Handhold over saying no to hospital

[FiniteSagacity]

I had a thread about medication refusal and things have followed the pattern some posters shared - that the next thing might be refusing food and drink. GP did rationalise medication but there is still insulin and some covert (not sure how much he’s actually taking as it’s all a bit hit and miss) I have asked that they go further to critical only.

Sadly now fighting an infection, so adding a medicine and hoping to get antibiotics into him without a hospital admission.

I have stressed that comfort and dignity are the priority. Had a very hard conversation about hospital (or not) because past experience means it’s likely that would be traumatic (ambulance, unfamiliar environment, catheter and iv) and nursing home staff are familiar with his needs and staffed so they can be more attentive.

But I’m in bits over this decision when I think back just 3 months.

I have flashbacks of the last hospital admissions when it was hard to see where delirium ended and dementia began. Hospital might be able to keep him alive but he might not even recover to his current baseline (a bit tired of the world).

I think you are absolutely doing the right thing
💙

💐 It's such a difficult time, but do what feels right for both of you. And don't let others question your decisions, what the medical profession does, is offer options, this doesn't mean you have to take them up on it.

It is very difficult, but you are doing the right thing. I had to make the same decision for my mother (twice) and I was supported by the care home, paramedics and GP. I hope you are finding similar support for your decision.

My mother has since died and I have no doubt about it being the right decision to keep her out of hospital.

My brother and sister in law who are both doctors are adamant about keeping my elderly mother in law out of hospital. They say it is completely pointless and cruel and when the time comes it's much better to remain at home. You are doing the right thing. But a hand hold because it's so hard xxx

Whem my DM went down hill suddenly after living with dementia for several years, we as a family took the decision against hospital admission. She was a life long refuser of medication and having dementia certainly didn't make that any easier. For her last few days she had analegsia patches as we thought she was in pain. She'd refuse everything else except the occaisional sip of water.

For us the down turn seemed very sudden as Mum had been pootling along for a while - frail but active, eating & drinking when encouraged. But that changed literally in 48 hrs and 10 days or so later she died. Admission and treatment were offered and it was easy to decline as the distress it would have caused Mum for a minimal & brief improvement would have been too, too much. We think she was comfortable, certainly none of her usual signs of distress, and frankly that's all any of us can ask for. The care home staff were lovely to Mum and to us and let us lead on everything. Mum wouldn't have had the same attention in hospital as that's not how hospitals work.

It's an awful time and even worse if it's just you making the decisions.

Be kind to yourself. Lots of us on here have been where you are and are happy to offer support when you need it.

You're doing the right thing.

My mother died weeks ago and stayed in her care home surrounded by familiarity.

We were all able to be with her round the clock for her last few days (which wouldn't have been possible in a hospital setting) and she was treated with such dignity.

No hospital admission is the kindest thing 💐

We refused the offer of hospital admission for MIL (mixed dementia) and she died peacefully in her care home.

Nurses did come every 23hrs to top up her drugs. Was definitely the kindest thing for her.

This is a very brave decision to make, but it seems to be in his best interests. I work in a hospital and it is heartbreaking to see frail elderly patients, particularly those with dementia, coming into A&E time and time again and being admitted. I would not want this for my parents nor for myself.

Part of my role is to try and prevent these admissions, by talking with patients, relatives and clinicians. Often, the ReSPECT form is updated with home/care home as preferred place of care, and the patient goes home with anticipaory medication and avoids any further hospital admissions. This is with the aim of keeping the patient comfortable in their own surroundings as they approach the end of their life.

You sound very caring and obviously have his best interests at heart. It doesn't make it easy though xxx

Thank you all. I’m fortunate to have siblings who are mostly on the same page - but I’m the local one so it felt like making the call was on my shoulders at the time. We had talked it through but it felt very different being so firm about it by myself.

I’m sure it’s the right thing for all the reasons posted - and I can see with hindsight that the GP was offering me information and choices and being really clear, not challenging me as to why.

Also good point that we can visit at any hour, for as long as we like. I forgot how restrictive that was in hospital and another reason why admission was so hard for him before.

As others have said, I also think you’re doing the right thing. Can you get support from the district nurses to help with keeping him comfortable?

One of my family members was in a similar situation recently and the family really wanted to keep her at home. It was looking likely until sadly she developed breathing difficulties and in order to be comfy, needed oxygen which could only be easily supplied at hospital. In the end she passed away in hospital but she was comfortable and it was peaceful.

If you can get nursing support to keep things comfy, you’re doing the right thing. Hugs.

Feels like it’s important to remember you are making this decision out of kindness for him. It’s going to be harder for you but it’s ultimately better for him. However counterintuitive it may feel. I’m going to be making the same suggestion and amendments to a respect form for my own mum. I think it’s for the best.

Thank you for the insight about oxygen and specialist treatment - apparently our NHS Trust does offer hospital at home and this is available in a care home.

I think you are doing abolutely the right thing. My DM died in December and we had signed a respect form so the nursing home had to prioritse comfort rather than active treatment. We had also made it clear that we did not want any more antibiotics. It was by far the best thing and she died quite peacefully without having to go through any more distress.

Good luck there. Xx

You are doing the right and best thing in this situation.
please be gentle on yourself, you sound lovely and very caring.

We’re in the middle of this with Grandad who was advanced dementia. There was a question of hospitalisation last week which we declined. The hospital at home team are now involved at the care home and have been fantastic.

Agree. I had to make this decision in advance re my Mum. The head of her care home called me in for a meeting and chatted through possible scenarios and whether I would want my Mum to go to hospital if she deteriorated in a way that wasn’t treatable, or whether I would want her to stay in her familiar room. I didn’t want her in a hospital with the noise and lights and too many interventions, she died in her own room with me and a carer with her, very quiet and peaceful.
It’s so hard making these choices.

Dear OP,
This is such a difficult and distressing situation. My mum had severe dementia and end stage COPD. My siblings and I had health and welfare POA and were clear and adamant that once mum was admitted to her care home after a long and incredibly distressing hospital stay that she would not be admitted again. Hospital admission caused her so much distress, she didn’t know where she was, what was happening and who people were. She stayed at the care home, being cared for by loving staff and with our regular presence for 18 months before she died surrounded by those who loved her. It was the most important gift we could give her. You are making the right decision x

I think we’re socialised into thinking that proactive treatment, investigations, all efforts to maintain life at all costs is always the right thing. In actual fact, we get old, our bodies fail and we do actually have to die. We don’t seem to want to let people do that anymore.
You are absolutely doing the right thing. My DM refused hospital for my 89 year old GM with dementia with pneumonia. What was to be gained in prolonging her life? She passed peacefully in the care home.
Too many people live too long. Dying with good supportive care is often far far kinder than the alternative. Nurse of 37 years.

My mum passed away from dementia in a nursing home. She’d been there for 2 years so was settled. The staff there had all been trained by st Christopher’s hospice so she was completely comfortable and kept pain free and had stopped completely eating and drinking.
We had 24 hour visiting. It was absolutely the right decision. we had complete privacy . She more or less stopped talking for the last month and prior to that hadn’t been able to have a conversation for months. We just held her hand and read to her as I didn’t just want to sit in silence. It was books she knew well, nothing demanding just gentle. It was the perfect end to a horrible horrible illness.
my mother in law died on a cancer ward which was noisy and busy and literally at the time of her passing, the doctor was talking to a patient in the next bed about his bowel problem. Although her pain was managed, it was hardly a private gentle death.

it’s definitely the right decision. We told the care home we didn’t want my father in law to go in to hospital unless it was totally unavoidable, as he got so distressed whenever he had to go in. He had a couple of chest infections and they stopped giving him antibiotics as they weren’t working. From there he deteriorated rapidly and was put on end of life care. The care home were so considerate of him, they made his room so cosy and welcoming to us all at any time of day or night and treated him with dignity. He lasted 6 days but honestly he seemed so ‘at peace’ for the whole time that it was quite lovely going to visit and sit with him as he wasn’t agitated or in distress. Had he been in hospital it would have been a whole different ball game.
Bw comforted by all these replies knowing that you’ve made the right decision x