Refusing hospital care?

[exLtEveDallas]

I wasn’t sure where to put this, but would appreciate any advice.

MIL is ill. She has a life limiting illness (COPD/Emphysema). She has spent the last 3 months in hosp but returned home (a new assisted living apartment) last week.

She is absolutely adamant that she won’t go back to hosp again.

She is still V poorly, it’s very likely her lung(s) will collapse again. She has a care plan in place (in the home) and a doctor who has known her for years that will come out to her if we call him.

However, what happens if the care staff call an ambulance if she collapses/starts struggling?

Can she refuse to go? What if she doesn’t have the ability to refuse? She had a ‘DNR’ type thing in the hosp, but I don’t think that stretches to actually ‘going to the hosp’ IYSWIM.

I tried googling but just got a lot of newpapee reports about unhappy patients/families where hospital admittance was forced on them.

Can anyone help?

If she is deemed to have 'mental capacity' (and there is nothing in your OP to indicate you feel she has lost mental capacity) then she can absolutely refuse to go to hospital. It's termed 'making an unwise decision' under the mental capacity act.

If the paramedics attend and feel she needs to go to hospital they will, in my experience, do everything within their skills to convince her to go.

Is she under any kind of long term conditions nursing team in place that can be more involved? Might be worth asking the GP.

Oh and if she has lost the ability to make a decision at the time e.g. she is unconscious the paramedics will make a decision 'in her best interests' (again this is covered under the mental capacity act) if they feel at that point in time she is unable to make a decision about hospital treatment. If she the regained consciousness and capacity in hospital then she could make the (unwise) decision to discharge herself at that point.

The DNAR only covers the treatment she has advised she does not want to receive rather than the place of treatment. So it means she has stated she does not want exceptional measures to be taken to save her life e.g CPR. It probably wouldn't cover being fitted with an oxygen mask and be transferred to hospital.

She could get an advanced care directive stipulating at what point she would agree to go into hospital, put in place which could be kept with her DNACPR. If the home call 999 and she has a reduced level of consciousness then she would be unable to consent and paramedics would have to act in her best interests in the absence of such a document.

Can palliative care be set up in the assisted living facility?

Would she consider an admission to a hospice rather than an acute hospital admission? Perhaps her GP could facilitate this?

She has no issues mentally except the usual “old and unwell” grumpiness. She did have problems at the start of her hosp which saw her put in a dementia ward for a week, but that was reassessed as a urine infection and she improved enough to be moved to the general ward.

She controls her illness herself, has oxygen etc. Her care plan is basically 4 visits a day plus meals. The home is fab, the residents wear call buttons etc and have nurses on call but this seems ‘over and above’

She is very frail, can’t really do much and spends most of the day in bed or on the sofa. We have been told that she is unlikely to live as far as summer, but unless her lungs collapse again (7 times in the last 3 months) then she’s not in any immediate danger. She is VERY vocal about not going back to the hospital, but if we aren’t there, I’m not sure she’ll be able to refuse (and that’s another worry, if we are there and refuse on her behalf, where does that leave us if she dies?)

She should have her DNR papers in her assisted living unit.

Your MIL can make an Advance decision to refuse treatment

Need to discuss it with GP and complete with them. Paper work will need to be kept at home and decision discussed with staff at assisted living accommodation.

Sha can absolutely refuse to go in to hospital if she has capacity to make the decision.

If she is certain of her decision, speak to a solicitor and draw up and advance directive (and provide the staff where she lives with a copy). If she is in the last year of life ask at her GPs if she has been identified as a 'gold standards framework' patient. This will give her access to palliative care and make more services aware of her.

Sorry, loads more messages.

Advanced Care Directive. Thank you, I’ll look that up.

Palliative Care. Not at this home, they do elderly care but not hospice type care.

Hospice. Not a chance, she only moved out of her home in Aug and that was a battle we’d been fighting for over a year with her. She would be FURIOUS if we suggested that! (She was a force to be reckoned with until recently - this is such a shit time)

Guys thank you so much. This is really very helpful and I appreciate it more than you know.

The hospice will offer community based services ‘hospice at home’ to provide palliative medicine in peoples’ own homes. Would your mother tolerate visits to help her manage her symptoms and clinical review/support? Her GP can refer her.

My mum and dad have advance directives and DNRs which are kept in a file by the front door - this also has records of all their medication and many illnesses. This way the paramedics can put their hands on it as soon as they come in.
If your mum is sure, then it would be worth getting her a GP appointment to discuss what she would like to happen in the event of another lung collapse, and get the home nursing staff on board with it too

Just an update. MIL had a meeting with her doc today and has put her Adv care directive in place. It will be finalised by the end of the week. The care staff are aware and will abide by her wishes, but want the paperwork first.

Essentially if she worsens/collapses the doc will be called and she will get pain relief, but nothing else.

We are all a little shell shocked, but thanks to everyone who posted, we feel a little more secure now.

thank you for the update. sounds like your mil and you are on the right track.

That situation is really difficult to handle. It is not good to force her, I agree that the paramedics need to explain to her the necessity of going to the hospital when badly needed.

Thank you for your update and explaining how this is working. Fwiw, I think your mil sounds an amazing character for thinking about and articulating her wishes like this.

We call these Anticipatory care plans (ACP) as GPs we discuss management with patient if capacity or their welfare attorney if they have one and don't have capacity. The software is linked to the patients records and shares it with the out of hours service, ambulance control and hospitals so they can see that decisions have been made.
Hopefully they get read but in the heat of the moment things sometimes happen too quickly. Especially if a carer doesn't know that it exists so communication is the key.