If you have a relative with severe dementia.....

[Stonehengecalling]

If they are ill, why do you want them treated to prolong their life?

I’m a HCP who deals with dementia daily. In 20 years I’ve only had 2 families that have asked me not to treat their dementia suffering relative, which has resulted in a speedy death. Everybody else wants me to treat their mute, bed bound, incontinent, peg fed relative to keep them alive a bit longer. I don’t understand why.
I’m going to apologise now as I appreciate this post my upset some people, and that truly isn’t my intention. I’d also like to be absolutely clear that I’ve always followed family requests. I just genuinely don’t understand why some families are intent on keeping relatives who recognise no-one and with no apparent quality of life left alive with repeat courses of antibiotics?

I believe that the GMC guidelines are there for a reason and have witnessed up close when they aren't applied.

Maybe just following the guidelines would be great

[quote daisycottage]@Retiremental

Are you joking? Of course I reported it. Of course I asked for GP reviews, spoke to the manager, I even phoned the RCN.[/quote]
And what were the outcomes of all things?
If patients were still left in pain what did you do then?

What did I do then? I left.

I couldn't prescribe pain relief.

You do know that?

I have lost a much loved career over this issue.

Being helpless and unable to help a patient is a moral injury.

This thread isn't even about me.

I do need people to know what goes on though.

@daisycottage

I couldn't prescribe pain relief.

You do know that?

I didn’t suggest that you could.

But it’s incredibly frustrating that people like you fail to recognise their role in sub standard care. You recognised it, you made some attempts to address it but you didn’t advocate for your patients until their needs where met. I realise how harsh that sounds but it’s a recurring issue in end of life care for dementia patients, as evidenced by the many stories shared on this thread.
Can you not see the irony in you damning dementia care services when you were PART of that service? Part of the culture that allows people to die in distress? Omission and passivity are culturally ingrained in some clinical settings and it’s so damn frustrating.

So what was I supposed to do?

@daisycottage

So what was I supposed to do?

Fulfil your NMC requirements. Invoke your whistle blowing policy. Escalate. Report. Repeat. Escalate further. If you worked in Independent nursing homes report to the home regulatory body. Until patients were not suffering.

I reported and kept reporting. I contacted CQC and nothing was done.

I already suffer from several illnesses, if (when, both parents have it) I develope dementia how will my asthma be controlled? Are carers prepared to insert Vagifem into me to stop vagina pain? How, when I am mute and bed bound will I express that my medication for nerve pain isn’t working anymore and needs upping the dosage, or trying something else, without it being assumed that my increased agitation isn’t progression of dementia and being pumped with useless opioids? Being in constant pain from nerves, sore vulva from being left in my own urine, these are the things I worry will happen. On top of that the indignity and loss of self. I don’t want to become this, it’s a shame others want to force me to live in these conditions indefinitely because the alternative arguments make them feel a bit uncomfortable.

A bit uncomfortable watching a relative die in uneccesary agony

Personally I think there’s going to have to be an in-depth review and reform of how we treat people with no quality of life in old age. There’s a huge wave of us approaching this point now. I can see a real lack of capacity to provide even basic care, let alone music therapy or sensory gardens.

Our society can’t support the millions of us there will be in ten or twenty years time in terms of money or resource. We need to drop the sentiment and have an honest discussion about voluntary euthanasia.

Personally I think there’s going to have to be an in-depth review and reform of how we treat people with no quality of life in old age.

This. Sooner rather than later, too.

‘Are carers prepared to insert Vagifem into me to stop vagina pain? How, when I am mute and bed bound will I express that my medication for nerve pain isn’t working anymore and needs upping the dosage, or trying something else, without it being assumed that my increased agitation isn’t progression of dementia and being pumped with useless opioids? Being in constant pain from nerves, sore vulva from being left in my own urine, these are the things I worry will happen’

PV medications are routinely prescribed and administered.
If somebody is already on neuropathic agents it’s good practice to review and titrate the dose if there is evidence that they are no longer effective.
Opiods if prescribed, monitored and titrated properly are incredibly effective drugs at managing pain at end of life as well as at many stages of a disease trajectory.
Urinary incontinence is an incredibly common issue in both the ‘well’ aging population and in those with chronic or life limiting illness. Urinary incontinence can be easily assessed and managed by competent health care professionals to ensure dignity and comfort.

Why are we as a society prepared to write off dementia patients and accept sub standard levels of care? You talk about uncomfortable truths. The uncomfortable truths thus far are that these standards of care have been allowed to develop.

@daisycottage

I reported and kept reporting. I contacted CQC and nothing was done.

And what happened when you made a formal complaint about how your concerns were dealt with by CQC?

Totally agree @VinylDetective

I didn't report the CQC.

One tends to give up at that point. There is just no point anymore.

Why are we as a society prepared to write off dementia patients and accept sub standard levels of care?

It might be something to do with lack of resource and so many people having to fund their own care. When substandard care costs £1,000 + a week, God only knows how much the gold standard would cost.

Standards of care are poor due to chronic understaffed, lack of time and resources and staff who are either unsuited to the job or who don't see the problems. Many staff - including nursing staff and managers - lack the intellect to identify and know how to solve problems.

@daisycottage is simply stating the reality of working in an overstretched environment ie the NHS. I completely believe your experience @daisycottage. I’ve been there, under different circumstances. The general public think that there is a reporting and accountability system in the NHS, when really in many hospitals there isn’t. You can report it as much as you want and keep reporting up the ladder, but it’s extremely difficult in some cases to be heard. In the end it totally demoralizes you and you leave because you can’t go in day after day and treat patients in a substandard way.

Thank you to all who have contributed to this discussion. I have found it enlightening, helpful and very depressing.

Just to be clear at no point was I suggesting euthanasia, and certainly not murder, and one poster chose to call it. I’m simply advocating allowing elderly end stage dementia sufferers to die of natural causes in comfort (rather than keeping them alive with endless rounds of antibiotics).

Most drs were devastated when the Liverpool care pathway was abolished (thanks to the daily mail), and it has left us with limited choices in managing the type of patient I mentioned in the OP.

Friend's father was very ill with alzheimers and spent in his final few months in a specialist home. It was very good indeed but cost an absolute fortune. Just wouldn't be available to a lot of people sadly.

Why are we as a society prepared to write off dementia patients and accept sub standard levels of care?

I don’t think we are. Many patients with dementia do get wonderful care. (FWIW I run a marathon every year to raise money for a dementia charity). The point of the thread was to discuss end of life care for those with end stage dementia- and it’s really clear that we still have a long way to go getting this right for patients, families, carers and HCPs.