How to deal with care home re palliative/comfort only care vs antibiotics and steroids?

[Mxflamingnoravera]

Mum 87 in UK. Is in stage 6 on the 7 stage dementia journey, the only person she recognises is me and wakes up every morning not knowing where she is. She lives in a care home. If she leaves her room for food she doesn’t recognise it again an hour later. She has COPD and a uterine prolapse. She has the odd moment of lucidity but mostly she’s dozing or talking nonsense. Tonight at 8pm I was cooking supper and the home rang, they said her COPD was making her wheezy and wanted to give her steroids and antibiotics. Last week I spoke with her GP and we decided on a keep her comfortable pathway (no more antibiotics- but we didn’t talk about steroids) I told the home this tonight but got a bit of a frosty response. I was reduced to tears, I have talked this over with her GP and her 86 year old sister and we all believe this is the right thing for my mum.

I have to go to the home tomorrow to get things very clear and see how mum is. I feel torn, I cannot bear to see her disappear further down the dementia and COPD path any further, she left wishes about not being hospitalised or surgery, and the GP agreed to no more antibiotics but how to do I get this across when the home wants to give her drugs and will call in out of hours GPs and administer the drugs “in her best interest” if I don’t get there before the pharmacy delivery and have what will be a difficult conversation with one of the clinical leads. I want to say, give her oxygen, bronchodilator, keep her elevated, opioids if she is in pain but we are no longer treating the COPD, just symptom control and comfort. If her symptoms are distressing her then give her what she needs to take away the distress. I’m scared of being seen as “not caring”. If she was in her right mind giving me advice she’d say let her slip away in her time not the doctors. How do I stay calm and assertive and clear so they listen when I say these are our wishes? Nb only child here.

No advice but I wish you well, this is a kindness and shouldn’t be judged harshly.

Much sympathy. It's really difficult at this stage. My DGM is in stage 4/5 of heart failure and she is utterly weary of living and wants no more intervention. No capacity issues, but it's challenging when she wants a pathway the home (and my DF) don't agree with.

The care home nurses, as medical professionals, will go on the side of defensive practice if they have no other direct instructions. Their fear will be accusations of medical neglect, as it is more usual for families to want to keep a loved one going and hope for medical miracles against all odds. I'm not sure they always know what to do with families who don't think that way and are more realistic about death, and don't see it as a thing that must be kept at bay at all costs by science. I think quality of life is sometimes forgotten about.

I would just suggest being calm, direct and clear with the staff that this is what your mum would have instructed herself, and although this is very difficult for you, you are carrying out what you know she would have wished at this stage. Presumably you have POA? Can you show the care home any advance directives your mum wrote down before she lost capacity? I would also suggest asking your mum's usual GP to talk to them, as that puts another professional in your corner.

Ask the GP to document the agreed actions in a ReSPECT plan and make sure the home have a copy. You can put quite specific instructions in them about what you do and don't want and they can be completed with family if you've lost capacity.

FWIW I've met many people who at this stage focus on comfort rather than continuing to try and prolong lives where there is little quality, it's a valid choice and you shouldn't feel judged for it.

We are in this situation. Mum nearly died ten days ago but unfortunately has survived despite no antibiotics. I have (sort of) accepted that we have to have some kind of fight about this every time. Tbh you are more reasonable than me about what they should do for her. The fight is hard and painful and makes the situation infinitely worse.

I agree about the Respect form if they are in use in your area. But I’m afraid you need to have a meeting with the care home manager and you need to go hard. Their staff are not to override what her medically qualified general practitioner has decided with your input is in her best interests by abusing her with medical abuse off their own bat. I know it is frightening and exhausting to be ‘that relative’ but the only advocate for your mum in this situation is you.

Having said that, the GP practice can be your ally. Mums home have had the GP see her twice in ten days. The GP knows he plan so arrives, looks at her and goes away. The last one told me ‘the comfort only plan is all over the notes’ Thars what you need to back you up.

I agree that even a staff member looking the wrong way at me can ruin my day. I just have to believe that they don’t chat about me behind my back, though I bet they do. I know my mum.

I had similar situation with live in carers - I hate to say it, but I think they were more focused on their own income and if my grandmother died they were out of a job. It’s been more than a year and I know one of the carers hasn’t been able to find any work since, so my suspicions have sort of been confirmed. They made me feel awful when I withdrew treatment for my 98 year old grandmother with cancer.

I think you have to be strong and know what’s best for your mother. Its hard. Hugs.

I’m at her care home now and have met with the manager and she is clear that the route now is palliative care. She was very kind and sympathetic and will share this with the staff team this morning.

Glad theyre listening to you (and your mum) now and I hope her comfort care pathway is smooth for her and you now. Definitely keep fighting her corner as keeping her body alive is not in best interests any more sadly.

I feel for you OP.
Have had similar experience ourselves.
Of course the NH wants to keep your mum alive at any cost to what is best for her. They are directly financially benefitting from having her stay there.
I hope you have LPA in place and can manage to advocate for what is in your DMs best interest.

After a couple of really stressful visits to hospital for my DM after pressure from the GP the Home suggested we make an appointment with a local end of life/hospice at home charity. A nurse from the charity came to visit mum with me and another friend and we all agreed that going forward she would receive "such treatment as was necessary for comfort and dignity". This meant that even after her final seizure she was kept in the home where she was reasonably aware of who was with her and where she was. The coldness of the phrase "comfort and dignity" really hit me but all the family and the staff were in agreement that that was what was best for her.

Thanks to all for your support. I hope the home will now implement the plan we agreed yesterday.

I hope your mum has comfortable days ahead and a gentle passing when the time comes.

You do know that that’s complete rubbish? And very upsetting for the OP?

most nursing homes and residential homes actually have waiting lists.