Do I complain about this nurse officially or just leave it. I'm livid

[bonusjonasus]

My father is in a care home, he has had Alzheimer's for over 10 years now and has rapidly declined over the last year. He is no longer able to communicate nor is he physically able. He has picked up several infections and been treated with antibiotics and had several 'it's time to say goodbye' moments but has always recovered.

Last week he was showing signs of another infection, and we (me and siblings) made the decision for no further antibiotics and to just make him comfortable. We were told to come and say goodbye on Sunday. Since then, it seems he is recovering. He's remained in bed and asleep mostly but seems comfortable. Staff at the home and nurses have approached twice since Tuesday so say they think we should give antibiotics. We have agreed not to (sibling has POA)

Anyway yesterday one sibling was pulled aside by a nurse who said that she was concerned about his treatment and withholding antibiotics and in her 30 odd years of nursing she has never seen anyone withhold antibiotics. Then went on to say her she nursed her mother and never would have treated her like this and then started mentioning money being split when her mother died (wtf!?)

I am so angry I am shaking. The care home manager was dismissive and appears to share her view.

My father no longer has a temperature and is comfortable in bed, he's 94. He has no quality of life and we don't see antibiotics making any difference (the last lot he had caused quite sever bowel issues)

Obviously the manager at the home doesn't think this nurse has done anything wrong. But I feel she has massive overstepped here and wondering if my want to complain officially is unwarranted?

I think nursing homes sometimes lose sight of what is best for patient and family. The fortified drinks, the antibiotics for all infections, many pills, just keeping shells alive as they are wheeled between bed and lounge. It becomes normalised because this is what they do all day/ night.

Harsh as it sounds they are also not keen to lose self funding patients as that's where the profit comes from.

Bloody hell. That nurse sounds very inappropriate. At this point antibiotics wouldn't be life saving, they'd be death prolonging. You are absolutely right to keep your father's best interests at heart, and those best interests include compassion and dignity, not futility.

The nurse is definitely being inappropriate. When my family made the same decision for my aunt, the Gp and care home supported us in that.

Thank you both so much. I couldn't sleep last night, doubting our decision, feeling this immense guilt. And then this morning I was angry because how dare she do that to us.

What you say about self funding patients is awful! And this is the case in our situation.

My father is existing, not living and has been for some time. Life really can be so cruel some times.

I can understand why you upset, its a bloody hard decision to make (I've been there) and you don't need the extra guilt being added on top. I would make a complaint, I think they need to remember what their role is.

I would make a complaint and ask for an independent professional to give their honest opinion on the care plan and decisions made to give you some reassurance.

The way some humans end their lives in care homes is horrific, and we don't let animals go through that.

I know we can't go about putting humans to sleep, but if there comes a time where medication is just keeping them hanging on with no hope of quality of life of recovery, then I think it is the kindest thing to do to allow them to slip away when the time is right.

Hi nurse here and previously in Palliative care...You'd be right to complain. Its not up to a nurse anyway whether or not antibiotics are prescribed that's a medical decision. And you're right it sounds like it wouldn't be the best action for your father.

As another pp has said, some nursing homes endeavour to drag out the inevitable and it's not always in the best interest of the patient but just "the norm" or "protocol".

A greater focus I believe should be in truly good quality end of life care and comfort with particular focus on excellent pain management and symptom control...nursing homes tend to be crap at this..reluctant to administer (prescribed) healthy doses of controlled drugs. There's a general fear around them.

Make sure your dad gets all the comfort and top quality care he deserves. Don't be forced into antibiotics or anything you might feel will prolong his discomfort. And if he is sore/agitated push for the good stuff...that's what the medication is there for.

Hope you get some clarity and your father gets the care he needs. Xx

Such a hard and painful decision in the first place. We all have to die of something, you are clear that he exists and his little quality of life.

I would complain

I don’t mean this badly but the care home staff see your dad every single day, they know him as he is now better than you if you only visit every so often, they probably have grown attached to him and are advocating for the man they care for now rather than the shell you think he is.

This is something you won’t get until you work in a care home - it was one of my first jobs and one of my first patients was a man who couldn’t move or talk. He’d still smile, still look to the bookshelf when he wanted me to read him a story, and his eyes would twinkle when we shaved him and dressed him in Sunday Best. To us he was enjoying life as best he could. We were absolutely devastated when he went into icu and the doctors (and his children) agreed not to resuscitate.

You really don’t need an interfering nurse pressuring you at such an awful time. Definitely complain but maybe leave it a little while so you can tackle it when you are feeling more calm. Otherwise they’ll just dismiss you as over emotional.
You are giving your DF a good death, which is a great gift.

Don't doubt your decision. I have already had this conversation with my elderly mum when she signed the health POA. I wanted to know what she wanted to happen whilst she is in her right mind. She is clear that once dementia sets in she only wants painkillers, nothing to extend her life.

Totally agree.
”had a good night” “eating well” etc when my relative was practically comatose for 3 months and it’d have been much kinder if they hadn’t been kept going well beyond what was humane.
It’s given me total fear of being old - I really hope there’s a Dignitas in the high street by the time I’m in that condition.
OP, I would complain, but maybe not now, you’ve enough to be dealing with at present. You have my sympathy, it’s an awful time.

You have made the kindest decision for your beloved dad op. Maybe complain after he's gone. If you still feel you want to. Look after yourself. It's so tough. I'm so sorry X

I would probably speak to the manager again in a few weeks. If the nurse had genuine concerns regarding the plan of care , she should have raised it with your dads gp, not you.

I'm so sorry you are having to deal with this at such a stressful time. And I hope the next few days are gentle.

Nurses absolutely should not be guilt tripping you into agreeing to antibiotics. Especially, as I imagine the decision was discussed between yourselves and your dad's GP or other Drs and is formally recorded in his notes.

Please do complain if you have the energy. Tell the home manager and your Dad's GP surgery. Its possible the "Nurse" isn't a qualified member of staff who has overstepped their remit, but they need to work within their boundaries.

@JustAMinutePleass

Just wanted to reply to say that my fathers is visited every single day by someone in the family. Every. Day.
I am there most weeks 4/5 out of 7 days. He is not living, there is no joy, and with all due respect that family you speak of made the kindest decision and if you think resuscitating someone in that condition is the right thing to do I'm glad you no longer work in that field.

This has made me have conversations with my own children, about my wishes. I wouldn't wish what my father is going through in my worst enemy.

I really appreciate all the comments, and maybe those saying to wait are right. At least until the anger has settled. My mother is also there too, in the same home, and I don't want to rock the boat too much.

It seems his care is best discussed between you / POA and his GP? The nursing home carers or nurses don't have any decision making powers/ can't prescribe anything anyway, they just call the GP to visit is that what they wanted to do?

We made the same decision for/with my late dad, because he had ni life, just an existence. He did recover from that (chest) infection, but died a couple of months later from fucking covid.

We had it documented with his GP (before he had lost capacity) that he didn’t want to be treated for infections etc and would only go to hospital if it was something “fixable”, a broken limb or similar, but not an actual illness, he wanted palliative care only . People have to be allowed to die. Just because something CAN be treated doesn’t mean it SHOULD

Yes we have an advanced care plan in place with the GP that states no treatment for infection.

Don't think it's worth the paper it's written on though clearly.

This comes across as massively patronising (and the ICU story makes little sense).

I have also worked in care homes as a cater, a nurse and now visit as a specialist nurse. A person grants a loved one with POA for health and welfare as they know that person knows them well. Of course decisions can be made with the input from care staff but please don't dismiss the family and their views. There is no evidence in the OP at all that she sees her dad as a 'shell'.

I agree you should talk to his GP. You should look up the terms of an LPA or POA as there is specific information regarding treatment and withholding it. Certain conditions have to apply.

Sorry, just seen you have an advance care plan with the GP but you should talk to the GP.

Advanced care plan-that’s the term I can never get to lodge in my brain!
whilst the GP held dad’s, the home (who were good) asked for a signed summary of it from me (I held health&welfare POA which had come into play), to keep in his file. Is this something you can do?

Amd for the record I think the staff have been massively inappropriate amd crossed every line. Their opinion is for keeping to themselves!

If the nursing home feel that you are not acting in your Fathers best interest they should refer this to the Local Authority as a safeguarding issue regardless of who has POA. The fact that they have not done this suggests that this is a personal opinion of the individual nurse. I am sorry you are going through this.

I’m sorry you’re going through this @bonusjonasus

In your shoes I would be making the same choice.