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?

The decision not to treat an infection with antibiotics has not been taken by the OP and her sister in isolation or because they felt like it.

A medical professional, most likely their father's GP has discussed the options with them, and has most likely raised this course of action and the OP and her sister have considered their father's wishes, as documented in his advanced care plan. The GP, the family, and potentially the senior home nurses have agreed a course of action in OP's dad's best interests.

A random nurse doesn't get to over-ride that. And their is absolutely no suggestion that OP's fathers care is anything other than appropriate.

I didn't say it was inappropriate. I don't believe it is inappropriate. I was pointing out that if the nursing home believe that the POA is acting inappropriately there is procedure in place that they should follow. Not just guilt trip a family member that is going through a particularly difficult time.

@JustAMinutePleass
It is not your place to advocate , the patient has a family who know their wishes and know that person more than you ever could.
How rude and patronising.
I've recently went through this, agreeing to withdraw treatment is no easy decision and for you to assume you know better is appalling.

This is such an interesting and helpful perspective, thank you.

Two of the nurses who cared for my gran came to her funeral and were truly emotional.

It must be really tough to see your Dad go through this OP, I'm so sorry.

I'm a nurse and personally, I wouldn't have said this to a relative. It's very insensitive. Is she even a nurse, is she qualified to be commenting on any aspect of his medication?

I would, as pp's have said, wait before raising another complaint about the matter. You don't want any of the time that you have left with your Dad taken up by the stress and headspace of a complaint. But once things have settled, yes, I would be putting in a formal complaint.

I don't agree with JustaMinutePlease but I think she should have the right to put her perspective without getting slated

I have worked in a dementia inpatient ward and the staff looking after the patients day to day are bloody saints to do the job they do with kindness and compassion despite often getting hit and verbally abused and criticised from all sides and yes we get to care about people deeply because you cannot actually do this job well unless you do. People getting paid minimum wage to do a care job don't always have a perfectly detached view and I would prefer they err on the side of compassion than towards Harold Shipman

If a family member of mine needs care I would rather it was from someone like this poster who genuinely cared about them and valued them and would be sad when they died than from someone who was indifferent because it's a faint line from indifferent to abusive

Of course it is the family's right to make DNAR and treatment decisions but it's helpful to understand why staff dedicated to caring for very disabled people might want to do everything they can for them. I would rather that than they can't wait to see the back of them

care home staff are often terrified of being reported for abusing or neglecting people. Its a well justified fear as safeguarding are hugely alive to institutional abuse so sometimes staff feel they cannot stop intervening for fear of being called neglectful

Also families have widely varying views on what they want done. we have people regularly object to DNAR and wanting 'everything done' for people even with very advanced dementia. look at the outcry about people dying of Covid in care homes. so whilst on this thread/ Mumsnet the opinion is let them go (and its my opinion too actually) you should realise it isnt necessarily universal or majority

So yes the nurse overstepped and should not have said what she did but the max I would do about it is a word to the manager or the GP and probably not even that. I think I would remain secure in my decision and ignore her opinion and be glad she cares about my dad enough to have an opinion.

Well, I'm glad you don't work in care any more. This is totally inappropriate.

I would prefer they err on the side of compassion than towards Harold Shipman

Another inappropriate post.

It's IS compassionate to allow people to die with dignity and his they want to.

And the binary choice is not between compassion and actual murder. Totally ghastly thing to say.

I have a living will and I hope whoever has to deal with it understands that it's my right to choose.

I definitely think you need to chat to the RN or Unit Manager (even better) about nurses sharing emotionally-based decisions like this. It was unhelpful, unsolicited and judgemental. She needs to stay in her lane.

Same
Having seen both my Nan and my mum die with dementia, I've done an advanced directive
I don't want any life prolonging intervention including antibiotics if I have dementia, Parkinsons, a terminal illness or severe brain injury

My mum died with sepsis as we said no antibiotics for her pneumonia

Caring deeply about people who you give intimate care to every day maybe for years and years and feeling attached to them is 'totally inappropriate' is it??

We want people to care and look after our loved ones to a high standard for very little material gain but God forbid they care too much and start to have feelings or worse still opinions.

I'm glad she posted and I'm glad she cared.

I'm going through it right now with my own mum. The hospital did everything they could, but last week she, and we, had to agree to stop treatment. She came home today, to die peacefully. She's downstairs sleeping now and we have 24 hour live in care until the end.

She made the decision, and was asked several times while she still had capacity, and I'm glad they honoured her decision.

It will be sepsis probably that kills her, or maybe her heart will just stop, or maybe her kidneys shut down. But she won't know because she has ongoing pain relief. She's still with it for now, but the sedation will gradually increase as her organs fail more.

The post is inappropriate.

And judging the families of people you care for is inappropriate.

Caring is not inappropriate. But this person overstepped.

Yes it is compassionate to allow people to die with dignity but in fact most people even with advanced dementia and frailty don't die just from having some antibiotics withheld for a UTI or a chest infection. People live with these illnesses for years and years and need care. It's not just Drs excessively trying to prolong their lives. I am no fan of that at all but often (as OPs dad has in fact demonstrated) people don't just die despite being old and frail so unless we legalise euthanasia we are still going to need people to do the caring.

The actual problem is that we got better at saving younger people from heart attacks and cancer so that more people are living to advanced age and getting dementia and other neurological diseases but I don't think many people would decline cancer treatment in their 50s and 60s to avoid dementia in later life

I was just trying to stick up for the perspective of care workers and say that perhaps piling on someone who does a hard job for overstepping and caring too much is uncalled for.
I, and at least one other poster, thought it was interesting to hear the opposite perspective, even if I don't entirely agree but if you are more comfortable to shut it down that's your prerogative

Cross post

I am sorry about your mum VanGoghsdog

It's a year to the day since my mum died in a hospice

Maybe neither of us ought to debate this stuff today

People are not just shells being wheeled from bed to chair that’s a horrible expression

OP I think the nurse was very unprofessional.

@JustAMinutePleass ""We were absolutely devastated when he went into icu and the doctors (and his children) agreed not to resuscitate"
I'm puzzled by this comment. I appreciate you will become fond of patients. But what was the future for this chap? I'm also curious about his age."

No matter how twinkly someone appears in front of others, you don't know what's going on their head. Mum was a very popular person in her care home but she's very cross she's still alive. A few years ago I had to ask her to stop talking about how much she wants to go.

It is a horrible expression. Honestly though I’ve seen relatives go through it and worked in care homes and it can be very apt. I really hope we have better options when my “second childhood” rollsaround.

This situation is about not treating an infection in someone who is at the end of their life. This is in-line with their stated and recorded preferences and their families agreement.

Can we please not suggest that "caring" staff would challenge this. It is not caring or empathetic for carers to suggest something that fits with their own beliefs when it is contrary to the patients wishes and is unprofessional. The NMC code of conduct requires nurses to balance the need to act in the best interests of the person with their right to refuse treatment.

As others have suggested the "nurse" in this situation is more likely to be an unqualified assistant who has crossed a boundary. Registered nurses would have been involved in the decision making and they should be communicating this to junior staff.

Apologies - can’t work out how to quote just the relevant paragraph…

This is exactly my experience of end of life care in a lovely residential home. I’ve wished many times since that I’d stuck to my gut feeling and insisted on a move to a nursing home or hospice. But they had had many happy years in this home, and all the staff were like family to them.

Once the GP and family had all agreed that further hospital visits/treatment were futile, “the good stuff” was prescribed…But, because no one was qualified to administer it, the district nurse had to be called. (The GP surgery was less than 100m down the road) and by the time they arrived, many hours later, my relative would have fallen asleep through sheer exhaustion, its hard work being terminally agitated. So they’d go away…and after 7 days the drugs had to be returned to the pharmacy, no doubt destroyed too, thus the while prescribing process had to start again…they spent roughly 3 months ‘dying’ i think in significant discomfort, with just liquid paracetamol until the last few days. It haunts me at times.

i hear you OP@bonusjonasus i worked in palliative care and can remember a very similar situation where the person near end-of-life was experiencing horrific excoriating diarrhoea from repeated courses of antibiotics. The family member didn't want this for their relative and the conversation I had with the nurse in charge was along similar lines to yours. Sometimes even staff in care homes with people at the end of life lose sight of what the aims are of treating someone, death isn't to be feared and the aim is to make this a peaceful and comfortable as possible.

@bonusjonasus it might be worth seeing if your local area has an end of life team/service. When we were in a similar position with MIL, we were referred to something called the ECHO team. They were massively helpful. They also talked to the care home staff to explain how decisions had been made. It sort of gave us that extra reassurance that we were doing the best we could when making difficult decisions and having the full backing of a medical team made everything feel a little bit less terrifying.

I don't say that to question your decisions - it sounds like you are an amazing group of siblings with your DDad's best interests as a priority. It just may stave off any judgement from the care home staff.

I send you hugs - this is a really hard position to be in.

This is really inappropriate. Of course his family know him better - they've known him for decades!

And you think a carer has a better idea about medical care than a qualified medical professional? Do you have any idea how brutal resuscitation is and how inappropriate for someone that frail?!

There’s no eye twinkling going on in the OP’s dad’s case, and she clearly knows him better than anyone as she is visiting most days.

I am just thinking, it is quite likely that this GP attends other residents in this home. I think the GP need to know if the difficult conversations they are taking the trouble to have with patients and their families about advance plans are being undermined by insensitive, unprofessional members of staff at the home.