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?

@ButiLoveHim32 I did the Gold Standards Framework a few years ago and believe in it wholeheartedly, but I changed employer and the new place were abysmal when it came to palliative care. It just didn't feature for them and every death was a disaster, despite them having residents with progressive neurological conditions and other serious problems. I tried to make a difference, but ultimately failed. I begged them to do the GSF, but they didn't have the intellect to even see the issues and how they were causing harm.

Sadly @daisycottage I agree.
I have put it down to more people being involved in simple terms. The procedures are complicated and time consuming compared to when I started in care and that's causing people to suffer.
If someone deteriorates quickly out of hours, we used to call their GP, who would either be their actual GP or one from the practice, they knew the patient and the home and generally would visit (or ask a nurse from the same practice with the same knowledge) and give end of life care quickly.
Now unless the patient has reached that point during 'office' hours and enough time has elapsed to have end of life drugs set up within the home and they're added to the community nursing list, we are left with calling 111, who invariably send an ambulance. I've had ambulance crews baffled as to why they've been sent on blue light to a 98 year old bed bound patient in a care home. All we wanted to do was make that patient comfortable and settled, instead it turns into a circus of blue lights and intervention. Because the right boxes on a screen in the 111 control centre haven't been ticked.
In this situation, when offered intervention, most families will take it, because they are under the impression that it will help in some way, when it probably won't. It's an option between watching someone suffer to death because the right paperwork isn't in place, or intervention.
Like you say, an arse covering exercise.

@LindaEllen
Medicine and nursing is nothing more than an arse covering exercise now

Sadly you are right.

The really common case that springs to mind is the endless CT heads we have to do in patients from nursing homes on blood thinning medication who fall and hit their heads. They all get sent in (anything between 2-5 cases per 24 hrs in my hospital) For CT heads. NONE of these patients would be accepted for neurosurgery if their CT showed they had an operable bleed, they need to kept comfortable and let nature take its course, preferably back at their nursing home. If they have a non operable bleed they need to be Kept comfortable and sent back to the nursing home where they may or may not recover. If they have a normal CT they need to go back to their nursing home. So perhaps not sending them in in the first place might be a kinder course of action. Or perhaps we could consider why on earth they are on blood thinning meds in the first place (usually to prevent a stroke and keep them alive for longer).

A few years ago I challenged a colleague about the endless head CTs. His response was ‘you are right, but I’m not prepared to risk my GMC registration or put myself and my family through the stress of an investigation Just because a relative objects to the fact that we didn’t do a test that changes nothing’. Sadly Most drs practice like this. And judging by this thread I can totally see why.

@TheSeedsOfADream Thank you for taking the time to read my comment and for your kind feedback. Much appreciated

A virtually moribund person with end stage dementia whose physiological condition has been stabilised, would be given rapid assessment and discharged to a more appropriate setting paid for by CCF.

Bizarrely this didn’t happen to my mum (advanced dementia and all that entails). After 5 years in a care home she went to sleep one morning and when they tried to feed her she clamped her mouth shut against the spoon. I did not want her to go to hospital but the GP insisted. Once there we spoke to a wonderful consultant and team who explained that any treatment would only kick the can down the road (my words not theirs!) and they would keep her until she died, offering liquids if she woke and wanted them. She was in a lovely quiet single room and my siblings and I we were all able to spend time with her. She never woke up and died four days later having had the peaceful death she deserved after the five years of hell that she did not. I appreciate how lucky we were as obviously that can’t happen with most end of life patients, presumably if another patient in mum’s situation had come along straight after her then the room would not have been available.

I’m crying now thinking about her. My sibling had reservations about end of life directives and to some extent I feel I hid my views so as not to cause pain to him.

My dad had alzheimers and dementia from his early 50s till he died aged 70. He had no quality of life but he kept going. If he had needed resucitating we wouldn't have prolonged his life but his body kept going even though his mind was gone.
As much as I miss him I wish he hadn't suffered so long.

@MoodieMare

Oh god, yes. This scenario so many times. Always on a Friday or Saturday night.

I can only speak for myself, but I didn't realise before this awful journey that it's not as simple as a DNR. I can look back and see that the multiple hospital stays, IV fluids, antibiotics, even the protein high calorie drinks, have all extended life. It's not that I've pushed for unnecessary treatment, but I thought it was a normal trip to hospital at the time, stay for a bit, get treated, go home again.
Dementia is a terminal illness, but noone's ever explicitly told me that. No-one has given me the option to refuse treatment, and maybe I haven't realised how bad things are at the time. It just becomes normal.

@CherryPavlova, your arrogance is breath taking.(and I’ve read your bullying tactics on lots of other threads)

Good morning, OP
I remain sceptical of your experience. My professional and personal experience is entirely valid and gives me an understanding you lack I disagree that I lack understanding, but as you haven’t disclosed what it is you do I can’t have an informed discusssion with you.

The bit about revalidation applies to GPs and consultants or specialist registrars only. If you are a doctor, you are a trainee and a pretty junior one.. Yes. I’m one of these, and no I’m not a trainee. I’ve been a specialist for more than 10 years.

HCP I decide if they get CPR. We always discuss a ‘treatment escalation plan’ (TEP) with the family.Whilst it is a clinical decision, it is only about management should their heart or breathing stop. It is decided in discussions but always signed off by a consultant within 24/48 hours. It is not a unilateral decision but a multidisciplinary one. You talk about it like some maverick sweeping in. It is based on futility and quality of life is not yours to judge regardless of your God Complex

You are totally wrong. I do get to make this decision unilaterally. I always try to discuss with the family, but it doesn’t always need to be a team decision. There only needs to be one signature on the form.

It would also be pretty unkind and unethical not to treat conditions that were symptomatic.

Again you are wrong. It would be unethical not to treat the symptoms, but not necessarily the causing condition. Unethical not to treat the agitation caused by a head injury (see pp), entirely ethical not to send a 90 year old for neurosurgery for which they have no hope of recovering. Entirely ethical to treat agitation caused by a chest infection. Not unethical not to treat the chest infection in a person with a poor quality of Time limited life.

If family members are insistent that we do CPR then we will usually do one round and then stop, just to keep the peace, rather than point blank refuse. Absolute nonsense

Really not nonsense. Thankfully increasingly rare, but I’ve seen it done.

Most families agree for no CPR once the survival rates are explained and the fact that their relative wouldn’t get an ITU bed (you need to live a reasonably independent life and be in good health to qualify for an ITU bed). . This again is rubbish. I’ve seen a 100 year old in critical care following a NOF

Really? Do you know anything about the NHS? There are exceptions to every rule, but please don’t make posts suggesting that it’s totally normal for people over 100 to go to ITU.

If a person at any stage of dementia has a very uncomfortable urinary tract infection or infected wound, they need to be offered symptom control, which is likely antibiotics. You are suggesting supporting an uncomfortable euthanasia, which is unacceptable and unethical.

No. Antibiotics are not symptom control, they are a treatment. Symptom control would be pain relief and sedation and letting nature take its course. It’s not euthanasia. It’s allowing someone to die of natural causes.

Your post is likely to scare others, who might believe you are a doctor, into thinking that if their parent is a bit muddled no clinical care will be provided when the truth is they may have several happy years left. They may think it’s no point taking confused granny to have their chest infection treated as they’ll not be given antibiotics.

I’ve made it very clear that if family or the patient wants treatment they get it. The whole point of the thread was to understand WHY people want to prolong life with no quality.

The GP setup often doesn’t work either. The GP called in the middle of the night is often someone with no knowledge of the patient and (I suppose not unreasonably) doesn’t want to be the one who makes the final call on the patient. Shunting them off to hospital resolves them of any responsibility. The PP who called it arse covering was blunt but in many cases correct (former HCP here but more importantly daughter of mother with advanced dementia).

I'm not convinced your a doctor purely because you seem to have no knowledge or grasp of human psychology and what families think or feel when going through a traumatic time and crisis admission.

Doctors are people, and all people are different. There are doctors who don't have a good "bedside manner", as well as doctors who do.

Having seen what my late MIL (and DH and SIL) went through they would have appreciated tthe OP's plain speaking.

I'm glad this topic has been raised because, clearly there are a lot of differences in opinion, and differences between how different healthcare trusts handle patients with dementia.

MIL manages to stay in her own home until 6 months before she died. At that point she wasn't eating or drinking, she was doubly incontinent, she wouldn't wash, she didn't recognise anyone and could hardly talk. She became very aggressive and stubborn and it was as if she had had a personality implant.

We live 150 miles away and DH used to stay with her for a week a month to clean the house, shovel up shit off the floor (literally) and do various jobs that MIL wouldn't allow the carers to do.

After having had two TIAs and several falls she reluctantly went into a care home at the age of 89, having been diagnosed with alzheimers 6 years previously. After having a fall in the care home and breaking her hip (we don't blame the care home at all as it could have happened at home) she declined even more quickly.

We visited her a few days before she died. Hearing her cry out with pain while the carers dressed her in the morning was awful. The last time we saw her she was sleeping in her chair in the lounge, and we couldn't wake her up at all.

@Ginfordinner except on MN where the NHS is the holy grail and anyone who says anything bad about the NHS or it’s staff should be sent to hell, and anyone who works in the NHS and doesn’t have the patience of a saint or dares to say anything negative about it is ‘in the wrong job’.
Doctors are people, and all people are different. There are doctors who don't have a good "bedside manner", as well as doctors who do

I had a colleague say to me years ago ‘the thing about drs is that they do such a great job of pretending they care that people actually think that they do’.

I was totally shocked at the time (I’d only qualified about a year). Not so shocked now. I know loads of drs who don’t enjoy their jobs, but after 20-30 years a career change would be life changing and they usually can’t afford it. We are all human.

the last 6 years have been awful as she got so nasty and sometimes violent. She really isn't the person I grew up knowing, she is a shell

The personality change is one of the saddest things about dementia. My dm was the most delightful, easy going person loved by all who knew her. Before the dementia advanced she became rude, intolerant and downright unpleasant - for example she was gratuitously rude to our charming solicitor who’d dealt with our family for years and was a friend.
It was very painful to watch and must have been horrid for her.

No. Antibiotics are not symptom control, they are a treatment. ‘Symptom control would be pain relief and sedation and letting nature take its course. It’s not euthanasia. It’s allowing someone to die of natural causes.’

What training have you had in palliative and end of life care? Are you saying that if a patient with dementia presents with pleuritic chest pain, then you would refuse to prescribe an antibiotic in an attempt to relieve that pain?

FWIW I don’t believe that you are a doctor. I actually hope that you aren’t. And if you were a doctor in my setting you’d get your ass handed to you on a plate for that statement alone.

I certainly don't think the NHS is the Holy grail. Poor care should always and consistently be called out. And yes I have met numerous people over the years who shouldn't be looking after an animal let alone people and its clear to see from peoples exeriances here, that unfortunately there are far too many of these people still working.

OP = not arrogance or bullying but well informed on the subject.
I shall not get into a much protracted internet debate because it is a discussion that can cause significant distress to relatives and those facing a future living with incurable disease.
Your misinformation and lack of respect for people, the dismissive tone you describe people with and failure to understand the multi-disciplinary approach to end of life care is staggering.
A unilateral decision except in an emergency would be appalling practice and not in line with any trust policies.
Nobody is talking about artificially prolonging life - that is tabloid hook lines.
Good practice talks about a dignified approach to end of life care with due consideration of the best interests of the patient and the wishes of the family; it should be planned, multi-disciplinary, have senior leadership and review and be about making people's last year/months/weeks/days as positive as possible.

These are not failed, incontinent, mute lesser beings - these are spouses, mothers, fathers, grandfathers and grandmothers.

To peddle tabloid fiction is unkind in the extreme.

Another reason many end up in hospital and therefore treatment given, is because of how social care is arranged, and because of the lack of speed addressing issues that arise.
Someone in a residential home may become a nursing patient very fast, needing more than the residential home can provide in terms of care. The process of re-evaluation takes a long time, and for every day that takes, the lack of nursing intervention takes a toll. Often they need to be admitted to hospital after a period of time, to receive the care they need, when a timely transfer to a nursing home would have been a much better option.
A lot of people don't understand the distinction between nursing and residential care, and to be fair, though there is support from the community teams, again this takes time.
Elderly care is a national disgrace really. You have people with minimal training on minimum wage at the sharp end, often left to flounder trying to do their best for those in their care, and profit at the heart of the business rather than people.
Until that changes, nothing will.

@Retiremental many people do actually have written into their advanced statement or anticipatory care plan that they do not wish to have antibiotics administered, no matter what the reason. Plenty of people with dementia who have do not get given antibiotics, when in reality yes, it could alleviate a lot of suffering however it also prolongs life.

Surely there isn't any need to be so rude to the OP? I'm betting that you wouldn't be so rude face to face.

@CherryPavlova

I don't know what planet you're on, but what you describe has absolutely not been my experience.

I've encountered countless absolutely disastrous approaches to end of life care in my time - the worst have all been recently as well.

[quote AwaAnBileYerHeid]@Retiremental many people do actually have written into their advanced statement or anticipatory care plan that they do not wish to have antibiotics administered, no matter what the reason. Plenty of people with dementia who have do not get given antibiotics, when in reality yes, it could alleviate a lot of suffering however it also prolongs life.

Surely there isn't any need to be so rude to the OP? I'm betting that you wouldn't be so rude face to face.[/quote]
And how many people actually have ACPs?

The OP claims to be an A&E doctor. Seeing a snap shot of patients at a low point, ill, increasingly agitated because of pain and infection, potentially treatable and reversible causes.

As Cherrypavlova so eloquently describes, the one man band of life and death decision making described by the OP is more commonly found in the Daily Mail.

And yes, if the fictional doctor declared, on my shift, that they weren’t prescribing antibiotics for symptom relief in even a dying patient when it was clear that to do so would potentially relief pain and distress, then yes. They would get their arse handed to them on a plate in the real world as well.

@CherryPavlova

OP = not arrogance or bullying but well informed on the subject. I shall not get into a much protracted internet debate because it is a discussion that can cause significant distress to relatives and those facing a future living with incurable disease. Your misinformation and lack of respect for people, the dismissive tone you describe people with and failure to understand the multi-disciplinary approach to end of life care is staggering. A unilateral decision except in an emergency would be appalling practice and not in line with any trust policies. Nobody is talking about artificially prolonging life - that is tabloid hook lines. Good practice talks about a dignified approach to end of life care with due consideration of the best interests of the patient and the wishes of the family; it should be planned, multi-disciplinary, have senior leadership and review and be about making people's last year/months/weeks/days as positive as possible. These are not failed, incontinent, mute lesser beings - these are spouses, mothers, fathers, grandfathers and grandmothers.

To peddle tabloid fiction is unkind in the extreme.

I'm sorry, but I feel that you are being unnecessarily agressive towards the OP

I’ve not rtft sorry but I have both parents with dementia. My dad is end stage, and has been in a hole for just over 5 years but has had dementia for about 15. Physically he was very fit and young when he first started getting obvious symptoms. Unfortunately it’s made him cling on longer than he really should have. He’s now 79. Anyway back when he first moved into the home the gp rang to ask what we wanted to do re dnar etc and I had a dnar put in his file but also said I would want to decide on antibiotics etc as and when they were needed. However, when it came to it, he developed pneumonia. Now had I been consulted bar the time and also made aware of the result of keeping him alive due to the pneumonia I would have put a stop to it but unknown to me they gave him 4 lots of antibiotics. Just to keep him alive. Prior to this he was walking, talking (nonsense but talking nevertheless) , attending to the toilet sometimes. However, although he ‘survived’ he could no longer walk, could no longer talk, and was completely doubly incontinent. All I can say about his quality of life now is he doesn’t have any, he’s breathing. That’s all I can say. It’s horrific. The carers are wonderful and they genuinely love him and want him to live and I think this has been a bit of a downfall for him really. My mum this year developed worsenidjg dementia and is now in the same home. I am denying ALL treatment, she in the other hand has many many comorbidites and I don’t think she will continue to ‘live’ with dementia long enough to get to the same terrible stage as my dad. So in essence, I agree with you op. It’s fucking shit.

My Dad was diagnosed with Alzheimer's last September and deteriorated very quickly. Just as we were getting over the shock of that he then had a major stroke exactly this week last year which left him disabled and apparently not fully conscious. He had no quality of life left that was obvious. Doctor said just because we can treat doesn't mean we should. We all understood what this meant and accepted they would let him die. It was absolutely awful but he faded away within 10 days. I felt guilty and still do but I also remember he had nothing worth coming back to, as it were, and we did the right thing for him. However when MIL had a major stroke she woke from her coma and started to make improvements so it was a battle worth having. Not the same thing at all.

I'm a bit weary of the ad hominem attacks on the OP from posters claiming they're the real HCP. Look, you're all just posters on a forum, so maybe park your ego at the door and engage with the issue rather than parade your apparantly superior credentials? The OP has started an important discussion. I think we all like the idea of a 'lovely' death, but for many, dementia is far from lovely and is incredibly distressing for both the patient and their families. If their body keeps working, there is nothing easy or pleasant to be done.

I try not to, but I do feel my blood pressure rise when well meaning posters on social media post about lovely music and sensory gardens and village greens and such like for dementia sufferers. For our family member, such things could not be more irrelevant - they are a millions miles away from the scared, aggressive, angry, incontent reality of his existence - it is no longer a life. The care home encourage him to eat and drink. They have to. So he lives on. In hell.

Well, I now am quite satisfied that you do know what you're talking about, OP. I think my problem was that you seemed to be framing it as doctors being forced to do what families want against the patient's best interests. I think what you are really saying is that there is a problematic combination of families not really understanding the stage that the patient has reached in terms of quality of life combined with a local culture of giving in to assuage family guilt/avoid an investigation. I know a couple of GPs and a couple of acute ward consultants all of whom would 100% agree with you on quality of life. I think maybe what you don't appreciate is that families often cannot be objective about this because as others have said it is very hard not to feel that you are at least subject to the accusation that you have allowed a doctor to kill your relative. Of course not intervening is not killing but that is quite a sophisticated concept that not everyone fully understands even in principle let alone in a specific personal situation with someone you love. And it is harder still if you are providing personal care yourself because you feel you are subject to the accusation that you have agreed to it for an easier life for yourself. This is why the decision rests with doctors and I think from what you are saying the solution is either much clearer support for doctors making these decisions from the GMC or more robust decision-making from doctors in the face of passionate resistance from families where the doctor is quite satisfied that the patient would not benefit from further treatment or resuscitation.

By the way, I was asked about this for a close relative yesterday morning and was very surprised and distressed (said relative has only just become confused, is in hospital with an infection and is expected to respond to treatment and be home soon) and uncertain about how I handled it, which may not have helped my response to your thread. I just was not expecting to have to express a view at this stage although perhaps that was naive of me.