Can we refuse to take Mil home from hospital.

[Burlea]

I asked about diabetes on another thread.

Mil 91 was admitted to hospital last week because of a water infection, while there they found her diabetes was up and down.
This water infection caused her to loose her mobility. So she can't go to the loo on her own, 2 nurses have to take her.
She is still on antibiotics for this infection. (3rd lot)
Her blood sugar is below 3 in the morning so they give her tea and toast. By the end of the day it's up to 20 it has been a lot higher. They have started to give her insulin
instead of tablets to try and regulate. When home a district nurse will call and give her the insulin. We don't know enough about diabetes to know if this is feasible.
Last night they moved her from the ward she was on(without telling us) and moved her to a rehabilitation ward and they have told her not us that she is to
start using her walking stick on Monday to hopefully discharge her by the end of the week.
At home she won't have strangers in so my Dh, DD and myself are her carers. As everyone will understand we can't be there 24/7 and she won't let us.
My worries are who will help her to the loo in the middle of the night. What if we are not there and she has a hypo.
Can we refuse her coming home as we don't think she is well. She still has the water infection. Diabetes all over the place.
Is there anyone we can call to assess her or will the hospital arrange an assessment of her needs.
Sorry for the questions but we desperately need advice.

You aren’t obliged to provide care just because she doesn’t want strangers there. And you can also tell hospital very clearly you can’t look after her at night. It’s their job to ensure a safe discharge.

💐 I have been there, the game of whispers where the patient is told something, or certainly, tells YOU they were told something...
It's unlikely that anything will happen over the weekend. And "maybe the end of next week" is 7 days, a long time when you're talking a very old lady in poor health.
See if one of you can go in on Monday morning (just after ward rounds end is a good time to pounce) and have a chat to her doctor armed with notebook and pen. (Do any of you have health LPA for her?)
Yes, she has to be assessed and no, she can't be discharged if it's not safe (never mind if they need the bed).
Don't panic.
I remember a couple of months ago having the same weekend convo with my Mum ("oh they're sending me home on Monday") and promptly getting her partner (who was due to visit next) to make sure she didn't have any house keys on her in hospital :D (we were both panicking as you DO hear some stories but clearly if there was no means of getting her into the house if we didn't let them in they couldn't just dump her).
In fact Mum had been told that they would START assessing her & thinking about POSSIBLE discharge STARTING Monday. And the hospital assessment team were fine and set things up (carers, equipment) adequately for her discharge (which was much much later than Monday).
Hospitals at the best of times are not very nice to be in and so little old ladies knocked halfway into space by a UTI and with their blood sugar skew-whiff can hear what they want to hear to an extent.
The best thing is to go in and talk to people face to face, anyway, be super polite but persistent and if someone says they can talk to you in five minutes, well, it may be more like 50 and keep a beady eye on them as much as you can because sometimes they do get distracted and forget - not often, thank goodness, but if you've taken time off work for this, you don't want to have to take a second day because Dr Bloggs legged it IYSWIM.

Speak with the discharge officer who can over rule even what a Dr says about discharging. My Dad in his 80's was being sent home after being in hosp for 5 days with a chest infection. He was so weak couldnt walk unaided, had hardly eaten....hadnt opened his bowls for 5 days. They gave him laxatives and 3 enomas (sorry cant spell it) he was in so much psin from the toilet business. The 20 year old OT said he was fine to go home and when I raised my concerns she said ..well just bring his bed downstairs!!! I told her how on earrh could she think that forcing him to be bed bound was going to aid his recovery!!! A nurse on the ward told me to speak and expressed my concerns again to the Discharge officer on the ward. This person was great and agreed with me, spoke to my Dad and immediately over ruled....and booked him into a rehabitation home for 2 and a half weeks. In that time they helped with physio ever day, fed him up and got him on his feet again. If he had been sent home within 24 hours he would of been back in hospital Im sure after falling or something

You really have to fight your corner...I had 2 meetings with the OT went to the hospital and waited for the Dr to come round and got meeting with the discharge officer....very stressful. My Dad now has carers in he was dead set against it but I just broke down one day and said I cant do this on my own everyday. In time he just got use to it.. mostly regular carers go in so he gets to know them.

When the hospital wanted to discharge my mother and told me I had to give her daily injections for a while (forget why, now), I refused to take her home.

5 minutes later, they'd arranged for the District Nurse to go round and do it. Amazing!

Doctors decide if a patient is medically fit fir discharge. Then it's all social dealt with by the nursing staff and social workers.
The best people to speak to on the ward are the nurses. There's no real need to speak to the doctors unless there's a need identified by the doctors themselves or a deterioration. And just because they are walking around on the ward does not mean they are free - especially to speak to relatives who are visiting outside of visiting hours. They're working !

If she is not deemed to have impaired capacity then they do not have to discuss your MIL decisions with anyone other than she the patient.
Just like if you were admitted, they would not discuss your discharge with your relatives unless they believed you didn't have capacity to make decisions.
So your question should be, does she have capacity to make decisions (including health and whether she's able to cope in the home with a care package that is not 24 hour care)?
And your next question should be, how can you provide evidence of this to the medical team aiming to discharge your MIL.

Once medically fit though a hospital is not the best place. Sitting in a hospital bed for no reason doesn't help anyone!

Yes to speak with relatives is only possible with the patients permission.

As others said if she is fit for discharge then she is fit for discharge. Daily insulin injections can be done by the district nurse absolutely. A UTI is not a reason to occupy an acute hospital bed.

Bringing the bed downstairs is simply to avoid having to climb stairs at bedtime

And to thus reduce falls

You can tell them it is an unsafe discharge.

I used to be a district nurse yes they will give insulin /check her blood sugars etc but won't do long term personal care.
Requst dm has an occupational therapist and physiotherapy assessment plus a home assessment (where they take her home to assess her needs). Also speak to ward staff about your worries and ask to speak to discharge liason who will have knowledge of support you can access. Does she have stairs? Can she manage at home? Can she live in one room (bed, chair, commode all close together). Is she drinking enough at home /remembering to drink this is a reason many elderly get utis will this happen again once home. If it may happen how can risk be reduced? Would she accept short term carers (you get 6 weeks post discharge free) on the proviso that if she accepts she can go home. Also rehabilitation beds in residential /nursing homes are available to get somebody as fit and mobile as possible before returning home. Consider the need for a hospital bed. Do you have emergency alarm system if she falls most councils outsource this to private providers these days. Look at local meals on wheels delivery or day centres or companies like Wiltshire farm foods who provide microwavable meals. Also worth looking at possibility of her accepting a cleaner so the demands on you are reduced.
Finally you do not have to do all the care your dm may need to accept she has to accept some outside support. You need to look after yourself in order to be able to look after her decide what that looks like.

Thank you for your advice. It's very worrying that the uti is not only causing confusion but also not being safe on her legs. Never mind the diabetes.

At home she won’t have strangers in so ..we are her carers

I hear this over and over again with regard to elderly people.

Either they have capacity to make the decision not to have strangers in or they do not.

If they have capacity, they need to accept the consequences of their decision. They need to be told they cannot force family members into the role of carers. If they refuse help they will probably suffer and die. At some stage they may be forcibly removed to a residential facility. This is their choice.

If they do not have capacity you (if you have P O A) or you and the hospital social work team need to make a best interests decision for them.

Your MIL is entitled to six weeks free care from the LA (four visits a day) if she is discharged home from hospital on her own. If the LA do not think they can meet her needs with four visits she will need to go into a residential facility. Her needs will be reviewed after a few weeks and a decision will be taken regarding a move home or to full time residential care.

Often people are more amenable to outside help once they have had a crisis of this nature.

Do not let her guilt trip you into becoming a full time carer. It will eat away at you, your marriage and your children’s lives.

Yes you can refuse to be her carers, take her home or set anything up. You cant stop her going home if that is her wish and she has full mental capacity to understand the risks involved. You could write down your concerns, how will she get home, how will she prepare meals, get washed, go to the loo, shop, clean, let the district nurse in, call for help etc. Give that list to the ward manager, the social worker and the discharge team.

I would ask for her needs to be assessed by a social worker before she returns home as you will not be able to provide the care she needs, and she will be at risk on her own. There may be some assistive technology that could be put in place, but if she has capacity, understands the risks and does refuse help from strangers, then that will be her decision too.

The discharge nurse is your ally here. Make contact and make it very, very clear to them that you can't help.

@Burlea..

I think the issue here is that everyone recognises she needs additional support/care but I do not agree its an option to refuse to take her home.

The hospital (ot team, doctors ect) will identify if she needs hospital treatment - she doesnt need to be in hospital for a UTI or for diabetes meds if district nurses can be arranged.

You cannot force the hospital to keep her, against medical advice because she doesnt have sufficient care at home. Especially if the reason she doesnt have the care is because she has capacity and is refusing.

This is the crux of it. If a similar patient was happy to accept LA carer visits several times a day and family were willing to check up on them ect there would be no question about going home.

Everyone is nervous when an elderly relative comes home from hospital,woried they will fall,or hurt them selves... but unless she on a specific high risk fall watch she can easily get out of bed at hospital and fall... trust me.

She is much more suceptable to general deconditioning, exposure to illnesses and likely to become significently more dependent and less confident the longer she has nurses running round after her in an acute hospital setting.

Unfortunatly as loved ones age and there care needs increase there is this misconception that the NHS will just foot the bill. Why should she bed block/cost money/prevent elective operations because she is refusing to accept the free care offered by the disctict nursing or local authority?

You need to have a very frank conversation with her explaining the problem of staying in hospital, refusing care and decide on an agreeable input from yourself and other family members. There maybe a compromise... you visit more on days 0-4, then reduce 4-8 ect.

A respite bed at a local community hospital may suffice for a few weeks... but if they are predominatly HCA lead she is more likely to be safer with multiple qualified nurses attending her home. Thus the communuty hospital may say no

I absolutely would not fall into the trap of being her carer. Your nuclear family take priority. Is your DM really quite happy for you to run round after her to the detriment of your own mental health??!
Her hospitalisation is your opportunity to step right back. No shopping, no cleaning, no washing, no toileting, no taxiing about. She will absolutely have to have carers and if she still refuse I agree with pp, ask the ward staff who will be doing this for her?
After all, isn't this situation what we save all our lives for? To ensure we are safe and cared for in older age. It's selfish and unreasonable to expect you to do it indefinitely.

Hey there, nurse here. Apologies if this is long!

Hopefully, the insulin twice a day would have sorted her blood sugar levels. I’ve done district nurse referrals for admin of insulin, so that shouldn’t be a problem. Where I work, patients are often transferred to a “less acute” ward when they’re medically fit. This is a good thing (in my eyes), as it means that they’re on the road to recovery and not needing an acute bed.

Also, and this is a bug bear of mine, doctors will often say, “yes Mr Joe Bloggs, you’re medically fit for discharge”. Patient only hears “fit for discharge”. As a nurse (and also the team looking after the patient), I look to see that the patient is not only medically fit, but also “therapy fit”. So...
-would the discharge be safe? What is the patient’s home situation?
-does the patient need any additional help/support/aids at home?

• can they mobilise safely?
• can they look after themselves/carry out daily activities of living safely?

-do they have capacity and if so, do they consent to having any help etc once home (and understand the risks of declining help)?

When you speak to the nurses, please know that if your MIL has capacity, then they will only speak to you about her care if she allows it. I will always get permission from a patient (who does have capacity), before I discuss anything with relatives. Ditto phone calls (I won’t discuss pertinent details over the phone due to confidentiality. I can’t see who I’m speaking to - I do explain this to patients and their families).

Tell the team looking after your MIL about your worries and concerns. Explain that you are not able to be there 24/7 (I promise you, no one would ever think less of you needing to put yourself and family first - there’s a reason that airlines tell passengers to put the oxygen mask in themselves first!). It’s important to explain this, as all too often we hear that Joe Blog’s daughter will be there 24/7 to look after everything for him (never mind the fact that she works full time and has a young family!). Ask for OT and physio referrals. Ask about a SS referral. NB SS often don’t see the patient until they’re medically fit. OT and physio will see patient throughout (assuming the patient has been referred to them!).

If the patient has capacity and declines OT/physio/SS referrals, then legally we can’t force this on them (no matter how frustrating it can be for loved ones!).

As a nurse, I’m always happy to explain things to families (assuming patient consents to me doing so). I’d rather spend a few minutes explaining things so that everyone (patient/family) knows the situation and is singing from the same song sheet. I would far rather take the time to do that, and address any worries, than find out that people have been worrying about things. It’s stressful enough being in hospital or having a loved one in hospital. Yes, I’m busy, but this is part of my job. If I don’t know something, I’d say so and then find out/feedback. If I can’t talk right at that minute, I’ll say so and then come back, or I’ll hand it over to a colleague. In short, please don’t hesitate to talk to a staff member. I really hope that this helps x

Ask for a meeting and state you want it out in writing that you believe this to be an unsafe discharge. And if they disagree they need to show you why.

PS please tell the staff about the home situation. I’ve known patients swear blind that all is hunky dory, that they can manage perfectly, that their son/daughter/friends/family/their best mate etc are all on hand to do everything for them. The next thing I know is that isn’t the case at all.
I’ve had to sit and talk to a lady once, who was not coping with having to do everything for her parent. She was disabled and a mother of young children. She was tearing herself apart as she WANTED to be everything for everyone. I had to tell her that it was ok to step back, and that she had to look after herself and her children first (as who would be there for her?). It was the first time anyone had told her that, and the relief on her face was palpable.

Mil refused to have fil home until there was a care package in place. He has passed away now but she said no way to a bed downstairs etc and they sorted it out very quickly.