EOL/home-hospice care if a treatable diagnosis cannot be made.

My mum is now down to 30kg hardly eating or drinking.
She is in a nursing home and they are giving her sips of anything
which could keep her alive for months.
If your dad didn't or doesn't want to eat, you and your mum couldn't have
changed matters so don't blame yourselves

This is exactly what I fear, just saw my dad this lunchtime and he was furious about still being in the hospital, said some things to me that stung, accusing me of keeping him there. He has a CT scan later today, this is the test I'd told him he had to wait for, after the results from that he's not going to accept a delay in returning home. He will likely demand to sign a waiver form like he did before and expect me to take him home.

You can be busy, have your car off the road or have started on the wine if you don't feel that you are in a position to refuse a demand to take him home. He can demand all he wants, you don't have to do it. You're an adult now and don't have to jump to obey.

Be prepared for him to lie through his teeth to get home. No he doesn't need any services because he has 6 daughters who all live locally and can be on hand 24/7. Once I caught MIL airily waving her hand and announcing that her daughter in law would be able to meet all her needs. I had previously wondered why it was that she kept on being discharged with no care plan, that would be because she was telling them that I would do everything.

My dad died at 74 from dementia. He had one last visit to hospital, spent a week on a drip then was discharged to his care home to die. You cannot force someone to eat and he had enough of life. It's rubbish but letting him go was kinder than prolonging his life.

I think until you find out why he isn't eating it's very hard to plan for anything. Has he been assessed by SALT and dieticians? There's things like peg feeds available to those who meet the criteria, but without knowing your dad it would be impossible to say if he does.

I work in hospital with COE. This is unfortunately just a natural end to your dads life. He is eating less because hes dying not the other way around and honestly trying to feed him when he doesn't want it can be quite traumatic for people.
Also things like a PEG feed are generally not put in for this reason- its very traumatic and honestly what real benefit would it be. Also if your dad has capacity which it sounds like he does I would imagine he can and will refuse any more interventions and will be able to self discharge.
Also it's worth noting that forcing people to eat and drink actually doesn't prolong life.
Spend time with him now and enjoy his company and if he wants to sleep and eat one piece of toast a week then let him. At this stage it's about giving people peace and making them comfortable. Most of the time with elderly people it is just age related deterioration that causes the death.